Sunday, March 17, 2019
We received the diagnosis on my mom last Wednesday.
She has ALS. Amyotrophic Lateral Sclerosis. Lou Gehrig's Disease.
We already knew that she had it. We've known since January. Before that we thought she might have Alzheimer's, or a nerve disease, whose complicated name I once had memorized but so much has transpired since that there's only room for knowledge of what can help my mom right now.
It's taken so long to get to this diagnosis because for so many years, my mom was in perfect health, a literal walking example of how to behave physically and mentally when you're in your 70s. My siblings and I now believe -- with the benefit of hindsight -- that she probably had this disease for two or three years already and either didn't realize it or kept it hid (we have found indications that she knew something was wrong).
So, even though it feels like it took forever for a diagnosis to be made, many others have said, "it happened so quickly."
And, yes, it's been a whirlwind since last April. And the weeks and days are now whipping by because we don't know how long we have left with her. Meanwhile, my dad, who is several years older than my mom, I don't know what to make of him. He's confused, bitter and who knows how much he's absorbed of what my mom has, even though he's completely capable of thinking for himself.
The good part -- and that's what this disease does, makes you think that there's a "good part" in all of this -- is that hospice will take over soon and we won't have to go through the financial/government dance with nursing homes. Some people diagnosed with ALS have five, seven, 10 years left to live. My mom doesn't have that kind of time, barring a miracle. She's also dealing with advanced dementia, because some people with ALS get that, too.
I'm over the shock. That probably came last summer and the endless trips home and to doctors appointments have placed me firmly into the land of reality. That's not saying that it's not tough for me and for others in my family. It's just that meltdowns don't do any good. Everyone has their problems. I just happen to have a problem that when I say what it is, everyone else stops talking about their problems.
For years -- decades -- the only person I knew with Lou Gehrig's Disease was Lou Gehrig. Then I read about another person or two. There was Tim Green, the former Syracuse and NFL player who recently made his ALS announcement. And here and there I'd hear about somebody that a friend of a friend of a friend knew.
Now my mom -- with absolutely no appreciation for baseball, not that she can absorb concepts like this anymore -- has Lou Gehrig's Disease.
I'm going to miss her.