So, it’s been quite some time since I’ve written here. I feel like I say that a lot and its something I need to work on. It helps to write, and it helps to let others know what this life is like.
I spent the morning in a pretty good funk. In fact, I’ve spent that last few weeks in a big funk. Its hard to watch yourself change and its even harder when you lose something in total. This disease is like a 200-round fight with Mike Tyson in his prime. When you are first diagnosed your life in a funk fighting between denial, bargaining with God, and did I mention denial? You waste so much time feeling sorry for yourself and those were the best times you had left. You miss things because of it. Later you try to grab it all by the horns and you realize you aren’t running marathons anymore but instead trying to run one lap. But when you lose a leg, arm, or some form of function fully the grim reality rains down on you. That’s when Mike takes his hardest swing. You’ve dropped your hand and left yourself open for a massive cross.
So, the last few months have been that time. I’ve lost my ability to walk and partial ability to stand. My wife must yank me up to my feet and it’s a game of Russian roulette just to hold on for dear life to a car door. My right leg has become nothing, and my left arm has lost half its strength. You haven’t lived life until you’ve been stuck on a toilet for 45 minutes without the ability to lift yourself one inch into a wheelchair. Maybe that’s too much information but its ALS. ALS in its mild stage is wondering how you are going to transfer into bed, how can you sit up, and getting stuck in the middle of the night held down by a blanket that weighs ounces.
The only way I know how to describe it is that someone is loading up your body with weights every day. You start off with a 2lb weight around the ankle and eventually it feels like a bus is holding your leg down. Those weights are my Mike Tysons I must fight.
So, I’d hit the wall of whining. The self-pity train was parked at the station and I was sitting in first class. Then this morning we ran out the door to go speak at a charity event. I used to love being the center of attention, but it becomes harder every day. I look at it all wrong and feel like the room is full of pity looking at me. Sometimes I dread it, but people need to see what ALS is. It most certainly must rank high on the list of asshole diseases (excuse my language) but its rare enough most people have never seen it or been close to it.
Today was a bit different today. I talked to a few classes at Orange Therapy who is fundraising for Augie’s Quest. Fantastic charity and a ton of money raised…hey why not. This one was a bit harder for me. I used to love the gym. I’d come home from work, immediately change, and head to the Y. The feeling was fantastic to lay it all out there to see if I could better myself. These people were doing what I used to love, and I felt a bit empty. The love I felt though really caught me off guard. There were several people there who had been affected by ALS and several more just wanting to hear my story. It felt special to me and I honestly had to fight back some tears. I felt like I was putting a lot out there and maybe it helped shed some light. Maybe it didn’t but it felt good and for the first time in awhile I felt productive again. A few people even brought up reading my blog and hugged me. I really thought I was just talking to myself ha-ha.
So, in overall this year has been crazy. We’ve been through 2 drug trials, traveled all over the east coast, and continue to fight. I maybe losing right now but I want to throw some more victories in the mix this year. I’m fighting emotions daily but getting closer to stable and I still have some punches to throw. It may only be round 8 but I’m preparing myself for the 9th.
If anyone is reading this who participated in the OTF class this morning thanks you for taking time to listen to me. Thank you for your time and donation. What you give myself and others is hope. Maybe next year we can be summarizing a cure or new treatment because of your donations.