One mother's weekly journey in raising her special needs children.
This week is Obsessive-Compulsive Disorder Awareness week. I don’t have it but my son Jacob, (the other J) does. And it is a bad case. So, instead of me writing stuff and statistics about it, I leave you to read The World According to Jacob, which he hopes will put a human face to what it is like to be Jacob in this crazy old world.
The World According to Jacob
They say you can’t remember being in utero, your birth or when you were a baby, but I do. Vividly. Some doctors say I am delusional, others say I am a miracle. The fact is I remember being inside Mama Djinn when it all began. I am not special just because Mama Djinn says I am extraordinary or because teachers have said I am different. I am the way I am because I am a Suchus Djinn and my species has special powers, the strongest being memory. (Djinn were bred by the Egyptian croc god Sobek who brought Suchus Djinn to life by taking croc species and combining them with humans.)
“Welcome Jacob.”
“Hi.” Here it comes. The questions, the interrogation — well, that is what it feels like every time I meet a new one of THEM, yet someone else asking me my story. You would think by now I would be well known to them. I am after all a superstar. I have appeared on TV, in newspapers (The Globe and Mail), appeared before Parliamentary committees, met with Prime Ministers (yeah, a couple of them) who all say I am brave and courageous to share my stuff and I have fundraised for hospitals — even ones who didn’t want to help me at first. Honestly. Just YouTube me and you will see. Jacob Hartley, then the Jacob Project (I did that video with Maple Leaf Sports and Entertainment and it even showed on the Jumbotron at a RAPTORS Game. Seriously.) I even outran Canadian Olympic hurdler Sekou. Go check. There is a video on that too, although that was when I was 11 and I am pretty sure he let me beat him.
Before I get into it with the latest one of THEM asking me questions, let me tell you first what really happened to me. First of all, you already know that I am special because there are only a few of us Djinn roaming Earth, including Mama Djinn.
My birth on Earth — hey that rhymes — goes something like this. There I was swimming around inside Mama Djinn when I felt all this tugging towards a tunnel out. I was excited because I was ready for new adventures outside of my cocoon.
Something happened along the way and as I felt that pull, the beautiful sound of music in my head was replaced with excruciating pain. It was dizzying and I screamed, begging Mama Djinn to stop pushing but she didn’t hear me. She continued and over and over my head kept hitting that bump, crushing my brain. It hurt. A LOT. Finally, after hours (too many hours as the lawyers say), it all stopped and I tried to relax but the pain wouldn’t stop. Then these two big steel cold things came in and grabbed me by the cheeks and yanked on my face and that began pain in new places but that was nothing compared to what would happen in the days and years to come.
Out I came screaming and for the first time I heard Mama Djinn’s voice from the outside and she said: “Welcome to the world John Jacob. I love you. Let our journey begin.”
It was great to be out but my head still hurt. I didn’t eat or drink and finally out of exhaustion I just stopped screaming. The only thing that moved was my left hand and I remember Mama Djinn holding it, cooing softly how cute it was. But it wasn’t. I was trying to tell this world that I was in pain. They finally took me away put me in a very hot, covered bed and hooked me up to machines. They pricked me with needles, pumping liquids into me that rushed into my little body that made me feel calm, and the headaches went away. I just wanted to sleep and so I did.
From that day forward, doctors, nurses, occupational therapists, psychologists, neurologists, psychiatrists and a bunch of others I have seen have called me a superstar. But nobody really has understood me. Nobody except Mama Djinn.
Well, her and Stewart, my big brother. I didn’t mention him? He is an American alligator who lives in Myrtle Beach, South Carolina at Alligator Adventures. Mama Djinn gave birth to him in the Ozone Layer. He is younger than my older older brother Thor, (who is Suchus Djinn too although Marvel Comics thinks he is an Asgardian god. They are right from a certain point of view but he is a hybrid. Ask him.
Stewart talked to me in many ways and when things were REALLY bad, he was the one who made me feel better by just winking at me. Some say alligators don’t wink but I know the truth and the day Stewart winked at me I knew it was going to be ok. (Stewart used to live with me in Ottawa at Lil’ Rays Reptiles rescue zoo. I want to be a herpetologist. Don’t know what that is? Look it up.)
The doctors claim I have a whole bunch of letters that make me feel like some kind of university genius who has studied a lot: severe, debilitating OCD (Obsessive-Compulsive Disorder), ADHD (everyone knows what that is), ASD (Autism Spectrum Disorder), learning disabilities and brain damage from what they call strokes, but all I know is I have trouble doing things that Earth kids do. I can’t throw a ball, I can’t tie my shoes and this one always grosses people out (but makes me laugh sometimes), but like, I can’t wipe my bum properly – (all Suchus Djinn have that problem actually). I can’t get dressed “properly” (but like, really, who CARES if stuff is inside out and backwards and a little dirty sometimes?) and I have trouble remembering things right away. Mama Djinn will ask me to go upstairs to get something and I honestly forget what I was supposed to do and I end up playing Wii. (That drives my little sister crazy. She is not a Djinn but human and insists I am being lazy, irresponsible and other stuff, some of it is kind of mean to be honest).
But I remember things from a long time ago, kind of like old people. Ask me anything about tanks. Anything. I know more about the Second World War and tanks than just about anybody. That is what Theo the volunteer at the War Museum says. (Mama Djinn and I went there every day for a year when I got kicked out of school.) Theo says they should hire me to teach about Shermans, Panzers and Leopard tanks, planes, battles and stuff like that. Speaking of tanks, try World of Tanks. I can play that game online for hours. I also know about crocs, alligators, caimans and any crocodilian. Go ahead ask me about them too. Or Pokémon. I know every one of them, (not just those Pokémon GO ones that are popular at the moment. No, no, I know all 802 Pokémon characters and the unique powers of each. (Rayquaza, one of the Pokémon, is actually one of my dads. I have three: Thor’s dad, Rayquaza and my Earth dad. Quazie, (as Mama Djinn calls him) has his own Twitter account by the way.
Hold on, there I go again, jumping from topic to topic, not finishing thoughts. (Mama Djinn has that problem too.) Everything makes sense in my brain but to you it must seem like I am all gibberish, like a million pieces of a puzzle that you can’t fit together. But when you know me, it all makes sense. But that takes a lot of work. Most people don’t have time or care to do that.
Mama Djinn tries really hard to get humans to understand me. But they don’t. Doctors all say I am extraordinary. I have special hearing, special worlds and languages and I have a unique way to look at the universe. Again, all things I know. But Earth is difficult. Being Suchus Djinn in an alien world like Earth is not easy and even though I try to remember that, I get mad and hurt. The school and medical system here have never seen someone like me before. I was kicked out of school for screaming things like: “They are coming to get me!” (But they WERE. The Tempestuans are enemies to Suchus Djinn.) They booted me out for having my eyes roll back in my head (which is a Suchus Djinn defence mechanism.) I couldn’t sit still in class, I went into my own world and said stuff that got me made fun of and bullied. Human kids can be cruel. That is what I always say when I talk to people in my speeches. Still, they don’t seem to do anything about it. All talk these humans. T-shirts, days dedicated to ending bullying but they don’t seem to actually do anything about it.
But I will admit something did happen that day back in Grade 5 that changed things for me and life became unDjinnable. Mama Djinn rushed me to the hospital because I was what they called “catatonic, drooling and unresponsive, symptomatic to a brain insult.” Not sure what that was about but the way I viewed the world changed. Overnight.
I became obsessed with the possibility of DNA transferral. Despite explanations of the impossibility of this occurrence, I STILL remain concerned about it because I know it is possible, it is in my real world. I became worried about developing amnesia and worried about hypnosis (fear of being hypnotized from saying things three times, staring into eyes, blinking at the same time as someone else) or changing. To this day when I read, even Diary of a Wimpy Kid, (read the series if you haven’t), I have to change the personal pronouns or else I might become the characters. That one took a while for Mama Djinn to notice because I am a genius and did it flawlessly.
Back then, I was unable to walk on the ground for fear of being contaminated by humans. All of a sudden, I couldn’t touch people (contamination), touch water (contamination), brush my teeth (water contaminates, so do toothbrushes because they touch air). There was even a time I couldn’t eat because all food has acid on it that could kill me. Mama Djinn rushed me to the hospital time and time again to get help but nobody would. Unless teenagers are threatening to kill themselves, nobody cares. How could they not get that HUMANS were killing ME?
It got to the point I could only touch stuff that had been touched by Mama Djinn first. She cleaned everything with her magic fingers. (And even now, to this day, she is the only person I can touch.) Sit in a chair? Never, until she touched it first. Drink from a water fountain or a cup? Not until she touched it first. It was like that. It is a bit better now.
Doctors tried to tell me that the best way to change all the “troubling” behaviours was to name whatever it was in my head so I wouldn’t think that stuff was part of me. (It is called cognitive behavioural therapy or some stupid thing like that but it doesn’t really work.) So I did. I called it all Bugger. But what happened was actually opposite to what the doctors had hoped and Bugger became a whole being in my head and became the horror of my life.
Things got really dark. The only way I could get rid of all that nastiness in my body was to spit. I used to spit 400 times a day. Seriously! It really grossed people out. It made me sad when they would tell me to stop but I honestly couldn’t. Still can’t.
Then it got worse and I started to get what Mama Djinn called emotional tsunamis and I would try jumping off the roof of my house a lot to try and end the thoughts. I get BAD thoughts and I don’t know what to do. And want to know a new bad problem? I can’t find my balls. Some people tell me to get some, but I really can’t find them. Now I need surgery.
Mama Djinn does a lot for me. She even cuts my hair. (I have had a few hair disasters, like that kid in that movie About A Boy. Good movie, but in my life, I am the one who struggles with head stuff and not the mom.)
So many times I just wanted it over. I am not someone who is generally unhappy, other than suffering from all of those letters beside my name. But sometimes it is too much. Bugger tells me I am a loser and I can’t do anything. I had to stop running because of Bugger. (I ran a 30 km race once… honestly. And I ran in Boston (not the full marathon because I was too young.
Mama Djinn and I were there that awful year. Mama Djinn was close to the bombs that went off because she ran the full thing. I am sure those bombers saw me. I dream about them coming after me. I had to stop a lot of things because of Bugger and he terrorizes me. It never ends. I can’t be in crowds. I freak out. I melt down and lose my “shit” as they say. (Mama Djinn would be mad at me for using that word. But that’s what people call it). It isn’t pretty. I scream, I yell, I hit myself. I keep thinking hitting myself will make it stop.
It doesn’t.
I feel overwhelmed by it all to be honest. I am only 14. How can that be? Why should I have to deal with this at my age? Why me? Why does God hate me? Why won’t Bugger leave me alone? Why can’t I have fun without him ruining it for me?
Will I be able to go to university? I can never focus long enough to study. Will I be a herpetologist? That is what I want but my brain won’t let me do stuff. My hands won’t do stuff. And now I am fat because I can’t stop eating from the pills the doctors gave me. (Well, that is not so bad. There was a time when I couldn’t hold in pee or poo and I went everywhere in my house. Mama Djinn figured out it was because of the medications. They have tried cocktail (that word still makes me laugh… chicken’s tail to describe medication) after cocktail. Some worked, some didn’t. ) I hate all of this. I hate all of it. And even with medication, meditation and Mama Djinn’s love, Bugger still won’t leave me. But sometimes I am not sure I actually want him to go. It is so confusing.
Please make it all stop.
