The condition my condition is in

11 May

Hey there, hope you’re doing well, it’s been too long — quick note, this post is 2700 words. I know, totally over the threshold of readability. And I included a full poem. So, sorry? Thanks for checking in though.

 

Out of the night that covers me,

Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.

 

That is the poem Invictus, written by William Ernest Henley in 1875 while lying in a hospital bed contemplating a leg amputation and tuberculosis. I have these words tattooed on my right arm and shoulder. I got all inked up 1 year after I sliced my spinal cord, which I have since discovered is a typical response for those in the paralysis game i.e. get a tattoo on a part of your body of which you are still proud. In my case my cannonball delts are the only muscle that an Abercrombie and Fitch Executive would consider appealing.

Sometimes, but not often enough to consider myself introspective, I think about old William lying in that hospital bed 151 years ago, which I imagine is about as safe as lying in a hospital bed positioned in the middle of 394 after the first snow of the year. Here’s a dude, thinking he is going to die, writing all this inspiring BS, and 15% of a millennium later that same inspiring BS still fits just so damn well to my experience. Not just the concepts, but his specific words transcend time. From darn close to the Civil War to the rise of President Trump. I find that comforting, that while so much has changed, a part of me is the same as another guy who lived all the way back then, which by no coincidence, is directly related to suffering.

Phew… first off. Hello my good people. It has been an offensively long time since I last shared the status of my life. For that I’m sorry, but also happy, because living a busy life is the cause of my delayed update. I haven’t had time to commiserate on comparing what my life was to what it is now. But again sorry, because I wouldn’t be able to be where I am if not for all that you have done. I think that makes sense.

Secondly, I started with all that intense angst ridden teenager prose because I am going through some change, the most significant since I decided to dive off that f****** boat 44 months ago, and a bizarre mix of things are passing through my head. Much like any old person or redheaded Wildling will tell you, you know nothing when you are young.  And what I think Ygriette was telling Jon Snow is, you can’t know anything unless you have something with which to compare it (I will not be ending any sentences with a preposition today).  I just read over all of the posts since the week I got hurt, which may or may not have been a good idea. Looking back over the past 44 months I finally have some baseline data and trends I can make informed assumptions about. So, let me briefly summarize what I have been up to, what I plan to be doing, and why I believe Dwayne “TR” Johnson will be nominated for a best supporting actor Oscar within the decade. For those of you who don’t want to read on, I completely understand, this writing style is totally obnoxious, so..TL/DR –   I am going back to school to get an MBA this coming fall. There is a 95% chance it will be at the University of Minnesota – Carlson School Management after which I plan to reenter the medical healthcare field. I want to research and develop a means to help people who are medically effed using technology, but through business means because I am no engineer. I am mostly, typically, relatively happy, I am still not cooking enough but am looking forward to the #summerofThomas. I’ll travel back to D and NY C’s to get all political, engage in dance-offs at some great people’s weddings around the US, and hopefully build an electric powered front wheel for my wheelchair so I can drive it like a motorcycle.  Thanks for reading, enjoy your dinner.

 

For those of you deciding to stick around, you are braver than most. I will try to keep this succinct, because seriously, long blog posts are just the worst.

 

March 22, 2015 was the last time I posted an update. At that point I had just bought a manual, or self-powered, wheelchair and a snazzy Volkswagen GTI hatchback. That transition from my power wheelchair and minivan to a manual chair and regular car was profoundly difficult and transformative.  The physical strain involved with using a manual chair as opposed to a power are relatively obvious I assume, what was much more challenging, and frustrating, was relearning how to move around in the world (opening doors that sit on an incline without the 500 pound base of my wheelchair, get to the coffee shop next door over what is titled a road but is more so a collection of potholes with 80-year-old bricks tossed in at random, etc…) and struggling to deal with people trying to help. Now, I never want to sound like the affected and curmudgeonly cripple, but if you ever see somebody with a disability out in the day-to-day, always remember – THEY WILL ASK FOR HELP IF THEY NEED IT. People are constantly assuming I need help – grabbing my chair when getting in/out of my car, pushing me around (which is astoundingly ridiculous, what if someone came up behind you at the grocery store, grabbed your hips, and started pushing you because they thought you needed help getting there?), or just asking me if I need help in literally every aspect of my public life. The difficult part about this is people are only trying to help, to be nice. But when it happens to you three or four times a day, every day, it adds up. What I want to do is use this constant frustration and belittlement to empathize with others who similarly suffer constant unintentional marginalization, but I’m still not as sympathetic as I could be. I just wanted to get that out there, never walk up and help somebody unless they ask you (unless lying on floor, bleeding from head, unconscious).

So, I have been pushing around my everyday chair and driving my non-van for over a year. It’s been fantastic. Not having a 500-pound wheelchair is splendid, getting around tight spaces and door frames and being able to be lifted downstairs is great. A downside is I certainly tire faster and I can’t raise my head up so I can hear people in crowded spaces, but there’s no comparison, my manual chair has been a life changer.  Unfortunately, I did buy the chair out of pocket because, well, because many things I don’t need to get into, and it is somewhat ill-fitting. I have been trying to get a new chair through my insurance for one year, that’s right  – one GD year. Another thing I don’t need to get into, but it’s crazy how difficult it is to get supplies that you really need. And I am a dick and can advocate for myself, I have no idea how people with cognitive challenges manage these situations.

 

If only there was an organization that brought the paralyzed community together.

 

I am overjoyed to say that the nonprofit I helped found, GUSU – Get Up Stand Up to Cure Paralysis (www.gusu2cure.org –  no shame in my game), is doing very well. Last session, the Minnesota Legislature passed a bill funding a grant program that supports research for spinal cord injury (SCI) in Minnesota. Without getting too technical, and because I’ll probably say something untrue, the results of this bill are active clinical trials, in humans, that focus on restoring function.  Happening right now. In Minnesota. Boom. These trials are not investigating depression, pressure sores, or the effects of a low salt diet on chronic cervical spinal cord injured peoples. Tangible proof of interventions restoring lost physical function to people with SCI already exists. A study taking place in Louisville over the past two and a half years saw six of its six participants regain some level of function. The majority regained some portion of bowel and bladder control. Now, to be clear, none of these returns are quite functionable. I don’t know the level of bladder control these guys got back, the important thing is that these interventions affected the injury. Now we just need to find out how and go goddamn crazy on it. That’s my elevator pitch at least, picture an army of people in wheelchairs saying that and you can imagine the impact. So GUSU has been busy at the state capital, though this year we are more thanking and updating legislators, and are developing our organization. Currently I am the marketing director for GUSU, but I will likely take a step back in the beginning of skoo.

 

Another important part of my participation in the SCI community has been peer mentoring. I recently met a dude with SCI, who I am sure doesn’t want to be talked about, but meeting and hopefully helping him as I’ve been helped by others with SCI has had a powerful influence on my mental state. SCI is a brother and sisterhood, the only reason I am able to live ~nearly~ independently, get dressed in the morning, or take a shower on my own, is through meeting, learning, and clowning with other SCI peeps.  I am grateful I now have the opportunity to show others what I have learned.

 

What I just mentioned about learning so much from others with SCI is directly related to quad rugby. Quad, or wheelchair, rugby, is a great form of physical fitness. And it’s actually quite strategic and fun to play. But what I think is the most beneficial is the normalcy it spreads.  I would not be pushing a manual chair, driving a normal car, or traveling independently if it weren’t for the dudes I met in rugby. Seeing a guy with similar function holding a job, starting a family, and not having a PCA put on his Lil’ Wayne influenced supra hightops was so positively impactful I don’t believe I can convey it with words. Just know this, we always hear about how important community is, how important it is to feel like you fit in, and for me that is mightily true – but please do not tell my teammates how much I appreciate them, I could never grant those SOB’s the satisfaction. We just played the national tournament in Houston two weeks ago. We placed fifth. Out of eight teams. In the lowest division. But, I got a lot of clock and learned a whole bunch. And Houston jumped up a few spots in my global city rankings. So you know, that’s cool.

 

The third point in my triangle of consistency is fitness. I continue to work out aggressively to develop, maintain, and protect the muscles I do have and to keep my body as physically fit as possible so as to be ready when a means to restore function comes. It eats up a lot of time and money, but as I move forward and become even more busy I will maintain this focus. Plus it gives me a legitimate reason to have CrossFit shoes, talk about CrossFit to strangers, and complain about how sore I am from doing CrossFit.

 

Beyond that, I am still living in my apartment near the Twins Stadium in Minneapolis, still see a bunch of subpar/par movies, go out and drink too much beer, and go grocery shopping with my mom every other week. I have done some freelance work with a few start ups, shout out to Wellthy, as an advisor on care coordination. I also have what may be a burgeoning business on my hands as an informative speaker for disability insurance. Last week I gave a presentation to a crowd of 40 people in the industry to great fanfare. I made a joke about the spelling of Massachusetts, it killed, you totally should’ve been there.  Beyond that, life marches on, my continued focus is to become fully independent. I am 90% there, there’s only one thing I can’t do on my own. I want to share what it is, but let’s just say I still can’t travel for more than two days alone without the ability to pinch. That’s another thing, I’ve learned I need to set tangible goals, Which in my case is easy because everything is so physical. When I switched to my manual wheelchair I kind of just did it, thought about it, but literally hopped in the chair and figured stuff out. I think that might be my approach to life. You can plan and plan, but maybe the best way to do something is to eat a burrito and do it.

 

So, the future, or, El Futuro. As I said earlier I will pursue my MBA this coming fall, most likely at the Carlson school of Management here at the University of Minnesota.  I want to reenter the medical technology industry and eventually make my way into the research and development of neurological devices.  The idea being with a presence in that area I can influence the focus on spinal cord restoration. Make things happened from the inside, you know? I am extremely excited, I’ve met a few of my potential classmates at the U and everybody is abundantly smart, dedicated, and interesting. Though it is strange, and embarrassing, meeting a whole new group of people as a quad. I have a handshake like the gold fish that died in your kitchen 20 years ago, I cant self-serve at a buffet (which apparently is a B-school standard), and when I open the door to leave the classroom everybody’s going to stare and not know if they should get up and help. But, as I have come to learn, you just do it and eventually everyone gets used to it. I also mentioned I’ll be returning to Washington DC this summer on behalf of the Minnesota Spinal Cord Injury Association to meet with my state legislators.  To be honest, I’m not sure what the specifics of our advocacy will be at the federal level this year, but having Al Franken in your back pocket is definitely a good thing.

So that’s it.. Some days I’m down, but not very often. Easy to feel sorry for yourself when you have such a blatant thing to look at as a reminder, but I’m lucky to be able to do what I can do, for which I’m thankful ( told you). Whenever I sit and ponder, as I have today, this altered storyline, I am reminded of all the people in my life and the incredible sacrifices they have made. From my friends whom I assume are okay with me being late, having to lift me up curbs, and allow me to sporadically freak out when somebody touches my chair, to my parents and sister whom I constantly rely on for unquestioned help and assistance in the most uncomfortable and untimely of circumstances, to everybody I know that his given money, prayers, or words of support to me and my family.  I am grateful, I don’t always recognize it, but I am truly grateful.

 

To all of you, thank you. I love most of you, and I probably like all of you.

 

Hopefully I will update you again sooner rather than later. Oh, and global warming is terrifying, nothing really does matter cause the earth will be a giant pit of boiling water and lava in 50 years anyway.

4 Responses to “The condition my condition is in”

  1. Sophie Glickstein May 12, 2016 at 3:56 pm #

    So true about global warming.

    You are still the best blogger in the game and I am so happy about all your news.

  2. Tim Garner May 12, 2016 at 12:52 am #

    Thomas, good to hear from you again. I’m glad you are keeping busy–seems like a good sign of a healthy mind. Love you, Tim
    PS. I am an engineer, so if you ever need any help in that area, let me know.

  3. Mick Hawkins May 11, 2016 at 6:27 pm #

    I had heard about the possibility of going to grad school and hoped that things would come to fruition. Perhaps they have.

    You mentioned some of the things that you have learned during this process. The rest of us have a long way to go as well. I really appreciate your comments, your insights, and your patience with us, the clueless.

    I loved the pictures you have posted over the past months, pictures of you serious, of you smiling, and of you being you.

    I think of you often, Thomas, for what it is worth. I am glad to have you in my life even marginally.

    And you are right–more from you would be a good thing.

    All the best…

    Mick Hawkins

  4. Zach Norris May 11, 2016 at 2:38 pm #

    First rule of cross-fit? Always talk about cross-fit. (check)