Yesterday I had a routine pneumonia vaccination scheduled at Walgreen's, a quick prick to give me another layer of defense against that wicked sickness that nearly killed me a few months back. My hospice nurse, Jenn, had scheduled the vaccination and had a confirmation time. Emily bundled me up and we drove to the appointment. Upon arrival we were met with much confusion from the pharmacy team. They questioned why I needed it being that I'm only 30, and pneumonia is an "old person sickness." Jenn and I reiterated that I had just had pneumonia and thus am susceptible. I told the head pharmacist that I have ALS, as Jenn had already mentioned when she called ahead the day before. The pharmacist asked me what ALS was so I gave him the nickname Lou Gehrig's disease thinking surely this would jog his memory, I was met with a blank stare, so he got the mouth full, amyotropic lateral sclerosis and how it's a vicious neurological disease with no cure or survivors. With that definition he was finally able to find something in his computer. Meanwhile, I had done dozens of frustrated donuts in my wheelchair intentionally leaving behind scuff marks on the pharmacy floor.
The pharmacist returned, I thought to myself that I'd finally be out of this damn Walgreen's, they were blasting Country Christmas, slowly driving me insane. Nope, the pharmacist showed me that they could not administer the pneumonia vaccine to anyone 18-49 years of age unless my pre-existing condition matched one of the several high-risk provided; brain cancer, Alzheimers, stroke, to name three of the at least 95+ high-risk conditions. ALS wasn't even recognized on the list. This struck a nerve with me. I was able to get past the ignorant pharmacy staff that hadn't heard of ALS, although that's embarrassing, but I was not happy to see that a nationwide pharmacy didn't recognize my disease as one serious enough to receive the pneumonia vaccine.
The first Ice Bucket representing the world wide phenomenon is being displayed at the Smithsonian due to it's enormous impact to the ALS community. The Ice Bucket Challenge was a tremendous driving force to raise awareness around the world, but my most recent experience showcases how we with ALS still feel ostracized, often, not just by gawkers but by medical professionals. There are wonderful researchers out there fighting for a cure for ALS by the Grace of God, but they can't conquer this monster on their own. Commitments must be made to continue to advocate for those with ALS and relentlessly raise awareness. Phenomena is great, but it dies off. Small initiatives go a long way in raising awareness. Students at Converse Elementary in Beloit, Wisconsin, who come from tough backgrounds and poverty have started a Penny War to raise awareness and money for those with ALS in their community. The ones with the least giving all that they can for the well-being of others.
Yesterday's experience was yet another reminder from God that my work here isn't done, I'll continue to raise awareness until my dying day so those with ALS who come after me never have to feel excluded.