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Why I haven't been writing for Ouch!

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Elizabeth McClung | 05:49 UK time, Wednesday, 21 May 2008

I was about to write a post for ouch! after being told at a 10K by a/the race organizer that people in wheelchairs didn't HAVE a gender (and thus prizes were given out to the first three "wheelchairs"). But I didn't. Because on May 3rd I had a series of seizures, continuing at the hospital where I was given Ativan to limit the brain damage and frequency of whatever was happening (no one really knows, not even the neurologist who was standing there when one happened). This was followed by a TIA (mini stroke) a few days later. Since then, I haven't tried writing for ouch! because I was scared and ashamed. I knew that I wasn't the same writer I used to be and I didn't want people to notice. I didn't want pity or disinterest either and I didn't know what to do. So now I am doing what I think the Elizabeth McClung of May 2nd would have done: attack the issue directly.

After the first seizure, I had lost about seven years of memory, while language use and other cognitive effects also later displayed (plus I started reading backwards and speaking in Spanish to the Medical Personal; after the TIA I spoke Japanese). It has been explained to me that my filing system has been ransacked, scattered all over the floor and that it will take the time of good and bad days before I can file it properly again. Basically I have the hell intern job of being a legal clerk temp in a huge library that hasn't been sorted in years.

Stroke alone is THE leading cause of adult disability in the US with just under 800,000 cases in 1996. I imagine that statistic is reflected across the UK and EU as well. That doesn't count TIA, seizures, head injury and/or trauma much less brain tumors or operations. As I was to find out from people who emailed me, from head injury to those still dealing with a stroke in their 20's: what I had experienced, and am still experiencing is not isolated, it is just not talked about. Or maybe it IS talked about on Ouch! and I don't remember, that's something I say a lot now; "I don't remember."

My writing isn't as eloquent or as cheeky as before, but thankfully the writing has started coming back faster than speech, memory and heard comprehension. In my first day of being left alone, when I could understand my surroundings, I went in my wheelchair down to the local video store. While I did not recognize them, they recognized me and we started talking. After a minute or two of listening to my responses ("Everything is....illuminated!"), one of them asked me if I was on drugs. I told them about the seizures. One looked at the other and then walked away, while the one who stayed used 'the voice.' That voice people use on children and others considered too stupid to understand people are talking down to them. I hear 'the voice' a lot, even from my partner when she slips up.

As far as I can tell my IQ, which is my ability to process new information, is unchanged, merely the accumulation of topics and vocabulary which society uses to judge adults as to their intelligence is gone. I am fortunate in being an honest person because long before the memory of a person returns to me the 'emotional memory' of them does. So while I might not recognize someone I will say, "I like you." Or to one night care worker, "You make me feel safe." While to at least one other, "I'm not sure you do what you say."

It is hard hearing about this 'other' Elizabeth McClung; the things she did and said and not only have no memory of it but also feel that I have to 'live up' to her, like a better, more interesting older sister. Some days I "Fake" it, where with some memory and seeing facial expressions I can make someone believe that I remember them, or our relationship. But I have also been hurt and shocked when a friend used a "trash talk" phrase that 'used' to be an inside joke between us (I did not remember). And other times I try to fit in by "continuing" conversations, only to find out that the conversation and events I am "continuing" occurred a year or more ago.

I don't know how other people deal with this; with the bad days when so many things are confusing that within an hour I have an "overload" headache. Doctors say they don't know when the memories will return. There is no question this is a disability. Anytime I can't leave the house for a week or two without accompaniment because of a seizure that's a disability/impairment. Ironically, my loss of memory meant that while I was IN a wheelchair, my memories and feelings were of a time when I was doing marathons. So I was itching to get out the door and do my 10 km run of the day and had to be reminded (frequently) that I don't run anymore.

The point of this post? Perhaps just to say that I am still here. Even if I still don't understand time, particularly how the days of the week relate to each other. So surround the walls of my desk with notes to help me understand that the word "Thursday" means a caregiver named J. is coming to give me a shower, and another note to tell me, "Today is Thursday." That is not going to stop me writing for Ouch! And yes, I say several times a day "I don't know what that means." But I believe several million potential readers of Ouch! can relate to some aspect of what I am experiencing. I am not dead, even though I am still reclaiming from the darkness the memory of my own life, so I go on. I just wouldn't recommend telling me you're meeting me at the pub on Wednesday; not unless my partner is there or you plan on calling me up to say, "Elizabeth, THIS is Wednesday."

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  • Comment number 1.

    Elizabeth I spent a long time reading your blog today. I felt admiration for you and the will to find out more. In the past I've given into feelings of apathy and nihilism and not bothered reading your words, or anyone else's for that matter, for weeks on end. But I've been losing out. I'm glad you're still here.

  • Comment number 2.

    While I'm not going to patronise you by saying that your writing is better than it has ever been and in fact surrounded my computer with a holy glow... I'm fairly sure you'll understand if I say that from this end, your article still 'reads' like YOU.

  • Comment number 3.

    I'm not sure I was familiar with your writing before and so cannot comment on content, tone or quality... but boy do I empathise.

    Prior to my concrete kissing episode I earned some of my living from writing; post concrete kissing I literally couldn't find words.

    My memory and cognitive difficulties did not improve, and are unlikely to do so to any great degree, but with strategies in place I can fake it with the best of 'em.

    In a few minutes from now I won't remember your post or replying to this, but I simply wish you luck.

  • Comment number 4.

    You're more lucid and eloquent than I am, even when I'm supposedly at the top of my game, Elizabeth. Hope your recovery is as quick as possible.

  • Comment number 5.

    I read no difference in your posts, missus. I think the changes you talk about are in your perception and in how you feel. These are not 'unreal' - but simply one perspective. Out here, we just read YOU - and it's great.

    I have a mental illness, and sometimes the words leave me. Just keep writing - one word at a time. The truth of writing it 'how it is' is so much more powerful than writing something with a flip wit.

    Keep on keeping on, baby!

  • Comment number 6.

    I have registered here really just to say 'Welcome Back'
    Writing is obviously something you have not lose the ability to do, despite you worries. I 'll be back to read more .

  • Comment number 7.

    Never having read anything you have written before I can't comment on any changes, but I do want to wish you well and hope your recovery is a speedy one.
    Will pray for you if that will not cause offence,


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