There are a million little things you can do for yourself every second of every day. You don’t need to ask; you simply get up and do it. But what if there were times you couldn’t get up or if you were disabled and dependent on someone else? How long is it okay to wait? I mean, think of a baby. They are as helpless as I am, and most people come to their aid quickly. But when you are an adult with a paralyzing disease like ALS, it feels to me as if I can wait for any amount of time. After all, they know that my disease is incurable and fatal. So why spend time and money on something that progresses onward to my death? It’s pennies on the dollar in healthcare.
There are times when my caregiver is right in front of me and I cannot even make a sound to let them know that I am in pain or if they themselves are hurting me. So a reasonable adult waits in pain. Babies can cry for some of the same reasons I do. It might be my only form of communication at the time.
I do have a question I would like to ask though. If we protect babies at all costs, what about adults? I have good respiratory numbers to keep me alive. So the next move is to slowly decrease my food and to give me intravenous liquids. Does it sound like I am being replaced by an infant? I mean, we are all going to die. I just didn’t realize that I would be dying by an involuntary food strike or I could have joined the IRA years ago (OK, that is the author’s interpretation of what I heard from a hospice representative.)
At what point do we decide a person’s value and who makes the decision? What makes a person worth saving? Is it the number of years they live? Is it because they do not have a rare disease and more money can be earned on their illness (WWJD)?
On April 1, 2018, I wrote a letter to the President of Duke Hospital. I didn’t ask for, nor did I receive a reply, not even a form letter. But all the surveys I get from Duke have had his name on them. Do you really think he cares about an individual response, or just tallies up the responses his survey company gets? I bet I know the answer. After all isn’t Duke a for-profit hospital?
Got onto my soapbox again and off topic – the minutiae. So who scratches your itches? Who drives your power wheelchair when you can no longer move your hands?
Who opens the door when there is no handicap button, or you can’t push it? Who moves the trash can so conveniently placed in front of that button?
Do you care? Do you notice? The Americans with Disabilities Act has been a law for more than 25 years. Do you know any part of the law? I bet you know about driving with a cell phone, though.
Minutaie…
(This blog was written with eye-tracking)
ALS and ME 
Well Stated once more Kathryn. So sorry. : ( I try to be considerate of all people and think of others before myself. I am glad you bring these things to the open and maybe some people will think twice and see things in another light….Thank you for helping us understand this awful disease. We love you.
LikeLike
Hi Kathryn,
I just read your blog, and it’s hard to know what to say. I saw a horror movie once, although I can’t remember the name, where someone was in a paralyzed state of being in the end, and couldn’t communicate with anyone. It seems similar to what you are going through, except you have to live with the pain, and being almost constantly uncomfortable, and not being able to get the exact help when you need it, and can’t even scratch a damn itch. And then there are the bathroom formalities that we each have, except you can’t have it like a normal person And I’m glad, yes very glad that you tell us all about the things that you have to suffer through. Because we each don’t know what ailment will befall us before it’s our turn to pass on.
But what I was really wondering is, since you can communicate like this in your blogs, and so fluently, can’t you also communicate with Joe, or another caregiver through your communication device, or is it just not too easy to get the words out, or even spell them right, without a back and forth constant correction for words just not coming out the way they should on the first attempts???
Love you.
Stan
LikeLike
Hi Stan and Elsie,
I like hearing from you. First a few facts. I am not in constant pain. I have almost no pain at all, but I am almost fully paralyzed. I cannot communicate at certain times because I don’t have my device available. I can’t take it in the shower, it’s electric. I can’t have it when I am getting dressed, some caregivers say it is in their way. I can’t hold a writing instrument or even a book.
You can find more nformation at alsa. Org(the National Center chapter). I go to”The Jim Catfish Hunter” Chapter in Raleigh, NC. Ncalsa. Org.
LikeLike
I’m sorry for the broom cabinet in the so-called accessible bathroom, and for the table that is in the was of the other so-called accessible bathroom. Sheesh. We didn’t realize what we were doing…. Thank you for raising my awareness and for teaching me.
LikeLike
Kathryn, I truly hate this disease and what you’re going through! You’re a hero for keeping us educated on ALS and advocating for PALS. I love you dear friend, and I’ll try to find you the Hoops and YoYo butto!!!!💗
LikeLike
don’t let it get kidnapped this time! It has to be loud, otherwise don’t get it! Thanks.
LikeLike