Feb 272023
 

Over the weekend, I took my first shower since last May.

“Mark, what the hell? You haven’t showered in nine months?”

I’ll try to give the short version of the story.

When I broke my leg last year, I was stuck in bed for a couple of months. When I was finally able to get out of bed, I used my shower for a couple days before discovering that water was leaking through the floor and into the units below. So I had to get estimates from contractors who were already overbooked with other projects. And then when I realized the extent of the work needed to fix the problem, I decided to see if I would qualify for waiver funding to help cover the costs of the modifications. It took a few more months of navigating the bureaucracy before I finally received word that I would qualify for funds. And then the contractor had to order the parts and wait for them to arrive.

The workers still need to put a few finishing touches on the bathroom, but they told me that I could start using it over the weekend. After months of lukewarm bed baths, the sensation of hot water pouring over me…well, it was pretty damn amazing. I’m grateful for the assistance that I received to make my bathroom functional again; I just wish the process could have been faster.

Perhaps I’ll do a separate blog post on how people with disabilities must develop a mastery of bureaucratic arcanery in order to get the supports we need. But first, I’m going to take another shower.

Jan 292023
 

After nearly ten years of using the same wheelchair, I’m in the process of transitioning to a new chair and the experience has been more difficult than I anticipated. The new chair has a customized seat that is subtly different than my old seat, but the differences are enough to cause me some discomfort. As I’m writing this, I’m sitting in my old chair while the new chair occupies a corner of the living room until I can schedule an appointment for further seating adjustments.

I’m sure that I’ll settle into the new chair eventually, but I’ve been asking myself if I’m becoming a cranky old man who is growing resistant to change. After all, I use the same assistive technology to access my computer as I did when grunge music swept the nation thirty years ago. I refuse to sign up for a TikTok account. And I still write “e-mail” with a hyphen. Taken together, these are strong indicators that I’m approaching the “shakes fist at cloud” stage of my life.

In completely unrelated news, I watched Tár last night and I recommend it. My very brief review is here.

Jan 022023
 

Happy (slightly belated) New Year! I don’t make resolutions because I’m terrible at keeping them, but here are a few things that I would like to accomplish in 2023:

  • post on this blog at least a few times each month;
  • reach my Goodreads goal of finishing 20 books this year (I’ve already logged one book for the year, but I kind of cheated by finishing it on January 1);
  • throw a memorable party for my (this can’t be right) 50th birthday;
  • start planning a trip to…somewhere (my ability to travel is going to depend on my staffing, but I’d love to visit Paris again);
  • see a live music performance (the last show that I saw was Massive Attack in October 2019); and
  • start some sort of creative writing project.

What are your hopes for the new year? Feel free to post them in the comments.

Dec 112022
 

So, how are things? I recently joined a creative accountability group in an effort to get back into a regular writing habit and my first goal is to post a new blog entry. We’ll see what happens, but I’m feeling at least somewhat optimistic that this group can motivate me to keep blogging with some regularity.

The past year or so has been a bit rocky for me. Some of you might remember that I depend on 24-hour nursing care to live independently and that care became somewhat shaky as various nurses departed and I struggled to find people to replace them. Those of you who rely on direct care workers probably have your own stories about how the pandemic and its aftermath has made it incredibly difficult to find caregivers. For a while, it felt like I was scraping the bottom of the nursing barrel as I simply couldn’t compete with the hourly wages that hospitals and travel nurse agencies were offering. And then one of those marginal nurses managed to break my left femur on his second day with me, leaving me stuck in bed for over two months earlier this year.

Anyway, things are better now. My staffing has stabilized (at least for now) and my leg is mostly healed. My health is otherwise pretty good and work is keeping me busy, so things are certainly not terrible. But perhaps writing here more often will help me get out of my head, a place where I tend to linger more than I should. And I’m looking forward to once again sharing my thoughts on politics, pop culture, and all of the other topics typically covered in my ramblings. Stay tuned for my 3,000-word treatise on why Andor was the best thing on television this year.

Oct 312019
 

I had my fifth Spinraza injection today and the process is becoming fairly routine. My nurses and the radiology staff are proficient at positioning me on the table attached to the CT machine and the whole procedure takes less than an hour. The radiologist wanted to experiment with using ultrasound to guide the needle into my spine (in order to minimize my exposure to radiation) and I agreed to let him try. It meant that the needle was in my back a little longer than I would have liked, but I’m happy to help further the cause of science.

I’m supposed to lie down for a few hours when I get home to minimize chances of getting a headache, but I didn’t even bother this time. It’s reassuring to know that middle age hasn’t entirely obliterated my rebellious streak.

I’m still not noticing significant improvements as a result of the injections, but I didn’t really expect to see any. I do experience bursts of energy after the injections, which is both nice and kind of weird. I’ve joked that I just want the drug to buy me enough time to see the inevitable Star Wars/Avengers blockbuster in theaters. My eventual decline is inevitable (as it is for everyone), but I’ll gladly pursue any treatment that might give me a few more years of stable health. My brother and his partner adopted an impossibly adorable little girl last year and I’d like to stick around long enough for her to get to know me. And I should probably try writing something again. I might even summon the courage to try dating.

At some point, it won’t make sense to continue these treatments, but hopefully that day is still well beyond the horizon.

Nov 232018
 

Ugh, so much for getting back on a regular blogging schedule. I came down with a nasty infection over the summer, followed by a flurry of less severe but still annoying health issues. I began to worry that I was approaching my expiration date and I withdrew into myself for a time. But thanks to excellent care from my doctors and team of nurses, I slowly recovered and now I’m pretty much back to normal. I now have to take a medication for high blood pressure, but that seems like a small price to pay in order to remain on this mortal coil for a while longer.

Anyway, I’ll try to do a better job of being more consistent with my blogging going forward. Here are a few random thoughts that I’ve been meaning to share:

  • The Haunting of Hill House is one of the best TV shows that I’ve seen this year. It’s a visually sumptuous story that finds horror in both the supernatural and in the dynamics of a broken family.
  • Minnesota Democrats performed even better than I thought they would in the midterm elections. They would have complete control of state government but for the fact that the Senate was not up for re-election (except for one seat). I’m hopeful for progress on initiatives that will make health care more affordable and accessible to those who have fallen through the gaps of the ACA marketplace. MinnesotaCare for all, perhaps?
  • The Packers are not a good team this year. Injuries seem to plague the Packers every year, but I’m beginning to wonder whether a change in coaching might be in order. For too long, the team has relied on a strategy of giving the ball to Aaron Rodgers and hoping for the best. But that strategy depends on a deep pool of talent in the receiver corps, which they don’t have right now.

I hope everyone had a wonderful Thanksgiving. And thanks for reading.

Mar 142018
 

Long-time readers of this blog may remember my imaginary rivalry with Stephen Hawking. We never did get that opportunity to face each other in a cage match aboard the International Space Station (even though my victory was always a foregone conclusion). But I digress. I was truly sorry to learn of his passing yesterday. Not only did he make scientific contributions that will be remembered for decades, but he demonstrated to the world that it’s possible to live a rich, full life with a significant disability. Not all of us will get to be world-class physicists or appear on an episode of Star Trek, but perhaps some kid with a disability will learn about Hawking and realize that her dreams of being a writer or programmer or whatever aren’t so far-fetched after all. Even better, perhaps future kids with disabilities will wonder why their grandparents made such a big deal over Hawking’s wheelchair and speech synthesizer when his mind and sense of humor were his most defining characteristics.

Godspeed, Professor. Eternity beckons.

Feb 252018
 

So, how were the past eleven months for you? I don’t have any good excuses for my hiatus from this blog other than laziness and inertia. In this age of Youtubers and Instagrammers, I wasn’t sure that my scattershot approach to old-fashioned blogging had much appeal (not that my blog was attracting droves even in the mid-Aughts heyday of the format). But I’ve realized that writing helps me clarify my own thoughts on a topic. And blogging forces me to be more articulate than just tweeting “WTF?” or a string of angry emoji. So I’ll do my best to post here on a semi-regular basis about things that I find fun, interesting, or infuriating.

I’ve spent much of the last year reading more books. It’s been a good distraction from the unceasing craziness of the Trump era and nagging worries about whether Medicaid would be cut. I became more active on Goodreads and barely managed to meet my annual reading challenge of 25 books. I’ll post my latest review after this entry, but the TL,DR is that Lev Grossman is a terrific writer and his Magicians trilogy is worth your time. What’s everyone else reading?

I’ll leave you for now with one of my favorite cartoons from the New Yorker on the subject of blogging. It was published in 2007, but I think it’s still apt:

[Description: A man is standing on a street corner and screaming into a megaphone as a startled businessman passes by. Beneath the cartoon is the caption ‘Blogger Without Borders.’ Below the caption are the following words from the shouting man: “You want my latest opinion about the President? How about my opinion of Japanese enzyme baths? Or breakfast wraps–you need to hear what I have to say about breakfast wraps!”]

Feb 182017
 

As expected, House Republicans announced on Thursday their plans to cap Medicaid as part of their broader effort to repeal and replace the Affordable Care Act. Medicaid would be transformed from an entitlement program that covers anyone who is eligible to a fixed amount of funds. This fixed amount of funds would not be sufficient to keep pace with rising health care costs or increased need for Medicaid during economic downturns, forcing states to make some combination of cuts to eligibility, covered services, and payments to health care providers.

One of the most disturbing aspects of the plan is that it pits vulnerable people against each other in a scramble for pieces of a diminishing pie. Republicans portray this as an effort to save Medicaid for “the most vulnerable,” but that’s a lie. Everyone–kids, people with disabilities, the elderly, and poor adults–would suffer as a result of these radical changes to Medicaid. Minnesota alone would face budget deficits in the billions of dollars because of these cuts and the consequences would be felt by a wide swath of my fellow citizens. Republicans aren’t really interested in “saving” medicaid for us poor cripples. They view Medicaid as a huge redistribution of wealth that must be cut as deeply as possible for the sake of free-market principles and survival of the fittest. I’m sure that they would protest this characterization, but it goes to the heart of their ideology.

Of course, this policy fight is personal for me. Medicaid has provided me with the supports I need to live an independent and productive life. If the Republican plan becomes law, I could lose some or all of my nursing care. Minnesota could eliminate the buy-in program that allows me to purchase Medicaid coverage and earn an income, forcing me to quit my job as an attorney. It’s conceivable that I could even end living in an institution. These are scary prospects for me, but millions of other people will be facing even more calamitous prospects if they lose their Medicaid coverage. As I’ve noted before, those of us who depend on Medicaid for our survival can’t allow ourselves to be divided in this fight. If that happens, we will have already lost.

This is only the opening shot in the war on Medicaid. Formal legislation has yet to be introduced and it must go through a lengthy process before it becomes law. But in the meantime, we need to tell our stories to our representatives and senators. They need to understand how Medicaid has made our lives better and how funding cuts could make our lives worse. Those stories need to be told via phone calls to congressional offices and at town hall meetings with your representatives. If enough of us tell our stories, we may be the ones who actually save Medicaid.

Jul 262015
 

Is that a big number “50” I see on the distant horizon? That can’t be right. I’d better enjoy my early forties before I stop buying new music altogether and start watching an inordinate amount of CBS programming.

And no, I haven’t abandoned this blog, at least not yet. But I need to figure out how to make it interesting to me again. It’s become much too convenient for me to tweet out whatever snark is on my mind. Compared to that, writing complete and cogent paragraphs is hard. I’m on vacation this week, so perhaps inspiration will hit me while I’m playing my nth game of Hearthstone.

Thanks for all the birthday wishes.