I should be dead. I'd like to make a song request for Hollywood, FL on April 24th

Mike D88

I've been to many shows and never once felt it necessary to request a song. I've read the band never sees the forum, once the Message Pit, and I don't blame them. Still, I don't know where else to make my plea. Bear with me on this as it's a story and I hope not what you'd expect.

Last December I fell victim to an extremely rare demyelinating autoimmune disease. My initial hospital admittance in Utica, NY was quickly followed by a coma that lasted nearly a month. My MRI was interpreted by the hospital's neurologists as showing many strokes. Theories for my prognosis ranged from brain death to locked-in syndrome. My family was told to say their goodbyes and that the plug would be pulled.

It was only my family's advocacy that led to what happened next. I was transferred to a research hospital in Manhattan where a proper diagnosis came to light: acute disseminated encephalomyelitis, or ADEM. It can be thought of as MS that strikes just once, and suddenly. Like MS, it is entirely autoimmune, although they think it has a trigger, either a viral infection or a vaccine. ADEM usually strikes children, who recover within weeks. Though at my age at the time, 35, it's virtually unheard of. And the recovery takes much longer.

After plasmapheresis, I awoke from the coma, but it took a few months to reach full consciousness and develop memories again. When I did, I was in an LTAC in Tampa, FL. I awoke to find myself completely paralyzed, emaciated, unable to speak, eat or drink, and had a machine breathing for me. It had been months since my last memory. I also had a severe pressure ulcer from being immobile for so long. It took another four months in hospitals to kick the ventilator, regain the ability to speak, get back on a diet, and start restoring motor abilities. In the months since then, I've been doing intense outpatient therapies. I still cannot walk, not yet, but I continue to work towards that every day.

The reason why I want to make a request is not for me, however. Let me explain. I led a small but happy life: I was outdoors, active, hiking, and spending time with friends, including some cousins. One of my cousins is a dedicated woodworker, and wanted to film a rather large, ambitious project. So I filmed it, and it took months, but we felt good about it and were making headway editing it into presentable form. With the physical project done, he re-configured the workshop, and we set a time to start filming the next project. That would never happen.

When I failed to show at the agreed time, he tried to contact me. I never responded. Suspecting something was wrong, he came to my apartment. The neighbor let him in the shared entrance. He was prepared to bust my door down when I actually answered it. But I was totally delusional. He took me to the hospital. Though he doesn't like to revisit it, there's no other way to look at it: that single act saved my life.

Months later, as I regained lucidity in the LTAC, I learned Pearl Jam had a new album coming, and a tour. I was excited, then disappointed, as I realized I'd never get to participate this time.

My birthday fell a week before Dark Matter released. The group back home in NY held a video call, which itself meant tons after being away for so long. At the end of the call, my cousin informed me he had tickets for all of us, including me, to see Pearl Jam at Fenway. I was stunned. I was crying.

The cousin and I had previously done Fenway in 2016 and 2018, so this would be an appropriate return to form. If I still wasn't ambulatory, the group threatened to carry me to my seat. So for most of the summer, Fenway served as my goal as I worked through rehab.

However, it was not to be. My pressure ulcer–ruled stage IV in my last hospital stay (don't look that up, you will have a very bad time)–wasn't far enough along in its healing to safely travel. And so I had to back out, which meant not seeing my friends and not making good on my cousin's efforts.

For that reason I want to make this request. I could request many songs for myself, the list is long. But that strikes me as selfish, even with what I've survived. On April 24th, my cousin, the man who saved my life, will be joining me at the show, this time with my Ten Club tickets. His favorite song is Footsteps. He just about lost it when they opened Fenway with that song. I'd like to share even a trace of that, even more than I want to hear any particular song.

Please play Footsteps at Hard Rock Live on April 24th!

on2legs

After all you’ve been through, your positivity is impressive as is your desire to recognize someone else with your request.  I hope you get it and have a great time! Way to go!

Amantria

Holy cow what a story.  I hope you get your request.  What you're going through is insane

RatherStarved

Jeez the things people will say just to get a request!

jk jk jk 

Sounds like quite the ordeal.  Good luck on this! 

lastexitlondon

What a man. You are inspirational to people like me. 
I hope it all goes well for you.

jjflash

Grateful you're still here to share your story, Mike. Godspeed to your ongoing recovery from the pressure ulcer. Hope we all get to collectively celebrate with you at a live show one day, and, in the meantime, hope your Footsteps request is granted

deb1211

Here's to you and your journey back to good health and to your cousin.

I hope Footsteps will be played.

Mike D88

Thank you all for the kind words. Seeing the band after all that has happened will be fantastic. If this can happen for my cousin, though. There would be no words.

Go Animal

Mike D88 said:

Thank you all for the kind words. Seeing the band after all that has happened will be fantastic. If this can happen for my cousin, though. There would be no words.

DM sent 🫡

bobasfeet

Endorsed.

Mike D88

Bump. Yes I may make a habit out of this. But I have stories. Being stuck in our healthcare and insurance system is terrifying. We all know that danger, or at least should. The more important takeaway is friends and family are invaluable.

I had no medical history prior to this, I didn't even have a primary care doctor. I had carefully constructed my life to involve large corporations as little as possible: I had no debts, no loans, I worked for a small company and my landlord was a small company. My car was old and I had become my own mechanic. Now life is nothing but massive medical institutions and insurance companies. Without retired parents it would be impossible to navigate. Something that has become clear as I gather records to provide future physiatrists is it would have been cheaper, easier and was even expected that I should perish in the early months of this ordeal.

The video project I was working on with my cousin remains on hold. We had whittled hours of footage down to 24 minutes. The next steps were to make a voiceover, get some final shots, and make some final edits. It was not a small project:

Soon I will return to working on the video, but then we'll need more videos to properly launch a YouTube channel without running dry on content right after launch. To do that, I need to be ambulatory, and I need to be home again.

In the meantime, making this happen for my cousin feels like an imperative. And I'm not making this up or trying to fly cover for my own request. I would want Sad, LBC with the Jumpin' Jack Flash tag, Quick Escape, the list goes on. No, I know Footsteps would mean the world for my cousin, and so there is simply nothing I would want more.

THEBIBLEISTEN

Are you a Utica native? 

Mike D88

More or less. I was really in New York Mills and spent most of my time in New Hartford and Clinton. I've lived all over the country, but spent 1/3 of it upstate and identify with the Utica area most. My parents met there and my mom's side is still mostly there. All of my cousins there are my mom's side. My whole life I longed to get back there, and finally did for the last several years.

Mike D88

Bump! Like I said I'll be contributing something to read every time I do this.

Today I'd like to underscore the value of good friends and/or family, not just for your spirits, but as your advocates in a crisis.

At the first hospital I was admitted to, the senior neurologist decided I was gone and they should pull the plug (This, despite having opened my eyes at one point). My father cornered the man and told him, "Pretend he's your son. Where would you take him?" Before long I was bound for Columbia University.

Later, at the LTAC in Tampa, where I was to be weaned off the ventilator, they had begun their standard practice of loading me up with narcotics. For those unfamiliar with LTACs, they're essentially end of life "care" for terminal assisted living or nursing home patients. Something like 3/4 of LTAC patients die there. So their standard practice appears to be throw drugs at everyone so they'll be quiet and cooperative. If you're there to rehabilitate and leave, well, good luck. Also, one of the things my parents were told at Columbia was no narcotics while the CNS recovered. One of my most striking memories from the LTAC was my mother almost coming to blows with a nurse practitioner, because they had me on a comical amount of narcotics. In response, a psychiatrist was called in to back up the nurse practitioner. Instead, the psychiatrist looked at my chart and asked, why the hell was he on all this?

Later still in the rehab hospital, I was being given a slurry of drugs (not narcotics) every night by PEG tube. A fairly standard procedure. One of drugs, though, I was having a negative reaction to. This wasn't apparent until a bit after administration, so the nurse would be on to the next patient and not see it. My friend, however, had been staying late, until I fell asleep each night. She noticed something was up, and brought it to the nurse's attention, who immediately appreciated what was going on and took steps to alleviate it, cutting the drug out entirely. But if hadn't been for my friend, who knows how long that would have gone on for. 

And of course, there is my cousin. Had he not come looking for me... I mean, it would have been easy, and understandable, to just write me off as an oversleeper or a flake. He knew something was up though, and that made all the difference. There is a version of this where no one comes looking for me until the eventual welfare check. Avoiding the trauma to the family alone makes his efforts heroic.