Tuesday, 10 January 2017

Defy The Odds, And Live With ALS

To live with ALS, to live with it and not give into it, requires a great deal of will power, self-determination, and, on a regular basis, defiance. I think of Lt. Dan in Forrest Gump, climbing the mast with half his legs, screaming at God into the face of the hurricane, defiant unto death with his situation. I also think of Forrest saying that Lt. Dan "made his peace with God" after that. There is a certain truth in all of this, that defiance against all odds can bring you peace, that living a self-determined life takes will power.

Today I am going to engage in an act of will power, of defiance. I am going shopping, with or without someone to help me. I am going to go downstairs and get in my truck. I am going to drive to the Co-op grocery store just a few minutes away. I will get out of my truck, into my wheelchair, on that snowy parking lot. I will go into that store, and go shopping.

This might not seem all that defiant, yet it really is. The weather outside is frigid, -20C, around zero Fahrenheit. There is plenty of snow on the ground, perhaps 5 - 10 cm, aka 2 - 4 inches. That may not seem like much, but it will certainly challenge a wheelchair. It's becoming increasingly difficult for me to get into and out of my truck on my own. Yet I will face all these challenges, defy all these difficulties, and go do what I want to do.

I have a plan. I have an approach to minimize some of these risks. My biggest challenge, the thing I need to use all my willpower to face, is the fear. I do not have to be courageous; all I have to do is face my fears and do it anyways. That's what I am going to do. I will defy the storm. I will determine for myself what I will do, and I will do it. Then, when I am done, I will find a way to get home, to get these groceries unloaded and up to my apartment, and to rest. By then I'm gonna need it.


  1. Wouldn't it be less dramatic and stressful to get your groceries delivered?

  2. Thank you for such a heartfelt post! Now, this is random but might your children qualify for this children of PALs scholarship? https://www.cappex.com/scholarship/listings/Merfeld-Family-Foundation-Scholarship/-s-d-31411

    It is for children of PALs whose parent was diagnosed when they were/are in high school or college and there are 6 scholarships of $2,500 that would go towards their schooling. If it doesn't apply to you can you send it along to some movers and shakers in the ALS world who could spread the word?

  3. And the deadline is in a few weeks. I saw the son posting about this on reddit and I'm trying to spread the word

  4. Hello Richard,
    What a fantastic post. It really is.
    And when you say « all I have to do is face my fears and do it anyways», well, for me, it is the very definition of courage.

  5. Hi Richard:
    You have no dearth of will power or courage. I hope you made it to the store and back without any incidents. Looking forward to your blog entry today :)