Why This Title?

The title came about like so many great ideas—at a favorite restaurant.  The credit belongs entirely to Dave Bulkowski, Executive Director of Disability Advocates of Kent County, Michigan.  As board president at the time, Dave and I regularly met to discuss board business, issues about disability advocacy and future trends.  I distinctly remember the booth where we ate.  Dave faced the kitchen and I faced the tables, the entrance, and the huge picture window.  I love people-watching.

Since both of us have exploring minds, our conversations always veered off topic.  This particular time, we spoke about difficulties with some acquaintances. Then Dave calmly stated in a nonchalant voice, “You know, I’m not O.K., you’re not O.K., but that’s O.K.”  I laughed, because he was so right.  Each person has habits, hobbies, characteristics, or passions that are so often annoying and unpleasant.  We humans then might complain about that person.  Of course, each one of us tends to believe that our own personal traits couldn’t possibly bother others!  Actually, Jesus said it best, “Why worry about a speck in your friend’s eye when you have a log in your own?” 

 For the next few weeks I mulled over that phrase, “I’m Not O.K., You’re Not O.K., but that’s O.K.”  A different meaning evolved, especially for me, a person who has been disabled almost since birth—now over six decades!  I knew this was the perfect title for a blog and my website.

 Why This Blog?

 So I now had the name, but I credit my father-in-law for this blog’s focus because of two questions he asked me a year before he died.

 I was born on June 18, 1949.  Only six months later, in the early morning of December 11, the polio (Centers for Disease Control and Prevention) struck me  The disease mainly affected my right leg, leaving me with a pronounced limp.  After many operations, I was able to discard the brace I wore during my childhood, but the pronounced limp remained. 

Let me emphasize that I consider myself fortunate in many ways.  From my father’s English side all my siblings inherited a sense of adventure, curiosity, love of laughter, and fearlessness to try almost anything.  From our mother’s German side we inherited intelligence, endurance, tenacity, and stubbornness.  Growing up on afarm gave us a sense of independence and self-reliance.  We never asked, “What would people think?” when we did something.  We just did it!

 Even before I graduated from high school, I knew I would go to college, work, and live in Grand Rapids, Michigan, because it was my home away from home what with all the doctor visits and surgeries.  I loved coming to the beautiful, stately, and exciting cit.  After college, I became engaged to a man whose family always lived in the city.  Country farm gal meets big city guy. 

 My in-laws were not happy about the engagement, but I naively ignored their disapproving looks.  Later I learned they were embarrassed because I was a farmer’s daughter, but mainly because I limped.  Their son married to a cripple?  What would people say?  That phrase often controlled their daily life—What would people say?  They had a long list of do’s and don’ts for themselves, their children, and later, even grandchildren.  They dressed impeccably and their house tastefully decorated.  In public, they always presented a happy façade.  Yet, they continually worried about outward appearances.

To them my ways were very foreign and strange.  I was a college educated, intelligent woman who knew what I wanted and where I wanted to go in life.  For three years after marrying, I worked full-time at the Grand Rapids Public Library.  During the early 1970s the feminist message professed in the media was that a woman must work full-time after having children, and no intelligent woman would decide to stay home.  Thus began the mantra that women could have it all.  In a way, I was decades ahead of the times because when the first child arrived in 1975, I knew that what was best for my husband, the children, and myself, especially being disabled, was to work part-time.  Emulating my mom, I cooked most meals from scratch, was an excellent baker, did all the housework, plus I had many hobbies and interests.  Even more astonishing to my in-laws, I raised the children as free-spirited and adventurous.  I didn’t care about, “What would people say?”

 Each time I saw them, they criticized me for something—working part-time, letting the children roam around my parent’s farm by themselves, camping where there might be germs, allowing them to walk to school, not scouring a pot thoroughly—always something.  I just let the criticisms roll off my back.  I was happy about my life and my many blessings and loved to laugh and smile, even when alone!  Let them find fault; I didn’t care.

 By 1980, I began experiencing new symptoms.  My legs throbbed.  I felt exhausted more than before.  Long walks became more difficult.  A visit to four different orthopedic specialists proved fruitless.  Then I read an article in Time magazine that featured a woman who had polio as a child and experienced new symptoms and this condition was described as post polio syndrome,  (Mayo Clinic – Post-Polio Syndrome) which I will detail in a later blog.

 My in-laws were blessed with excellent health.  Then in 1997 my father-in-law developed lung cancer, caused by decades of smoking.   Even though 81-years-old, he began chemo and radiation treatment.  I remember distinctly the afternoon he and my mother-in-law came to visit.  By this time, our family had moved from the city of Grand Rapids to a more rural area, and we lived about a half hour away from each other so their visits were infrequent. 

 My father-in-law sat across the dining table from me, just intently staring at me, not saying a word.  Then out of the blue he asked the first question: 

“How do you do it?”

 “Oh no,” I said to myself, “What did I do now?” 

 “How do I do what?” I asked.

“How do you deal with all this?”

 That was his second question, said in a downcast and serious way. 

 “Ah,” I said to myself.  “Welcome to my world.” 

 My father-in-law died a year later.  I began thinking about his questions, and reflected on how do I deal with all the pain, the constant stares, being left out, and sometimes loneliness and isolation?  How do I survive?  Not only survive, but thrive and remain relatively happy.  Then I thought of the many, many people who I know suffer from some ailment, condition, or are victims of life’s circumstances, and yet survive.  I know my many ways of crawling out of feeling sorry for myself, of staying happy—my bag-of-tricks, so to speak.  Then I began wondering, what do other persons with a disability or a challenge do?  And if more people knew about these survival skills, perhaps they can be saved from having to ask, “How do you do it?  How do you deal with all this?”

 So these are our stories; our bag-of-tricks; our survival techniques.  Hopefully, we all will come to realize that,

 I’m Not O.K.; You’re Not O.K.; but That’s O.K.

 Send email to thatsok@thatsok.us

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