Note: To be honest, there are likely a couple more parts to this story, but for now, I’m spent. I’ll come back to it at some point soon to add, addend, and expand. There are a ton of things I want to share, but I am also very cognizant of the downside of oversharing. I don’t want to run everyone off.
For now, here is the final entry for this part of the story. I will never be able to thank you enough for joining me in these posts and allowing me to share this journey. – MAC
Given the delay between the initial diagnosis and the MRI, I used the extra time to do more research. Yes, more. Knowledge is Power, or so I like to tell myself.
The internet, when used properly, (which most people, myself included, fail to do – oh, look, cat memes) can be an incredible resource. So much to learn, so much knowledge to gain. For example, aside from learning MRI stands for Magnetic Resonance Imaging (yes, I felt smarter) I also came across so much information about all the other medical issues an MRI can assist in diagnosing. Honestly, medical technology is amazing.
In this go around, the MRI is looking for abnormalities in the middle and upper spine (for those of you not in Pre-Med, that’s the thoracic and cervix, or maybe it’s cervical, I get those confused).
Edit: Interesting aside. Remember that knowledge is power thing? Well, come to find out I don’t even have a cervix to MRI, so it was definitely cervical. 🙂
Ok. So this is the part where some of you are going to hate on me. (I mean, if you don’t already). I’m actually serious here. I beg for your forgiveness in advance. I pray that you understand where I was coming from. Please.
I began mentally preparing myself for the MRI. I was considering all the potential outcomes… knowing ALS – a terminal, incurable diagnosis – was looming large. I was also keenly aware that there could be many other conditions which could be determined through this process. You know, non-terminal diseases. Those that might offer me a fighting chance. Like maybe a cancerous lump in my spine or something.
My dad died of cancer. I’ve had family who have battled and beat cancer. I have friends who are currently fighting cancer – and every one of them is an inspiration to me.
Do you understand just how wack it is for me to pray that I have cancer? The guilt I felt, knowing that cancer is terrorizing families every day and here I am wistfully wishing it upon myself, was crushing. But that is the overwhelming level of full on desperation that burdens a man who is facing a terminal, incurable disease.
Give me a cancerous lump in my spine. Fine. I am a fighter. I will fight. I will, if only given the chance. Cancer, Parkinson’s, MS… any of these might offer me a fighting chance. ALS simply does not.
Even writing these words now, a year later, I am somewhat appalled. I felt such guilt, pain, sadness, even anger – at myself. There are people struggling everyday with the ugliness of cancer, and I was nonchalantly wishing it into my life. What an asshole. Over time, I’ve slowly come to terms with this, reminding myself of the nature of a “terminal” disease and that I simply longed to have a fighting chance.
I hope you’ll forgive me.
MRI day came. Bright and early on a sunny Saturday in May. Provided my level of Larazasomething, I did not have a care in the world. I could have done four MRI’s that day, bring it on! (As long as they were all done before my happy pills wore off). 🙂
But now having survived my third MRI in three months, we simply wait. Hours, days, months… time seemed an abstract. It had no meaning. And I had no bearing. It was simply wait, then wait some more, for the results.
The neurologist had set a follow up call for Thursday to discuss the results. Lucky me, I actually received my copy of the results on Wednesday. After pouring through the details, and cross checking the information against cat memes, I mean internet research I had done, I came to the conclusion that there was nothing abnormal or questionable in the scans. (Yes, I am still fully aware that I am not a Board certified neurologist).
For any normal, sane person, a clean MRI (two, in fact) would have been a reason to celebrate. For me, far from normal and questionably sane, it was devastating. I knew it meant another layer of probability on the worst case ALS diagnosis. To know more, I must wait again, this time for the neurologist call.
I’m going to admit something here. The Thursday call from the neurologist was uneventful. I know, you’re likely asking, how on God’s Green Earth could a call of such monumental significance be uneventful? Well, it’s simply due to the fact that I was so incredibly self-medicated that I remember absolutely nothing of the call.
Go ahead, judge me if you will, but walk in my shoes first.
On Friday, I had to do a follow up email with the neurologist to ask questions that I was not coherent enough to ask the previous day. He confirmed all the same stuff I had believed to be true (despite my lack of Board certification). 🙂
Now comes the hard part (yes, everything up to this point will have been easy in comparison). I need to tell Melanie, the kids, and my family. I’ve spent nearly three weeks hiding reality from those I love. Three weeks of living a colossal lie. Three weeks of mental and emotional solitary confinement, alone, bearing the soul-crushing awareness of what my future held.
But it was finally time to turn that page, time to start this new chapter – really, to start a whole new book.
And so started this new journey…
Along this Path as of yet Untraveled, toward this Destination as of yet Unknown.
Thank you for joining me. Peace, Love, and Hugs from here.
If you haven’t read any of the other Backstory posts, the remaining posts from this series can be found here:
The Path Untraveled, the Destination Unknown Part 1
The Path Untraveled, the Destination Unknown Part 2
The Path Untraveled, the Destination Unknown Part 3