Okay, so, here goes my story:
I was 18. I wanted to be an adult forever, but in many ways, I wasn’t ready to be one at all. My mother thought grown-ups were so cool. She never said it, but I knew. I was working part-time at South Orange Public Library, where she was employed. It paid less than minimum wage but I loved that job.
I was going to college; she was trying to re-establish herself as an actress. She had already performed at Whole Theatre in Montclair. She was trying out regularly, but her voice kept failing her. Not entirely, not so anyone would notice… a tickle here or there… a scratchy voice in some auditions… but she knew something was wrong.
The doctor’s visits started. One doctor determined she might have Lou Gehrig’s Disease—or Amyotrophic Lateral Sclerosis (ALS). Thank God she didn’t have the Internet. It was bad enough she worked in a library and was able to access a lot of information, but with the wealth of information available today, she would have been more than petrified, and believe me, she was. I am not sure you know what ALS is, but it robs you of your muscles—rendering even breathing next to impossible, and finally, truly impossible—but leaves you with your mind, so you know exactly what is happening.
Trips to New York proved the diagnosis correct. My mother was dealt a death sentence… although, the doctors just proclaimed it—it wasn’t as if they made it happen.
Afterwards came the speech and occupational therapy, but no matter what, my mother didn’t want to leave home. Neither did I. I couldn’t leave her, could I? Well, maybe it was just my residual Catholic guilt…
Anyway, I didn’t. I went to Rutgers in Newark; commuting from home. I left the library and worked at a local saloon at night. I spent most of the rest of my hours taking care of Mom… I guess I averaged about 3-4 hours of sleep a night. (It has helped me now when I get less than optimal sleep.)
Things didn’t get better. She lost her ability to speak and sometimes we’d have “screaming” matches, where she’d try to tell me something without being able to speak and I just couldn’t understand. One in particular that stands out in my mind was about the Alexander Dumas’ (stupid, huh?). She kept trying to make me understand the relationship between the two, and I just didn’t get it. I will never forget now (pere and fils—duh!).
After a while, we reversed roles. It was no longer my mother taking care of me but me taking care of my mother—feeding her, bathing her, dressing her, cleaning her… it was more difficult than that, but you get the gist.
On June 24, 1983, I came home from work (I think) and she was restless. I spent some time with her and was so tired, I asked her if I could go to bed. She didn’t want me to—but I did anyway. The next morning, my brother found her, some ten feet from the bed. How did she get there? Who knows, but at least we know she was finally at peace.
I was 20 years old.
For years, and even as I write this, I feel guilty that I couldn’t do more for her. I do believe I did what I could but I still wonder if I could have done more if I was a better person.
That’s my story (really, just part of it) and why I believe in an organization that works to eradicate this insufferable disease. The ALS Association was not around when my mother was sick… I wish they were and I wish they would find a cure or, even better, something that would eliminate this devastating disease.
April 14, 2011