I receive a lot of compliments from people who say that I inspire them even though I have ALS, a progressive, incurable, untreatable, and fatal disease. The truth is, I don’t know how to inspire anyone, not even myself.
Come find me on a day when I am angry or my PBA is in full swing. I am not very inspiring on those days. There are days when I just give up or give in because I cannot communicate. Today I gave up trying to communicate to my caregiver that I felt uncomfortable with the way I was positioned in my wheelchair. Someone who can move and wriggle their butt into a comfortable position may not recognize how painful it is to be sitting lopsided with all of your body weight on one side.
I often sit silent because it is too much effort to type with my eyes. Sure there are phrases stored in my device that can quickly allow me to say something, but is it witty, thoughtful, or inspiring? It takes time to get a thoughtful statement typed out correctly with your eyes. Or maybe I am just not proficient in eye-gaze yet. When I am revved up and halfway through my comments, the conversation has usually moved on. If I decide I want to get my voice heard any way, I’m usually interrupting a conversation that has progressed to a different topic.
Truth be told, I am really irked by being asked questions that require more than a yes or no response when I don’t have my speech device. I cannot grasp a pen to write, and I cannot hold my cell phone or type on the tiny keyboard. My husband is hard of hearing and hearing aids do not help him to understand my garbled speech. No one can understand it, but that doesn’t stop me from trying. When I am really frustrated, I do what babies do, I cry. The only difference is no one picks me up, pats me on the back, and cuddles me. Which is probably a good thing because I would probably cry more.
Worst of all is that everyone else sucks at charades. They may get a clue to one word I am saying which I acknowledge, but then the rest of the their guesses are completely disconnected and off the wall. The truth is that this annoys the crap out of me. It shouldn’t, but it does. I mean after all, I know what I am saying, why not everyone else? Okay I am kidding, but it is so very frustrating. It’s like watching Judge Judy, being sworn to tell the truth, and then not being allowed to tell your story.
It’s true that I hate that I cannot get others to understand the idiosyncrasies of the disease, the itching, the burning, the feeling that bugs are crawling on my skin, and the constant need for assistance. I really can’t deal with losing the use of my hands and arms. My right arm is practically useless. It is becoming difficult to operate my wheelchair because I cannot move my hand onto the controls. I wish I could clean my own eyes and scratch my own itches, brush my teeth, comb my hair, put on my eyeglasses and earrings, and wear my wedding ring again.
The truth is that that I have come to hate ALS more than I ever thought I would. Naively, I thought it was something I could deal with. I handled not being able to walk. I got a pimped out pink power wheelchair to raise ALS awareness. I handled the eating and swallowing problem with a feeding tube. I don’t really have cravings for particular foods, and the government buys me my meals. They are like MREs (meals ready to eat). After all, I am in combat against a formidable enemy. But the fact is that ALS is stealing my life. It is hitting hard at my steely exterior. Truthfully, there are days that ALS sneaks in through its friend PBA to ruin a perfectly good day. Distractions can help keep it at bay.
I will keep on telling you the truth about this disease. I only ask that you listen, learn, and educate others. Every 90 seconds someone is diagnosed with ALS while another PALS dies. Spread the truth and help cure ALS.