ALS, Amyotrophic Lateral Sclerosis, a dis-ease I didn’t know a lot about until approximately December of 2002, when my sister-in-law was diagnosed at the extremely young age of 39. A mother of two beautiful children; a loving wife; a caring sister and daughter; a fun, lively friend, in the prime of her life, now faced the inevitably of death and our family faced the cold, callous reality that we were not only going to lose someone close to us, but watch it happen right before our very eyes and not be able to do a damn thing about it. Plus we would observe my brother-in-law while he suffered as he watched his wife, friend and mother of his children slowly die an agonizing death. This dis-ease would begin to rob his beautiful wife of the use of her extremities then slowly the ability to speak, and eat, and then it would result in her untimely death by robbing her of the ability to breathe. ALS, a.k.a. Lou Gehrig’s disease, is a dis-ease so debilitating, so merciless, that I would only wish it upon those who are truly evil.
If anyone would’ve asked me if I was the natural caretaker type, I would’ve answered, “No.” Now, however, I would have to say, “Yes.” I’ve always been a compassionate person and I’ve always taken care of the under-dog, so to speak. I practically raised my younger siblings, long story for another time perhaps. But I did so many of those tasks because I felt I had to; it was an obligation. My caring for my sister-in-law was different. I helped her because I wanted to. I waxed her eyebrow, gave her manicures and pedicures and dyed her hair. When she began to lose control of the dexterity of her hands and fingers, I lit her cigarettes and held them so she could smoke. I fed her and wiped her mouth and even helped her brush her teeth. I assisted her to the bathroom and aided her in getting dressed. I amazed myself because there wasn’t anything that I did that bothered me or gave me pause. There were many times she had me laughing because of something we or she would say or do. She actually made it fun. It was rare for her to cry or feel sorry for herself. Unlike me…I’m sure I would’ve been mad at the world.
It eventually got to the point where she could barely speak. Her lips and tongue just wouldn’t work properly and only sounds came out. We would begin with the letter "A" and go through the alphabet until she nodded at the appropriate letters to spell out words. It was so humiliating for her. Such a vibrant woman now reduced to constantly sitting in a chair; to being carried everywhere; being fed by everyone because she couldn’t even hold her own spoon. But she would still laugh and did her best not to feel sorry for her plight. Again, something I greatly admired because I don’t believe I could be so courageous.
In January of 2006, the monster, ALS, finally won, and we lost Marylou. To anyone who knew her, she was an inspiration because of her courage. For a woman so young and filled with vitality to know she is facing that harsh, cruel fate, and do it with a smile on her face, was truly extraordinary.
ALS affects approximately 5,000 people per year and while that is low compared to those who get cancer or some other dis-eases, ALS has no cure. The ALS Association has a lot of information and I hope you will read up on this horrendous dis-ease. I believe with knowledge comes power and power will one day provide a cure. But without funds there will be no research and without research, no cure. Please check out Marylou's Angels where you can make a secure on-line donation to the ALS Association and help us find a cure. Maybe you can't physically Walk to D'feat ALS but you can let your fingers do the walkin' and donate on-line at their web-site. Thank you for your support.