Wednesday, 31 July 2013

Points On A Graph

People talk to me; they say all kinds of things to me. Most of these things are the ordinary exchange of pleasantries and typical conversations of daily life. Sometimes, however, a friend or family member will say something powerful, something that strikes a chord or settles heavily on my mind. The risk for these people is that their wisdom will show up here in my blog. For that I do not apologize; wise words are meant to be shared.

This happened today. One of the members of one of the many online ALS groups to which I belong made a comment, something that just slammed into me and stuck. She was talking about the frustration she felt when speaking with doctors about ALS, the distress of knowing there was nothing she could do; she is not a PALS, she is a friend of a PALS. She said "With ALS, it's like the world is saying, yep it's ALS... (he) has repeatedly said the doctors are saying your (sic) just points on a graph now." I can truly relate to that frustration.

It is not just the patients who are frustrated by this. One of my many neurologists expressed a similar frustration last month when I was at the ALS clinic. He said "Twenty years and there have been no advancements; twenty years and nothing." This disease has to be tremendously frustrating for doctors who are used to giving solutions, providing hope and offering treatments. Trust me, it is just as frustrating for me.

There are two places to go with this frustration. One is to take it to anger; the other is to go to acceptance. I suspect all People with ALS end up in both places at some time or other. Regardless of religion, faith, or mindset, this disease works so insidiously as to leave every affected person stunned, without a handle to hang on to; you just have to live with it, nothing else. Whether patient, family, friend or co-worker, no matter who you are this disease will touch you and leave you feeling helpless.

Yesterday a Person with ALS in one of my online groups talked about a depression and suicide. When faced with a situation where your doctor simply says go home and do nothing, where the only thing they can do is collect points on a graph, virtually every one of us will become depressed. Add to that the depression that is a side effect of some of the medications and you have a perfect scenario taking action to end it all.

There is but one thing to do in the face of all this; wake up, breath, eat, and keep going. It is almost impossible some days; most days it is merely difficult. On those rare, sweet days when the light shines and the clouds lift, on those exceptional days when life seems possible no matter how short, then you get to live. On these days you are more than points of a graph.

1 comment:

  1. Oh dear you are so insightful. I hope the light shines on you today .