chronic condition

Books focusing on a disability experience

Summer is prime time for reading, but you don’t have to slip the latest John Grisham or a bodice ripper into your beach bag.

There are a lot of great reads – fiction and nonfiction – about people with chronic or age-related disabilities.

Books help readers gain a sense of themselves and others. Understanding people with different challenges enriches a reader’s life.

I recently met book-lover Hanagarne in the pages of his memoir, The World’s Strongest Librarian.

Josh defies the stereotype of the sternly quiet, bejeweled spectacled, bunhead of a librarian.

He’s a hulking 6-foot-7 and so strong from power kettlebell lifting that he can easily rip the thick Salt Lake City phone book in half.

What makes Josh an improbable librarian is that he himself is “un-shushable.”

Josh has Tourette’s Syndrome, a rare neurological disorder characterized by involuntary physical and vocal tics. My only previous knowledge of Tourette’s came from the TV show “L.A. Law” in which a character with the disorder could not reign in his urge to swear and utter racial slurs.

Tourette’s seemed too bizarre to be true until I read The World’s Strongest Librarian and learned how Josh experiences it.

He’s a good sport about it. (What choice does he have?) He writes about his hooting baby owl sound. The slobbering dog sound. The finishing a round of wind sprints sound. His wind-rustling-through-a ghost town sound. The frog in his throat that triggered persistent throat clearing.

Then comes the sobering realization that Josh’s headfirst dive into strength training is a valiant attempt to master his involuntary tics.

What’s lifting a few hundred pounds to one who has been carrying much heavier impediments since childhood?

With humor and candor, Josh finds ways to break the shackles of other weighty issues: loneliness, geekiness, infertility, an inner spirituality at odds with the theology of the denomination in which everyone he loves remains blissfully affiliated.

This is a warts-and-all story told a guy who defies stereotypes – a power-lifting librarian whose literary crush is Fern, the farm girl who saved Wilbur in Charlotte’s Web.

There are many other good books that provide a window into the experience of living with a disability.

Here are a few novel suggestions that will deepen your understanding of aging or disability.

Comment to add your favorites.

  • Havana Heat by David Brock
  • The Speed of Dark by Elizabeth Moon.
  • Flowers for Algernon by Daniel Keyes.
  • Where the River Turns to Sky by Gregg Kleiner.
  • Icy Sparks by Gwen Rubio
  • Lottery by Patricia Wood.

Taking Care

Disability Network/Lakeshore staffer, Chris Wistrom, wanted to share some thoughts with all of you!

I had a “eureka” moment yesterday, the kind where you realize that you haven’t been entirely truthful with yourself.  You see, this past year has been a really rough one for me, and to compensate for that, I’ve been pampering myself.  Notice the terminology there:  I “pamper” myself, instead of “take care” of myself.  You might ask, “What’s the difference?” 

Pampering is a form of self-gratification (at least my case).  I allowed myself to eat whatever I wanted rather than making healthy meals.  I put off exercising.  I felt I deserved to pamper myself to compensate for all the stress in my life. 

Taking care would have made much more sense.  Taking care would have meant not giving in to indulgence, but rather making healthy choices.   My “eureka” moment was about how much better off and healthier I’d be right now if I “took care” of myself. 

Michigan’s Strategic Plan includes a section called “Health Promotion for People with Disabilities.”  You see, they have realized a lot of people in Michigan are doing what I’ve been doing: pampering instead of taking care of themselves.  It’s a situation that has grave implications, no pun intended, especially for people with disabilities.

The Strategic Plan recognizes “there is a strong relationship between disability and chronic disease.”  In other words, if you have a disability to begin with, it’s more likely you’ll acquire other chronic conditions too.   It’s hard to manage a chronic condition when you have a disability.  It’s hard to deal with a disability when you’re trying to manage a chronic condition.  Health Promotion for People with Disabilities works on the premise that, “…all people can be healthy within their own parameters, and that everyone can do something to improve their health and the quality of their lives.

There are over one and a half million people in Michigan with a disability.  There is a greater chance that we will have more problems with obesity, smoking and lack of exercise than people without disabilities.   That makes sense.  It’s more difficult to burn calories when you have limited range of motion or restricted use of your large muscles.  We have more trouble exercising.  Let’s face it, who wants to exercise when your arthritis hurts, or when you can’t walk or run?  How many exercise machines do you see at the gym designed for people with disabilities?  Not too many, I’ll bet!

Now that I’ve seen the light, so to speak, I’m determined to take care.  I’ve made a plan, set some goals.  I am taking control of my own life and I refuse to let stress lure me into thinking it’s okay to pamper myself.  Instead, I am going to take care of myself.

I don’t want to reach my so called “golden years” and find I have to live out the remainder of my life in a nursing home…or that I don’t have any life remaining!  I especially don’t want to be dependent on others for things I can do for myself.  I bet you don’t either, so, please, take care, my friend… take good care.

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