I’m not the man I used to be. Once again.
I started this morning the same way as every other day this week: I half opened my eyes, reached over to grab my phone and immediately dropped it on the floor.
There is only a moment of confusion until I finish waking up, see the leaning cane and remember yet again. Even with the cane, there were at least five close calls yesterday. I cannot stand up straight or I otherwise can randomly fall in any direction. Whether standing or stumbling, I must lean deeply into the cane, like a kickstand. I warned Amy yesterday that I will fall soon.
I just don’t want to fall.
If it worsens even a fraction more, I will need a wheelchair soon. My weakness and imbalance have worsened each day for the last month.
I just don’t want it to progress further.
Every day, I ask my wife and concerned visitors over a dozen times, “wait, I asked you that already, didn’t I?” The faces of frustrated patience cast a heavy weight on each heart.
I just don’t want to lose more memories.
The last two weeks have been such a whirlwind of change in my life that I have not even begun to get my bearings. I don’t know what the new normal is yet. I used to drive to work each day. I used to drive, period. My symptoms have progressed so quickly that I walked into my neurologist’s office on my own accord two weeks ago and now I can barely walk, even with a cane.
Wait, I told you that already, didn’t I?
The scariest part is what I refer to as “brain fog”. I could swear my IQ dips by twenty points for hours each day. I have severe short term memory loss and forget things told to me just mere days or even hours before. And I also struggle at those times with such confusion. Before we left for a coast trip one week ago, Amy pulled out all my prescription medicine and daily pill reminder containers. She might as well have given me a dozen Rubik’s Cubes to solve. I just stared at the titration schedule on my neurologist’s release notes and I couldn’t figure it out.
I began to rewrite my memoir about three months ago, when I started to come to grips with my recent diagnosis of PTSD and being nine months sober now. I had no idea that things would drastically fall apart much worse and in such a short span of time. A good friend first asked me if everything was alright at my daughter’s wedding, just six weeks ago. It seems like a year ago. I said I was having a wonderful time and felt great. I asked why.
He said to look down at my hands.
They were shaking as fast as I’d ever seen them go. And yet, I was doing so much better than compared to now. I was still fully ambulatory at that point.
Am I supposed to be thankful that I was at least able to walk my daughter down the aisle, with just weeks to spare?
To compound matters, I’ve spent the last few months drastically underweight. I spend the first half of each day far too nauseous to eat. Food no longer has any appeal to me for most of the day. Amy constantly reminds me to eat, makes me meals and bring me freshly made smoothies with protein powder. I cannot gain weight and am the lightest I’ve been since I was fourteen. They have no idea why any of this is happening. They say it might be old medicines, but they have been out of my system for weeks. And yet now we all are tenuously and inexplicably grasping at that. We are hoping that it all might reverse.
This will all magically go away. You just wait.
I am gripped by the fear that I watched this happen already with another man. The shuffling, stumbling feet that cannot lift high enough and scrape clumsily on the ground. The ever quieting, stuttering speech that rambles and mumbles and people have quickly started to ignore and only pretend to listen to. The memory loss.
Wait, I told you that already, didn’t I?
I watched it all start this way with my dad only six years ago. I remember the shock when he walked out of our old Southampton home and he shuffled slowly with his head toward the ground. He looked 96, instead of 66. Within a few short years, he ended up on a bed, unable to walk or talk at all. He has remained there for years now.
My neurologist said it may be another month before he even tries to make a diagnosis for me. I have been on Parkinson’s medicine for two weeks now. I’m so tired. I’m so thankful for visitors. I've asked for prayers for the first time in over a decade. I predictably and pathetically insist that in this mess, God has a plan for my life.
I believe there is supposed to be a reason for all this. I doubt there is a reason for all this. I believe. I doubt.
I thought 2013 was to be the gold standard of my worst year ever, with a botched and infected shoulder surgery, four weeks of being connected to a vancomycin IV, being diagnosed with Central Pain Syndrome, enduring my second, darkest and most brutal opiate detox and then finally watching helplessly as I was too weak to support Amy as much as I needed to, while her mom passed away in hospice from liver cancer.
Now those days look so innocent. Now my hands wobble and weave each morning until they settle on my dropped phone, cane and laptop keys.
I have to recover. I have such plans.
2013 was not my worst year yet? How is that possible? Dammit. I don’t want to be an inspiration anymore. I am so tired. I’m 47.
I just want to write my story in time.