A song from my youth…
This was a message from my buddy, Derek, in response to the question, is that “a rage hoodie? Shouldn’t that be tattered to shreds?”
“Absolutely not, my friend. That sweater has been the centrepiece of my wardrobe since 1999. It saw the turn of the century. I have a strong memory of the bartender asking me where Che was from. I mistakenly replied “Cuba.” I never liked being wrong (it’s Argentina, I then discovered). So a lot of stuff came from a seemingly benign bit of trivia Brett figured he’d throw my way. And so, what do you think I did? I read. I figure if im gonna wear his face so people would pay less attention to mine, i better damn well know everything there is about the dude. So I did. It has been there before my dx. It was with me during my dx. It went through interferon. It was with me for Tysabri. It was there for the chemo. I brought it to Costa Rica and my brain surgery. It kills Malissa that I’m still rolling around in it. ”
I’m going to frame it. But you can be certain of that..
I’ve been mulling over minutiae to figure out how to best share my thoughts. Turns out it was easy. Im kind of a weird dude. My family is tolerant of this. And I suppose weird+#borngeek=weird geek. Took me 30 years to figure that one out. Now I celebrate the geek in me. It is who I am.
Right, valleys. Follow me, for just one, moderately confusing thought. Imagine your brain in all its slimy, fatty, watery glory. Now without complicating my explanation further, imagine that photo as some part of its topography. Let’s use a daily activity–tying your shoes. This “valley” in your mind has likely been a twice daily”visited valley from age 5. You’ve been there. You have done the sightseeing, tabernac. This is a valley in my my mind often visited.
MS changes the landscape, the very topographical structure of the brain. Those valleys are still there. Just like anyone. There is a valley for tying your shoes. There is one for using the washroom, one for dressing yourself, another for meal prep. So think of these valleys, frequently visited, and intimatrly known to me. And then the ground sarts to tremble. Half the valleys flood with debris. The ground shifts.
#myms caused something of a 7 year earthquake. And just like any post disaster recovery, well, I’ve got to work to get those valleys free of debris. Im now focused on the valley in my my mind not visited since 2008 (walking). I’ll be sure to see valleys are shifted only, and not caved in. With fhat in mind, I just full of rubble. The valleys I spent a lifetime developing are intact. I just need to clear the rubble with the aid and assistance of a physical therapist.
So remember that every warm wish, every “I hope yoi get better” was just one more flashlight pointed into this trracherously deep valley in my mind. I crawled put alive. And I am better for it.
Sometimes, the grass is greener on the other side. The Remitting portion of the name of my illness far outweighs the relapsing half.
Grab an elastic band. If it’s not already stretched, lossen ‘er up. Settle in and indulge me, if you will. Let me fill you in on a little secret:
The way #myms now seems is just part of me as an individual. Grab a ream of paper. Now write A, C, G randomly. Repeat 3.5 billion times. Though not even at all accurate, this is what makes us. I passed high school mathematics with a 60%, and therefore never took statistics. But somehow, the 3.5 billion characters making up my genome spell MS. And so, it is indeed part of who I am. There’s no mystery, no magic. Remission means I now can re-expirence all that (some would say cool) stuff I’ve been through over the last 7ish years. The cavalcade of. ..people I have met have been a steady, helping hand.
Still have that elastic? Without letting it fly across the room, hook it on your thumb and stretch it out. Notice the harder you pull it, the greater the recoil. I’d say my elastic got pretty stretched over the past 7 years. The cool part about #myms is in this period of remission, I have noticed that my recovery is proceeding proportionately. I just woke up this January and my bladder resumed normal function. My eyesight has cleared. The cognitive dissonance I have been in since April 2008 just sory of went away. There is no trick, and it wasn’t brought on by a big Pharma treatment. It is every person who has wished me well. I have a theory involving resonance and nerves, but so as not to complicate matters, i will hold onto that for the book.
So a heartfelt thank you to everyone. I started this blog by writing about my socks. 7 years later, the socks are an issue no longer. Coming soon will be me standing to pee.
I just bought my newest toy. I was #borngeek. This you must keep in mind. I like to think of my dad rolling through life, and lately, my thoughts have been turning to Dad (Giuseppe in the old country, Joe here.)
I remember the light in his eyes as he recounted the days of Pong and such. I built model cars and planes with him. As stated, #borngeek, so I convinced him to get a model of NCC-1701D. For those who were not #borngeek, it was a model of the starship Enterprise.
My newest toy is a wireless charger. Gone are the days of tremor+micro USB (as of the time of this post, one-sided)=damage to the cable/ input on my phone. I go through micro USB at the rate of 2 a year. I counsel any and all facing the issue to pick one up. It does something to me, when I hear that little ‘pop’ when I drop my phone on the gadget. I guess the future is here. Or something…
Recognize this dude? Well, this is (a young version of) Gene Roddenberry. He is best known as the producer, director, and creator and his phenomenal work in assembling the cast of Star Trek: The Next Generation, which played heavily in my development. This one hour a week opened my eyes to concepts far beyond me. Only watching them anew am I forming this link. So many REAL cultural things are portrayed in this beautifully crafted show. At some point, i was exposed to to things such as racial tolerance, Anatomy, Shakespeare, Sir Hawking, and a troupe of guest actors. Because it was all delivered via an enjoyable experience, it sure routed synaptic pathways which activated, for want of a better term, some kind of pleasure response. Malissa knows better than anyone that you need to approach most things slowly with me. If I begin to feel overloaded with input, I have a tendency to shut down. But as with most things for me, she overlooks my asshole-ish ways.
Reason # 17.648,945 why I love THIS girl!
This is The Triune Brain. It was a publication made in a book thay sat on my bookshelf for as long as i can remember. It was called “Dragons of Eden”, by Carl Sagan. Mom was sure to instill a healthy respect for books in her kids. And so it was–i grew up in a book-friendly environment. I was always an inquisitive little guy. I eventually grabbed books by Sir Steven Hawking (A Brief History of Time), and Robert M. Pirsing (Zen and the Art of Motorcycle Maintenance). I couldn’t possibly understand what I was reading, but I plowed through, doing my best to remember. Some of it stuck!
I was just thinking about what seems to me the end of adolescence. I read recently that adolescence runs to age 24. I guess my story tooka smidge longer. I complain a lot about #myms, but I have been little aside from reliving every moment of what I now see as a 6-ish year relapse. The cognitive fog, or dissonance I experienced was something…it was something. At some point, I enlisted the help of a brilliant Neurosurgeon to try implanting a device which altered the very resonance of the impulses fired by my brain. It sort of made me feel not myself. I’ve been rolling this wheelchair since 2009, I do believe. Remission brought many things, including the realization that for the first time in my life, I feel strong. I had always felt that the day I began to see, people my age in popular culture, in the media, and just in general, well that would signify the end of my adolescence. And I am happy to affirm that it is here. But wouldn’t you know it, this is just a new jumping off point. I’ve had lots of them, in more than one place. Mom once said I was “6 going on 30”–now I’m here. Finally…