Donation page here
In January of this year, my mother was diagnosed with ALS. For those of you unfamiliar, ALS (Amyotrophic lateral sclerosis) is a terminal disease that causes your motor neurons (which govern voluntary movements and muscle control) to start dying. Over time, your muscles waste away, to the point where you can no longer move at all; eventually, your respiratory system begins to deteriorate, and you die.
It is a fatal illness, in all cases. According to statistics from the ALS Association, 50% of patients die within three years of diagnosis; 80% die within five years. There is no cure for ALS, and currently, there are only two FDA-approved medications to treat it, both of which add only a few meager months to a patient's lifespan.
Bluntly stated: this means that my mother does not have much longer to live.
To give you an idea of how rapidly this disease progresses: as recently as July 2017, my mom was close to 100% healthy and functional. As of now, December 2018, she can no longer walk, she cannot stand unassisted, and she can't even rub her eyes with her own hands.
Obviously, if you can spare a few dollars to support research for this disease, I would certainly appreciate it. The ALS Association is a highly-rated charity that uses its funds primarily to support ongoing research (which is badly underfunded), and the organization receives stellar ratings from watchdog groups who track how nonprofits spend their funds.
But more importantly, I hope to create an explosion of awareness about this disease. While most of us remember the ALS Ice Bucket Challenge from 2014, many (including myself) didn't learn a great deal about the specifics of the disease. Many of you know my mom, and if you don't, you obviously know me; my hope is that by giving this disease a name and a face, I might lead you to learn more about what it entails.
I also hope to impart an immense sense of gratitude to all of you reading this. The cause of ALS is unknown in 90-95% of all cases; you can live the physically active life of a baseball player (Lou Gehrig) or the mentally active life of a scientist (Stephen Hawking), and still be struck by this cruel twist of fate. This experience has indelibly burned into my mind the reality that everything can disappear at any moment, and it's made me deeply thankful for the smallest things I'm able to do. Every step taken, every meal eaten, and every breath inhaled are now imbued with a sense of genuine triumph, a feeling of "Wow! I walked up all three flights of my stairs without assistance! While exhausted and drunk, at 3 AM in the morning!"
I'm not saying I don't still complain about myriad problems (both big and small), and I'm certainly not asking you to stop being annoyed at life's petty injustices; but I hope that in reading this, you may feel a newfound sense of appreciation for your health and your abilities, no matter how trying the circumstances of your life may be.
In closing: I know most of us approach social media with a sense of detached irony; Facebook is a place for memes and pictures, but rarely is it a venue for earnest expression. Writing something like this publicly fills me with anxiety, and I fear it will be viewed derisively.
But for 11 months, I've entered every conversation knowing that I would either need to relive my mother's diagnosis (in order to explain it), or bury it and pretend all was well. Rather than continue making this choice in silence, I've decided to use this public forum as a means of creating awareness, urging education, and encouraging donations. I hope all of you will join us in the fight against this terrible disease.
