Seeing is Believing

I have been thinking for a while about something that makes me uncomfortable. As I was getting ready to go up the town for my eye test today, it came sharply into focus (pun unintended): how well dare I look?....

That seems like a very strange question to ask and yet it is a crucial one for me and this is why. As much as I avoid talking about my situation in these stark defeatist terms, I am disabled. My disability isn't apparent to somebody who just sees me for a couple of hours on a good day. In fact, on a good day - and providing it is in the afternoon, not in the morning - I can put on a really good show. This is a great improvement on what I have known. Having a shower, doing my hair and putting some make-up on still feels like a little miracle. Yet, I feel nervous when I look too well because I am afraid of three things:

1. I am afraid people are going to start making demands on me that I cannot in fact fulfil
2. I am even more afraid that people are going to think I am a lazy malingerer who would be well-advised to get her backside in gear
3. I am also afraid that people might think I am stupid when I look 'normal' but struggle with some very basic stuff.

And so, I am tempted to look in a way that matches my current capabilities - in other words, I feel the secret need to look well below par. That way, my exterior would be more aligned to my interior.

I only feel free of fear with my family or my close neighbours because they see the whole of me, all the time. I made two decisions at the beginning of my illness that have served me well, more than could have even imagined at the time:

• I chose, with my family's full support, to stop making 'sparing them' my priority and to allow them full access into my experience. I don't have to shield them from the truth and that means they feel (quite rightly) that they are right 'in there' with me. This occasionally worries me but they then remind me that the worst thing of all is the Not Knowing. Knowing the truth, even it it is tough, is somehow easier.
• I decided to allow my neighbours to see the whole of me too. This wasn't easy at first because I felt I was 'demoted' in their eyes. Going from an articulate professional woman to an old hag in slippers and dressing gown barely able to string two words together wasn't a journey I travelled with alacrity. But, my sharing the full extent and impact of my illness with my neighbours has paid me back with the loving support and encouragement one only gets from true friends.

As a result, my family and my neighbours - having embraced my worse - now celebrate my best. It is precisely because they know that my best still only appears as little oasises in the desert that they rejoice when they see me looking so well. I feel safe rejoicing with them because they know the whole story.

It seems that, in a strange twist of events, I am now afraid to show the world my little bit of strength for fear it may be taken at face value and out of context with my overall 'disability'. After all, who could have known when they met me at the optician's this afternoon that:

• It had taken me three hours to wake-up properly
• I had to receive a telephone reminder of my appointment this morning because, even though it was clearly marked in my diary, my brain didn't register the information and I had forgotten about it
• In spite of my written reminder, I forgot to go to the bank to get the money I needed to pay for the eye test
• I left my contact lens case behind and took the wrong glasses, something I never did before
• I felt safer with my husband walking with me to the town centre because I get easily confused and lost.

I feel afraid to show myself looking visibly well and I yet I also feel embarrassed exposing what is invisible to the naked eye, even with the best optician in the world.

If I don't though, I am well aware that I run the risk of staying in my disability space, just because this is what I think others expect to see. Today, I didn't look like a disabled person and this is crucial to my recovery. It is precisely when I look well that the outside world treats me normally, and it is through the outside world treating me normally that I stand a chance of gradually getting back to normality.

Seeing is indeed Believing :0)