I HAVE BEEN A LOT OF THE SAME QUESTION-HOW IS IT TO LIVE W/ ALS? I ANSWERED THIS AWHILE BACK BUT SINCE AMENDED IT. SO HERE IT GOES..........
I thought long and hard on this one and I have so many scenarios and pictures I want to paint for you. But I was driving yesterday and it came to me. I was thinking maybe I would write an analogy but that wouldn't give you an accurate gage on how you live with it(my challenge) step by step or breathe by breathe. So I came up with this:
It's like falling into quicksand! At first you know that there is a possibility that quicksand exists. And then you happen upon it by total osmosis. Not ever understanding how you got there or why. Your angry because it's blocking your ability to move forward and your scared because you know deep down what lies ahead. But you also have to try and get to the other side because it's what you always do-take a challenge head on. So you put on this brave face and keep walking forward knowing full well your in uncharted territory. You have no choice. So you take that first step and everything changes-life-love-outlook on life-your mental state-your physical state-relationships-that look in people's eyes when they see you for the first time-emails mean something different-questions you had answered before are now open ended-EVERYthing changes!
And as you take that first step you start to wonder why, how and oh shit! I'm going to die from probably the worst disease on the planet. As you sink deeper, things physically start to go one by one. -speech-hands-arm-leg and as you try and fight you know-you just know- to keep fighting till the fighting is done. As you lose your ability to articulate and tie your shoes and your balance goes and your ability to run, you say inside--don't give up trying. But your brain is clear and unaffected so when you want to do something physical your brain knows what to do and sends the signal to say your hands and there's no one home. THAT'S FRUSTRATING! And that's hard for me to accept(I haven't yet) because I try till I get it-yesterday it took me nine tries to button my pants----- so I am fighting! And when I was healthy I could do anything and everything! Articulating is what I miss most-I'm a guy that loves the ball in a tight situation-I lived for that scenario-I WAS IN SALES FOR A REASON-I AM A CLOSER-so when I'm sitting there wanting to do more and I can't-that doesn't sit well w/ me-so I try to speak or fall or say something that no one understands because it's built into my brain-to try at all costs! Plain and simple, I'm not giving in to this fucking disease-no way!!
Mentally I am great-there is no doubt in my mind that I will win-I don't know what that means(winning). If that means beating my challenge then I will and if that means staying alive a few more years than they(doctors) gave me(2 YEARS) then that's a victory also. HEY, I'M A SMART GUY-I KNOW THE ODDS ARE HEAVILY NOT IN MY FAVOR-LAST TIME I CHECKED NO ONE THAT HAS ALS, SURVIVES. AND IF THEY HAVE (LIKE ERIC AND STEPHEN H. AND OTHERS-THAT'S NOT LIVING TO ME-I'D RATHER BE IN HEAVEN AT THAT POINT. Only time will tell but until then I'm coming out WITH MY HEAD HELD HIGH AND FIGHTING! THAT'S ALL I KNOW HOW TO DO.
Hope that answers the question. That is the best I can describe it!!!!!!!!!!!
Keep in touch,
There is no impossibility to him who stands prepared to conquer every hazard.
The fearful are the failing