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| Dylan and Jordan Crook-2007 |
… now let me clarify that statement, having ALS is very difficult in more than one way. There is not shooting pain (at least in me, everyone’s ALS is different) like the ravages of say Bone or Pancreatic Cancer (seriously, I Thank God for that!), but more like the dull aches and all over body pains like you would have with the flu - and because you burn calories like a marathon runner, extreme fatigue. And like the flu, those aches and pains can be controlled in the short-term - not the disease, just the symptoms - with medications.
Problem is when those symptoms are being controlled with medications, you feel fine - like there’s no problem at all. You see that’s the benefit and the curse of the ALS disease, it affects your body and not your mind. I had it described to me like this by Hosparus, the degradation you see on the outside of your body is also happening on the inside… BUT the brain remains untouched, again it’s both a benefit and a curse of the ALS disease…
And when I am sitting on the couch watching the SAME Spongebob I know they’ve seen 14 times (heck, I‘ve even seen it eight!), everything feels like the old days… And if the medications have hit, and i’m sitting on the couch next to Dylan and Jordan, it reminds me of every other time we did this - before the disease. I feel like I could just get up and walk right across the living room, just like every other time...
And that’s the crux of the problem of the hardest part of this ALS decline is being around my kids… When I DO have to get up to go the bathroom, but now with assistance, I’m again reminded that things are not the way they used to be and that my time with these precious angels is VERY limited. I won’t see them grow up, go on their first date, graduate from High School, get married, have grandkids, etc. And THEY won’t have their father there as well… =0(
And THAT’s why the hardest part of this ALS decline is being around my kids. Of course I’ll cherish every remaining minute I have with them, but that doesn’t change the fact I won’t see them grow up. I love them more than life itself, as you do you yours. Let them know that and...
Love them Unconditionally…
~ Gary Crook | artist, Louisville, Kentucky 2014
And when I am sitting on the couch watching the SAME Spongebob I know they’ve seen 14 times (heck, I‘ve even seen it eight!), everything feels like the old days… And if the medications have hit, and i’m sitting on the couch next to Dylan and Jordan, it reminds me of every other time we did this - before the disease. I feel like I could just get up and walk right across the living room, just like every other time...
And that’s the crux of the problem of the hardest part of this ALS decline is being around my kids… When I DO have to get up to go the bathroom, but now with assistance, I’m again reminded that things are not the way they used to be and that my time with these precious angels is VERY limited. I won’t see them grow up, go on their first date, graduate from High School, get married, have grandkids, etc. And THEY won’t have their father there as well… =0(
And THAT’s why the hardest part of this ALS decline is being around my kids. Of course I’ll cherish every remaining minute I have with them, but that doesn’t change the fact I won’t see them grow up. I love them more than life itself, as you do you yours. Let them know that and...
Love them Unconditionally…
~ Gary Crook | artist, Louisville, Kentucky 2014
> If you’d like to donate directly to Gary Crook’s ALS Fund, please go to: http://www.gofundme.com/60j52
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