ALS; A Woman's Perspective

So, it's obvious that having ALS is a devastating illness.  I know that many people, myself included, had to "google" ALS when hearing of my diagnosis, and as you read what happens to people, it is unreal, like something that happens in the movies, not to someone you know, much less a family member, much less yourself!  And really, with only 3,000 Canadians living with ALS, it is no wonder it is not widely known, and if you have heard about it, who wants to spend time thinking of something so horrible?  In fact, when I was told I was getting an EMG, I looked up on the internet what it tests for and of course one of the diseases was ALS, I dismissed it as an impossibility as quickly as I read it.  So now we know about the horrible symptoms & effects, it's a terminal illness, you lose your muscle function, you can't eat, speak or basically have any control of your body, etc. etc.  But what they don't tell you about are the physical and mental effects of living with this illness as a woman.  Not to compare being a man or woman, which is worse, just to say that it is different.  And it may seem silly even mentioning the effects compared to the harsh reality of losing your body and keeping your mind, but it is there.  So I'm going to talk about it!  And as I always did with my clients, I will attempt to "reframe" it into something to make it possible to live with, so here goes, I am a list maker, that is me, it was even in Travis's vows to "be the man to finish my list".

Problem

High heels.  
You just can't wear them.  I have fallen on the street, I have fallen at an airport, at a wedding, up stairs (yes Up!), at home, in Target (twice), you get the idea!  So one of the first things I had to do to rip the band aid off of in terms of accepting my diagnosis was to purge all my heels.  It was too painful to do alone so my parents helped.  It was devastating to lose such an iconic symbol of womanhood.

Body Image.  
When diagnosed I was told that I need to eat a lot as there is often weight loss associated with ALS due to the fact that your muscles have to work harder than the average person for any type of energy output.  So what did I do?  Went to Italy and ate pizza for lunch every day and pasta for dinner.  Guess who gained ten pounds.  And while my doctors think that is great, none of my pants fit anymore.  I've since lost 4 pounds but I still have a pot belly.  They say it is because my stomach muscles don't have the strength to hold everything in.

Housework.
I'm sure many of you are wondering why this is on the "problem" side of the page!  But when you are the one in your household who is responsible for it's cleanliness (don't worry, Travis did/does do all the cooking) it is frustrating to not be able to maintain my standards of cleanliness by the simple fact that I can no longer bend down (actually that's not true, I have no problem bending down, but getting back up somewhat resembles a fish out of water flailing about!).

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Makeup.
I'm at a stage where I am still independent in my personal hygiene with ALS, however, the strength is lacking.  Therefore, whenever I try to apply mascara with my trembling hands, I end up stabbing myself in the eye!  And you should hear me try to apply contacts, you would hear things come out of my mouth that would make a sailor blush. 

Nails.
I don't have the strength to cut my own nails.  I guess I could file them, but then my cat Buddy has a freakish fascination with my nail file and will literally climb up my body to get at it, leaving me with cat scratches all over.

Reframe

The wise words of my best friend "heels are overrated".

Eat as much as you want and you don't have to exercise.  How many women would give their right arm for that advice?

In the words of wisdom of Dr. Seuss:  Those who mind don't matter, those who matter don't mind!

I was, am and always will be a camp girl.  Camp girls don't wear makeup and as an added bonus wear their pyjamas wherever & whenever they can!

I no longer have to justify going to the spa for mani/pedis!

In fact, there are positives to living with ALS, I am one of the lucky ones who gets to live her retirement, however much time I have left.  To me, every moment since being diagnosed has been a bonus.  Travis & I are focusing on our passion which is traveling the world as long as I can.  I have always loved being a "lady who lunches" and I now have time to do that and keep in touch with friends.  I believe this illness has brought us closer as a family, spending more time together whenever we can.  


And now, lets face it, with nothing to hold me back, Veuve tastes better than Henkel.