Several physicians have told me how they used to dread the day of the month the new Reader’s Digest appeared. When I grew up, that formulaic and wildly popular little maggy featured an article on a disease. Within two days, docs would get calls from those sure they had it. That was crazy talk, but it still required diagnosis and much reassurance.
My maternal grandmother, an otherwise bright and witty human, played at that several times a year. In her defense, she lived in a small town in the eastern mountains of West Virginia. Excitement did not seek Romney out. Adding a bit of drama to a humdrum life is understandable.
Well, my grandmother, Mable, did have a disease. Several doctors had diagnosed her with nervous asthma. That is, her wheezing and shortness of breath were as real as someone reacting to physical or airborne irritants. She refused to accept that she might do something other than squeeze her nebulizer bulb. She found one GP, as they were known in the days before FPs and PCPs, who humored her and agreed that she had no control over her condition.
Her foible was small beer compared to Romantic Era poets, opera composers, painters and novelists. Check here, here, here, and here, and relish La Miseria by Cristóbal Rojas above.) Numerous artists sincerely desired to have and die from tuberculosis, for its effects of paleness and weakness. I fear we still see such effects in thigh gaps, anorexia, obsession with wearing size 0, and countless young women who have bodies better suited to 11-year-old boys.
Being too thin, too weak, too wan sound frightful to me, conditions you should avoid through exercise, sensible diet and being sure you have good levels of hormones chugging through your veins.
And yet, a small part of me senses the glamor my grandmother sought to liven her rise-work-eat-sleep quotidian existence. For one specific for Mable, she was big boned (I inherited my big, honking feet and too broad chest from her). She truly wanted to be slight like her sister. They shared a dad, but Mable was the eldest and Anna, from their widowed father’s second wife, the youngest. They were physically unalike and Mable envied her little sister’s build.
Years later I recalled them on my first real full-time job. I went from college to be the editor in chief of the black weekly newspaper in Columbia, South Carolina. The race was important, in part because most readers and all the board members were African Americans.
So were the two everyday office staff, Ida and Jackie. They had been friends from elementary school, through college and now on the job. They were each other’s bridesmaids even. They were intimate and much of the day included personal chitchat mixed with work.
They talked a lot about each other’s bodies. They had the two stereotypical African-American women’s bodies — one short with large bust and bottom, one very slender. They each claimed regularly to want the other’s body. They would embarrass me with such talk as Ida saying her hubby, Thomas, would love to have a wife with Jackie’s sizeable breasts. While I lived with a woman, such intimate talk was not my norm.
Poetry of Illness
While not a drama queen myself (as the French might say, j’ai du sang-froid), I don’t totally lack sympathy with the disease romantics. In fact for a mild example, I recall being maybe 8 when my sister brought home one her many disease gifts. This was German measles as I remember it.
I laid n the bed febrile and covered with itching sores. I projected to various movies and Captain Gallant of the Foreign Legion (a TV show my sister and I watched). There were deserts and heat and suffering and heroism. Blah, blah.
As an adult though, I am only disappointed when my body fails me at any time. I long ago accepted that only in kiddy land can doctors fix you. They are good with acute and obvious conditions. Faced with chronic or nebulous adult disorders, they fail more often than not. “Live with it” is the too frequent prognosis.
Recently though I had minor pleasure at thinking I had rare disorders. I was not aware that desire existed at all in my brain.
Straight up, I had not heard of either polymyalgia rheumatica or macular pucker. I got diagnoses or each of those in turn. Because I have a broad general knowledge and knew of neither, with each I figured I was pretty damned special.
For polymyalgia, I went to bed feeling fine, but woke so sore I could hardly move my arms and struggled mightily to walk 25 feet to the john. I got slightly better over the week and decided to wait it out. A couple of weeks slithered by before I called my doc.
He knows my mild disdain for his profession and was positively chipper in being able to tell me that, “Come in for a diagnosis, but I’m sure that you have polymyalgia rheumatica.”
I had never heard of it but clicked around the tubes to see that I had the symptoms. He confirmed the initial call and hooked me up immediately with a rheumatologist. Before visiting the latter, we spoke and like my internist, he was sure right away.
The good rheumatologist Bates has a lollipop face and is young enough to have a daughter the age of my grandson. He was both very compassionate and a regular pro with polymyalgia. He squashed my romantic, special image quickly by noting that old white women frequently get a mild form of it but typically Caucasian men from 55 to 70 get it hard as I did. It is kind of like sickle-cell disease for African Americans or any of that dozen or more Ashkenazim blood disorders, a curse specifically on old white people. Fair enough.
Dr. Bates said simply, “It’s not rare. If you know a bunch of white men in their 50s and 60s, you know someone who had it.” Sure enough, I have found several peers with the condition. They don’t brag about, but deal with it.
By the bye, it used to be that just had to be crippled for one to seven years and it went away. Nowadays, steroids, typically prednisone, fix it. It requires months of dosing and one to three years of tapering off. You can relapse, often worse.
Well, it’s neither romantic nor glamorous.
My recent chance at drama and uniqueness was macular pucker, a.k.a wrinkled retina. I had blurred vision in one eye and went for my regular eye exam with my self-diagnosis of cataracts. I’m that age.
My optometrist wasn’t playing. He didn’t have all the eye diagnostic gear the surgeons do, but he knew it wasn’t cataracts.
I wanted cataracts. They are a known status and the surgery is nearly 100% effective and immediate.
Instead after a couple of visits to one set of eye specialists and surgeons, and then a second opinion by one of the super doctors, I got the pucker punch. It’s built-up scar tissue from unknown origin on top the macular and retina. It has no relation to macular degeneration. There are no drug, vitamin or exercise fix. Queue the operating room. Moreover, unlike cataract surgery, going into the eyeball to clear out the cells may or may not improve the vision.
Lord, I miss the long gone days when Dr. Newman could poke my butt with penicillin and fix my swollen tonsils.
Regardless, it turns out that my ignorance of macular pucker did not make the condition unique or even that unusual. It’s not as common as polymyalgia, but it’s not rare or romantic or dramatic.
I’m not likely as many to long for the exotic and romantic diseases. Yet, I do have a sense of what that’s about. I think medical stasis and boredom are better.