The last full week of August was an exciting and discouraging time for PALS (Person with ALS) like me. First, the news that a common cause for the various kinds of ALS had been discovered electrified the ALS community. As reported in the journal Nature, a malfunctioning protein called "ubiquilin2" was not doing its job of repairing and recycling other proteins that help the nerves to work. The science of the research paper is well beyond me, but a Facebook PALS described it creatively. When sanitation workers (the ubiquilin2) go on strike, the garbage (the unrecycled proteins) piles up and clogs the streets. Eventually, no traffic can move, similar to the inability of the nerves to send messages to the muscles.
We were excited about the news of this discovery. I sent a message to all my e-mail friends and family that perhaps a cure for ALS might be coming soon. I started thinking about what I would do if I was cured. I would return to my work as a hospice chaplain, live in an apartment, and drive the new 248 mpg car by Volkswagen.
As the week wore on, we learned there is a big gap between finding a cause and creating a cure. The development of a curative drug is a lengthy and expensive process. In our excitement we thought a cure was just around the corner. The reality, so far as we understand it now, is that a cure based on this discovery is years away.
So, we return to waiting, a practice we know quite well. There is a spirituality to waiting under trying circumstances if we are open to it. My friends and I in the ALS community are learning how to live. We have learned to focus on the positive rather than the negative, on what we can do rather than what we cannot do. We have learned to enjoy the present moment rather than wait for fulfillment in a future that may never come. We are loving and being loved by family and friends, getting involved in ALS fundraisers that help others more than ourselves, supporting each other with caring messages and prayer, and keeping our eyes open to see the humor and happiness of life. We are making peace with God. ALS is a terrible disease, but we are becoming better people because we have it.
If a cure is found that will help us have a second chance at life, we will be ready. If no cure is found and ALS kills us, we will be ready for whatever is next. Despite "the slings and arrows of outrageous fortune," despite the suffering that we and our loved ones must yet endure, we see good overcoming evil in our lives. We who have ALS are some of the most noble and blessed people on earth.
(This article was originally published in the Asheville N.C. Citizen-Times newspaper on 4 September 2011.)
