Working with ALS Chapter 10
When I first got sick I had a lot of people ask me to stop working and take time with family. My answer was there is nothing I am missing in life because I have lived life to its fullest and my bucket is full. I would say to you now that the decision to keep working or not is an individual decision. For me, I wanted to work to keep my mind and body moving. ALS basically has two forms, Bulbar and Limb Onset. Both present differently with Bulbar starting in the facial muscles and Limb Onset with the limbs. Bulbar is the most aggressive, but neither have a prescribed timeline that determines life expectancy. With that said, when does a person decide to stop working?
I have been working since I was 11. It was a paper route, but it was a job. From there I held various roles but mostly worked the summers with my dad in construction. At 19 I entered the Army, and if you read “The Hustle" post, you already know why. I worked for the Army for 35 years in total: 21 active service and 14 as a Civilian. My last year working with the Army is when I first started having ALS symptoms. Of course at the time I did not know I had ALS and just kept working thinking it’s just a side effect from the shot or something.
Sept 2021, I interviewed for my current position as the Associate Director of Physical Security for the US Capitol Police and landed my dream job in Jan 2022. As I went through the interview process I had a slur but still thought it’s just a side effect that may not get worse. During my second interview in October 2021 (in person), I informed my soon-to-be-boss that something was up, but it wouldn't prevent me from doing my very best. I spent the holidays with family and friends and by then my voice has changed noticeably and yet still I explained it away because I was sure it would work its way out. We laughed at the changes, Laura would ask me to whistle, and I just kept working and volunteering... after all it was just my speech and a bit of arm weakness.
By January, as you already know, I saw a few specialists and was told it might be a motor neuron disease. Even then I was in denial that this was permanent and would affect me long term. I was going to speech and physical therapy and not giving up. In my position I had access to many areas of the Capitol buildings. So I sometimes mixed in a little fun.
In May, I went to the doctor and found out I had ALS. The next day I went to see my boss and told him and we had a very nice conversation. At that point I started to cry, not because I had ALS, but because at that point I felt as if I was letting my boss down. After a good talk we hugged it out and I went back to my office. Now, I am not the first person to work with ALS - lots of PALS work for many years. I figured I'd just keep going on the job... after all, I’ve been working 44 years. What else am I going to do? As I started to develop more ALS symptoms, I started to realize it was affecting my performance. I was unintelligible over the phone and even my coworkers started having issues with my speech. I kept on going and I thought there was plenty of time. We needed a pay check and I needed to keep busy. When I first started my job I would eat lunch with the boss and a few others. I was eating slow but still eating. Shortly after the diagnosis I got my first G-Tube (Peg) and used it to supplement my meals. In my office I would set up m syringe, water, and food, and feed myself through the peg. I would leave the door open and if anyone asked, I would simply show them so they could learn. I would put coffee in it for a quick wake me up and water throughout the day just like you would drink on a normal day. I would joke with my fellow office workers telling them I was the only one allowed to have a liquid lunch.
Around July, I was using the peg for most meals so I stopped going downstairs with the team. I would tell them I had already eaten or had something to do, but the truth was, I did not just want to sit there as they ate. As far as my job I started to let the phone ring and wait for a message or email to see who it was. I was doing fine communicating via email, but I blew off the phone. I realized that I was going to have to look at medical retirement. I knew that in my position the person needs to be dynamic, able to communicate affectively, and be physically able to move around however was necessary. I was no longer the man that was needed for the job, and I needed to step down. Sure, it would be easy for me to bullshit my way until I died or they kicked me out, but that is not who I am. I spoke with Laura and together we decided I should retire from the Federal Service after 14 years.
After speaking with HR, I realized that financially we were in a good place, and I worried for nothing. As a Veteran, my disability and other organizations have programs to support me. I am very blessed to have the support. If you're eligible and might need to utilize those services, my advice is to reach out as soon as possible. I know there are programs out there for civilians, but I also wonder how it can be done financially and medically without all the support I have.
I refused - and still do - to go home and die. So what now? Time to focus on me and my family. Having time to focus on friends and family now IS my job. And its the best job I have ever had. Working on this blog helps to keep me mentally fit, and working in my garden and on home projects keeps me moving. I had had more people reconnect lately than I have in years, as well as more visitors and impactful events take place. I am NOT retired and dying, I am working and living with ALS.
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