Let me tell you a story. It’s a long one, but it’s got heroes and a villain and providence and ups and downs. But it’s a good story, in my opinion. (Maybe because it involves me?)
The villain, in this case, is ALS. It swooped in, ruining my personal and career desires, family desires, long term desires. Like most villains, it destroys things in it’s path. It cannot create, it can only subvert and twist and destroy (JRR Tolkien’s explanation of evil for the win). And the villain does not go away. Much like Tolkien, the villain is present till the very end (and there are still villains even after the big villain is defeated). Also like Tolkien, the villain isn’t in your face at every moment. He’s a menacing presence, who’s emissaries create the threat with the knowledge of the incredible powerful force still to come.
The scene is set for the heroes to come in.
It started, as I mentioned in a previous blog post, with my desire for a “fast wheelchair”. I began pursuing companies that had the expertise in carbon fiber construction, and battery construction. My growing speech difficulty means that I need to email to ask for help, but this also makes it less personal. I reached to Tesla, Ferrari, Audi, Mercedes, Porsche, BMW, Lamborghini – all companies with the engineering expertise I need. I heard back from some with kindness and others with a lack of personal touch. I heard nothing from most. I persisted, reaching out to F1 teams and Formula E teams for I knew they had expertise. I heard nothing. I still continue, reaching out in the hope that I will be able to get my idea to market. But in the middle of my pursuit a response from a here unnamed company came with a desire to chat in person. Jack reached out to me and offered a lifeline.
In reality, it’s a long shot. Jack reached out and his company doesn’t usually do business that way. And frankly, I’m not sure they will be willing to help build my superchair. But Jack, the first hero in the story, passed me to his sister Shannon who works for a non-profit that deals just with ALS, called ALS TDI. Shannon was a breath of fresh air for me, as she deals with ALS as a reality everyday. She told me about her institute, the people that are there and what they do. Let me tell you, when you talk to people that understand the way they do, it’s like having a new friend. Shannon put me in touch with her colleague Rob, and also asked Augie Nieto about his wheelchair for me. Shannon is the second hero of the story.
Rob and I chatted next, about things I never thought I’d be able to discuss, especially not outside of a clinical visit. Things like AT-1501, the drug ALS TDI is developing. Nurown, the stem cell treatment from Israel that is going into phase 3 trials. Things like advocacy to congress and the FDA. Things like the hot pepper challenge. And a handshake agreement to meet when he came to DC next. Rob is the third hero of this story.
Now, step aside from that storyline, as the contact lessened over the holidays.
I received a text at 1849 on 30 January. “Does the name Matt Bellina ring a bell?” My sister Celeste, at a function in DC, met this young man there. (Celeste is a hero in this story and in other stories, a recurring character!) Matt also has ALS, has a beautiful family, and is a force to be reckoned with in advocacy for ALS research. He’s also a hero in his own right with his service to our country. If you get the chance, look up Matt. He is an awesome dude. He’s the 5th hero in this story. Matt and I spoke over text and phone, and he made a commitment to write to UMass about the Nurown trials because I had not heard anything from Mass. General. He also put me in touch with another wonderful person at ALS TDI, Carol, who got me help in getting into the ALS Pepper Challenge (more on that in another post.)
Matt contacted Mary Kate, the 6th hero, who contacted Catherine, the 7th hero, whom Mel and I will go to see the week of March 12 to test the Nurown qualifications. (Nurown, so you know, is adult stem cells injected into the spinal cord that regrows “stuff” and is supposed to reverse the progress of ALS. It is recurring, however, not a one time thing.). Nurown
“Joe,” you ask, “what does this have to do with accidents?” OH! I’M SO GLAD YOU ASKED. Let’s talk about the other heroes, that never get numbers. They, like the villain of the story, remain in the background unseen.
As I’m getting these news and contacts and hope for a treatment for ALS, a family friend and his son are praying for me and my family at Fatima, in Portugal, site of the Marian apparition to the three children and the miracle of the sun.
In the time that he is there, praying for us, we received the news of the eligibility for the Phase 3 trial, and the news that we are accepted to go to Lourdes with the Knights of Malta this coming May. And then the family friend came back and passed along an overarching message that he couldn’t help but feel: “expect good things”. To top it off, the week of March 12 is the same week that my patron, Fr Al Schwarz, who died of ALS and is on the path to canonization, would have his feast day (March 16).
OK, if you believe in coincidences, if you believe that the universe created the big accident to make this happen, then this is a huge one.
But I don’t believe in coincidences. I believe in God. Frankly, in that belief is another that if there is a God, He can do what He wants, and will do so, often. And if I believe in God, I do believe that He would make these small events all come about to show me that He is there, and He is in charge, and “He’s got this”. It might not be the way we think. It might not be the big thunderbolt we all hope for. And thats ok. In the cosmos, there are no accidents.
Which leads to the conclusion. The great debate is do I play it safe, stay on the Radicava, knowing that I am being helped by the treatment, or do I risk my body and health in the hope that a 50% chance of placebo can reverse the effects of the villain, and possibly help others affected by the villain of the story? Well, in light of the evidence presented before me, and the whole purpose of this post, what do you think the answer will be?