Most everyone who knows me on a personal level knows that I am not an emotional type of guy. I don’t have observable and major outward displays of emotion, and only the closest people in my life get to see the negative emotions as it relates to my ALS diagnosis. These ongoing writings and blog posts have been a form of therapy for myself allowing me to express thoughts and feelings in a broader way, that would have never even crossed my mind in past years. Growing up and even into my adult personal and professional life I have never communicated emotions very well. Often when I see people being loud and emotional I consider that as a form of manipulation, coping or stress relief, but not something I could allow myself to project. As a pretty extreme introvert, emotional displays are not the way I want people to see me and Remember Me, so I tend to be the quiet guy who manages feelings and stressors internally sharing only with my close family and especially with my wife Stephenie.
A thought that I have had a lot lately is that I don’t want or need to project my sorrow or negative vibes into the lives of others, through the projection of my internal feelings. A great example of this is one of my favorite TV shows The Big Bang theory, they had a show where one of the character went to space and after that every discussion revolved around, or he inserted something to relate to, him going to space. The other characters of the show picked up on this and did some experiments to see if they could catch him doing it and that became his personality for that episode. I don’t want to be perceived as the sad guy, who relates every aspect of life (both positive and negative) to the ALS disease that affects me personally.
Over the past two years since my diagnosis January 8th of 2024, I have been consumed with the various stages of mourning. According to the prevailing theory on mourning there are 5 stages that include denial, anger, bargaining, depression and acceptance. This isn’t an order that the stages happen, you can actually be in multiple stages at one time and to varying levels or degrees. Over the past 24 months I have been stuck in anger and depression and finally achieved acceptance probably in the last three months or so. When I talk about mourning it’s more than 1 type of mourning… that’s a thing I think most people don’t realize with a terminal illness. Of course, I’m mourning my own mortality but at the same time I’m mourning multiple small and seemingly insignificant losses or changes that I perceive negatively. So over the past 24 months there have been numerous small things that I am mourning at different times and at different emotional levels while at the same time mourning the bigger end of life perceptions.
Let me give you an example to hopefully make this not sound as crazy as it does while I’m saying it out loud to myself. This is a small thing but hopefully it will illustrate what I’m talking about. I purchased an instrument called a handpan, Which is kind of like a steel drum that you play with your hands and it has a full octave of notes in small circles around the circumference of a single bass note in the middle. This is something I’ve wanted for several years and finally purchased for myself for my 54th birthday. Do a YouTube search for handpan music and you will see what I’m talking about. I got the instrument and tried to play it only to realize that I no longer have the ability to control my left hand enough to play this instrument. I tried a few alternatives like buying mallets to play the instrument and even using small rubber fingertip mallets but I just don’t have the dexterity or muscular control any longer. As I realized that I could not use the instrument, I definitely went through stages of mourning for the loss of that capability which extends to many other things in day-to-day life. The official loss of the use of my left hand wasn’t really something I was worried about or traumatized by as it’s been a very gradual process. However, when I had to make the decision and finally come to terms with the reality that I would not be able to use this instrument, it really hit me hard emotionally. In my stages of mourning for this small issue I definitely had a lot of moments of anger and some related depression, but eventually moved toward acceptance. So that’s just a small example of individual events or situations that I mean by mourning small things.
Recently I had an ALS clinic day, this is where I go to the hospital and meet with all of the different specialists. During the discussion with my primary neurologist, he said that I was progressing extremely slow, with almost no changes in the last 12 months and he found that to be odd. I’m pretty sure he recently went to some trainings, or seminars, or had some kind of professional interaction with others in his field, suggesting new techniques or tests that could be used to find alternative diagnosis that are similar to or mimic ALS. He described and suggested I complete some tests that are very specialized and require pre authorization, because they get sent out to national laboratories for evaluation like the Mayo Clinic. While these tests will be ultimately non conclusive, they might add additional information about my condition that he can evaluate across the range of all his patients. My first reaction to this suggestion was very positive. If I can do a few blood tests to identify specific markers or indicators that would help both myself and the community have a better understanding of ALS. While discussing these tests he basically was insinuating that the test could come back with results that he would interpret as you don’t have ALS. Not having a terminal disease definitely is a positive and life changing possible outcome. Over the past few weeks though, I have realized that I have already processed and become OK with the terminal diagnosis of ALS and have mourned that realization for almost 2 years. To be able to take a few tests that I don’t anticipate will conclusively determined my condition kind of opens up an old wound that has healed to the best that it can.
It kind of feels like a false hope being offered through a new technical diagnosis process. This is compounded a little bit by the fact that I don’t feel ALS research is happening at the rate or urgency required to have an impact on my life. At this point in my ALS journey, I haven’t had a single request for any type of medical information that would be used in a broader research project looking at a small or large contingent of people living with ALS. In my mind every person with ALS should be part of a growing body of research information that includes as much information as can be extracted both medically and environmentally. I want someone to ask me: what jobs have I had, where have I lived, what industrial chemicals I’ve been exposed to what type of exercise routine have I had throughout my life, and many other questions that might lead to a breakthrough in understanding how ALS works.
As I’m processing these renewed feelings of mourning, I find myself being resistant to the idea of doing additional testing because one of the most likely outputs will be no conclusive information that leaves me right back at the ALS general diagnosis. Over the past few weeks, I have done a lot of self evaluation, asking seemingly dumb questions like do I really have loss of muscle control. Also, things like am I having balance issues because of ALS or is it maybe something else related to back injuries or just being old?! I’ve been trying to not second guess or go through the entire process of re evaluating every condition I have, but that’s a little difficult not to do. By nature, I am a very black and white and goal oriented person so the idea of second guessing or backtracking is not a process that I want to spend mental and physical energy on. For now, I’m going to push those reemerging mourning feelings and thoughts down and concentrate on living and doing in the now!! The way that I process stress is to be as busy as possible with projects that bring me joy! These negative thoughts are something for future Sheldon to think about and process!!
