Dear fellow Coma victims, unite.
I have added to this page everyday for more than a week, perhaps more to come, a list of all the defects I’ve experienced since coma. Thinking about this site and how best to help other coma victims I decided that the best approach would be to tell others of the problems I’ve encountered. We probably have unique problems but just to have them listed from another coma victim might help, I couldn’t find such a list browsing the internet myself. To document the effects I’ve experienced may be helpful to other victims.
I just saw a news item on the BBC about a process to cure quadriplegics and enable them to walk again that is being developed, it spoke of the brain relearning. It spoke of new pathways forming in the spinal chord, for the brain to learn about the legs again. But perhaps the brain reacts differently after coma from quadriplegics, it’s all about ones consciousness coma. The closing off of active perception, we are not actually sure of the extent to which perception closes, stories abound on the net of people in coma actually still perceiving something. Like for quadriplegics perhaps medicine will solve our problems too in the future. There are probably more subtle things too that were central to our character before coma, these are just the rantings of a madman. I probably will keep developing and adding to this list. Just hoping to provide this site with some feel.
Obviously with my many physical defects resulting from coma, TBI (Traumatic Brain Injury), I’ve found it difficult to get around. Well I’m out of the hospital bed, wheel chair and walking frame but still need a walking stick after nearly 4 years. It’s like the brain is learning to walk again. A child takes a long time learning to walk properly. My ankle appears to be the main problem, I was told in hospital heel first then toe. I need to make the ankle turn up to do that, my left one does it automatically but not the right, I must mentally try to make it turn. Also the toes on my right foot still point to the heavens especially the big toe, I often use my brain to try and make them point straight ahead. Difficult mental adjustments of the toes, they aren’t normal yet. I still can’t use my walking stick with my right hand after years of trying, I do sense some improvement. Neurologists now say the brain can relearn. I go to the gym regularly to try and teach my brain again about my body. We are soon to travel to Vietnam, which will test my mobility again, travelling has really helped my mobility I think. Of course it would, to try and be active and not staying put because of my little problems.
My balance has become bad, I trust my left side much more than my right. Several times each day I try to lift my left leg and stand only on my right, I have to hold somethings while trying, I try to hold with my right but it doesn’t always work. I try to use my right hand on stairway rails. I always find it difficult to stand in the shower but I must do that every day. I try and use my right hand in the shower to wash my hair and lather but must use the left sometimes. Also I try to brush my teeth with my right but still must use the left occasionally, maybe half half.
I get many cramps in my right foot, I’m not using my arm so much because it doesn’t work well, I have to use my foot often to try and walk. Perhaps it’s the use of the foot that causes the cramp but I don’t remember getting cramps before. I suspect circulation has something to do with it, perhaps my mind is reacting and interpreting the sensations of my body differently and not like before and judging unusual stimulation generically as cramp.
I suspect my blood circulation is bad too. I get skin awkwardness after cramp, it doesn’t know the natural place anymore. There are suggestions on the Internet that many of the defects I have from coma relate to blood circulation. Perhaps my body has forgotten this activity too, how to move liquids through the body.
I have a hard time putting clothes on especially socks and shirts. I only mention this item because it does trouble me and I’m often thinking about it before I do something. It’s worse at the gym where I must put socks and runners on. When this improves I’ll be considering myself a recovered man.
I always think about needing to go even when I just went. I also had a problem with bed wetting and pissing my pants, always thinking about when to go and how to stop these accidents, I haven’t had an accident pissing unexpectedly for about 6 months because I’m always thinking about it and going to the loo just before bed
Many times when asked to fill in a form anywhere or country arrival form on the plane it’s always difficult. I’ve stopped keeping a diary except for this site, I use my iPhone with the left index finger.
My long term memory is bad and I must try to recall what I did yesterday. I forgot my age recently. Important event in my past I can’t remember, apparently I was married before for a year and then divorced but none of it I remember. Other significant events in my life are also forgotten, various family gatherings and weddings that I attended that anyone would remember I can’t.
I had some guardians which was obviously necessary when I was incapacitated but guardians need to know when the control of a person’s life becomes unsustainable. Important for monetary and legal reasons at the worst of it but not appropriate for a victim who is approaching normality or for the guardian to questions personal, emotional, decisions. It can impede recovery when people don’t take them seriously in their thinking once they can actually think independently and logically again. I received an email from someone who read this site that reminded me of this, my biggest problem from coma. I must have forgotten what troubled me so much a short time ago. The doctors said I would require institutional care for the rest of my life which I guess impacted the guardians thinking. I was recently re-married about 1.5 years after coma, obviously she deeply cares for me to marry a coma victim. And so I left my family for a woman I was with prior to coma, my guardians (family) tried to legally prevent this marriage. We were engaged prior to coma and at the time they tried to prevent our marriage we had known each other for about 10 years. We eventually got married in Singapore, none from my family attended. After we were married I had to legally put an end to guardianship and their attempts to control my life. Every decision as guardian should be to help the victim through this ordeal, not to control. Indeed everyone involved in a new reality needs some time to adjust to the difference, I certainly required that.
I frequently think of something to do or check but just when I’m ready to act I forget what I was thinking. I’m always planning like never before as far as I can remember, planning what to do next. It’s really my memory that makes me think of this section ‘mind’. I suspect that I am the same person after coma , my thoughts and feelings are the same, but I can’t remember. Perhaps this heading shouldn’t be here at all but the ‘mind’ is an important thing for all people and something not to be ignored. I was quite a thinker they tell me before coma, always in my mind, I don’t know what they mean by saying that? Perhaps I am just being myself again with this section ‘mind’ as a heading on the page ‘defects’, and I’m in my ‘mind’ now. At least the heading ‘mind’ reveals my deep rooted defects arising from coma… Maybe they were always there, these deep rooted defects, and only through coma had the opportunity to surface…