Dancing for Dollars

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.

  4 comments for “Dancing for Dollars

  1. June 8, 2010 at 16:55

    “Every day, Nature surprises Science, and Hope trumps a Truth.”

    That is fantastically said. It could be argued that Truth is only what you make it, and that Truth is Opinion wrapped in a smaller package. Because we have facts, but we only have facts for what has happened. It is, indeed, impossible to have facts from the future.

    It’s like Back to the Future, when Marty goes to the future and contemplates buying that sports book. He could have all of the stats when he went back to the past, making him rich, rich, rich. If we all had those opportunities, we would probably take them.

    It’s a damn good thing you didn’t listen to those White Coats (WCs). It’s obvious that, against what those WCs would term odds, you have prevailed. They may all be baffled, but that is a fact. There is still much work to be done. But you look great, full of energy and spirit. That has to count for something. And I believe it does.

    I have a friend, Angela, who has been hit by a car (twice), one of those times breaking her back. WCs said she wouldn’t walk ever again. She does, and in addition, she dances her ass off every chance she gets. She also went skydiving and her parachute didn’t open all the way. Yea, no need to explain that one. One time, her lovely dog Dru kept giving her trouble one morning and she missed the bus. Apparently, that bus went off one of Portland’s bridges into the drink.

    This friend Angela, whom I want you to meet at some point, is one of the most amazing spirits I have ever met. She is full of life and energy, and she doesn’t let life get her too down. I think that’s the key. To try to stay as positive as you can, despite what life throws at you. It is hard to do, especially alone, but that is why we have those special friends and family to talk to and help us through. You are one of those special friends, for me. And I’m fairly certain that I am one of those, for you. We are both blessed to have quite a few of those friends and family members. And, I have stolen quite a few of yours as well.

    There are SO many stories of proving WCs wrong. It is the will, the love, the determination, the spirit that keeps us going. If you begin to lose that, I will be there to help you get it back. If you want me to. Like my dear friend Angela, your work here isn’t quite done. You will know when it is, and we will all have to accept that.

    But until then, keep enjoying life to its fullest. You have the freedom to do that now. None of the bullshit pressures and lifecrap that us working folk have to deal with. That is just awesome. It is exciting to think about. I expect to live vicariously through your newfound freedom.

    I love you, dearest one. Glad the bed is to your liking. I wouldn’t have it any other way. Whatever slight discomfort I feel is worth knowing that you are completely comfortable. It gives me joy. As does your daily presence in my life. I have to admit I will miss coming home to you, honey. But it’s good to know you will be just a short walk away.

  2. lisemae
    June 9, 2010 at 06:28

    I suspect that about the time you were posting this, I was thinking about you last night. Now, don’t misunderstand, I think about you often, but you will know what I mean when I explain.

    I was exhausted last night. We started our “long” days this week, which means we do 4 ten hour days and have Fridays off. By Friday, this is a good thing. Right now, it just means that I can’t hardly keep my eyes open.

    I wanted to read last night, but knew if I stayed home, the only text I would see would be my eyelids, so I picked up my book and headed back to campus. I parked by the lagoon, rolled down my windows, and opened the book.

    I’d been reading for about an hour when the light changed quite dramatically. It had been raining and dark all day, but suddenly there was an orange warmth coming over my shoulder.

    I was actually a bit startled. Headlights? A police-issue flashlight? (I was sitting alone in my car in an empty parking lot, after all).

    It was neither, of course. It was the clouds breaking up and the setting sun illuminating everything. It was beautiful. And when I turned to my right, the castle was dark against the gorgeous sky. It looked like a photo I had taken years ago for my grandmother and had shared with you.

    “I must take a photo of this for Jen.” I thought. Reaching into my bad, I saddened to realize that my point-and-shoot was sitting on my desk at work. My “good” cameras at home in their bag. “Well, shoot!”

    But this little voice, you know, the one who is smarter than I am, remembered that the cell phone I keep for my student’s to use to get in touch with me has a pretty good camera on it. There was just enough battery power to take a couple of photos.

    When I charge the camera again, I will send them along.

    Maybe you weren’t posting this as I sat in awe at the sunset, but maybe you were. Either way, we were thinking about each other and that’s the awesome magic of friendship.

    I miss you my friend, but am delighted to read that you are there, and happy, and hopeful. It does my heart good.

  3. June 14, 2010 at 20:26

    What a fantastic, beautifully written note, Lise. And, yes, I believe I was writing the blog at the time. Isn’t that just fantastic? I remember the picture you showed me, as we commented on it. There’s a sunset-light that glows on the castle in a way I’ve never seen it glow on anything else, anywhere. Betty and I commented on it one night when our paths crossed on the way to Dr. Einboden’s class.

    That warmth, that light — it’s what I experienced reading the Qur’an. It’s the light of love. It’s the light of friendship.

    I’m so glad we’re friends, Lise. So so so many people want to meet you! My kids, my friends, their friends. They know what a profound effect you’ve had on my life.

    That picture—when I get it—will be the symbol of our friendship. For you truly have been a light in my life.

    Miss you!

    Abrazos, mi amiga.

  4. June 14, 2010 at 20:32

    Oh, Jules, you never cease to amaze me. I know you have about a billion things going on, yet you took the time to write this to me. And though we see each other every day, you took the time to write this down. I will cherish it, as I do the other gifts you give me.

    I do hope I get to meet Angela some day. Yes, you’re right: we are both blessed to have fabulous friends and family members. And definitely, most definitely, you are one of my special friends. I can’t imagine my life without your smile, without your zest.

    I so appreciate the comfy bed, the good coffee, the great food (oh, those olives!) and letting me be in charge of the remote (tee-hee). Like you, I will miss the comings-home. Luckily, you’ll only be four minutes away (I timed it today).

    Big hugs, and lots of love!
    Jenny-Jen-Jen

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