Thursday, October 25, 2012

The Help Conundrum

I know that many people focus on the effects that my illness has on me. From my perspective, I see those effects, and the impact it has on those around me.

In the space of a year I've gone from diagnosis to fairly severe weakness in my arms. Even a straightforward sense of balance is off. And various tasks that were routine now present obstacles.

That's why it's easy to understand the urge people have the help me: somebody you care about is struggling, you try to help.

I do appreciate it when people try to help me, but my demeanor is often the opposite.

Assistance is always well-intentioned, heartfelt, and caring. Assistance usually lightens my load, reduces my stress levels, and helps me reduce the amount of time I spend doing a specific task.

The obvious question is why do I get so irritable when people try to help me?

The answer to that question pinpoints one of the worst aspects of a ALS.

As much as I require help, and is much as I may appreciate help, I simply want to do what I can while I can.

In its purest form, the desire to do things for myself is one of the few ways I can fight ALS. If ALS is to rob me of my ability to control my muscles, my mindset is to fight it as hard as I can and for as long as I can.

As twisted as it sounds, in my mind, accepting help and assistance means I'm taking a time-out in the fight against ALS. I owe myself and those I care about a better fight than that.

The catch is that watching me struggle -- watching me fight -- is a hard thing for my friends and family to watch.

Therefore, the conundrum is to watch painfully as I fight, or to help me and deprive me of the fight.

It would be fortunate if everyone took pride in my fight, or I could see assistance as a boost to my fight...

...but it's hard to believe that either change in perspective will come quickly or easily, or be limited to purely positive thoughts.

In short, I'm not the only victim of my illness. That's the real kicker.


  1. This is a very insightful post, Tony. I appreciate your sharing this...a conundrum indeed. I continue to admire the way you are dealing with this, and sharing your thoughts.


    1. Tony - I'm such a techno-idiot! :-) I'm not sure why my name shows up as "egypt and israel" - I set up a blog, but never completed it when I made the egypt/israel trip with my dad...

  2. Just as well that I don't help you at all ;)

  3. Tony, you really expressed the conundrum well from both sides. Everyone wants to help, but often doesn't know how or when. Always good to read a post. Love, Steph