I know things that I didn’t know before. I know there is a disease called
ALS. It is horrifying, ruthless, and fatal. It is also underrepresented, miserably underfunded, and completely foreign to most people. Full disclosure: if I didn’t lose my dad and a favorite uncle to it, I’d know as much about ALS as most people – almost nothing. I only wish the lesson wasn’t learned at the expense of their precious lives. (An aside… my dad and my uncle were not related by blood; they married sisters and just happened to meet the same unthinkable fate. ALS is a rare disease? I’m not so sure about that.)
I also know people that I didn’t know before. I have met and become friends with some of the boldest and most inspiring people I’ve ever met in my life, and all of them have been affected by
ALS in some way. Some advocate in memory of loved ones. Some are caregivers. Others stare the beast in the face and suffer its beating every day. They are all filled with hope, determination, strength, and grit, and I am proud to know them.
Someone once said that being involved in the
ALS community means certain heartbreak and, sadly, that’s very true. There is no treatment or cure for ALS. The story never ends well, and the struggles people with ALS endure don’t end with the physical symptoms of the disease. People with ALS are forced to fight from every corner of the ring. They fight to stay alive. They fight to earn a living in spite of a body that forces them to stop working. They fight to pay unthinkable medical expenses. They fight to keep a roof over their head. They fight to feed their family. They fight and fight and fight, and it is brutal to watch. It is the heartbreak I was promised.
This is my friend, Brian.
Four years ago, Brian was a hard-working man with a home, a wife, and four kids. In August 2008, he noticed a slur in his speech. In April 2010, he was diagnosed with bulbar onset ALS. His symptoms progressed and he was forced to leave his job in September of the same year. He was 46 years old.
Imagine being 46 and realizing you can no longer support your family. Imagine watching your safety net grow smaller and smaller until it barely covers a portion of your monthly bills. Imagine swallowing your pride and soliciting funds to help cover the cost of your funeral services, just so you can rest knowing that you’ve spared your family of one layer of despair when your fight is over.
Brian doesn’t have to try to imagine any of this. He is a fighter. He lives it. You can learn more about him by checking out his incredible blog.
This is what
ALS does: It robs the body, spares the mind, emotionally tortures loved ones who watch helplessly, and absolutely devastates families financially. No amount of saving or careful planning can prepare a family for the unbelievable expense of caring for someone with ALS. When your mortgage reflects what you could afford as a healthy, employed person with a steady income, what happens when your body forbids you from working? What happens when you exhaust every cent of your savings on basic living expenses and the incredible cost of addressing your illness? What happens if you don’t have family that can help shoulder the load of these expenses? What happens when your spouse can no longer work because he or she needs to provide your 24-hour care?
The bank proceeds with foreclosure. That’s what happens. It is a brutal, unjust reality of
ALS and it happens every… single… day. Just ask Brian.
My parents were lucky in this respect. My dad had access to long-term disability. My parents had no mortgage or other debt. My dad could access his pension. They managed to face
ALS without hitting the low notes of poverty, but they were an anomaly. A man in his forties with a wife and kids and no other source of income or assistance doesn’t stand a chance. Terrifying, heartbreaking, and unbearably true.
This is why my family and I plunge and walk and Zumba and attend events and rally like mad to get funds together – because we’ve seen it, we know, we get it. And this is also why I’m humbled to tears when friends that only had a peripheral view of my dad’s illness stand up, get involved, and make some noise with us – because even from the sidelines, they manage to get it, too, and that blows me away. I never, ever take the noise they make for granted.
Warm and toasty with Darren and friends Greg, Dave, and Marc on the Manasquan boardwalk, minutes before the Valentine Plunge for ALS (02.04.2012).
In the water! Air and water temps were around 42 degrees. It was cold, but it was awesome.