I have my Pune book launch to attend in 3 hours from now. I should be excited or nervous right…like most people. I’m neither really. I’m mostly excited about something else all together or nervous about something else – it’s never quite the event. This is thanks to my confident self – a trait I’ve had ever since a kid. Public speaking or performing was never a problem for me as I’ve been doing it for a long time. The lack of confidence that came with my schizophrenia has no connection whatsoever to my confidence. I’ve had minute seizures even while performing mime and it appears as an act to most people. What I deal with alone in the make up room is between me and my body. I’ve survived a suicide attempt and attended a conference panel and had a partial convulsion right after only because I had to hold myself together during the panel.
This is a little background on the way I am and the invisibility in the invisibility that I carry. It is again important that I write it because majority of people in the world don’t see invisibility and the only way to really get them to think is by using words to communicate it.
Unfortunately I am also very tired of explaining myself so often. I have only gone by one label ‘SCHIZOPHRENIA’. Yes, this is how I have come out of the closet. BUT what everyone needs to REALLY keep in mind is I AM MORE THAN SCHIZOPHRENIA. This label might be an attention grabbing point no doubt but I have other health issues too.
Before my book launch in Delhi on the 1st of March – I had already reached a burn out. I don’t know how many people really know what this word means. Many things transpire in my daily life. What I appear or show is just the Resh who has always been this way. The night before I left for Delhi I couldn’t sleep even if I wanted to because an adult pup had fallen in a 6ft ditch in my backyard. My cousins and me were up trying to rescue it. Upon landing I received a ridiculous email by a person assuming that I was giving a silent treatment because I had not put this person in touch with someone on top of which accusing me of doing cool things to be a hero (even if it was rescuing a pup). It was hardly 24 hours since we last met and I got taken aback by the level of impatience, insensitivity and assumption that I got nothing else to do in life. I let it go as any stress can cause a seizure.
What really happens in a seizure IS NOT A JOKE! Some seizures don’t show physically so no one can really SEE it. Imagine the insides of your body (every muscle) being twisted and turned and knotted up and then it travels all the way to your face and head. Everything starts throbbing and all you can do is hold on to your breath, make sure you have something soft to fall on or lie your head on and just wait…in pain. The pain is excruciating. There are times I have screamed. Right after what is a minute but feels like a day (because disorientation – memory loss – and dissociation to some extent sets in), my entire right body is left in a limp and my left has to drag it around. It isn’t a nice sight so I avoid meeting anyone or come up with a different excuse. It has been over 3 years this has been going on with me post brain tumour.
The left part of my body has kept compensating and overworking for my right and BOTH have equally exhausted the entire system. I don’t imagine MANY people would understand what this feels like. I am known to put a smile and crack jokes even after coming out from a brain surgery or before entering one because this is how I am. Quite deluded in believing I am an alien trapped in a human body because otherwise there is no other explanation to the many health issues I keep having. It is so much more comforting to believe I am an alien.
But recently, I’ve had smalls lumps around my left breast, an inflammation right under it which pokes when I sleep making it difficult to rest. The pain would travel to my arms and back and I begun sleeping on my left as it feels better. Along with that I seemed to have dropped 2 kgs since then (not intentional). These symptoms mimic a lot of serious conditions also giving my mother has had breast cancer and my dad has had angina and bypass and both of them have diabetes. It’s the first question one physician asked me. My other physician and me believe that with me none of these issues would arise as I specialise in the brain department – either madness or exorcism. Nonetheless, I have to deal with whatever these cluster of symptoms would mean. Thankfully the apparent lumps disappeared right after I got my periods – so that’s another new response my body has developed. Phew.
My yoga teacher was the first to know about the inflammation on my rib as it was quite large and tender. Since she pushed me to get an appointment I did. Right now, one physician pointed out that it is likely a group of muscles that are injured. I am not surprised that this be the case as I did get a right shoulder muscle injury 3 years ago after a very bad seizure and it has only recently healed. This healed shoulder has finally made my process of bathing comfortable which had NOTHING to do with my SCHIZOPHRENIA even though sometimes I don’t like to bathe. THERE IS A HUGE DIFFERENCE IN NOT WANTING TO BATHE AND NOT BEING ABLE TO BATHE. Before that, I had a price to pay everytime I showered – a terrible muscle spasm which affected my motor coordination made it difficult for me to put my shirt buttons. So I stopped wearing formals. Of course now when I wanted to wear them I can get cheeky about buttoning and unbuttoning and I do have a list of people waiting to help 🙂
There’s really a large list of things I can’t do which I don’t bother talking about because I am already busy with stuff I am doing. But it’s made me realise that people don’t know that. They yet judge a book by its cover. They yet assume. They yet take things for granted. They yet think the reflection they look at is the only possible reflection there is. And I am tired of explaining so often. But I do. Because I am not the only. When I seek comfort of others I know who fall under the category of ‘rare conditions’ and ‘rare diseases’ there is a sense of not being alone. I am not talking about schizophrenia. It’s enough that I feel alone in this department. I use this term ‘rare conditions’ because people don’t know about people like these who exist! And maybe I have it lucky to be in touch with them that they talk to me and I can now tell the world to open their bloody minds to differences at SO MANY LEVELS!
Schizophrenia is just ONE PART of who I am. It’s a huge part, YES. It is where I get my strength from, YES – because I have learnt to see the gift it brings even though the otherside is a curse – both being relative. I am not here to sell a label or an illness which to me doesn’t exist. To me it is a different experience I’ve learnt to live with.
But what I really am still upset about is this very label and the ongoing issues around it that says ‘Everything I experience is in the mind’. I write this again keeping in mind others who walk similar roads. I’ve lived with on going conditions that have been passed off as psychosomatic. When I went through my abuse and recollected it, someone passed it off as an imaginary memory. When I tore a ligament while training for a marathon I was called psychosomatic until a doctor saw it. When I injured my pinky during basketball, it was called psychosomatic until I met the same doctor who asked me ‘Are you crazy? It’s a fracture. If you came earlier I could have put a cast on it. But now you just have to wait for it to get back by itself or live with it.’ When I had palpitations and sweat, I was treated for anxiety (which I have been treated for before so I do know the difference). It turned out to be high fever and an allergy to certain medications. When I began itching and scratching, I was told it’s all in the mind because I read about it. The next day I developed hives which had spread to my face and head and I was unable to breathe. My arm was oozing with blood. I was given anti-histamines. When I got severe convulsions in a row and was rushed to an emergency ward – I was given sedatives (for being psychosomatic) enough to put a male adult triple my size to slumber. It turned out to be a brain tumour. When I was having difficulty breathing and would just fall on the floor – I was treated for anxiety and psychosomatic. I would get up and POOF fall. It got difficult to do anything. Upon admission – a visiting psychiatrist noticed the same meds I was given changed my BP which is different while resting, sitting and standing. All she did was stop the meds and I was back!
This is just a small list of important encounters I have had with the word psychosomatic BECAUSE I have schizophrenia. All of these are near fatal issues. If someone thinks I actually have the ability to cause these then most certainly I must have superpowers that need to be channeled differently.
Please know that what is psychosomatic for one person is NOT for another. When you look in the mirror it seems to be looking back one way because you are standing RIGHT IN FRONT OF IT. But a mirror like everything else in life has many angles. If I need to explain any further than this – it means you need to flush your head in the toilet.
Now I need to go shower, breathe and get ready for a date with my awesome publisher. I’m more excited that she’s in town than my actual launch.