Hope is a strong emotion. It can drive us. Give us purpose. Even when things look dim, hope can shine a point of light. Sometimes hope is the only thing we can cling to.
Last week , I had a pulmonary function test done. They are very common for people with ALS. It can be simple and quick or more comprehensive. At this point in my progression, we forego the exhaustive , torturing and get down to the nitty gritty. (cue voice of Nacho Libre) The test consists of taking a deep breath and blowing into a device as forcefully and long as you can to empty your lungs. Much like when you get pulled over by the red and blue and they ask you to step to the back of the car and I promise officer it was just one beer and…don’t act like y’all don’t know !!
I jest. The test measures Force Vital Capacity. This is really important because respiratory failure is the common cause of death in ALS. Average FVC for adults is around 80%. When I was first diagnosed , I was hitting well over 100%. As the disease progresses , the diaphragm and other breathing muscles weaken. Making it harder to breathe, expel CO2 and talk. Typically, around the 50% mark, it is suggested to begin more use of breathing assistance. I hit that mark about a year ago.
Since then, my numbers have been on a steep trajectory down. At least compared to previous years. My number last week , 36%. What does this mean? I am getting closer to big decisions.
Enter Hope. The path that lies ahead is inevitable. I hope that I can stave it off. I hope that my breathing hits a plateau. I have some things I would like to do before the next step. That next step being a tracheostomy. I have already decided that I will pursue that path. My hope is that it is still a good ways away.
Included with that , is the hope that there are some effective treatments within reach. Right now, our fight is to stay alive long enough to see a cure. That day may be a long way away , but we hang on to our hopes. I have become involved with an organization working to change the world of ALS. Much of what we are doing is based a lot on our hope to be purveyors of that change. The results of the work being done work to stoke that fire.
Time is not on our side. Yet, we hold on to those glimmers of hope. They keep me going. I will hold on with all that I have. Down to the last string.