This post may exhibit signs of excessive ramble-ability today, a result of shying away from my blog for too long. At four a.m. I knew what to write; eight hours later, I don’t know how to capture the myriad thoughts bumping around, each vying for my attention.
The first thought cluster revolves around the Clinton Café, where my son took me yesterday for coffee and breakfast. The Clinton’s Monday Club serves to unite those in my son’s wide circle of friends who are either jobless (like me), on a school break (like Prof Rick), or having a day off (like J.R.). Here, between the hours of—oh, who am I kidding? There are no set hours—whatever, they drink great coffee, talk about this ’n’ that, work crosswords, and hang out in an air of general bonhomie. A French word goes well here, for the Clinton’s atmosphere reminds me of what a Left Bank café would surely consist. (I’ve never actually been in France, but my dreams are very realistic. Ask anyone in my family.)
After discussing crop circles and cinema, and arranging to watch the World Cup matches with Kahlil, the plan (if anything so unstructured could be termed thus) was for J.R. to bring me to that most ominous of offices (apart from dentists’): Oregon’s Health & Human Services. Or is it Social Services? Whatever its name, its function is to have overworked and under-appreciated human beings make life and death decisions about their temporarily and/or permanently displaced fellows. These decisions—about who gets to eat, who gets housing, and who gets medical assistance—can only be accomplished by providing the Institution with proper papers, papers, and more papers. It is soul-destroying for the staff to see so much misery, day in and day out, but it is also soul-destroying for those who enter the process. To get their hands on the limited funds, each must one-up the others in line; each must dance a Pity Dance—and hope the audience of one likes the steps. Above all, each learns to mince words, for the Institution punishes those who give too much information.
Yesterday, I realized I did not have the strength to Dance. Having had my soul sucked out in the past, I could not bear to bare that scarred place again. I’m sorry, dear friends, dear children, and dear family, but I cannot do it—even for you.
I know you yearn for a definite answer to the questions, “How long do you have? Weeks? Months? Years? What can we do to eliminate the pain?” You think that having an MD make a pronouncement will help; that an Official Estimate of Death will somehow make things easier for me, or for yourselves, and I appreciate that—more than you will ever know.
But what most White Coats do not, indeed cannot, take into consideration is the Hope Factor., because it does not show up on any scan or screen they choose to view. The Hope Factor results in thousands of people living when the White Coats said they would die, or their lives would be curtailed in a major way: me, for example.
Let me share but a few of my White Coat diagnoses:
- I was told at age 16 I would never sing or teach, due to precancerous nodes on my vocal folds. I’d wanted to become an English teacher, but I abandoned that path because a White Coat told my mother and me I must. Despite two surgeries, with dire warnings prior to the second one that I would probably never speak normally again, let alone sing, I have taught ESL on and off for nearly 17 years. I’ve participated in Irish and American song contests, and even recorded a song I wrote (“You’re Driving Me Crazy”) with a band called Dog Beach. My sister Kathy and I were called the “Chanteuse Sisters,” singing backup vocals on their first album. My voice is better than ever, thank you very much. I won’t be singing at the Met, but people don’t generally run away when I start singing, either. Mashallah.
- In 2002, I suffered a retinal hemorrhage in my right eye. I had laser treatment, after which the doctor told me (a) I would never regain any sight in that eye, and (b) that I would probably experience one in my left eye in three to five years, and thus be left legally blind. Devastated by this diagnosis, I tried to not think about these damning “facts.” Have you ever tried not thinking about something? And, of course, the doctor’s (and all doctors’) famous: “Don’t worry about this, though. Worry will just make it happen sooner.” How comforting! And how wrong!!!!! I regained some sight in my right eye, am wearing the prescription I had before the operation and, eight years later, my right eye is just fine. Inshallah, it will stay that way.
- In 2003, I had a heart attack in the waiting room of an ER in Drogheda. I’d fled there, fearing that my left eye was hemorrhaging again (it wasn’t), and I left two weeks later to live a life of disability and drugs—14 prescriptions in all. Most of these I was told I would have to take for the rest of my life. I moved back to the States at the urging of my brother and others in my family, so I could get better medical care. Working for the cardiology team at Hennepin County Medical Center in Minneapolis, I collapsed one day in the hallway, my heart rate at 30 beats per minute. I was kept in for observation, my meds were changed, and I was out in 24 hours. The meds caused a severe reaction, however, so I had to stop taking them (Lasix was one, I remember. It made me retain water. Yes, you read that right.)
- Then, on December 12th (my mother’s birthday, and also the birthday of the daughter I gave up for adoption) of 2004, I woke up in such severe pain I could not get out of bed. When I was able to do so, I went to my family doctor (one of the White Coats I truly respect), who arranged an MRI for me, and then asked me if I wanted to go to a chiropractor and to counseling. This enlightened man suspected that emotions were playing a big part in my pain, and he was right. The MRI showed four disc herniations, two of them impinging on vital nerves. I was told I must have surgery, and further, that I must have a myelogram prior to it. I didn’t want either. Surgery gives a reason for pain, and myelograms are a sort of torture left over from the Dark Ages. If you’re ever offered one, Just Say No. To make a long story longer, I changed my diet, I exercised (lots o’ walking in those Red Shoes), and I went faithfully to the chiropractor. I am now on no medications whatsoever. Fourteen meds: gone. I’d like to keep it that way.
- And now for the last White Coat story I’ll tell today. In September or so of 2006, an empathetic doctor revealed that I had ovarian cancer in the right ovary. Apart from student health insurance, I had nothing; my age precluded participation in any health assistance program Utah had to offer. I hadn’t been back in the States long enough to earn Social Security “points,” my twelve years in Ireland precluding benefits from that quarter. With tears in his eyes, this aged MD heard this news with a heavy heart. “Are you aware of the statistics for untreated ovarian cancer?” he asked. I replied that they probably weren’t too good. “No. I’m afraid you have anywhere from six weeks to six months, but I wouldn’t plan on longer than that,” he said, softly. “Go out there and enjoy life!”
Now that advice I took. Two days after that meeting, I met a woman who gave me The Secret on DVD. Riveted by the stories of healing against all odds, I, too, began to say, “Thank you for my healing.” Hmm. That was almost four years ago, folks.
All things considered, I haven’t done too badly, have I? Simply put, doctors don’t know when we will die. They just don’t. Moreover, their pronouncements, once said, cannot be unsaid, and poor prognoses taint all but the strongest of wills. Meteorologists cannot predict the weather with any degree of accuracy—take today, for instance. Seismologists were stunned when DeKalb experienced an earthquake a few months ago, and they sure didn’t predict Haiti’s, either. Every day, Nature surprises Science, and Hope trumps a Truth.
And, for the record, I HATE that phrase, false hope. Hope is the one bloody thing that isn’t false! So what if someone thinks they have years to live, and they die two weeks later. Are you telling me they’ll be sorry they were joyful? That their families and friends exulted in the good news, and made plans for the future? Yet I think that doctors, well intentioned though they may be, try to spare us that fleeting happiness, as if it were damaging in some way. Worse, we as humans, trying to appear “rational,” have succumbed to that way of thinking. Totally serious, I once asked Lise as we drove to Chicago, “Will people be angry if I live a long time? What if, like, I heal completely?” As soon as the words left my mouth, I realized how ludicrous it sounded, and we both laughed.
So, dear ones, I am taking my health into my own hands, in a world where Hope, like the Blue Lantern, rules, and pain exists only as a reminder that something needs attention, not that it needs stifling by medications toxic in and of themselves. Please please please realize that I will suffer far more pain if I have to do the Pity Dance for Disability. It’s admitting defeat, and I’m just not ready to do that yet. I still have Hope, and lots of it.
So, in that hopeful spirit, yesterday I registered for classes at PSU. Attending Jules’ graduation on Saturday and seeing all my buds from the publishing program, as well as experiencing the Monday Club yesterday at the Clinton, reminded me how much I enjoy school. Seriously, I love it. The financial aid will help me contribute to our little family, as well as pay for a naturopath. In Oregon, I’m the right age, and because of it, I can get food stamps, which means I’ll be able to get the food that, for me, forms the basis of my healthcare plan.
This is all very well, but without your willingness and ability to take care of me, J.R. and Adrienne, and Brad’s sacrifice of finding another apartment so I could have his room, and Jules putting me up (even letting me sleep in her bed, while she sleeps on the couch!), I would not have the luxury of trying unconventional tumor treatments.
I, too, would be trying to one-up fellow human beings, while simultaneously trying not to give too much information away. I, too, would be dancing for dollars, doin’ the Pity Dance, instead of the Dance of Life.
Thank you, all of you, for letting me practice a dignified exit before the Stage Manager signals the show’s over.