I’m writing a book about my life. It almost seems sensational in aspects. The main gist of the story is that I was born in 1980. I was diagnosed at age 4 with a neuromuscular disease, Spinal Muscular Atrophy. Raised in a dysfunctional family with an incredibly overbearing mother and a stone cold, yet explosively fiery father, I struggled through a hellish existence at home while enduring a nearly as bad scholastic experience at a high school that didn’t want to provide any services necessary to make my school years run smoothly.
You can get a brief synopsis of my life through my About Me section, but that hardly touches the surface of my life. This also talks about my transition from female to male, as well as the surgery I almost didn’t survive. For a long time, I blamed myself for everything. I’d been told by so many people I was a terrible person, always to blame for all of the trouble that happened in my family. I was told I should be grateful for what ‘sacrifices’ my family made, even though those sacrifices came with a price (often abusive in nature). I believed it until I finally opened up to a therapist for the first time (I’d been in therapy since I was five, but never really opened up or spoke – I was rather sullen and that often led to me being blamed for all problems family-oriented) when I was in college. For the first time, I was told, maybe it wasn’t my fault.
That was nearly ten years ago, and I still struggle with the issues caused by my life in a dysfunctional family. The only true sacrifices made were by my older brother, who was often talked into not doing something due to my disability (such as going away to the college of his choice). It’s something I now believe he blames on me, and is part of why we haven’t spoken in five or so years. While my dad is dead, and I’ve come to terms with our tumultuous relationship (we talked a lot while he was in the hospital dying and worked out our issues), I don’t and won’t ever speak to the person I once called my mother.
I can forgive what she did to me, but I will never forget the years of abuse and torment she put me through nor can I forget her response of “so what?” when I confronted her on the telephone about some of the more physically hellish abuse (she never saw it as abuse – she was ‘making me beautiful’ – against my will) she inflicted upon me. She doesn’t see it as abuse, nor does she see it as her fault.
The final straw was her treatment of my son, CT. He is 13 years old now, and autistic. For reference, he’s my adopted son. I’ve been dating his mother since 2002. Not only did she yell at him repeatedly, and take things out of his hands without asking for them (something you never do to an autistic – it was mine and I let him hold it, but she neglected to ask that – she just grabbed it from him). She also told family members that he (at age eight) couldn’t really be taken out in public due to his autism (a lie).
She said this because I chose to get us dinner delivered when she visited us merely because he wouldn’t eat from that restaurant (he would have had to sit doing nothing at the restaurant while we ate) and I prefer eating at home anyway. He would have gone and sat there, but seriously, how fun is that for anyone? As a result, his mother (Ash) and I were invited to my grandparents anniversary, but I was told he wasn’t welcome. I opted not to go (I had fractured my tibia and was bed ridden anyway). It’s bad enough she messed with me, but to mess with an innocent child that isn’t even hers?
We haven’t really spoken (except when she answers the phone at my ailing grandmother’s house – where she lives) in the past five years. I am happier that way. She brought so much anger, anxiety, and roller coaster emotions to my life, so that is part of why I’m writing this book. I expect I’ll be told this is all a lie (she denies she said “so what” about the abuse to family, but I wasn’t alone when I was on the phone – Ash also heard her say it since I often have to use speaker phone), but nobody likes to be confronted with such ugly truths. I just hope that I can find an audience for this story and hopefully help someone else, disabled or not, who is living in a hellish, hateful environment.
I managed to escape at age 19, after one unsuccessful attempt trying to cut my wrists. Now, I don’t even need antidepressants. I still get sad, and upset when I think about the past sometimes, but everyday I try to remember what a nice future I’ll be living and a comfortable present I endure. That makes straightening my life up worth while.
[tags]working, book, Ash, Dominick Evans, abuse, life story, writing a book, novel, non-fiction[/tags]
Dominick,
I know you from facebook. I am Jacob, SMA I, Mom. I cannot imagine treating a child with a disability such as SMA, I imagine you are a higher functioning SMA than my Jake, with anything except love and tenderness. Shame on your mother for trying to make you anything more than who you are. I applaud you for trying to make a difference. Good luck with the book.
Jennifer
Hey Jennifer –
Thanks so much for responding to my post. Glad you found my blog. My mother would say that she treated me with love and tenderness (though her version of such is quite skewed).
I was higher functioning than Jake. I walked until I was almost 16, but this meant my parents either treated me 100% like nothing was wrong, tried to push me beyond my limits (like requiring me to spend 8 hours a day swimming laps in a swimming pool in the summer – until my body was pretty much useless), or treated the problem as worse than it was in what seemed like an effort to garner sympathy.
Of course, the latter was usually outward toward the public and not towards me, as much was expected of me, as though I didn’t really have a disability at all. At one point, my mother insisted it wasn’t SMA, at all. It was some weird muscle thing where my muscles didn’t work as fast as the average person’s did, but it wasn’t a disability. I heard so many different theories, it was hard to know what was wrong with me for a long time.
Anyhow, I hope you, Jake and your family are doing well. I hope this book will open up some eyes to what happens in some households, what constitutes abuse and that a disability doesn’t have to make a person a doormat to those who are supposed to be caring for them.