Myasthenia Gravis

The greatest movie franchise in the history of filmmaking is, without a doubt, the Rocky movie franchise. Many Quotables and life lessons can be learned by just watching a few days' worth of Rocky Balboa. There's one scene where Rocky is talking to his adult son, and he's trying to give him some life advice. Kids, man! Growing older often comes at a price. We start to lose the ones we love, and we begin to undergo changes in our bodies. But that fire, that urge to still do something great, never seems to burn out. Rocky deciding to fight again after all these years was an attempt to ignite those flames and, once and for all, quiet that burn that's been terrorizing his soul.

Rocky says, "Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place, and I don't care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard you hit. It's about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That's how winning is done! Now if you know what you're worth, then go out and get what you're worth, but you gotta be willing to take the hits, and not pointing fingers saying you ain't where you wanna be because of him, or her, or anybody. Cowards do that and that ain't you. You're better than that! I'm always gonna love you, no matter what. No matter what happens. You're my son and you're my blood. You're the best thing in my life. But until you start believing in yourself, you ain't gonna have a life. Don't forget to visit your mother.” That shit resonates with me on a level that’s often indescribable. 

I’ve taken my hits from life, and every time I do, I’m stronger for it. But, this time, this time was different. I was beaten, I was down, and this time I thought it was for good. Losing my eyesight was just the beginning of a long and tumultuous downward spiral toward total paralysis. I have seen so many doctors I had begun to lose track. When I had enough and finally went to the emergency room, they thought it was a blood pressure problem, prescribed me some pills, and sent me home. The crazy thing about doctors is they don't know shit, especially in the ER. They use a troubleshooting tree like I did when I was repairing airplanes for a living. 

Losing my eyesight was just the beginning. After leaving the ER, I barely made it a week before returning with worsening symptoms. They figured out much later that the pills they were prescribing were worsening my condition. I was admitted with presumed heart and kidney failure and was stuck in ICU for three days while they ran tests. They didn't find anything but a hole in my heart that they just assumed was causing the problems. It wasn't. After forcing my way out of that shitshow with what seemed like a million pills to take, I was sent home. I left the hospital feeling ten times worse than when I went in. My eyes were severely compromised, and I was so damn weak. Believing I had a heart and cardiovascular problem, I went on a complete health overhaul and started an extreme workout and diet program. I was so weak from all the pills. My blood pressure would often hover around 90/50, and I could not even get out of bed. I finally convinced my doctor to stop the blood pressure meds, and I immediately started feeling better and started to work out again. Even started challenging myself harder than ever before. I was working out twice a day and was even up to running 10 miles at one point, and then it all came crashing down. During this time, I had seen two eye doctors, a cardiologist, a gastroenterologist, and multiple internal medicine doctors. I even spent three months under the care of a chiropractor because they thought it was a cervical spine issue. Nothing! None of these highly educated people found anything wrong. They told me it was in my head and stress-related. Yeah, I know!

In late August, we flew out to Dallas for my wife's best friends' retirement from the Air Force. I was groggy but just figured I was tired and pressed on. I went to bed when we got to the hotel and when I woke up in the middle of the night, boom, eyesight gone! I knew what was happening but didn't know why or what it was. Blurry vision, sluggish, and tired, I made as most of the trip as I could without being a distraction. Once we got back to Florida, I was just going to keep pushing myself. I started noticing my hand going limp when I tried to do burpees. I was telling it to move, but it wouldn't respond. I thought it was just a pinched nerve and just kept working out. I told you, I'm wired weird. As I was running one morning, I noticed my foot making this clonking sound on the pavement. It was beginning to do the same thing as my hand. It would just dangle as I ran. I was telling it to rise, but it wouldn't. Come on, do something! Then, one day in the kitchen, my son said, "Dad, what's wrong with your eye?" My left eye was moving on its own and was damn near completely closed. The first thing we thought, STROKE. Due to the fact that I hate hospitals and doctors and now suffer PTSD from it, I avoid them as much as I could. So, even though I thought I could be having a stroke, I just went to bed and took my kid to the skate park the next day. I don't know why ok; I'm just different. 

The droopy eye went away after a few days but returned in force around October. This time I could barely open either eye and when I could, everything was blurry and double. Back to the damn hospital! UGH! This time I was admitted to the neurology floor with a presumed stroke. They ran all the tests. No stroke. Aneurysm? No. Blood clots? No? Cranial palsy? No. They still couldn't figure out what was wrong. Male doctors are arrogant pricks, especially when they don't know something. I went home feeling worse, confused, and running out of patience. My wife was starting to believe this was stress-induced and a result of being overworked; she suggested I change my primary doctor to someone close to her office that also focused on medical marijuana. The dude was a Godsend. He was the first person to actually talk with me and not at me. He suggested I start medical marijuana to help with my stress and to also connect with a good friend of his who was a well-known neurologist in the area. He initially thought I had a spine issue, too, and referred me to neurosurgery, who referred me back to him after the MRI showed wear and tear from years of heavy lifting but nothing to cause these symptoms. Finally, to rule out ALS, he decided to test for Myasthenia Gravis. After weeks of waiting for results, I received a call from him on a Saturday afternoon to confirm I indeed had Myasthenia Gravis, A neuromuscular disease. Initially, I was happy I didn't have ALS but saddened that I now definitely had a chronic illness to deal with for the rest of my life. Due to being a brand-new office not yet approved by the board, he couldn't take me as a patient, and I was referred to the best team in the world at USF HEALTH! YAY! Slow down, chief, not so fast; the first available appointment was three months away. As I waited to see the specialist, I declined at a rapid rate. I lost the ability to walk. I lost the use of my hands. I lost the ability to talk. I lost the ability to eat. And I was ultimately starting to lose the ability to breathe. Even at my worst, I still didn't want to go to the ER. I was sitting in the ER, unable to talk or move, and wanted to go home. Doctor Hurst and her Neuro team of all women saved my life. They cared so much, and it showed every day they came to see me and check on me. Doctor Kristen made it her priority to be with me throughout everything, even when treatment wasn’t quick enough, and I declined enough for ventilation. After receiving IV infusions, heavy steroids, plasmapheresis, a feeding tube, breathing assistance, I was finally on the mend. 

In those moments, I realized I had been living a life predicated on the response of others. So much of my life was muted because I cared so deeply about how my very own thoughts and actions were perceived. I had worked my ass off for the life I had always wanted but was constantly afraid to be proud of it because of the way it may make someone else feel. Do you know what it feels like to be unable to speak? Or to be unable to dress and feed yourself? My life that I had taken for granted, the one I was living for others' approval, was seemingly snatched away from me just like that. I promised GOD right there in that hospital bed if he gave it back; with everything in me, I wasn't going to give a damn about what anyone thinks about anything I do! Welcome to Take 2/21, A Wallace Production Podcast, where I speak my truth no matter what! Now, Who the fuck is Mac Jones?!