An interesting point arose during a discussion at my clinic visit last week.
We discussed ALS awareness. Particularly, the public face of the illness as projected by national organizations.
These days, Lou Gehrig's disease, at a national level, is synonymous with names like OJ Brigance, Steve Gleason, Augie Nieto, and Mike Porcaro. To their eternal credit, each one has taken it upon themselves to start organizations and campaigns to battle ALS.
What do I have to complain about?
My complaint isn't with their popularity or their wealth.
I take issue with the fact that their wealth affords them the ability to have - in the eyes of public - a very functional life, while their ALS is at a fairly advanced stage.
I think this exudes a false image of ALS. An image that portrays pALS at an advanced stage of ALS like independent, pseudo-fully functional people: active business-people, well-traveled advocates...etc...
Again, there's nothing wrong with pALS being active.
But I feel ALS should be portrayed in a much more honest light. A darker light.
People need to have a much more realistic idea of what its like to live with ALS...to live through ALS.
Know that ALS robs you of everything.
It turns your spouse, partner, soul-mate, lover, and best friend in to your nurse. Every bodily function eventually becomes dependent on someone else for assistance. Fuck, it turns your friends and family in to caregivers and victims in equal measure.
When I was first diagnosed, Amanda and I asked the doctor about treatment options. He told us that The Serenity Prayer was the best advice he could give. The serenity prayer.
I couldn't tell you when I began requiring help to get out of bed. But now I need help getting in to bed. That's right; I cant even fall in to bed without help.
I can't move the bed-sheets under my own strength, so I have to wake Amanda for help.
Cora, 6, just found me weeping. I will never forget the distraught look on her face. #ALS can go and fuck itself http://t.co/v129bwzXMh
— Tony Conway (@DontShrink) July 3, 2014
I require hands-on help to stand, shuffle, and sit.
Know that when I fall down it takes a mechanized lift to scoop me up.
Know that every aspect of my personal hygiene is performed by someone else: brushing my teeth, showering, wiping my nose, wiping my ass, cutting my nails, shaving...you name it, and someone has to physically do it for me.
Someone else has to feed me. Someone else has to give me a drink.
I couldn't tell you the last time I put an item of clothing on by myself.
I need a machine to continually pump air in to my lungs while I sleep.
Keep in mind that with one exception, there are no treatments being researched, let alone developed for this disease.
Going anywhere is a monumental undertaking.
I have a feeding tube sticking out of me, to help me maintain a healthy weight.
I can't move my arms.
I'm losing the strength to hold up my head.
I've lost control of my bladder because of spasms.
I recently shit my pants. My wife and sister-in-law had the pleasure of cleaning that up. Good times.
My ability to breathe will diminish to the point that doctors will recommend a tracheotomy, and that I get connected to a ventilator. I'll decline that recommendation. I don't want to be hooked up to a machine to merely survive.
My daughters, 6 and 3, are active caregivers...they're also the reason I get up everyday.
My breathing will slowly fail to the point that carbon dioxide levels will become intolerable, I'll lose consciousness, and die. Or I'll fall, and die from the resulting injuries. But my mental faculties will remain intact throughout.
Remember, better yet, understand that yes, ALS patients strive to lead active lives, but don't let that veneer give you the misconception that ALS is anything but a brutal disease.