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General

Book Review—Invisible, by Michele Lent Hirsch


The full title is Invisible:  How Young Women With Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine.  It’s a mouthful, and the post title has a character limit for search engines, hence the abbreviation.

First, some summary statements. This is an incredibly information-dense book. The depth and quality of research (and Hirsch’s ability to insert citations conversationally) impressed me. It is written in an engaging style that keeps you reading. Here’s an evil confession—I read a lot of nonfiction, but usually crave a story so badly that I put nonfiction books down midway, read a novel, then pick them back up. You could liken reading nonfiction to eating your vegetables, except that I happen to love vegetables. While reading this book, I did not eye my night table stack with longing, I was here now, reading this book. That is rare enough for me that I declare Ms. Hirsch’s writing style to be a standout. This book is inclusive—Hirsch states early that by women and men she means people who identify as female or male, and when that’s not the case, she specifies “cisgender.” She shows how inclusive language need not be cumbersome. Overall, this book seems almost ahead of its time, “woke” in a way that doesn’t seem forced or labored.



Disability

Assistive Technology: What Do You Like, and What Not So Much?


Writing comes as naturally to me as breathing, petting cats, swimming, and riding my bike. I can’t imagine myself not being a writer. It’s what I do.

I had a 3-week period in the hospital when I wasn’t even able to read. The brain can’t process a change like that—people who lose the ability to read due to a brain injury usually have to be told by someone else that they can’t read. They will look at print and not understand why it doesn’t make sense, but the brain will not put together the idea that a person can no longer read. It’s too much a part of a person’s identity.

If the people around me knew I couldn’t read, they didn’t talk about that in front of me. I had a poster on the wall past the foot of my bed that made no sense. I kept trying to read it and kept getting different things from it. One day I just read it—it was about handwashing, and realized I hadn’t been able to read it before. It was still months before I could count back change.



General

Our Animal Companions: The Best Part of Our Care Teams


Photo by Jill Bates

I’m still running with the animal theme, thanks to Timbits, who you’ll hear about in a bit. Whether our animals are registered service animals or pets, they can be important caregivers. Animals are great for this because we care for them in turn, making it perhaps the most equal give-and-take relationship in our lives. With them, there is no need to pretend you’re fine when you’re not.

The cat you see pictured above, in the wonderful portrait shot by his “Auntie Jill,” is my late Nimby. Yes, Nimby, for Not In My Back Yard. Nimby was larger than life; a perfect replica of a B. Kliban cartoon. Weighing in at 21 pounds, that cat was solid muscle. We missed his first vet appointment because I couldn’t wrestle him into the carrier. Nimby was a character and a half. He made his opinions known—I often said if I’d waited to name him until I knew more about him, I’d have called him Alger because he hissed to get his way. He wasn’t always the easiest cat, but he commanded respect and usually reciprocated.



General

Our Feline Dedication to Routine

Like cats, people like us with health issues tend to have lots of routines. These are perfected over time and when done right, they make the basic drudge tasks of our lives more efficient so we can save our energy for things we enjoy. On a really bad day, our routines can help us power through by reducing it to a process we simply repeat without having to think.

Routines can have a dark side too. We can become so entrenched in the way we do things that we don’t think about it anymore and we may cling to habits that no longer serve us. Or we may not recognize the things right in front of us that we could do better.



General

Just Like That Recurring Dream Where You Are Back in High School


Those of you who have read my book, On Silver Wings: A Life Reconstructed, are familiar with the chapter called “The Other Side of the Scrubs,” in which I return to the rehab center as a coach for a patient, my friend Kathleen, after her knee replacement.

I’ve returned with Kathleen 3 times now, once after spinal surgery and once after her hip replacement. Kathleen is nonetheless active enough to wear me out, and she makes a trip to Europe to celebrate each recovery, walking long distances in her travels.

By going back to the rehab center with Kathleen, I’ve stayed current with the news there. The old building where I did my hitch was loaded with asbestos and deemed not fixable without taking the whole thing down. The center split into two, with the inpatient rehab moved to a special wing at the hospital, and the outpatient center in a renovated building on the hospital campus.

I enjoyed going back as a coach. Everyone remembers me; I was a rehab rock star. I used to arrive early for my sessions and ride 10 miles on the stationary bike before we even began. The rapidity and extent of my recovery took everyone by surprise and I’m one of their best success stories.



General

Murphy’s Law: The Perverse Timing of Flare-Ups


I’ve been covering larger issues and waxing political the last few weeks. Today I’d like to get personal. I hope that by telling what’s going on in my life right now, I will get some of you to share your own stories.

The most challenging part of explaining my physical issues to other people is the fact that they’re not consistent from day to day. Quick rundown—after being hit by a car on my bike in 2010, I have lingering spinal pain from multiple fractures, I have a rod and 8 screws in my left arm, and my left shoulder was heavily damaged so I can only sleep on one side. My right hand is reattached. It was almost completely amputated and degloved—that’s as gruesome as it sounds. The flesh was ripped from the bones and all that stopped it from being turned inside out was my leather cycling glove. I had traumatic and anoxic brain injuries. With all that, as long as I’m wearing long sleeves, you can’t tell there’s anything amiss.



Disability

The Audacity of Voters: Who ‘Deserves’ Medicaid?

Sometimes friends send me articles they think might be blog fodder. Sometimes multiple friends send the same article. That happened 2 weeks ago with a New York Times article called “Who’s Able-Bodied Anyway?” If you would like to check it out before I rip on things I read in it, here’s the link. https://www.nytimes.com/2018/02/03/upshot/medicaid-able-bodied-poor-politics.html

The article discusses the early intent of the Medicaid and other social welfare programs, and the progressive inclusion of more categories of people over time. In the beginning, such programs were for use only by people who could not otherwise provide for themselves—obviously disabled people. People with missing limbs or people who used wheelchairs, that sort of thing. The definition of disabled gradually came to include some people like us, whose issues are not so evident. Some of us do just fine out in the mainstream labor market; others not so much. When you have an issue your caseworker can’t plainly see, it makes it harder to prove the correlation between your problem and your productivity.



Disability

Going on Disability: What It Does & Doesn’t Mean

Me, with friends, at least once a week, after an awkward moment in which I’m revealed to have far less money than they do:

“But you’re on disability, right?”

(Cringe, involuntary clenching of butt cheeks) “No.”

“Why not?”

Every time, I want to scream “Read a book!” But how can I blame my friends when it took me 7 years to understand the answer to that question myself?



General

The Opioid Crisis: A Dissenting Voice

You’ve heard a lot about the opioid epidemic in the news lately. I’m going to give my own perspective on it, and I will preface it by emphasizing that that’s just what it is—one person’s perspective. I arrived at my position by observation and experience, not by scientific research. It certainly doesn’t make your perspective wrong if it is different from mine. I just had a friend lose his brother to an overdose; I do not negate his story by telling my own. I think, though, that we as a society are looking at the wrong issue. The pills are only a symptom of the real problem.



General

Packaging: Getting Steadily Stupider Since 1982


I spit upon the grave of the Tylenol Murderer. Remember in 1982, the chilling string of random murders by tampering with Tylenol capsules? It seems so tame now in light of the mass shootings we now see. "Only" seven people died, and we as a society agreed immediately on quick and decisive action to prevent more deaths (probably because no one was buying over-the-counter medicine.)