Different strokes for different folks

marie3Two years ago,  the end of the world came —  my world, that is.

While I was undergoing  open heart surgery,  I had a stroke.

But there’s light at the end of  what used to be a depressingly dark tunnel and a young woman from Saskatoon has reminded me the only thing  stopping it from becoming  even brighter is me.

I’ve written about my difficulties with hemispatial neglect  and ‘stroke‘ and Marie from Saskatoon happened across one of my posts while she was  researching the use of white canes  for people plagued with  the  condition.

Collision stations

My wife and I were selling our hot sauces  at the Victoria Inner Harbour  during the recent Busker Festival and I needed to use the washroom. Rather than ‘tap’ my way about,  (I usually have my collapsible cane with me  so people can to see me  coming) I took a walk down the wild side, which is to say I went caneless.

On my way,  I knocked over a kid who was standing beside his father. He went flying. I hadn’t ‘noticed’ him and, quite understandably, the father  got pissed at what he perceived as my carelessness on my part and let me know it.

Instead of showing him my official VBIS (Victoria Brain Injury Society) ID card which explains I have brain damage, to my regret, I responded in kind .

I always have the card with me  for  precisely this kind of situation,  but so far I’ve never had to use it  and I’d completely forgotten I  was carrying it.

 Of empty spaces

Marie Clipperton was a psych student at University of Victoria  when she had a stroke.  One of the associated deficits,  to use the medical euphemism for  ongoing problems, was right neglect,  almost the same condition as me, except  my ‘neglect’ seems to be bilateral.

That means  for me, it’s like I’m forever walking  through a tunnel  whose sides I don’t ‘notice’ until I physically connect with them — or  people.  It’s extremely hard to explain.

I’m not blind in the literal sense of the word word;  it’s more I have an ‘impression’  of things around me  rather than actually being able to see them.

Marie  wrote »»»

Coming across your blog was nothing short of amazing. I also have neglect … though mine is on the right. I also had a stroke, though mine was a hemmogic stroke, and I also was on the neurological ward at Vic General in Victoria BC for many weeks. Although I was just 2 weeks shy of my 27th birthday when I had my stroke, and no one ever saw it coming, our stories have a lot in common.

I also picked up an infection in the hospital, though mine was meningitis from my brain surgery.

I also have apraxia.

I don’t really feel like a new person occupies the space that was once mine, however I do feel like the entire right side of my body is so foreign that it belongs to someone else. So much so that I refer to it as “Ron”. I know that my right hand is my own on an intellectual level, but nothing about the right side of my body feels familiar. It doesn’t look like my hand, it doesn’t feel like my hand. I have spent a year and a half with “Ron”. On the rehab ward in Victoria they kept saying that it usually goes away within a year, so the only help with neglect that I got was “If you can’t find something, it is probably on your right”.

Don’t get me wrong, there are some amazing people on that ward, and I understand that neglect persisting this long is very rare, but I have spent the last year and a half coming up with strategies by myself to try to compensate for this. 

There doesn’t seem to be anyone who can help me with this.

Neglect is exhausting. I compensate well, but it is very draining to be constantly trying to force your brain to attend to the right side of space. It takes constant effort.

“And speaking of ‘leftness’I sometimes my left arm or leg will touch something and I have to look because there’s a feeling of vacant space instead of actual sensation, if you can make any sense of that.” I understand that. I describe it as “Ron’s hand is touching that”, because it feels more like someone else’s hand is touching something, than my own – which also doesn’t make any sense to anyone else. If my boyfriend and I are holding hands, and I am unable to see our hands, I can not tell which is my hand, and which is his. This results in some funny moments like me holding my own hand for long periods of time and not realizing it.

We really can survive anything! I never would have described myself as a positive person before my stroke, but being positive and not feeling sorry for myself is what has gotten me through this entire ordeal. It has been hard.

The constant migraines, the seizures, the neglect, the decline in cognitive abilities… The uncertainty about my future. These are hard things to deal with.

But feeling sorry for one’s self has never made ANYTHING better, so I avoid throwing myself pity parties.

I am 28 years old, and I have a lot I want to get out of life. I don’t have time for feeling sorry for myself. I think your positive out look is fantastic! I look at things the same way: They didn’t think I was going to survive that first night in ICU let alone ever walk and talk again. And now I am going back to university. How great is that?

I am coming back to Uvic in the fall, and I would love to get together for coffee with you… I have spent a year and a half trying to describe my neglect to people who have never experienced it, the whole time wishing I could talk to someone else who has it. I tried stroke message boards, ABI boards, all kinds of things. I never got a single response from anyone.

Best of luck to you!

The very best of luck to you too, Marie 🙂  And please give my regards to Ron 😉

Jon Newton — myblogdammit

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