A common question this time of year is “What do you want for Christmas?”. As a person living with ALS (PALS), I have a simple wish. I want to be treated as a PALS.
I want to live and die with dignity. I want to be able to ask for and get help without anger and resentment. ALS has not affected my intellect. I really do have a reason when I ask for something to be done a certain way. Does having ALS mean I must compromise? I really am sick of compromising just because you don’t listen!
My disease is progressive. I do not know when it will finally take my life. If I want to take care of rest of my life, make plans, and just maintain my overall heath as long as I can, is that OK with you? If yes, then listen to what I am saying. Did you know that fatigue is my body’s enemy? Fatigue takes many forms. Moving, eating, showering, dressing, and speaking are some of those forms.
I have never been an emotional person. But my emotions are affected by ALS. It really seems stupid to start bawling over the littlest thing. And I can react to your attitude the same way. Of course, I can be mistaken by what I think you are projecting so please take that into consideration. An explanation can go a long way. I would ask for the same courtesy.
I can’t talk as fast as you. In fact, many of the sounds I utter are unintelligible. I haven’t mastered speech technology yet. I haven’t even decided which system I want. My fingers have lost their speed on the keyboard and texting is slow. I am frustrated every day by the inability to communicate. The research nurse called a few hours ago to check up on me. She needed to update my ALSFRS, which is a functional rating scale for ALS patients. After she completed that, she asked me questions about depression. I laughed at the last question, “Do you feel like taking your own life?”. After the pain I had last week with the insertion of a feeding tube, there were two possible answers that popped into my head: (1) You should have asked me last week, and (2) Is it OK if I kill someone else?
If this post sounds like a rant, that’s because it is. I toned it down for publication. I read a caregiver’s post on Facebook this morning and it made me think. Made me think about ranting at all. The caregiver was feeling overwhelmed by offers of help. She didn’t want to be responsible for telling someone else how best to help her. It was another job for her. So today I reached out to a neighbor who offered to help with yard work. She and her husband have come and gone already. I am extremely grateful that my husband and caregiver doesn’t have to do the work. Want to help? Tell me what you like to do.
I will rant on and reach out to help my caregiver because he needs it. He doesn’t admit it though. Let’s take care of one another, dammit! Oh, and Happy Holidays!