I blog about life as an Autistic female with Bipolar 2, giving parenting & marriage my best shot. I am a passionate Advocate for Autism & Mental Health. I'll make you laugh & cry. And I promise you the truth, the whole truth & nothing but the truth.
I don’t usually share other people’s work on my personal blog but the article at the end of today’s piece really moved me.
Instead of feeling sorry for people that are estranged from their family, notice the courage it took for them to break free. Admire their determination to live a peaceful life free of judgement and abuse. Listen to their journey and celebrate their achievements.
In the beginning, estrangement is ugly. Angry, bitter, tears and snot. What if’s and why’s bounce off the walls. But the storm does pass and for me it passed much quicker than I expected.
It’s been over 7 months since I saw or heard from my Mum. In the beginning the pain was searing, unbearable. But by the start of December I suddenly realized that I was feeling positive. I was sleeping better, the nightmares tailed off. I know it sounds crazy but I look better, I look younger! I’m still packing too many pounds, but my eyes are bright, my skin is smooth and clear and my smile comes easily.
For 45 years I persisted in trying to maintain relationships with my birth family because I believed that’s what I was meant to do. And I know I didn’t imagine the happy memories I hold onto – there were good times for which I’m grateful. I talk about those good memories with my sons and we laugh at photographs and I remind them that those good memories are forever.
However, most of the time during that 45 years I carried a stone in my chest, a heart full of hurt. The criticisms. The judgements. The take, take, take and get little or nothing back. I never felt understood, never felt good enough. I naively tried to solve everyone else’s hurts whilst neglecting my own needs. In my birth family, secrets and lies were the fabric that held us together.
The hardest thing for me was that I ALWAYS wanted to be a better person. I loathed my hot temper and hypersensitive soul. My brain was full of chaos and dark. I knew I was different but didn’t know why. I wanted, I needed to understand myself so that I could heal my million hurts and be the person I wanted to be, a version of me I could like and be proud of. I wanted to be the BEST me, not the broken, damaged, shadow of me.
In contrast and without exception, my birth family wallowed in their woes. It was easier to blame others than tackle bad habits. Easier to let people down than change their behavior. Easier to keep repeating the same horrible mistakes than to take control and reshape their destinies.
But that’s what I did. I changed my destiny. I searched and fought for answers so I could understand my neurology. I was rewarded with my Autism diagnosis as well as one for Bipolar 2 disorder. How my heart sang! Finally I had answers, explanations. It was like someone had given me the rule book, the manual to my brain.
I started to make more thoughtful decisions and lifestyle choices. I stopped forcing myself to socialize when I’d rather be at home with my boys. I started carving out regular time for myself to explore my passions in photography and writing. I gave up alcohol completely – too many years using it as a crutch to enable me to attend social gatherings. I took control of my anxiety and started driving my first car, finally using the license I’d earned years before.
I even got a job training other people about Autism. After years working in big corporates it felt so empowering and rewarding to give something back to real people. People like me. Helping them understand the Autistic brain is both a privilege and a passion. In those 3 years since I received my diagnosis and with the unwavering support of my lovely husband, I carved out a calmer, happier more gentle way of living that works for me, N and the boys.
Interestingly, the more I moved forward and whilst my confidence and self esteem grew, my birth family became increasingly irritated by my evolution. My openess about my needs as an Autistic person and my determination to protect my fragile mental health, saw me patronized and ridiculed. My sobriety was seen as spoiling their fun. My decision not to host big family gatherings (since the cost to my pocket and my emotional well-being was too high) saw me labeled as selfish. I can’t think of one occasion when any of them shared a genuine ‘well done’. My efforts were ignored and success went uncelebrated.
When I tried to use myself as an example, to show them what can be achieved with hard work and a commitment to change, I was rejected. How dare I criticize them, they were just fine being miserable, self medicating, blaming anyone and anything except themselves.
I get that my honesty and directness is unnerving. But to me it was a no brainer – don’t hurt the people who you love and who love you. Be better, be kinder. Commit to change. Stop lying. Because the alternative is being stuck living that tired and dusty lie that has passed through generations. Let me tell you, it’s a misconception that you must put up and shut up!
So whilst my recovery from the act of estrangement may seem quick, I now realize that I’ve been slowly cutting the strings, untangling myself, for the last 3 years, ever since I got my Autism diagnosis.
Of course it still makes me sad when I hear that some of my brothers persist in leading angry lives, hurting partners past or present, teaching their kids that conflict is normal and pretending to themselves that everything is ok. I think of the innocent, fun, loving little boys they were and I can’t blame them. We had no role models. We just learned to get by.
What I want to say to them is, live well. Be kind. It’s never too late to change, to improve, to grow. Don’t repeat our parents mistakes. Pity them if you want, make excuses for them, just don’t BE them.
As for my Mum who I loved with all my heart and invested so much time and care in….the Mum who repeatedly refused to discuss or revisit my hurts, who denied, denied, denied and in doing so abandoned my beautiful sons too….I only wish you well and hope one day you can forgive yourself.
Pride is a dangerous thing. If you are too proud to look at your actions, to admit mistakes, to say sorry, you don’t just risk losing the person you damaged, I think you lose yourself too. Our children are only 6 and 9, but even they marvel that their Nanny hasn’t come banging on our door begging for forgiveness.
Still, that time has passed and as the article below describes, we have found new family now. Fellow parents of children with additional needs. Fellow cat lovers. Hockey team mates. The teachers, cub leaders and swimming tutors who help our boys achieve their potential. The work colleagues who have our backs. Maternal and paternal Aunties who keep us in their thoughts and hearts. N’s mum & stepdad, his siblings and their Littles – they are the ones who have helped us heal and are on the journey with us.
So anyway, read the article, it’s seriously good. Estrangement is ugly and painful and sad but coming out the other side can be truly beautiful.
‘This is a thing that is hard to articulate. Some people don’t feel healed by forgiving people who hurt them, because that’s what they kept doing, over and over, and it only led to them getting more hurt. Sometimes you feel healed when you’re finally brave enough to say ‘This person was horrible to me and I did not deserve that treatment and I DON’T have to be ok with it’
‘For people who say I have to forgive everyone ‘for my own sake’, NO. I don’t. I worked hard for this anger. I worked hard to love myself enough to hate them’.
These anonymous quotes were shared in an online group I belong to, for estranged adult children. And they got me thinking, in a positive way.
They got me thinking about how important it is for good mental health to allow yourself to experience the full range of emotions. Because every emotion has a purpose and a role to play.
As a survivor of trauma and family abuse, I’ve had well meaning friends and family tell me that I need to ‘move on’ ‘allow myself to heal’ ‘offload my anger’ ‘forget the past’. Even my psychologist guilt tripped me recently by asking ‘what positive things could you be doing for yourself if you weren’t investing energy in being angry and sad?!’
And I’ve been trying you know, trying to take all this well meaning advice and let the negativity run out of me and embrace the positive, because I have so much to be grateful for.
But then I read these quotes and I saw a comment someone made referencing a Disney film I love, and I realized that how I’m feeling, is ok! That it is ok to feel sad and angry; as long as these aren’t the ONLY things I’m feeling.
For anyone that’s not see the glorious Disney/Pixar movie ‘Inside Out’, it’s cleverly set in the mind of a young girl named Riley, where five personified emotions—Joy, Sadness, Anger, Fear, and Disgust—try to lead her through life’s challenges as her family relocate to a new city.
One of the things I love about this film is that Joy try’s to lead and control the other emotions, fixated on maintaining Riley’s happiness. But it’s only through experiencing the full range of emotions, and especially sadness, that Riley is able to admit her concerns to her parents and begin to settle into her new home and school.
Growing up I was fixated with the idea that I was responsible for everyone in my families happiness. I believed I could ‘fix’ my parents and save my brothers. I was all about putting on my brave face and focusing on the positives. I thought everyone had the capacity to feel remorse and offer forgiveness. I thought laughing about the fear and the violence I experienced made it less powerful. I made excuses in my head for my parents behavior. I pitied them and tried to convince myself that they loved me because the alternative was unthinkable.
But of course I was wrong. The hefty responsibility for my family was something I was groomed to feel from a young age. But as I approached high school and puberty, as I observed how other people lived and interacted, I realized my life was NOT ok, it was NOT normal and I was NOT going to put up with it.
So I was an angry teenager. Angry and resentful. Still pitifully immature and naive and in slavish love with my family. But I was also filled with contempt for the physical and emotional abuse that was part of my day to day life.
Fast forward to now, and it’s taken years, many years, to have the courage to embrace my anger and use it seek estrangement from my birth family. In fact it’s taken 45 years, to stop forcing myself to forgive them.
It’s taken 45 years to realize that my mental health would never recover if I kept allowing myself to be manipulated and guilt tripped and forced into taking responsibility for people who don’t love me or my own little family I’ve created. We were just a useful resource to be exploited.
And as I write this down I realize that my sadness is less. My anger is less. I feel calmer. I feel unburdened. I feel a beautiful closeness to my husband and children. I am finding myself again. I’m rebuilding my career.
I still miss them. I still wonder about them. I still look at photos and remember happy memories because there were happy ones too. I wish good things for them.
I still feel betrayed and tricked. Incredulous at the lies. Shocked at the cowardice. Confused that they aren’t capable of remorse or regret. Pride is worth more to them than the apology and acceptance I’ve searched for my whole life.
And this is all ok. There is room in my heart and my head for all these emotions. They all have a part to play in my recovery.
As human beings, we tend to find other people’s negative emotions difficult to deal with. Tears, anger, the deep sadness of depression…they freak people out. Even the people who love us the most can struggle to deal with our darkness.
I’m sure you’ve all said (or been told) at one time or another ‘stop crying’ ‘don’t be angry’. And it’s usually done in a well meaning way isn’t it? But maybe those tears are the key to overcoming grief. Maybe the anger is the trigger for that person to make positive changes in their life.
So when I spoke to my psychologist today and he asked how I’ve been using my positive energy, I told him about the photos I’ve taken, the job interviews I’ve had, the new course I’ve just run. I told him how happy the boys were at Christmas and about the beautiful cards they made for my birthday. I told him how close I feel to my husband because we are such a good team and we laugh a lot more these days.
But I also told him about Riley, about ‘Inside Out’. I told him how Sadness saved the day and how all my emotions have a role to play to ensure I achieve good mental health. And he agreed with me.
So if you haven’t watched the movie, please do. It speaks to all humans and is especially important if you are raising children. Plus its colorful, funny, sad, happy, visually stunning and wonderfully original!
Apologies for my silence on here, I haven’t quite had the headspace for writing the last few months.
Every time I’ve felt like putting pen to paper, sadness and anger flooded the page. It made me feel gross, like I was spreading negativity by sharing my dark thoughts.
So I’ve been trying to figure out my new normal, establish a routine post estrangement from my birth family. I’ve been trying to heal.
I attended a fantastic workshop over Zoom last weekend, led by the charity ‘Stand Alone’. Please look them up if you’re struggling with estrangement from family members.
It did me the world of good meeting others in a similar situation. Suddenly, I am not alone. The people I met are good people. Kind, empathic, intelligent, compassionate. I realized I am in good company.
But that’s not what I want to talk about today.
I’ve also been pin-balled from one clinician to another while they try and work out what’s caused my blood clotting disorder. If there was one positive to breast cancer it’s that it cured me of my phobia of needles. Which is good, because I’ve been stabbed and pricked more times than I can count the last few months.
But I don’t want to talk about that today either.
I’ve been participating in weekly trauma therapy with an NHS psychologist. He’s a really nice man. Easy to talk to. A good listener.
I’ve only seen his eyes because the rest of his face is hidden by his mask, but his eyes are kind. Sometimes it seems they are filled with tears and I think ‘blimey is my life really that bad to make a grown man cry?’ Maybe he just has allergies. Who knows.
What I do know is that it hurts less with each new day. Talking about it strengthens my resolve. It makes it easier to embrace my freedom and throw my energy into my own family, the family I’ve built with my husband.
And that is what I want to talk about today.
Because despite all the horrible horribleness that I’ve lived through, I would do it all again in a heartbeat as long as my husband and I could raise our beautiful boys together.
Children are a gift, a true blessing. They are not possessions. They are not our servants. They are not spirits to be broken or tamed. They are not robots to be controlled, nor animals to be caged. They are not sent to achieve the things we failed at. They cannot hold together broken relationships or save broken souls.
Why didn’t anyone tell my parents this??
My Auntie shared a poem with me, many years ago, about how children are yours on loan and that a mother’s job is to nurture their independence and set them free. At the time it made me cry, I felt so terribly sad imagining my children of the future, if they ever came into existence, and the fact I would have to let them go.
In fact I put off having children for many years because I was afraid I would be a terrible mum. I was afraid I’d be like my parents. I convinced myself that my life was better without little people in it.
By the time I married my second husband and realised I did want children, I was in my mid 30’s with the nagging tick of my biological clock playing in the background like my personal backing track.
I got lucky because it turns out I could fall pregnant really quickly. The first time we tried, we were pregnant within a few weeks. Naively, I thought getting pregnant was the hard part. No one tells you that staying pregnant is the real journey.
To find out at our 12 week scan that our baby wasn’t developing properly, was the most shocking and painful thing I think I’ve ever experienced.
Our first son Pablo, had a rare lethal chromosome disorder, Triploidy. He had three of every chromosome, a destructive cocktail of genetic information. Triploid pregnancies usually end in early miscarriage, but Pablo was stubborn like his Mumma.
He stayed around long enough for me to collect his scan photos, hear his racing heartbeat. Long enough for me to fall forever in love with the promise of him.
But he did far more than that. You see when he was born sleeping at 14 weeks and we brought his tiny body home and began to plan his funeral, he brought Father George into our lives. At that time, Father George was the priest at St Nicholas Church in Saltdean.
We are not church goers. We didn’t even marry in a church. We got married in India followed by a civil service at our local Town Hall. But I read the Bible as a child and I had a deep longing to believe in a Godly creator who would welcome us to Heaven when we die.
So Father George came to our home and we cried and laughed as we shared our hopes and dreams for Pablo. He answered my clumsy questions about spirits and the afterlife with kindness and dignity and he made me feel safe and at peace that our son was in a better place.
He conducted a beautiful service at Pablo’s funeral, just my husband and I in attendance. He gave me faith in human kindness, he made it ok to mourn our first child who we’d barely known.
We don’t go to church now, life is so busy. And I’ve never felt comfortable with the violence and judgement represented in the Bible. But I believe in ‘God’ whoever that is. And I believe Pablo is a guardian Angel to his little brothers. He’s certainly got us through some tough times.
A friend invented a game recently ‘Opinion or Fact’…and I can’t say that my faith is based on facts or proof. It’s based on my opinions. It’s what I choose to believe. It’s what keeps me sane (as sane as you can be with Bipolar 2 disorder).
So Pablo is my first reason to be thankful.
Our rainbow baby L, took a little longer to conceive. But still, within a few months of trying, he was burrowed in my tummy growing beautifully and (thanks to Pablo and to God) he was healthy.
This pregnancy was not without event; I was diagnosed with swine flu in the first trimester and was very ill. But L was stubborn like his big brother and that nasty virus was no match for him.
There are no words to adequately explain the love I feel for L. He is my Sun. He is a passionate, brave and beautiful boy. He has a remarkable brain, the face of an Angel and he is very, very funny. Had it not been for L’s Autism diagnosis at 6, I would never had discovered that I was neurodivergent too.
I spent several hours in the birthing pool during my long labour with L and I think it left its mark on him because he is most vibrant, most alive, when he’s in water. He is an accomplished swimmer and loves nothing more than diving into the sea, a river or a mill pond. He is fearless, impervious to the cold and his obvious joy when in water is truly infectious.
L has an encyclopedic knowledge of Transformers and a collection worthy of a museum. He spends hours making review videos, stop motion animations and skits. He dreams of being a famous YouTuber and celebrates every new subscriber like he’s won the lottery.
They call the first child you birth after a pregnancy loss, your rainbow baby. L is definitely my rainbow. He is bold and colourful and he commands attention. He can also be elusive and private, it’s not easy for him to articulate complex feelings.
L bore witness to my battle with cancer at 3.5 years old. He has also seen me broken and beaten by the estrangement from my birth family. These are not things an innocent child should have up bear witness to.
But with my trademark honesty and his remarkable resilience, we have navigated these situations together. He knows I’m a bad ass warrior. He knows I’m don’t let things beat me. And he knows I love and accept him unconditionally.
L, our rainbow is my second reason to be thankful.
When L was 3 my husband and I decided to try for another baby. We both had siblings and wanted to give L a playmate. A best friend and confidante to grow old with.
It took longer this time, and I spent a small fortune on early pregnancy tests in my desperation to find out if we’d conceived. We were blessed with a positive test in June 2014. The line was so faint I kept thinking I’d imagined it, so I repeated tests every day watching the line get darker.
According to my calculations, we were 4 weeks pregnant when I went to hospital to discover the results of a recent breast biopsy. Hand on heart, I was not afraid. I’d had a non malignant breast lump in my 20’s. I expected this one to be the same.
Those of you who’ve read my earlier blog posts will know this story, so I’ll keep it brief.
I was diagnosed with stage 3 breast cancer. I told them I was pregnant and they advised me to have a termination so I could start chemotherapy right away. Still raw from the trauma of losing Pablo, I refused. Within a week my right breast was removed along with the lymph nodes from my right armpit.
H was stubborn like his big brothers. My surgery was no match for him! H continued to grow strong inside of me, and by 15 weeks gestation it was safe for me to start chemotherapy.
We call H our Warrior because he fought so hard to get to us. But he is also our Miracle. Had we not discovered we were pregnant at exactly that time, our chances to give L a sibling would have been destroyed.
My cancer treatment and my ongoing medication to prevent reoccurrence, means I can no longer have children. So we really are blessed that Pablo sent us H, just in the nick of time.
But the real miracle is the way the existence of H, the promise of him, kept me safe through my cancer treatment. Had I not been so focused on growing a healthy baby and delivering him safely, in all likelihood I’d have crumbled. My history of poor mental health could easily have been my undoing, conspiring with the cancer to finish me off.
But H had other ideas. Delivered early at 34 weeks he was our tiny perfection. We were all besotted with him. He was such a calm, easygoing baby. How blissful it was to carry him around in the sling, his body warm against mine.
H is something of an enigma. The shy and anxious toddler blossomed into a hilarious entertainer. He is confident and cheeky, he is very outspoken! He is emotionally very mature, he talks about his feelings easily and is very sensitive and caring to others.
He has a colourful imagination and explosive energy. He bursts into a room, leaping, shouting, kung foo kicking. He wants to be a master of parkour. He is fascinated by his body and how he can teach it to move the way he wants. He is a master of disguise with his many costumes and face paints.
H, our Miracle, is my third reason to be thankful.
Without wanting to sound dramatic, having children most definitely saved me. Literally. I have spent so much of my life wishing I was dead. I have encountered so much physical and emotional pain at the hands of my abusive parents. I have been manipulated and judged and rejected and broken down so many times. When you’re constantly told you’re a bad person, that everything is your fault, when your own siblings reject you for daring to tell the truth and expose their shameful, dysfunctional upbringing, it’s only natural that you look for a way out.
But then I met N. And somehow, he saw through my crazy, spiky exterior. He made me feel so loved and safe, he made me believe I could be a good Mumma.
And I am. It turns out, it’s the thing I’m best at. I am raising strong, resilient, kind and confident young men. And I’m smashing it.
This would not have been possible without my patient, loyal, kind and hard working husband. It’s not easy loving someone with long term mental health issues, especially when that person doesn’t love themselves. But somehow he does it. So I guess I’ve got 4 reasons to be thankful.
As for our sons, (or our sons who lived, as L likes to say) they are everything we ever hoped for.
Our sons are free spirits with their own unique personalities, interests and passions. They are encouraged and invested in to pursue the things they choose, and they care about. We have taught them that they have a voice and can make decisions.
Our sons know that grown ups makes mistakes and that the can and should apologise to their children when they mess up.
Our sons know the value of family, what it means to be a team. The four of us spend quality time together throughout the week whether that’s walks on the beach or bedtime stories, Friday night movie night or family exercise sessions.
Our sons understand about different brains and neurodiversity. They value their differences and are honest about the things they struggle with. They will NEVER be shamed or judged for being different.
Our sons know that mental health is just as important as physical health. They know they can trust us with their feelings and worries. They know they can come to us if they need help to calm down or diffuse their anger.
Our sons know there is a whole big wide world out there to explore. They love to hear stories about our travels, about our diving adventures. Our sons know they have our blessing to discover that world, and make their own adventures.
Our sons know we are proud of them. Of course academic progress is wonderful to see and they are both very bright & keen learners. But we are just as proud if not more, of their kindness to others, their imaginative creations be that a YouTube video (L) or a cardboard box fort (H).
We are proud of their crazy dance moves, their building in Minecraft, their joyous relationship with water be that swimming in a pool, the sea, a lake or river.
We are proud of their love and devotion to our cats, such gentle, caring souls. We are proud of their passion for the magic and mystery of Christmas and the fact they are still ‘true believers’.
We are proud of their ever growing independence, L with his eagerness to experience puberty and grow his YouTube channel so he can emulate his online heroes. H with his unique ‘cool dude’ sense of style and ability to immerse himself in his fantasy world where he can be Spider-Man, a Zombie, Michael Jackson or a dinosaur.
One day, our boys will want to leave home. They’ll want to travel the world. They’ll fall in love. I hope they’ll give us grandchildren to love as much as we love them.
One day we’ll have to let them go. Part of that journey is accepting they’ll have secrets they don’t want to share. Respecting their freedom and choices. Allowing them to take risks. One day, maybe, they’ll berate us for mistakes they feel we’ve made.
I’m not scared about that. We aren’t perfect. Our sons aren’t perfect. But we are held together by a mutual love and respect. Our sons feel safe with us. Our sons trust us. Our sons are proud of US.
So I have 4 reasons to be thankful this Christmas. 4 beautiful blessings. And thanks to the support of my lovely husband, I am finally learning to make peace with my past and focus on our future.
Just one day after writing this blog and feeling lighter and happier than I have in ages, a parcel arrived in the post for our sons.
A parcel from my mother and brother, professing their love for L & H.
They have not seen or spoken to our sons in over 6 months. They chose to sacrifice their relationship with our sons when they began their horrible campaign of threats and lies against my husband and I. A campaign they started because I dared to stand up and protect myself, to put an end to being manipulated and mistreated.
How to explain the feeling of violation, intrusion. How to rid myself of the utter disbelief that my mother can attack and slander me, poison my siblings with her lies, refuse to admit or apologize for the physical and emotional abuse she has continued to subject me to while she hides in her victim disguise.
Please don’t pity her. She is not worthy. If she ‘loved’ my sons she would not have abused me, their mother who birthed them. If she ‘loved’ my sons she would not have slandered and threatened my husband when he wouldn’t be manipulated and sucked in by her wicked charade.
My mother is a bitter woman who has suffered a lifetime of abuse at the hands of my father and her own parents. She has truly suffered and I wish things had been different for her. I used to love her so much and I tried so hard to make her life better.
She could have chosen to be different to her abusers. She could have broken the cycle. She should have wanted more for her own children. But my mother is weak woman looking for a scapegoat. Someone to punish for her unhappy life.
My mother has engineered a sustained campaign to undermine and discredit me. Meanwhile, my siblings have behaved like cowards, terrified their own dysfunction will be exposed if they admit the truth about our past.
And their partners? The ‘sister in laws’ I befriended and loved? There is nothing sisterly in showing support to my face and lying behind my back for their own selfish gain. Nothing sisterly in blind ignorance because the truth makes them uncomfortable.
They are complicit. They have chosen to bury their heads. And they have to live with the consequences of their behavior. They have robbed their own children of a relationship with the cousins they adored. That is their sorry choice.
The parcel will be returned today. As will every parcel, every card that they are foolish enough to send. They chose lies over truth. Wrong over right. They are not worthy to know our children. Our children who love and trust us and who know why Mummy had no choice but to break free from her birth family for her own safety and well-being.
As their parents we have to make hard decisions to protect our boys from the narcissistic reach of my mother and siblings. It brings me no pleasure. I never, ever wanted to hurt my birth family. I never wanted my sons to lose contact with their Nanny and Uncles. I never anticipated that my siblings and grandparents would choose sides. Why was that ever necessary?
All I asked was to free myself from my mother’s grasp because she was killing me. She was KILLING me. SHE had a choice. She could have chosen to act with dignity, to accept the end of my relationship with her and to be grateful that I was prepared to let her still be involved in our sons lives.
But she chose to retaliate, to poison the family I loved and was loyal to, to spread lies and encourage that family to either attack or ignore us. They made their bed as the saying goes and now they must live with the consequences of their choices.
I still have 4 reasons to be thankful, 4 blessings.
I will not rest until my heart is free of hurt and my beautiful family who I built with my husband are beyond the reach of my toxic past.
Dictionary.com describes a Black Sheep as ‘a person who causes shame or embarrassment because of deviation from the accepted standards of his or her group‘.
But what if those ‘accepted standards’ are NOT acceptable, what if those accepted standards involve lies, concealment, masking problems to keep the peace regardless of who gets hurt?….
As I sit crying my eyes out after a particularly spiteful email from my oldest brother, I wonder if I will ever be free from my family’s judgement.
If you’ve read my previous blog posts you’ll know I’m estranged from my birth family after a distressing and abusive childhood and many years of being gaslighted as an adult.
I naively reached out to my oldest brother asking if he would help me process some of the stuff we went through as kids because he was there, he knows. My other brothers are neck deep in pretense trying to convince themselves that what I say hasn’t happened because if they acknowledge the truth they may have to do something about it.
So brother J responded to my email. But instead of offering me support he chose to attack me and belittle me and threaten me because my birth family are all cut from the same, damaged cloth and thank God my saving grace is I am different from them.
I am Autistic. I may be their scapegoat but I am also their conscience. I am a good person who always strives to do better and right any wrongs. I am not perfect; I am hot tempered, outspoken, impatient. But I am also kind, generous and unfailingly honest. Why then does it hurt so much, their deliberate and spiteful rejection?
It hurt enough to make me punch and slap myself hard in the face which I haven’t done for years. Afterwards I felt stupid; my head ached, my cheeks and temples were tender. There was a nagging pain behind my left eye.
My psychiatrist says my family are toxic. He tells me they’ll probably never apologize, that I’ll never get the answers I need. It hurts to hear these things said out loud, it feels disloyal that a stranger is judging my family without ever hearing their story or understanding their hurts. He says I am brave and resilient and lucky to have such a good man in my husband (this part is true 💖). He says I should ensure my family are not allowed back into my life for my own wellbeing and safety. My husband echos this sentiment frequently; ‘forget about them, they don’t deserve you’.
And I know he’s right, but still it is so hard to accept this estrangement. My sons have lost half of their family. They are innocent of any wrong doing, just not important enough for their maternal grandma and uncles to admit the mistakes of the past and try to put things right.
People ask why I write so openly about such private things. The truth is, I can’t stop writing because it’s the only therapy I have and the pen truly IS mightier than the sword. My writing is an act of defiance, a promise to myself that I won’t be shamed, I won’t be silenced. My writing is my legacy to my sons so that one day when they’re older than can read about my life and understand why I chose truth over lies and freedom over emotional imprisonment.
It is very hard for me to trust anyone right now. I’m so weary of people sweeping family dysfunction under the carpet. I used to believe that I could forgive anything as long as the other person involved wanted to work with me to put things right. Now I realise that my strict moral compass is polar opposite to the deception, false promises, and fake intimacy that my birth family share. Even those who stand by me, who know I speak the truth, keep a safe distance to protect themselves. And I understand that. I respect that. But God it is so lonely going through this on my own with only my husband truly in my corner.
I visited a friend recently, someone who is estranged from her relatives like I am. She told me something that struck me as so wise, so insightful, that I wanted to share it here. She said she used to think that the ‘black sheep’ was the bad guy in a family, the person who’d done something terribly wrong, who’d let people down. Then she realized that the black sheep is often the person in a family who dares to ask questions, who holds others accountable for their actions, who strives to be different and make better, kinder choices than their siblings or their parents. The black sheep is the one gifted with self reflection. Who can look at themselves and recognize where they need to change to be a better version of themselves.
So I guess I’m the black sheep in my birth family and I’m at peace with that. I was born different. I stand out like a sore thumb, I wear my heart and my truth on my sleeve. I have very little filter and I love with a fierce loyalty.
I was selected by my mother, subconsciously I hope, to be her emotional punch bag. My guess is that this was her way of coping with the abuse she suffered at the hands of her mother and her husband (my father). As an adult she used my poor mental health against me and pretended she was on my side whilst privately chipping away at how others saw me, with her gross exaggerations and lies. My brothers bought into her victim persona and chose to sit on the truth rather than face their own demons, a cowardice I don’t understand and can’t relate to. My grandfather, who I begged not to push me away, threw me to the wolves. His stubborn pride would not allow him to admit he’d turned a blind eye to the abuse my mother suffered and in turn dished out to her children.
When I read this back, see it staring off the page at me in black and white, the injustice I feel is enormous. I’ve spent 45 years loving and caring for these people who didn’t understand me and only mocked my differences. Am I really so unloveable that they would sacrifice me rather than tell the truth?
But wait, it’s not all bad. For the first time in my life, I can invest fully in my husband and sons without the nagging responsibility for ‘fixing’ my birth families’ problems. No requests to borrow money or perform favours at short notice. No guilt because I have a better quality of life than them (which my husband and I have worked so hard for yet they always resented). No judgement or ridicule or demands that I change to fix their prescribed way of being, adhere to their strict timekeeping, hide my feelings on demand. No more being lied to.
I read an article yesterday about a lady who met the man that killed her father and how she forgave him. It sounds unthinkable, yet she describes how she had to forgive him for her own sake and well-being. On one level I know she is right, she is brave, she is dignified, she has freed herself by letting her anger and resentment, go. On another level I know I may never get to that point because the people who have harmed and persecuted me, lied to me, betrayed me, they are still doing it. The spiteful email from my brother. The abandonment of my sons; not a thought given to the impact on them when my mother and brother began bombarding my husband with coercive and threatening emails and messages. The cowardly silence from my other siblings, not just a rejection of me but of their nephews, destroying the close bond they had with their cousin.
But there is a silver lining. I will get stronger, more resilient. I will focus forward. One of my sons asked recently why we still have photographs around the house of my birth family. And for a second I wondered, should I take them down? Do I want them staring back at me after all they’ve done? But I told my son that we have the photos up because I still love the people in them. They are in our past but they are part of our history. We have shared happy memories with them which I know were real. To deny this would be like trying to erase part of our lives.
A relative I have huge respect for has urged me to live for now, for today and tomorrow. To be happy in the moment and not get eaten up by broken promises and unanswered questions. This is sound advice that this black sheep is going to try and follow…one day at a time….
Unfortunately for some of us ‘Lifers’ poor mental health is an everyday, 365 day a year kind of thing. And it’s a long and lonely journey because friends and family often don’t have the understanding or the stamina to support us day in day out. In truth, we full time crazies can be a drain on the people who love us. They struggle to cope with the fact we’re not coping.
I was moved by the number of people on my news feed bravely volunteering their personal experience of mental health issues on World Mental Health Day. Telling your truth shows solidarity with others and helps squash the stigma associated with poor mental health. I have respect and virtual hugs for everyone who shared their lived experience.
Like any health issue, people expect there to be a specific reason. A logical cause. They want to understand the why, so they can help you get better. But sometimes there ISN’T a why. And that is a very difficult thing to get your head a round.
Logically, I can pinpoint specific incidences that have previously triggered a dip in my mental health. Breakdowns in relationships (family and romantic), stress related to my studies or work, forced changes to my safe and familiar routines, death of a pet…..all obvious reasons I can make sense of. But often there is no reason. No definable event or cause. In fact some of my deepest depressions have occurred when I should have been at my happiest. I can’t explain how guilty and broken that makes you feel knowing you have so much to be grateful for yet your brain won’t let you be happy. Instead your brain is ice and fire, frantic, chaotic, moods changing like the tides, intrusive thoughts shaking your foundation, paranoia playing hide and seek in your head.
I first saw a psychiatrist when my older son L was one. He prescribed medication for depression and anxiety. I also began cognitive behavior therapy to learn how to manage my OCD.
Accepting that there is not always a logical trigger or cause was a turning point in how I manage my mental health. If you’re a ‘Lifer’ like me, then maybe my experience can help you too…
Now I know medication for mental health is a contentious issue. I’ve heard people say it made them feel like zombies. I’ve met people who’ve celebrated coming off meds as a huge achievement (hurrah, I don’t need you anymore)! I know people who prefer to cope without because they don’t want to become reliant on medication. I’ll be honest, as that’s the only way I know how to be; I wouldn’t be alive without my meds. Fact. I have tried coming off medication twice in the last 10 years. Both times were disastrous.
The most recent time 7 years ago, I was trying to fall pregnant again. I convinced myself it would be better to be unmedicated through pregnancy even though the meds I was on are proven very low risk. I carefully reduced my dose over 3 months as instructed by my GP and we started trying in the June of 2014. Simultaneous to this, my mother in law married her long term partner and they invited us on their ‘family moon’ to Dorset. I’d been completely off meds for a week. We stayed in a gorgeous house, great company, many beautiful walks along the coast. L was approaching his 3rd birthday and was at that magical stage where every experience is marvelous and enthralling to him. He was so happy to have his grandparents, Auntie and Uncle all together; N and I even managed a date night. And yet my brain, my mind, was frantic. I felt irrationally irritable. I had paranoid thoughts scratching around in my head. Waves of anxiety made me feel nauseous, untethered.
Within days of getting home I arranged to see my GP and psychiatrist, distraught at my inability to cope with the day to day. My tears came like a flood, I demanded to know what was happening to me. Their message was the same…’You need medication. Some people can’t live without it. You wouldn’t refuse meds if you were diabetic or had high blood pressure, so why refuse meds for a chemical imbalance in your brain?’ My psychiatrist was even more blunt, stating that I could not be a good wife or mother if I couldn’t keep myself stable and safe. So I returned to medicating albeit on a lower dose. Shortly after I discovered I was pregnant again. A few weeks after that I was diagnosed with breast cancer. In retrospect I am so grateful to have gone back onto meds when I did as they undoubtedly helped me get through cancer treatment at the same time as growing a baby.
Now I’m not saying meds are the perfect solution, nor the only solution. Let’s imagine for a minute that you’re trying to perfect a recipe for mental healing. For the recipe to work you have to have some basic ingredients in place like a healthy diet, fresh air, exercise and adequate quality sleep. Without these core ingredients it doesn’t matter what else you add in, the recipe won’t work. The good news is, there isn’t a set order in which these ingredients need to be added. So you might start with some prescribed medication and that might help stabilize you so you can engage in some talking therapy. And if you’re lucky, you might then start to feel a bit better. Not ‘fixed’ but maybe calmer, more positive. So you then find the motivation to add some of those healthy core ingredients like sleep and a healthy diet. There are other ingredients you can throw in that might seem like a good idea at the time…until I gave up alcohol 13 months ago, vodka was liberally added to my recipe on a regular basis. I thought it helped me cope and maybe it did in social situations but it ultimately undermined my recipe, my ability to cope, to heal.
For me, medication has been life changing, life saving. It helps stabilize my moods, it limits my suicidal thoughts. It has also enabled me to engage in talking therapies such an counselling and CBT, which have helped me understand myself better and change negative or destructive behaviors.
Over the years I’ve realized I need to be more proactive in managing my mental health through making the right lifestyle choices. I ensure exercise and fresh air are part of my routine. Sometimes I exercise energetically, obsessively. Sometimes I struggle to motivate myself to exercise or my knee injury limits me. But I still get outside for long walks with my camera, nature heals me in a way nothing else can.
I eat healthy meals (whilst struggling with a secret binge eating disorder), I try and get adequate sleep (although night terrors still plague me). I pursue my special interests of writing and photography and most importantly (for me at least) I have been sober for 13 months, my longest time other than when I was pregnant and breastfeeding.
I’m still a mental health Lifer. I won’t ever be cured. I was diagnosed with bipolar disorder around three years ago. Type 2, the manic depressive kind. But I can manage this condition like any other. I take my meds. I try to have a healthy lifestyle balancing my physical and mental wellbeing. I know to tell my trusted people if I’m struggling. They can’t always help, but they can be patient, they can be kind. Because blaming me, judging me, ridiculing me, that will only alienate me and forever break our trust.
Sometimes I regret how open I’ve been with my mental health journey. My birth family have used my mental health as a weapon to judge me with. They have tried to manipulate me, undermine me, worst of all to excuse their appalling behavior towards me they blame it on me, because I’m ‘mad’.
But I’m NOT broken. I’m NOT permanently incapacitated by my mental health. I’m an intelligent, strong, resilient human being determined to challenge the stigma surrounding mental health conditions. I want to help others like me, I want to help the Lifers and those who experience one off, circumstantial periods of poor mental health.
I’ve often wondered why I struggle more than most. My psychiatrist and I have talked about this at length. I grew up thinking I had bad genes, observing the erratic behavior and mental struggles of my mother and grandmother. Discovering I was Autistic at 42 opened my eyes to the complexity of my Neurodiverse brain. Autistic individuals are wired in such a way that we often struggle with emotional regulation and heightened sensory processing. We are frequently hyper empathic and FEEL every emotion and sensation so deeply and acutely that it’s often overwhelming, sometimes painful. Childhood trauma and abusive parenting have undoubtedly left their mark on me too. And as much as I am a Believer, God has definitely tested me with the life experiences I’ve been dealt (I’ve been known to say ‘whoever is writing my script up there is an a-hole!’)
What I do know for sure, is that my mental health issues do NOT impair my ability to be a good person. I am a brilliant mum, a loving wife and a caring friend. My house is always clean and tidy. My finances are in good order (largely thanks so my amazing husband). My children are thriving. They are clean and well fed and safe. But more importantly, they are supported and encouraged. They are challenged and developed. They are celebrated as unique individuals. They are involved in decision making. They are encouraged to learn independence. They know we will never judge them or blame them. We talk and laugh constantly. I am very open about my personal challenges because I want them to know how to protect their own mental health.
I don’t know when my next ‘dip’ will come. I never do. But I know I have an amazing team in my corner and I’ll get through it.
And for those that have wronged me, judged me, rejected me, be grateful that I do have that amazing team keeping me on the straight and narrow. Because without them my crazy ass would come after you like Uma Thurman in Kill Bill, Inigo Montoya in The Princess Bride, Edmund Dantes in the Count of Monte Cristo…and we all know how those stories ended 😉
My last few blogs have been pretty heavy and emotionally draining so I wanted to share something a bit more light hearted and positive with you all.
Some of you know I was diagnosed with breast cancer when I was 4 weeks pregnant over 6 years ago now (ok, ok I know this doesn’t sound positive but please bear with me….)!
I made the decision to continue with this pregnancy against my oncologist’s advice because, I knew this was my last chance to give L a sibling. Also, my experience losing Pablo and the pressure I felt to end that pregnancy because he had a rare lethal chromosome disorder, had devastated me. I would not let myself be pressured into letting go of this baby who could be perfectly healthy for all the Doctors knew.
The upside of this decision was that I felt super positive and determined to get through treatment and have a healthy baby. I had this incredible motivation to just get on with it, to look after myself and to ensure we both survived. People used to say how brave I was but I wasn’t brave at all, I just had my eyes on the (baby shaped) prize and I trusted that we’d both come out the other side.
So H was my constant companion though treatment. He survived a general anesthetic during my mastectomy at 5 weeks gestation. He accompanied me through chemo from 15 weeks gestation. And when he was delivered healthy at 34 weeks, the look on L’s face was like someone who’d won the lottery.
This photo is their first cuddle after H ripped out his feeding tube and aspirated on his vomit at 9 days old. He scared the life out of us all, but the wonderful nurse at Worthing SBCU saw the opportunity for L to have a tube and wire free cuddle rather than just stroking him through through the incubator. The rest as they say, is history.
Today they still love a snuggle, last night’s bath time being a good example. I don’t know how long it will be before they decide they want separate bath times, or whether they will get fed up with me always asking to take their photograph. But for now I will enjoy every second. It’s moments like this when they are so loving to each other, that I feel truly lucky, glad and relieved that I trusted my instincts and kept my faith.
Don’t get me wrong, they squabble and fight like all siblings do. Some days by the time N gets home from work I’m half way hanging out the kitchen window about to do a runner as I can’t take their bickering any more! L & H are both Autistic like me so with the three of us being highly sensitive, outspoken and rather inflexible, it’s no wonder N says that we are not Neurodiverse but in fact Neuro-Difficult!
The upside is we have amazing banter, we laugh every day and we see beauty and adventure in the world so clearly where others may see doom and gloom. N is our safe place, our protector, our common sense and he helps separate us during a meltdown! The boys have a running joke about my weight at the moment as I’m always on a diet so when they catch me with a slab of cake or a bar of galaxy, they will shout ‘aren’t you meant to be fasting?!’ Or ‘I don’t think that’s a good idea do you Mum?!’ Recently H took my face between his hands and said solemnly ‘God had created a wonderful creature….Fatty Boom Boom’. I still cry tears of laughter every time I recall this!
Together the four of us have so much fun. The national lockdown due to Coronavirus was actually a real positive for us as it gave us so much time as a family to be outdoors, walking, running, swimming, and discovering places we never knew about before.
I guess what I’m trying to say is, even in the toughest times, the saddest times, you can find moments of joy. Twinkles of happiness. My boys cuddling in the bath yesterday, joking about weeing in the water and giggling when one of them farted, gave me 10 minutes of uninterrupted thankfulness, the benefits of which I can still feel today 💖
So as you go about your day to day, undoubtedly carrying pressures, worries, sadness and responsibilities of your of own, look out for those twinkles, those lighter moments, the things that make you smile. They are more refreshing than a £5 shot from a fresh juice bar and they last a lot longer too.
Note: I wrote this letter because one day, when my sons are older, I want them to read about this difficult time in their lives and know how hard I tried to get it right, even if I didn’t always succeed.
To my beautiful boys. I’m so sorry Mummy has been sad lately. You’ve caught me crying often. You comfort me with cuddles and ask me what is wrong. I tell you I’m ok, ‘Mummy’s just a little sad’ or ‘Mummy’s feeling stressed’ and at first that’s enough. But as the weeks have passed you start asking more difficult questions. ‘When are we going on a dog walk with Nanny again?’ ‘When will we see (our cousins) T & A?’ ‘When will we see Uncle O? Can we FaceTime him to see some magic tricks?’
What am I supposed to say? How do I protect you from the truth? How do I explain that my whole birth family has turned against me because I decided, at 45, to emancipate from my Mother.
As the weeks have gone by, you have felt their absence more. No Nanny catching a lift on the school run. No trips after school to see your younger cousins. No FaceTime with your favourite Magician. You start to realise that my sadness and these absent relatives are linked. You want answers. Where do I start? How do I frame such a painful message in a way that is appropriate for a five and a nine year old?
You are both Autistic like Mummy, you are both super bright and mature for your age. But you are both so different. L you are easier to manage. Unless extremely happy, or very angry, you experience emotions from a distance. You are very resilient and adaptable. You accept change even if you don’t find it easy. Your world is Transformers toys and your YouTube channel. You eat, sleep and dream your special interests and although you tell me that you miss these relatives, you are mostly angry that they have upset me. Only when you ask after your new baby cousin do you seem visibly upset. You are remarkable with younger children and describe yourself as a baby magnet. I know your heart hurts at the thought you won’t see these cousins again.
H, you are so like Mummy it is unreal. You feel every emotion so intensely, so acutely. You have deep thoughts and want to discuss everything. You say exactly what is in your head, even if it is rude or shocking. You are quick to cry, have bad dreams and hold onto hurts. The feelings you have been sharing with me have reduced me to tears. You usually do this when we’re in the car. I think it helps you talk when you don’t have to look into peoples’ eyes. You tell me you are sad. You tell me you are angry. You tell me you miss Nanny. You miss her dog that you were scared of for so many years and grew to love just this last year. You miss going to her house ‘because I like that place’. You tell me you want to punish her for upsetting me. Then you tell me you want to go and visit her when you’re a grown up. You fret about whether she will still live at the same house and how will you find her if she moves?
So how do I answer your questions? It is so hard. To you, my Mother is just Nanny. Nanny who you love and who loves you. Nanny with the crazy hair and huge dog that you’ve both grown to adore. But to me she is heartbreak. She is rejection. She is destructive. She is lies.
You tell me how much you miss playing with your cousins and you get tearful because you think baby A will forget about you. You decide that T will remember you as he is three and you gave him lots of your toys. You ask whether you will see your Uncle who does magic tricks, again. You tell me he is funny. That he is kind. You are confused by the concept that people who love you and are kind to you, can at the same time be horrible to your Mummy and Daddy. You talk about Uncle A and his girlfriend A. ‘He is kind! He shows us funny things on his phone. A is nice, she gave us nerf guns!’ Its strange to realise the things that matter to you, my children, the things that make an impact, that make you value others outside our own little family.
So I tell you about your Great Grandma, whose Mummy was very cruel to her. And how when your Great Grandma had her own little girl (that was Nanny) she ended up being mean to her too. And then Nanny had a little girl (that was me) and she tried very hard to love me. But the older I got and the more independent I got and the more I wanted to spend time with friends and build my own life, the more angry she became. She didn’t have the chances I had, because she’d had me too young and her husband (my Dad) was very mean to her which made her feel all alone. I tell you about my Autistic brain and how my feelings are turned up to 100 and how badly my heart hurts and my brain aches when people are mean to me. I tell you that I couldn’t cope with Nanny being mean to me and not telling the truth or saying sorry, so I had to be brave and decide not to see her anymore. H, when I told you these things you were outraged. ‘Why didn’t she want you to grow up? You had to travel the World. It’s amazing!’ If it is so obvious to you at five, why was this not obvious to her?
I tell you that I never, ever intended for you to stop seeing your relatives. I know you love them and are loved by them. I would never do anything so selfish nor deliberate as to restrict your access to the people who love you. And I told Nanny that. I wrote that she could arrange to see you through Daddy.
I promise you my boys, that I tried so hard to manage my retreat from Nanny with dignity and kindness. I still love her, I worry about her. I want her to be happy. I wrote to your Uncles asking them to look out for her, to protect her and support her as I wasn’t able to do that anymore. Naively, I thought that everyone would understand. That I could remove myself from her harmful influence without it hurting you, my boys, or Daddy. I saw no reason for anyone else to get involved. I never anticipated that other family members would ‘take sides’. Why would they? After all, when I emancipated from my father when I was pregnant with L almost 10 years ago, there was no big drama. No showdown. We simply ceased to communicate. No one batted an eyelid then. No one tried to change my mind. In fact my brother D ceased contact with him shortly after too, unable to cope with the pressure of a father whose idea of quality family time was sinking 15 pints before passing out.
How stupid I was to think that my Mother, your Nanny, would let me slip away without paying the price for standing up to her. To her, it was crucial that everyone take sides. It was essential to establish herself as the victim, the innocent, the person in the right! So began her campaign to discredit and harm me in ways I never anticipated.
First she sent messages to Daddy telling him that I was mentallyi ill and in crisis. She told Daddy to ‘be brave’ and to ‘use his intelligence’. She tried to shame him into admitting that this was all my fault, that your crazy, broken mummy couldn’t be trusted.
But she underestimated Daddy. She underestimated his love for me, his loyalty. She persisted in ignoring how good Mummy’s mental health had been during the Lockdown. She disregarded that Daddy had seen with his own eyes how manipulative and cruel she can be to me. She had forgotten that 10 years ago, having read my childhood diary, a distraught Daddy tried to discuss my past with her. But she’d refused to talk about any of it, the shutters firmly locked. In fact, she has often told me over the years that she ‘has nothing to apologise for’ as if she can blindside me into accepting her silence.
Then came the messages from my brother O, your favourite Uncle, Master of Silliness and Magic Tricks. A brother I believed I was close to, who I thought understood and accepted me. His messages were aggressive and accusing, bullish attempts to coerce Daddy into blaming me for the inconvenient conflict, to blame my mental health. When Daddy refused, O met his resistance with furious accusations. He said terrible things about our parenting, spiteful and shocking lies from someone who has never had children nor shown willingness to accept such responsibility. O tried to turn our shared experiences of partying in our pre-children days into gruesome scenes as if from the movie ‘Trainspotting’! He conveniently forgot how Daddy and I owned our own home and held down successful and well paid careers during those carefree days where the only things we were responsible for other than our mortgage and jobs was our tropical fish tank. Yes we partied hard at weekends but we also worked hard, we were passionate about fitness, Daddy played national league hockey! We were like every other young couple we knew, trying to have fun and find purpose in life, a purpose we only found when we had you, our beautiful boys.
My other brothers, your Uncles, including L’s Godfather, have said nothing. Their silence is deafening. My one attempt to connect with them over three months ago now, to explain and ask for their understanding if not their support, was totally ignored. I’m still not sure what is worse. The angry, confrontational reaction of O or the apathy and ignorance of the others? No matter, it all amounts to the same outcome. They are not ready to accept my truth as it would mean revisiting their own past and the harm our Mother caused to them. It would mean them having to DO something, to make a decision, to consider how the way they were parented has impacted their behaviour, their relationships, the way they parent…
What makes their silence so baffling is that I know my three oldest brothers have all spoken openly about our abusive childhood to their current partners and their exes and have shown bitterness and resentment towards both our parents. These conversations have often been fuelled by alcohol but there’s no denying that our terrible childhood and adolescence was a topic we all kept revisiting. In fact we often joked about it which probably seems in bad taste, but I now recognise this was a coping strategy. A way to downplay the seriousness of the situation because none of us knew what to do about it and none of us wanted to hurt our parents. I still don’t.
I had naively thought that my brothers’ girlfriends would at least have empathy, would try to maintain a relationship with me, particularly for the sake of your relationship with your cousins. I am confident I have been a good friend and sister to each of them, and a loving Auntie to my nephews. Yet with one exception, I have been met with cold silence or judgement and self serving lies. In a way I feel more betrayed by them than I do my brothers, because they could have done the right thing. They didn’t live our past, they don’t carry our baggage. They didn’t have to take sides. They could have guided my brothers to stay neutral, to enjoy separate relationships with our Mother and I, just as they do with our Father.
Thankfully I have loving support from the ex wives of my two oldest brothers. But even this has brought me grief. My brothers have told me that I made ‘bad decisions’ supporting my sister in laws. They think my loyalty should have been to my brothers. But they did not treat their wives fairly or correctly. I set up my stall early on, explaining I was on the side of their CHILDREN, not on his or hers. Still I was labeled a bad sister for not blindly supporting my siblings and ignoring their mistakes no matter how much harm it caused. This attitude is frightening and suffocating to me. I’m a strong woman and having watched my own mother live through a terrible marriage. I am a passionate advocate for women’s rights and equality. I love ALL of my brothers and I always will. In my head they are still the innocent little boys I played with and helped bring up. They were victims just like me, but with one critical difference….They were LOVED.
Without a shadow of a doubt, my mother and my father loved their boys. They excused their behaviour and ignored their mistakes because they KNEW they had both let my brothers down. They felt guilty. They felt ashamed.
But they did not love me. Certainly, not past the age of 11 when my desire for independence and sense of injustice led me to start challenging the violence and fear that was commonplace in our home. If I had to choose, my fathers pattern of drunken rages and cold indifference towards me was far preferable to my mothers insidious criticisms, calculated rejection and physical assaults. But perhaps I could have learned to forgive them both (and I certainly tried) if I had felt loved by either of them. But my father only showed me resentment or (once I’d grown up) used me to prop him up when he needed money or a roof over his head. My mother thought she loved me. And she could show me kindness and care when life was treating her well. But every single time her life got hard, whether down to her failed relationships, money worries, work stress or health issues; then her resentment for me would boil over. How dare I enjoy life when she couldn’t? How dare I find men who loved and respected me, who didn’t beat me? How dare I have a good career? How dare I earn money, own a home, drive a car? How dare I raise my children with such passion, confidence and self belief? My mother always used to criticise her appearance and say how ugly she was, then she would tell me how much I looked like her. My mother would constantly berate me for being so outspoken, for fighting my corner, for arguing with people (including my husband) if I felt mistreated. I think this angered her because she never stood up for herself and on the rare occasions she tried to seek help from her own parents, she was ignored. She could never understand why my husband tolerated that I didn’t do his ironing or carry dinner to him on a tray.
It was always a bone of contention between my Mother and I, if I criticised my brothers. She couldn’t bear to hear a word said against her boys, and has always been so quick to judge their partners because I truly think she doesn’t understand what it is to be a woman supporting another woman. It’s an alien concept for her, thanks to the abuse she suffered at the hands of her own mother.
But still you ask questions, so I try my hardest to give a sanitised response. I tell you how your cousin’s Mummy has taken Nanny’s side because she never had a good relationship with her own Mummy and she needs Nanny’s help to look after your cousins. I tell you that your cousins love you and will never forget you even though my tears soak my pillow at night knowing I will never see T run towards you again with that look of utter adoration.
I tell you how I sent your Great Grandad a message begging him not to take sides and to please let us still be in his and your Great Nanny’s lives. But he sent Mummy a very angry and spiteful reply. He accused me of lying and told me to stay away. He broke my heart with his cowardice. He was too proud to accept responsibility for his role in Nanny’s cruelty to me because he had wilfully ignored the domestic abuse she suffered at the hands of her own Mother and later, her husband.
I haven’t told you how shaken I’ve been by the behaviour of my birth family. I haven’t told you how heartbroken, betrayed, how cheated I feel. I haven’t told you the disappointment I feel in some people even though privately I knew they could not be trusted because they have shown poor integrity in the past. I haven’t told you how the greatest wound has been caused by my grandfather, because I grew up comparing him to my father and convinced myself he was good and noble, how a man should be. But his determination to silence me and his vicious retaliations have made me realise my vision of him was just a daydream and that good, noble man doesn’t exist.
Your Grandad S, my Father in Law has tried to help me understand my Grandfather’s reaction. He explained that in older generations, speaking up about family dysfunction and cruelty was taboo and somehow made the whistle blower seem worse than the perpetrator. Does that help me accept what’s happened? No. But it shows me how dangerous pride can be and how critical it is to tell the truth, to stand up for yourself because you can’t rely on others. You just can’t.
I wish I had a crystal ball, I wish I could tell you what the future holds. What Daddy and I agree on is that there is no going back. It makes a Mummy physically and mentally ill having Nanny in her life. The last three months, despite the deep waves of sadness and your painful questions, I have felt lighter, freer, calmer. The lifelong weight of responsibility towards Nanny is gone. I can focus on what matters most, Daddy and you boys. I can give you more of myself because I am not weighed down with trying to force Nanny to like me, to love me, to value me. I don’t need her approval anymore and I don’t have to fear her rejection.
As for my brothers, I try not to waste too much time grieving for these one sided relationships. I spent my whole life looking out for my brothers. Caring, advising, coaching, loving. I never got back even a quarter of the love I invested in them. When I was 16 I went to visit my Grandparents in Spain with my school friend. We were out walking one day and talking about my brothers and my Grandad said carelessly, ‘Ha, when you are older not one of you will speak to each other’. I was horrified that this man who
I viewed as wise, would say such a terrible thing. I told him he was wrong and he laughed easily. But it turns out he was right about that one thing at least.
As for your cousins, I miss them every day. I know they will forget us and I grieve all the happy memories we should have been able to make. But their parents have made their choice, they chose lies, they chose selfishly and I know they will come to regret their cowardice but regrets always come too late.
Children should NEVER be used as a weapon. You my children are everything to me and Daddy. We chose to make you, I grew you, we are responsible for raising you. We love and accept you completely. We give you the safety and security I never had and the freedom to be who you want to be. Right now are you so young and it is hard for you to accept you have lost all these people you loved. I wish I had a magic wand to resolve all these hurts. I wish my brothers and their partners, my grandparents too, had chosen NOT to take sides. I wish they had not felt it necessary to lash out and attack Daddy and I with judgement and lies when they have never walked in our shoes. I am a forgiving person, Daddy, not so much! But we both respect honesty and integrity; bravery and apologies. Will those apologies ever come? Will my family ever take responsibility for their actions? I doubt it. It’s far to easy to repeat the selfish mistakes of previous generations and perpetuate abuse than it is to be different, to challenge, to dare to make your own path like I have.
L, H, you are so loved. And you have a wealth of people who love you, people who ALSO love, respect and accept Mummy and Daddy for who they are. You have maternal and paternal relatives who will always support you. You have cherished friends, committed teachers. Most of all you have us.
My wonderful Auntie V once shared a poem with me that made me really sad. I can’t remember it exactly but the gist of it was about how our children are not ours to keep but ours to nurture until they fly away. I understand that poem now and I promise I will do everything possible my boys, to help you fly. I trust our love will never be broken, not by time nor distance. I will never reject you and I will always be waiting when you need me.
Lizzy Van Tromp
If anyone reading my blog is affected by estrangement from their family or a key family member, I’ve been advised of an amazing charity that supports adults in this situation. We are not alone xxx
I drove past you today on the school run. It was bound to happen eventually but it still came as a shock. My breath caught in my throat and I started to cry. You looked tired. I could tell your knees were hurting. You’d changed your hair.
H was in the back of the car, still to be dropped off. He asked why I was crying. I told him ‘I saw Nanny and it made me feel sad’. He said, ‘I miss Nanny too’.
But there’s the thing. I don’t miss you. It’s eleven weeks since I last saw or spoke to you and I know I’ve made the right decision. Ending contact with you was essential for my mental and physical health. My recently diagnosed heart problems prove to me that you really can die of a broken heart. And my heart has been broken by you again and again and again. It feels like a miracle that I’m still breathing.
The reason I was crying, sobbing actually; loud, ugly, breathless sobbing, was because I am hurting FOR you.
You deserve better from life.
You deserve to be happy.
You deserve to feel loved.
You deserve to be looked after.
You are a victim too.
Your Mother’s spiteful tongue meant you grew up feeling rejected and unloved. Nanny herself was the victim of a cruel Mother, mistreated and abandoned. She entered motherhood with good intentions I’m sure, but somehow she ended up repeating her Mothers’ mistakes. And your Dad? My Grandad, the fallen hero. You idolized him, he made you feel loved and he spoiled you. But he never intervened when Nan was abusing you. He never discussed or corrected her behavior. His apathy probably caused more damage then you know. In turning a blind eye to your suffering, he set a precedent. All problems will be swept under the carpet. Complaints will be ignored. Retaliation will not be tolerated.
Please leave all truths at the door…
It’s no wonder when you met my Dad at 14, a handsome, hardworking 17 year old, that you fell blindly in love. When he began hitting you, you kept quiet. Because he loved you. Your parents approved of him. They must have done because they allowed him to be alone with you downstairs in their house, when everyone else was in bed. And that’s how I was conceived.
So there you were a very bright and beautiful young woman of 16 with a job lined up in the civil service. Until you fell pregnant with me. I imagine how scared you were telling your Father. I wonder how you felt about his ultimatum? You were rushed into marrying my dad with me growing in your belly. A month before your 17th birthday I came into the world. Your one and only daughter. Your first child. You and Dad moved into a flat in Crystal Palace. He worked long hours. You were mostly alone. No friends nearby. No family. You didn’t drive. Did they move you far away from their family home on purpose? So they wouldn’t have to be involved?
Me age one
My earliest memory, and I could only have been a year old, was of Dad yelling and crying and punching the walls. The impact of losing his Dad was catastrophic. Anyone I ever met who knew my Grandad J, told of a truly good man, a kind man, a provider, a sweet heart. When his light was snuffed out, Dad was traumatized. He lived in the shadow of his Father’s early death, terrified he’d meet the same fate. His drinking escalated. His temper flared. The beatings he gave you increased.
My next memory; we are still in the same flat in Crystal Palace. You, Dad, and me. I had a little doll, an Indian Squaw. She was so pretty. You stood on her while you were cleaning and the brittle plastic was crushed under your feet. It was my turn to cry. It crossed my mind the other day; did you step on my doll on purpose? Did you want to hurt me even then? I wish I knew.
The dinosaurs at Crystal Palace Park. These feature strongly in my early memories. Walking with you, spying the magnificent towering reptiles amongst the trees. Sometimes there were pony rides in a clearing. Then we are in a house. Our first family home, in Penge. You made me a costume out of blue crepe paper. I am little Bo Peep. I stand in the school hall with Cinderella and Snow White. There is a prize for the best dressed. I wish with all my heart ‘Pick me! Pick me!’ It’s not me. On the walk home, heavy hearted I spot a diamond ring on the ground. Of course, it’s not a real diamond. It’s plastic gold with a pink plastic gem. But to me it’s a precious jewel. The winner after all. Did you put that ring there for me to find or was it really lost treasure?
Crystal Palace Park dinosaurs
My brothers arrived in quick succession. You had five children by the age of twenty five. By the second boy I found it impossible to hide my disappointment. I wanted a sister, who never came. You would let me have the baby bottle of rose-hip syrup from the hospital; a sweet but temporary distraction to my disappointment.
In those early years, I was utterly devoted to you Mum. I thought you were the most beautiful, the kindest, the best Mum in the World. As a toddler I’d fetch warm water and cotton wool balls when it was time to change my brothers’ nappies. I always wanted to help, to be useful. I’d brush your hair and rub your feet. In fact I can remember squabbling with the boys over who would get to pamper you, back then I think we were all devoted to you. Can you imagine if you asked them to rub your feet now?! I remember happy times. Picnics in the woods with our Auntie and cousins. Swimming at the public baths. Bedtime stories. I felt loved, I definitely felt loved by you. But I never felt safe. How can you feel safe when your Dad is an alcoholic who frequently smashes up the house and beats up your Mum?
Me age 5
The only ‘quality’ time we’d have with Dad was on a Sunday. He would take us to Chislehurst ponds to net fish for tiddlers. You would often stay behind. We’d walk behind him in single file. There was no mucking about, teasing or chasing. He expected total compliance. Ironically, net fishing in rivers and lakes with my boys is now one of my favourite pastimes. But there is much splashing, laughter and fun on our trips and we are all in the water together, not huddled on the muddy bank.
I never saw Dad in water, not in a swimming pool or in the sea. I never saw his bare feet. As an adult I realise how strange that is and I wonder if he was afraid because he couldn’t swim? Or whether it was a sensory aversion? What I do know is that the more I reflect the more I think he was Autistic like me. After all it’s a genetic condition, a different neurotype passed through generations. Think about his need for control, the strict routines, the repetition, the inability to regulate his emotions. It makes me sad for him. I know how lonely it is growing up feeling different, uncomfortable in your own skin, unsure why you don’t fit in anywhere, embarrassed by your fits of emotion, often anger. I also know what it’s like to use alcohol to be able to socialize, how your inhibitions drop, how you can suddenly talk to people you barely know. The trouble with my Dad was, he never questioned why he was different, not to my knowledge anyway. He allowed himself to be angry at the whole world. He let alcohol consume him. He punished the people who tried to love him. And he became a man his family feared.
Did I ever tell you Mum that I did eventually see Dad’s bare feet. N and I took him on holiday to the Isle of Wight with us, it must have been 2006, before we were married. He was on the beach in socks and brown leather lace up shoes. He stepped in a rock pool by accident. His shoes were soaked. How I cried with laughter. He looked mortified. He took off his socks and shoes and laid them in the sun to dry. His feet were the whitest skin I’d ever seen. Painfully white. He rolled up his trousers above his skinny ankles. I was struck by his vulnerability then and confused how I could feel this combination of pity and warmth towards someone who had ruined my childhood. Someone who would be out of my life for good, just five years later. As you know, he didn’t die. That would have been too easy. Maybe I’ll write about that another day.
We also spent time as a family on our annual holiday to Mullion on The Lizard in Cornwall. Neither of you could drive so we’d get the train down to Red Ruth where a taxi would collect us and take us to the caravan park. Dad was different in Cornwall. I think he genuinely loved it there. Every day we’d walk for miles (in single file of course) to Mullion Harbour. Or we’d take a bus to the surrounding beaches, Polurion Cove, the Lizard. We’d eat picnics on the cliffs overlooking the sea. We’d play in the sand, paddle, rock pool (rock pooling is still one of my all time favorite pastimes). You would sunbathe and dad would sit and read his newspaper.
Cornwall late 80’s
In the evenings we’d go to the ‘night club’ at the caravan park. That was where things would get difficult. Because dad would sink pint after pint, through the bingo, the kids games, the entertainment show and then finally the late night disco. He’d end up dancing alone on the dance floor while my brothers and I tried to stay awake. The younger two would usually be asleep stretched out across two chairs or in a pram. What was going through your head then? Did you ever ask him to let you take us back to the caravan so we could sleep? Did you long for the loud music to finish like I did? Long for the walk in the cool dark back to the caravan. He’d usually be too drunk to start an argument. The fact the caravan offered no sound proofing and he’d have to pay if he smashed up their doors, must have motivated him to control his temper.
I remember one time we were getting ready to go out in the evening and you and I were being silly in the shower room, tickling each other. You accidentally pushed me and I fell backwards smashing my lower spine against the rim of the shower tray. The pain took my breath away. I burst into tears and you looked terrified. ‘Don’t say it was me, say you slipped!’ you whispered urgently. Then you carried me to the sofa where I laid in agony, furious that you were so scared of him even on holiday.
But it all changed. You’ve never attempted to explain why but I’ve had eleven weeks to reflect and dig through my memories, trying to make sense of the hurt you’ve caused me. You told me more than once, that you’ve never felt truly loved. That you were never someone’s ‘number one’, never put first. You told me that’s why you’ve always put the men in your life first, because you just wanted someone to love you the way you believed you should be loved.
So Mum, I think I’ve worked it out. I think I finally understand why I went from being someone you loved to someone you bitterly resented. I loved you completely, wholly, obsessively. YOU were MY number one, my best friend. I looked after you. I was your helper. I was like a ‘mini mum’ to my brothers. You were all I wanted and I could never imagine leaving you. We were in a bubble and I was happy to stay there.
For the first 11 years of my life I was your constant companion
But then at around 11 or 12 years old, when I started secondary school, and especially at 15 when I started puberty, I became aware of life outside our bubble. I made friends. I realized I was good at ‘other stuff’ besides housework and rearing my brothers with you. I realized I was academically gifted. I was told I could have a bright career. I realized that I wanted to have a boyfriend. That maybe I wanted to get married and have children of my own one day. Simultaneous to these realizations about the wider world, Dad’s violence towards me had intensified. And as you know, you did nothing. So there I was, angry, scared, let down and faced with the realization that I could leave our bubble, could make my OWN life away from the control and violence and social isolation.
At the time, I thought you must be evil, to let me suffer so much. To ridicule and belittle me, shame me about my looks and my body. My teenage years are a horrible blur of arguments and physical assaults, degradation. But I understand now. I let you down. I stopped loving you as much as I did before. I went from being a devoted daughter who made you feel loved and important and worthwhile to being an independent and fiery young woman who wanted to get away from you. And that must have hurt you deeply.
And we all fall down…
I’m sorry I hurt you Mum. It was never my intention. I didn’t want to upset or reject you. I wanted to save me. I think it made you jealous when you saw I had friends and boyfriends. It made you angry that I dropped out of University because you would have killed for the chance to pursue your higher education. I remember you studying your Biology (GCSE or A level)? while we were at school. You got an A. You knew you were capable of so much more than child rearing and minimum wage employment.
I think you saw me find a husband, two in fact, who were genuinely good men. Who loved me and supported me despite my emotional and mental instability due to my undiagnosed Autism and Bipolar 2 disorder. You would criticize me as wife for not ironing their clothes, for being a rubbish cook, for standing up to them when I was cross or unhappy. Yet still they loved me, laughed with me, stayed with me. I think that made your resentment grow even deeper.
I’m sorry I hurt you Mum. I’m sorry I left you. But the things I pursued for myself were only the same, entirely normal and natural things my peers aspired to have. My successes in my career, in my relationships, as a Mother, should have made you proud. And it’s not like I didn’t have my share of pain too; my first born lost to a rare lethal chromosome disorder, my first marriage lost to my mental health issues, my body carved up by breast cancer…my life has been anything but easy. Yet still you view me with bitterness and resentment as I if I stole your winning lottery ticket.
In recent years since I had children, we have both tried to get along, to become closer. I genuinely think we both wanted that. But there was always an undercurrent of resentment. For my part, I admit I have never been able to shake off my deep anger towards you for the way you failed to protect our childhood (yes, I know you were scared but we were your children and we had no one but you to protect us). Beyond childhood, my teenage years, I have been unable to forgive you for the shaming, ridiculing, hitting, the inadequate preparation for puberty and becoming a young woman. You failed me on every level as an adolescent and despite prayers and therapy and the passing of time, I have been unable to forgive you…because you have continuously failed to acknowledge and admit your mistakes. You have flatly refused to apologize. And without that, it’s been impossible for me to move on.
Eleven weeks ago Mum, when we had our final falling out, I begged for that apology. I was desperate for that fresh start, to hear you admit the pain you’d caused me. Because I wanted to forgive you. I truly did, God’s honest truth.
Words spread poison, lies crawl like creepers
But during this eleven weeks a lot of stuff has come to light. And it’s apparent to me now that ever since I was a teenager, you have been spreading rumors and lies about me to people I love, or loved. Such was your resentment and anger that you wanted or needed to discredit me and as such you’ve caused irreparable damage to my relationships with other people in my birth family. What did you tell the Uncle who attacked me to make him do that to me? What did I EVER do that was bad or wrong, that would cause him to attack a teenage girl who had grown up adoring him? What did you tell my brothers to make them call me ‘the bike of St Paul’s Cray’ when I was actually known as frigid amongst my friends for rejecting boys’ sexual advances. What did you say to my brothers as adults that has made them complain to me about how much time you spend with us, as if we have been a burden to you or selfish with your time? Each time this has been raised, I’ve felt mortified, thinking ‘we barely even see her!!’ These brothers of mine who (so you told me) take all your money, live like slobs, mistreat their women, made you cash in your pension, look after their children when you are exhausted from work and caring for your own parents…I realize how naive I was now to listen to all your complaints about them without realizing that you would of course be complaining about me. And since I now know the lies you’ve told them about me, about ‘how much you do for us’, does that mean what you told me about them, was a lie? I guess I’ll never know.
Mum, I have neither asked nor taken anything from either of my parents my whole life. I have always been acutely sensitive to how stressful your life is and how overloaded you are. I have tried everything possible to make your life easier. Do you ever tell anyone the good things I do? All the times we’ve taken you on holiday with us or for weekends away, usually at N’s expense. All the practical help, doing stuff in the house, running errands, all the little thoughtful adhoc gifts and surprises be that hand wash to match the color of your bathroom, special blankets for your dog so she doesn’t wee on the floor, or drawing chalk pictures on your driveway during lockdown. We never asked you to babysit unless it was an important medical or school appointment because we knew you were already stretched to the max. We would never be so selfish, unlike others in the family.
As you know, I wrote to Grandad last year, begging him to reconsider a couple’s care home or moving to our local town, because I could see how the constant long distance traveling to them and caring for them was killing you; he never even acknowledged my letter. You told me how upset he was but me, he ignored completely. In my opinion he’s quite happy to throw you under the bus and let you see out your life clearing up after them like a servant. It’s what suits them best. He doesn’t want to factor your needs in, he never has.
Talking of Grandad, his recent and most spiteful message to me talks of my ‘appallingly bad behavior over the years, (often nasty)’. What behavior is this he talks of Mum? What have I EVER done that was appallingly bad or nasty? I’d love to know. And it’s interesting because in recent years, despite being the only one of your children who has made the effort to visit him and Nanny on a regular basis, I’ve often felt his inexplicable disapproval. And I’ve asked you outright ‘Mum have you said mean things about me to Grandad as he treats me differently’ and you looked shocked and said ‘You have to trust me! I would never talk badly of you or do anything to hurt you’. How gullible I am.
Now the thing is, bipolar and OCD and anxiety aside, I’m NOT mad nor in crisis. I am seeing clearly for the first time in my life. You have been campaigning against me for almost three quarters of my life!! Did you honestly think I’d never find out? And it hurts, Lord knows the tears I’ve cried the last eleven weeks. And yes, my heart is broken. For all my health problems, I’ve never had trouble with my heart, but since recent events my heart is now firing off blood clots into other parts of my body blocking my arteries. Maybe it’s bad timing. Or maybe you really HAVE broken my heart.
As for my brothers, I love them. I feel sad for them. I feel angry. I think they’re cowards. Friends and family have made me understand that their desire to silence me, to sweep my allegations under the carpet, is both selfish and driven by fear. The past has scarred them deeply and they don’t want to deal with it, not now anyway.
And so I say goodbye and walk towards the light
So before I say goodbye for good, I want to say that I love you Mum. I’ve never stopped loving you. I want to hate you but it’s too hard. Seeing you walking by yesterday as I drove H to school, all I wanted to do is jump out the car and hug you and tell you to get in. But I couldn’t and I can’t. N said I care too much. That I let pity overrule me. He says we are better off without you and I know he’s right. But still; I love you. I want you to live well. I want you to be happy. I want you to know that I’m thankful for the first 11 years of my life when I know you truly loved me. Your life as a parent started painfully young and without the support you needed from your own parents. The choices you made later on, when I pursued independence and you punished me all the way…I don’t blame you for. I blame my Dad. I blame your parents. For letting you down. For mistreating you. For denying you the help you so clearly needed. For letting the violence against you continue in plain sight because it was more convenient for them.
I still wish you’d been braver, stronger, kinder. I wish you’d tried to break the cycle of abuse, I wish you’d been proud of my achievements. I wish you’d helped me fly instead of throwing stones behind my back.
No one knows how much time anyone has left on this Earth but I pray you spend your time left doing things you enjoy with people you love, instead of sacrificing yourself blindly to people who use you. Maybe not having me to blame and resent anymore will be the push you need, to do what makes you happy. Take care Mum xxx
An Autistic advocate I really admire has recently decided that she will no longer use the label ‘Autistic’ and is no longer going to identify as an Autistic advocate. This is as a result of bullying from within the Autistic community who have criticized and judged her harshly because of terminology she has used, because of her beliefs, her opinions, her life choices…it’s really been quite horrible to witness. And it got me thinking….that whilst I am proudly Autistic, I don’t want to be a part of the elitist and ableist culture that seems to be growing in parts of the Autistic community.
Like this writer, I too am late diagnosed Autistic. I’m also mum to 2 Autistic boys. My diagnosis has been wonderful in many ways e.g. in how I understand myself and my differently wired brain. But I’ve been disheartened to meet and come across many outspoken Autistics whose behavior verges on bullying. I hoped I’d found my ‘tribe’ when I was diagnosed, but in truth many of the Autistic adults I’ve met try and dictate how other Autistic people identify and label themselves, they regard themselves as intellectually superior and talk down to neurotypicals (people with the most common/frequently seen type of brain). If you dare to think differently to these people they accuse you of ignorance or discrimination.
All the same tribe? Certainly the same species yet gloriously different! Photos taken at Sealife London Aquarium.
When abuse from my birth family almost broke me, my Autistic ‘tribe’ weren’t there. Their silence was deafening. Now I loathe functioning labels for many reasons, maybe I’ll write about that another day. But as someone who meets other Autistic people regularly through my work and through the communities I navigate on social media, I started to realize that amongst the ‘high functioning’ verbal and intellectually able Autistic population, there are some very mean spirits. There are people who aren’t kind. Who don’t accept others differences. People who are selfish, mercenary. Who block constructive feedback and seek adoration purely because they’re Autistic. That makes me very uncomfortable.
Then I realized something else…these types of people, who judge and talk down to anyone who doesn’t think and speak like them, exist in every neurotype, in every breed of human being. There are good guys and bad guys in every walk of life. There is also a huge apathy crew who sit on the fence and won’t commit to any cause be that climate change, Black Lives Matter or Autistic acceptance. These people can be even more dangerous than the bad guys! There are do-gooders too. Now these people look like they’re being good guys, but usually they blindly follow a cause without understanding it. They attach themselves to a group like a Remora to a Dugong because it makes them look good, because the cause is popular, because it gives them a sense of belonging. But they are slow to learn about the issues they claim to represent and quick to demonize people who challenge their beliefs. In time they’ll get bored and move on to the next new cause.
The incredible Dugong my husband and I encountered diving in Sharm el Sheikh.
So I finally figured out, my tribe are whichever people love and respect me and show me the same honesty, support and understanding as I show them. My tribe are the people who make the effort to learn how my brain works and who accept my quirks and rituals. My tribe give me feedback kindly when I mess up and they show me forgiveness because they know I try hard to learn from my mistakes. My tribe know I can be brittle and over sensitive from a lifetime of being misunderstood and judged, so they try their best to understand me just like I try to understand them.
Discovering I am Autistic was life changing and overwhelmingly positive. I adore working as an Autism trainer teaching other parents, carers, teachers and employers how to best support the Autistic people in their lives. I love writing my blog and sharing my experiences of living with Autism. But I’m just one person. Talking about my life. My experiences. My tragedy and trauma. My happiness and joy. I don’t speak on behalf of all Autistic people because I don’t walk in their shoes. I have no right to claim Autism is a Superpower, neither can I say it affects all of us as a disability. There are Autistic people for whom learning difficulties or co-morbid physical conditions are extremely disabling. In my lived experience, it is my mental health conditions that disable me, that and the judgement of others.
I hope that some people can relate to my writing, that it teaches them something about Autism. But my stories are mine, unique to me. Because we are ALL unique and belonging to any type of group does NOT mean we have to conform religiously to the language and beliefs of that group as if it were a cult!
All birds but so diverse in their abilities, their look, the way they sound, what they eat….Photos taken in various locations, in the wild and captivity.
There is comfort and security and learning in mixing with others ‘like you’ but when I look at my tribe, they are truly diverse in age, race, sexuality and neurotype. What unites us is a common set of values, a genuine desire to be kind, to look out for each other, to understand each other and to forgive each other when needed.
What I’m trying to say is, you do you and I’ll do me. Let’s all make the effort to be more tolerant and kind. With empathy and making the effort to learn about others’ challenges we won’t need to hide behind labels. I’m Autistic. I’m Bipolar 2. I’m OCD and Anxiety and PTSD. I’m a wife, a mum, a friend. Most of all I’m ME.
If reincarnation is real I hope I come back as a tree. A beautiful, wise, strong, tree. I want to look out across amazing views. There must be water in sight, a rolling river or soothing sea. I’d want to be a protected tree, free from risk of being chopped down, burned or built on. This life has dealt me quite enough blows, I’d like to be left in peace in the next one please.
So let me tell you about my THUMB. It all started with our recent camping holiday. Seven days of adventures in rural Kent. We had three nights in a hop pickers hut on a farm. Countryside views and campfires galore, compost toilets and no electricity. I was most impressed by our nine year old L, who used static electricity to charge his iPad from zero to 8%!
Next we moved to a riverside campsite for four nights. Storm Francis did its best to blow our tent away. The smell of the chemical waste disposal (10 paces from our tent) and greasy burgers wasn’t quite what we’d pictured. But the canoeing on the river made up for the stink and the ‘old beardo’ germs H declared were in the rather yucky toilets and showers.
I woke up on day one and my left thumb was absolute agony. If I didn’t know better I’d have thought I’d hit it with a hammer. It felt hot, tight, burning. I moaned a bit because I’m a wimp with pain, took an antihistamine in case it was an insect bite and tried to forget about it.
As the holiday continued the pain got worse. My thumb started to turn a horrible purplish blue color. The nail beds on the other fingers of my left hand started to feel bruised and sore. It was irritating that the pain wouldn’t ease and it started to keep me awake in the night. The day we came home I noticed the thumb had gone freezing cold. The tip was numb. The pain now radiated into my palm, wrist and forearm. I made a vague commitment to N to call the Doctors but of course it was a bank holiday so they were closed.
Now being Autistic I hate using the phone, it makes me horribly anxious. But you can make initial contact with NHS 111 online now and within an hour a lovely GP called me back. To my surprise she mentioned clots and vascular issues. I felt mildly panicked but my personal Jiminy Cricket was telling me to calm down because I’d had enough bad luck to last a lifetime. (If you haven’t already, check out my recent blog on gaslighting and domestic abuse to get the full picture. It’s not an easy read so if you don’t want to cry, just take my word for it that I really lucked out in the parent and sibling stakes)…
Anyway after stalling for most of Sunday I took myself to A&E. Over the course of several hours and the hard work of numerous wonderful Doctors and Nurses I had bloods done, an X-ray, an ECG and an angiogram to look at the blood circulation in my left arm. It turns out my poor purple thumb is being starved of blood supply, and the consensus is that I have clot(s) in my arm.
I finally got home around midnight, took some codeine and waited for the Vascular Surgeon to call me this morning.
The Surgeon has started me on immediate blood thinners to reduce the risk of further clot formation. The vascular team will arrange more tests; heart scans, heart rhythm monitoring, more blood tests….answers are going to take time but I’m fine with that as they’ve assured me I’m not in immediate danger.
One of the most worrying things for me is that my thumb may never recover and in the next few weeks we’ll have to see if it goes black and separates…It was bad enough losing a breast but losing a thumb is just way too gory for me and I can’t help feeling I will scare small children!
Meanwhile the pain continues in my thumb, spreading into my wrist, arm and now behind my shoulder blade. I’m not feeling great and can’t see myself participating in body combat or breakdancing any time soon. But I am very glad to be alive and this has definitely put my suicidal thoughts into perspective. Despite the horrors of my childhood and the rejection by my mother, siblings and maternal grandparents, I will not let their cruelty stop me wanting to live. My loving paternal grandfather died a young man from a clot that travelled to his brain. My father has DVT and has been hospitalized when clots have travelled from his legs to his lungs. So you can appreciate how scared I was alone in hospital being told I had blood clots in my body…my highly emotional Autistic brain went into overdrive. I imagined one wrong sneeze would send a clot hurtling to my lungs or heart to finish me off.
The moral of this story is that you should listen to your purple thumb! Trust your instincts. Pay attention to your bodies. Most importantly, pay attention to the unique connection between our body and minds. It’s no coincidence that I’ve developed blood clots, for the first time in my life, whilst suffering horrendous stress and heartache at the hands of my birth family over the last month. Stress and trauma really does cause blood to clot, that’s not speculation, that’s medical fact. When I developed breast cancer at 39, as a healthy, non smoking, vegetarian I researched causes at length and discussed them with my oncologist. Emotions affect hormones and immune health. Childhood trauma and psychological distress create the perfect biological landscape for disease to spread. I’m not just ‘unlucky’ to have fallen foul of ill health. I’ve been groomed to succumb to disease because of a lifetime of abuse.
But I’m taking back control. My body, my life. I am caring for my biological terrain. I am surrounding myself with the love of my amazing husband and sons; we are an unbeatable campfire making, tandem canoeing, rock pooling, wild swimming, kitchen partying, movie night snuggling team. I am embracing the people who do love me and mine. My dear friends old and new, my husband’s maternal family, my kick-ass Aunties and Cousins on my maternal and paternal sides who know my truth and aren’t afraid to stand up for me; my 2 beautiful sister in laws who have overcome marriage to my siblings and who give me the dignity and strength to retreat from my persecutors and not to lash out in spite like they do to me.