Dear all, an update is in order. While talking to physiotherapist couple of days before, came to know the correct term to what was I experiencing. I had experienced convulsive ‘seizure‘ , spasms being a part of it. Reading the wikipedia entry and the associated links/entries it seems I am and was very very lucky.
The hospital or any hospital is a very bad bad place. I have seen all horror movies which people say are disturbing but have never been disturbed as much as I was in hospital. I couldn’t help but hear people’s screams and saw so many cases which turned critical. At times it was not easy to remain positive but dunno from where there was a will to live which pushed me and is still pushing me.
One of the things that was painful for a long time were the almost constant stream of injections that were injected in me. It was almost an afterthought that the nurse put a Vigo in me.
While the above medical device is similar, mine had a cross, the needle was much shorter and is injected into the vein. After that all injections are injected into that including common liquid which is salt,water and something commonly given to patients to stabilize first. I am not remembering the name atm.
I also had a urine bag which was attached to my penis in a non-invasive manner. Both my grandfather and grandma used to cry when things went wrong while I didn’t feel any pain but when the urine bag was disattached and attached again, so seems things have improved there.
I was also very conscious of getting bed sores as both my grandpa and grandma had them when in hospital. As I had no strength I had to beg. plead do everything to make sure that every few hours I was turned from one side to other. I also had an air bag which is supposed to alleviate or relief this condition.
Constant physiotherapy every day for a while slowly increased my strength and slowly both the vigo and feeding tube put inside my throat was removed.
I have no remembrance as to when they had put the feeding tube as it was all rubber and felt bad when it came out.
Further physiotherapy helped me crawl till the top of the bed, the bed was around 6 feet in length and and more than enough so I could turn both sides without falling over.
Few days later I found I could also sit up using my legs as a lever and that gave confidence to the doctors to remove the air bed so I could crawl more easily.
Couple of more days later I stood on my feet for the first time and it was like I had lead legs. Each step was painful but the sense and feeling of independence won over whatever pain was there.
I had to endure wet wipes from nurses and ward boys in place of a shower everyday and while they were respectful always it felt humiliating.
The first time I had a bath after 2 weeks or something, every part of my body cried and I felt like a weakling. I had thought I wouldn’t be able to do justice to the physiotherapy session which was soon after but after the session was back to feeling normal.
For a while I was doing the penguin waddle which while painful was also had humor in it. I did think of shooting the penguin waddle but decided against it as I was half-naked most of the time ( the hospital clothes never fit me properly)
Cut to today and I was able to climb up and down the stairs on my own and circled my own block, slowly but was able to do it on my own by myself.
While I always had a sense of wonderment for bi-pedal motion as well as all other means of transport, found much more respect of walking. I live near a fast food eating joint so I see lot of youngsters posing in different ways with their legs to show interest to their mates. And this I know happens both on the conscious and sub-conscious levels. To be able to see and discern that also put a sense of wonder in nature’s creations.
All in all, I’m probabl6y around 40% independent and still 60% interdependent. I know I have to be patient with myself and those around me and explain to others what I’m going through.
For e.g. I still tend to spill things and still can’t touch-type much.
So, the road is long, I can only pray and hope best wishes for anybody who is my condition and do pray that nobody goes through what I went through, especiallly not children.
I am also hoping that things like DxtER and range of non-invasive treatments make their way into India and the developing world at large.
Anybody who is overweight and is either disgusted or doesn’t like the gym route, would recommend doing sessions with a physiotherapist that you can trust. You have to trust that her judgement will push you a bit more and not more that the gains you make are toppled over.
I still get dizziness spells while doing therapy but will to break it as I know dizziness doesn’t help me.
I hope my writings give strength and understanding to either somebody who is going through it, or relatives or/and caregivers so they know the mental status of the person who’s going through it.
Till later and sorry it became so long.
Update – I forgot to share this inspirational story from my city which I shared with a friend days ago. Add to that, she is from my city. What it doesn’t share is that Triund is a magical place. I had visited once with a friend who had elf ears (he had put on elf ears) and it is kind of place which alchemist talks about, a place where imagination does turn wild and there is magic in the air.
Experiences in the community 