How can you be yourself when you are no longer who you are?

That sounds rather pretentious (even I think so) but I cannot think of any other way to describe what I am going through, what I have been going through for the past 30-odd years, so please bear with me. I also have no clear idea of how this is going to present: will I come off conceited and self-absorbed; pathetic …

First off is, I guess, the conceited bit; for this I am going to quote family. Members of my immediate family have often said that I was the most generous and funniest member of the siblings. My mother once said something I took as the finest compliment I was ever offered: that I treated all people the same with the same consideration and generosity of spirit, Queens to street bums. I have always tried (with varying degrees of success) to be a kind, generous, fair and considerate person. My approach to people was ‘believe the best of everyone until proved otherwise’. I genuinely liked people and liked to be with people. I liked parties and large groups, and could do well in them. I had confidence in myself and my abilities.

My problem is that I am no longer that person. And it all came on so gradually that it took me a long time to realize it (denial and self-delusion are amazing things). Even now, I am way worse than I am aware of, excepting that other people tell me how bad I am.

I was diagnosed with Recurring/Remitting Multiple Sclerosis when I was 28, although the medical history done at that time pretty much determined that my first episode was when I was not quite 21. Because I mostly did not ‘look’ like I had MS (I did not use a cane, or a walker or a wheelchair), I was pretty well able to deny the fact of it for the better part of 20 years. Pride induced me to hide whatever physical manifestations the MS took from everybody for many, many years.

The hiding part was easy in many ways because most of my symptoms were of the ‘silent’ variety. There were two general types of silent symptoms; physical (incontinence, pain, numbness, blindness in one eye, extreme fatigue, hearing difficulties) and mental (emotional dyscontrol, an inability to concentrate, increased anxiety, rather radical personality changes, including extreme irritability, a diminished self-censorship ability and considerable reduction in general cognitive abilities, to name just a few).

The emotional symptoms of my MS were never a part of my conscious ‘hide it as best as you can’ coping strategy with my disease, mostly because I was completely unaware of them (except for the really obvious physical aspects of it, such as crying jags of an hour or more over a TV commercial). And that complete unawareness is itself a symptom.

I am increasingly inappropriate in my responses to people and situations. Sensitivity to social clues has gone right out the window, which means that interactions with people will go very, very badly for the most part. I upset, hurt and outright angry people at times, and am disconcertingly unaware that I have done so. Having the best of intentions, a kind heart and a generous spirit are no good when you cannot even perceive when you do things that are in direct opposition to your intent, wishes and spirit.

The last psychological assessment I had done of emotional and cognitive abilities was rather brutal, in that it rather baldly stated that the behavioural and emotional manifestations of my MS were contra indicatory of my being able to function effectively in any full time employment. That was a body blow.

Even harder for me to deal with is that these ‘silent symptoms’ are seen as personality defects that if I was only kinder, more considerate, more thoughtful, more motivated; if I would only exert a little will power, I could fix them. Surprise, surprise. I can’t make it go away, or be better, because none of this is my conscious choice. I am not intentionally cranky or rude or inappropriate. I just am and will never again not be: the brain damage has already been done and cannot be reversed. This is the new me, and I cannot like her.

The fatigue problem is also seen by others as yet another personality flaw. I am lazy, disinterested or unmotivated. This also has very negative repercussions on both personal and professional relationships.

So, where does this leave me? The people I am closest to and need the most understanding from are the people most put-off by my increasing irascibility and inappropriateness and inability to perform at my pre-MS levels. They cannot believe that all the horrible things I now am are not active and conscious choices that I am making about how to behave, or that I am unaware of the effect I have on people. They point out my social solecisms, sometimes lecture me, often yell at me, and I can cognitively recognize (after the fact) that I did probably commit the transgressions I just got reamed out for.

The overall approach of people is that if I just understood the effect my behaviour was having on people, I could correct it and never do it again; would become again the person they remember from 20-odd years ago, before the brain damage from the MS had progressed as far as it has. But being told that I have done something will never, ever mean I will not do it again: that is my reality.

The breaking of social and professional links 'ups' my stress level, which in turn exacerbates the symptoms that are making my being me increasingly difficult. I feel like I am a hamster on a motorized exercise wheel: I cannot get off and I cannot stop running in place while getting nowhere.

What all this is making me do is withdraw more and more from social interactions of any form, particularly if they are intense (large gatherings or noisy, for example) and that is unfortunately taken to be disinterest or dislike. I try to explain my reality, but is almost impossible to not reflect back the attitudes that you encounter: that you are just making up excuses for being a bad and inconsiderate person. (Besides, even I find it hard to believe that I am not just making excuses, and I resist being my symptoms, even though it is increasingly apparent that I am. Even I cannot believe that just a little exertion on my part won't make it all go away.) I can spend days, if not weeks, in flat despair (and deep shame and guilt) as I find all that I was and all that I wish to be slip away; as I become increasingly detestable and unloveable and am unable to halt, or even slow, that loss of me.

Who am I?

Multiple Sclerosis Society of Canada