The second week in August I started feeling an odd sensation gripping my waist, like something was tightly wrapped around my middle. It was hard to take a deep breath and I would be winded after just a few steps. I had incredible pain in my back. The prospect of stairs, never mind the actual fact of having to climb them, practically brought me to tears. I had to attend frequent meetings in another building, down the hill from the main facility where I worked. It was so difficult to walk back up that I found myself actually praying God would get me back without disgracing myself by falling on my face halfway there. He always came through for me, I always made it, although I would be sweating and literally gasping for air. I finally realized I had to do something. So with all the wisdom of my 19 years of education, my 13 years as a nurse and my 50 years of life, I made an appointment at last. With a chiropractor.
To be fair, he listened and gave me a seemingly thorough neurological exam, the results of which should have sent me flying to an emergency room. A test for proprioception, outstretched right pinkie to nose with my eyes closed, overshot my nose and landed at my left eye every single time. Over and over again I missed abysmally. Hmm, he said, rather than the totally appropriate, holy shit!
How long have you had a problem with bradycardia, he asked. Never. Well your pulse is 40. FORTY!? He could not get a blood pressure. These alarming signs still did not send me to the hospital. He said he believed it was the vitamins I had begun taking for the leg spasms I had been having that were keeping me up at night (more ignored symptoms). Ok, if he was selling, I could buy that. He adjusted my spine. I went back for four more visits over two weeks. Then I started having trouble walking. That was on a Thursday. I went to see him Friday night, my legs scissoring as I struggled to put one foot in front of the other. He tested the strength in my toes. My left foot and toes offered no resistance. None. Zero. They were floppy and flaccid. He would not adjust me and said he thought it was time for an MRI. It was actually time for an ambulance, but I was in total denial. He looked at me gravely and asked, “What are you most afraid of?” Because I truly believed there was nothing really wrong with me, there could be nothing wrong with me, I laughed and said, “Well, that I have a debilitating neurological disease that will kill me.” He didn’t smile. Uh-oh.
That night I was fascinated by my useless left foot. My leg was now so weak that I couldn’t lift it to cross it over the other when I was sitting in bed. Saturday I spent cooking for our church picnic the next day. I was dragging my leg as I scuttled around my kitchen like Quasimodo. I went to bed that night all ready for the picnic, still insanely believing, hope against hope, that these were some transient aberrations. I woke up four hours later and could not empty my bladder. I couldn’t walk normally and my right eyelid was drooping so much it was practically closed. Almost my entire body was numb. I finally had had enough.
I got dressed, intending to surruptiously drive myself to the hospital. However, when I opened my bedroom door, the three adult children who lived with me were all still awake and sparky at 3 o’clock in the morning. Indeed, two of them had only just come home. Ahh, to be young. When I emerged fully dressed from my bedroom in the middle of the night, their jaws dropped. They dropped even farther when I told them I, who never even acknowledged a cold, was going to the emergency room. They all wanted to come, but the prospect of that scene, with all their different personalities and coping styles, was like something out of the Marx Brothers. I finally agreed to let my oldest daughter come with me. I still drove, an in-denial control freak to the end. Independent, private. How little I was aware that my existence was about to be irretrievably altered. I was driving straight from the world of ignorant bliss to the world of slap-you-in-the-face chronic illness.
At the hospital, no one seemed particularly upset by my symptoms. Indifferently triaged, I sat in the waiting room for over an hour. Knowing the first thing I would be treated to was a catheter, when I was finally called I cheerfully told my daughter to wait for me there. “A cortisone shot, and I’ll be right out!” She looked at me like I was nuts, but she stayed put.
And then, for the only time besides giving birth 28 and 29 years earlier, I became a hospital patient. Off came the clothes, except OF COURSE for my underwear. I may be Episcopalian now, but the Catholic modesty I was raised with is indelible. On went the threadbare gown, worn previously by untold, and probably unwashed, hordes. Ick. I described my symptoms to a bored physician. I was embarrassed that I had had the numbness in my hands for months but had done virtually nothing, so I said it was “a few weeks”. He asked, when did it start? Because I was too stupid to make my answers match my prevarication, I honestly answered May. This was now the last week in August. “MAY! That’s MONTHS!” he exclaimed, as though I had committed murder. “O.K., well its still weeks.” I meekly replied. I told him about the urinary hesitancy (which implies seconds but had been over an hour) and he immediately ordered the dreaded catheter. Goodbye knickers. I tried to get out of it, because I had finally managed to go, but clinically I knew they needed to evaluate any urinary retention. My nurse came in with the sterile kit and introduced himself. He seemed to be nice man and I had no doubt of his competence. But I said something I would not have been capable of a few years earlier: “Can I please have a female nurse?” He was very gracious and accommodating, but definitely looked disappointed, which I found a trifle creepy. Later, when it was time for it to be removed, he popped his head in, snapping on gloves. “Is it ok if I take it out?” My head said “What on EARTH makes you think if I didn’t want you to put it in I would be perfectly fine with you taking it out?!?!?!” But I was forced by years of good breeding to sweetly say, “Would you mind terribly if I had a female nurse again.” Oy vey. He did not look as accommodating this time, but a lovely woman came in and disconnected me. I couldn’t get my bloomers back on fast enough.
Now Mary Kate could come be with me. One of the staff went to get her and my girl walked in with a steaming container of tea that she had gotten for me, unasked. She is truly the perfect child. It was the best thing I had ever tasted, a cup of normalcy. We sat and watched Hurricane Katrina cruelly descend on New Orleans. But my mind was careening. What was wrong with me? Did I have a brain tumor? Did I have Lou Gehrig’s disease? Did I have AIDS from those accidental needle sticks at work years earlier, or careless love with the wrong person? A CT scan was done, blood was taken. The doctor came back. The blood work and CT scan were telling them nothing and, as I still couldn’t walk, or feel, they were admitting me for more testing. “But”, he said blithely, right in front of my dear, pale, loving daughter, “we are probably looking at Multiple Sclerosis.” And he breezed out.
I was stunned, but for all the wrong reasons. I had a brand new job and no sick time. They didn’t know me well enough yet to be aware I NEVER took off sick from work. I couldn’t be admitted! Additionally, because I could not take sick time yet, I would not get paid for any time off and would be losing money every day. On the other hand, I was almost relieved. I could give up trying to pretend I was well and finally get help. The words “Multiple Sclerosis” did not even register. Mary Kate began straightening my sheets and smoothing them over my legs. I looked up at her and she was crying. Taking her in my arms, we held each other and shook.
Next: Testing, testing and more testing. And a steady diet of humiliation.