I have raised my children alone for most of their lives, even before my husband died. He was a tugboat captain who was away as much as he was home. I was the homemaker, the disciplinarian, the homework helper, the story reader and, finally, the breadwinner. I didn’t get sniffles, I didn’t take naps. I had my last two babies at home. I was indestructible.
Suddenly, here I was, on the other side. It had been me before assessing patients, asking embarrassing questions, performing humiliating procedures, examining private parts with clinical detachment. But now a nurse asked me in front of my son when my last period was. Another came in while my son and pastor were chatting with me and pleasantly, loudly inquired if I had urinated yet. The neurologist, while surrounded by four or five eager residents, asked me if I had noticed that some of my symptoms had begun as I entered menopause. This was the day after he had gallantly told me I was too old to have MS. “ I haven’t GONE into menopause yet, for Pete’s sake. I am a freak of nature, still fertile at fifty.” The residents cracked up, but he looked irritated, as though I were breaking the etiquette rules of being paralyzed and in a hospital. Levity needed to be checked at the door.
There seemed to be a concerted, and successful, effort to make me feel old, unattractive and nothing more than a mass of body functions. Were they having meetings at night trying to think of the most demeaning treatments and/or questions?
The adorable medical student who was assigned to me was required, as part of his report, to interview me regarding my sexual history. I’m a mature adult, I thought, no problem. First question: Are you sexually active? Ok, so I haven’t had a date in, cough, cough, ok, a while, but I would be if I could be. I assumed being ready, willing and able qualified. The fact that I was not actually having sex with anyone at the moment was, in my opinion, a technicality. These thoughts went through my head so fast they barely registered before I answered, dope that I am. So, yes, I replied nonchalantly, blissfully unprepared for his reaction. “REALLY?!?!” he exclaimed in clear incredulity, if not disgust. He almost fell off his chair. I was mortified. I obviously looked heaps worse than even I thought. Next question: Are you involved with men, women or both? Now it was my turn to be shocked: “Or both”!?!?!?! I suppose I should have been flattered at the implication I could attract both genders when the fact was at this point I could scarcely scrape up one member of the opposite sex. “Oh my God! Men, men! Just men, only men, nothing but men.” It was starting to sound like entire Sixth Fleet, so I stopped short. “Oh my God, but not too many men, not that many.” I was babbling. Next question: how many? Oh crap. I came of age in the late Sixties and early Seventies. This kid is going to think I am a complete pig. So I lied, guessing at what felt like a decorous number for a fat fifty year old. “Four?” I offered. There were no gasps of either shock or pity, so I relaxed a little. Further questions about birth control, childbirth, number of pregnancies, number of children, forced or unwanted sex. Answers: Always careful, natural, 4, 4, no. Lie, truth, truth, truth, lie. No way was I going into any more detail about my life and hard times with this sweet little boy.
I discovered that anyone would have claustrophobia in an MRI coffin. Xanax became my new best friend. But even that was not too much help for the brain MRI where not only are you encased in a 2 foot diameter tube, but you have a cage-like mask snapped in place over your face. And you can’t move. For over an hour.
The neurologist pushed for a lumbar puncture, which I did not want. I agreed tentatively and reluctantly after the promise of heavy-duty sedation. Oh, and a possible diagnosis and, yay, best of all, discharge! “I want to be sedated within an inch of my life”, I told my regular doctor that morning when he stopped in to see me. I love him because he is so good-natured and sympathetic. “ I don’t blame you.” he replied reasonably. However, unbeknownst to me, this slipped through the cracks and nothing extra was ordered.
The obnoxious nurse I had that day came in while I was saying this to my doctor and, without speaking to me or introducing himself, started asking him questions about “she” and “her”, i.e. ME!!! When he paused to take a breath, I firmly stated to him, “SHE would like to be told ahead of time when SHE'S going for HER lumbar puncture.” My doctor chuckled, but the nurse just glared at me and went back to what he had been saying. Twenty minutes later, he came in and said, “Transport is here for your spinal tap.” I said, “But I haven’t had any sedation. And you never told me.” He checked my chart and said, “Well I can give you .5 milligrams of Xanax.”
Considering I wanted to be at a point where they could tell me they were going to remove cerebrospinal fluid through my eyeballs and I would say okey dokey, .5 milligrams of Xanax was not going to even begin to cut it. And I told him so. He started huffing and puffing. I was obviously very inconvenient and annoying. “I would have to call your doctor for something more.” “Knock yourself out then”, I replied with all the dignity and indignation I could muster while wearing blue gingham pajamas. He trumped me though, not just by being fully dressed, but also by spitefully canceling the crucial test I already didn’t want. That’s when I had my melt down, getting on the phone to the nursing supervisor and starting to pack. Within five minutes I had five doctors and three nurses in my room, with soothing, psychiatric, talking-someone-off-the-ledge voices, offering me massive doses of Valium. They had me at 10 milligrams.
A lumbar puncture is a diagnostic test that withdraws spinal fluid by sticking a large gauge needle directly into the space right around your spinal cord. YOUR SPINAL CORD! If that wouldn’t freak you out you would have to be a stone and of course would have no spinal cord so you would have no reason to be upset. Mine was to be done guided by x-ray. I assumed that was because I was fat, which only added to my distress, but later found that because it was more precise with x-ray guidance, the sample was better diagnostically. Silly me. Afterwards, my regular doctor acknowledged he had never experienced one and asked me how it had gone. I was chastened to admit that despite my fear and general carry on, it had not been that painful, just merely awful. To feel the searing burn of the anesthetic, the pressure and almost audible pop of the insertion and the shocks as nerves are stimulated is beyond unpleasant, even while stuffed to the gills with Valium.
Next: So what's wrong with me, besides the obvious?!?!
Thursday, October 30, 2008
Tuesday, October 28, 2008
My Journey, Part 2
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.
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.
Sunday, October 26, 2008
Long Day's Journey Into MS or a Story of Pathological Denial
Some of you have read this already and I apologize for the repetition. It feels a little self indulgent (ok, majorly self indulgent), but what the heck, isn't that what a blog is for? :)
This is the story of how I discovered I had MS.
Bending my head forward one day to examine something closely, I had the sensation of warm water rushing down my chest, arms and legs, right down to my toes. It was so tangible, I looked up at ceiling in shock, prepared to see a cascade emerging from above.
But like a surreal scene in a horror movie, there was nothing. No crack, no hole, no leak, no water. I tentatively patted myself down, feeling for moisture. Nothing. I lowered my head again and it happened again, but now I felt shooting pain along with it, like heated wires. I recalled the feeling that had gone along with the sciatica I had in my last two pregnancies, so I assumed my middle-aged spine was springing a leak. A disc problem, the result of years of poor posture and, well, just years. Fascinating, I thought idly, how we are put together, that everything is so connected something in my neck can affect something in my toes. And with that burst of genius, I did not give it another thought. This amazing sensation was a new part of my existence, whether I lowered my head to write a check, to put on a tee-shirt or follow the hymnal at church. Uncomfortable, but surely benign. Because I did not get sick. Ever.
Years earlier, I had experienced several episodes of numbness in my legs, from the hips to the toes, for about four weeks each time. I was afraid to drive because I had trouble feeling the pedals. Utilizing tremendous common sense, not to mention regard for public safety, I drove anyway; I simply was afraid the whole time. Pinched nerve, I thought. I did mention it to my doctor when I went in for a rare visit. He agreed. I did not get sick. Ever.
Years before that, I had dealt with an eight week bout of vertigo. Treated with Antivert, nothing really helped until it finally, gradually, dissipated. Once over, I put the incident out of my mind. Like the intermittent numbness I had in my hands that I first noticed while visiting my family in Ireland. Like the muscle spasms that cause my hands to jerk dozens of times a day. Like routine bouts of dysphagia. Like the back spasms I have three or four times a year that are crippling in their intensity and last for days. When I allowed myself to think about it, I chalked my symptoms up to neuroses. I was dizzy because I was unhappy at my job. Ten days with my mother in Ireland and it was a perishing miracle that all I had was numb hands. Surely I couldn’t swallow because I was trying so hard to lose weight I was making myself crazy. The back pain was the somatization of stress. I could think of no rationalization for my hands twitching, therefore I ignored it.
My left hand, where it rested on the warm surface of my laptop, began to feel pins-and-needles numb in May of 2005. The numbness gradually spread up my arm. I thought, hmmm, carpel tunnel. But, as a nurse, I knew the wrong areas were affected. Maybe something from the heat of the laptop? Then my right hand started to go numb. Over the next few days, it spread up my right arm as well. I couldn’t feel textures. My handwriting was unrecognizable. I went to push my hair behind my ear and couldn’t feel either the hair or the ear. I ended up ineffectually slapping at the side of my head. This scared me enough to call the doctor, who ordered a spinal x-ray. Totally normal, as we had both expected. Because I…you know the rest.
That month I was offered a new position after three miserable years working at a job I hated. I passed the physical with flying colors. Although it had been hard to produce enough urine for the drug test. Again. Because another one of my problems, conveniently ignored, and certainly not discussed, was an inability to urinate at times, despite having a full bladder. One night I had gotten up and, half asleep, shuffled to the bathroom. Where nothing happened. My eyes flew open as I completely woke up with a start and thought, “Oh my God, I AM SO FAT I HAVE BROKEN MY BLADDER!!” (I am obsessed with fatness.) But I did nothing, told no one, thought of it no more. Each time, I put it out of my head. Sort of. For a growing anxiety and fear was creeping ever so slowly into my consciousness.
I started my new job as a Director the first week of July. I was happy and proud of myself. And I was slowly dying.
My hands were so lacking in sensation that I had cramps from gripping the steering wheel driving to and from work. I had to pick a pen up with one hand and place it into the other in order to write a confounding scrawl. My feet started to get numb, then my legs, then my groin.
My girls and I went out to Lancaster to get a new puppy the first week in August. We rambled up and down through the lush farm fields of Pennsylvania. We ate breakfast at a stuff-yourself-all-you-want Pennsylvania Dutch restaurant, giggling non-stop because we couldn’t stuff ourselves nearly as much as we wanted and because we were the only ones in the place under 80. We drove by an Amish family in a horse drawn buggy, whose little boys waved sweetly and enthusiastically at us as we passed them. And then we brought home our adorable Isabella. But that lovely day was shadowed by the fact that I knew there was something terribly wrong with me. I knew it, but couldn’t process it. A pinched nerve, a pinched nerve, I whispered to myself. You are really sick, something whispered back. I shut that out.
Next: I get worse.
This is the story of how I discovered I had MS.
Bending my head forward one day to examine something closely, I had the sensation of warm water rushing down my chest, arms and legs, right down to my toes. It was so tangible, I looked up at ceiling in shock, prepared to see a cascade emerging from above.
But like a surreal scene in a horror movie, there was nothing. No crack, no hole, no leak, no water. I tentatively patted myself down, feeling for moisture. Nothing. I lowered my head again and it happened again, but now I felt shooting pain along with it, like heated wires. I recalled the feeling that had gone along with the sciatica I had in my last two pregnancies, so I assumed my middle-aged spine was springing a leak. A disc problem, the result of years of poor posture and, well, just years. Fascinating, I thought idly, how we are put together, that everything is so connected something in my neck can affect something in my toes. And with that burst of genius, I did not give it another thought. This amazing sensation was a new part of my existence, whether I lowered my head to write a check, to put on a tee-shirt or follow the hymnal at church. Uncomfortable, but surely benign. Because I did not get sick. Ever.
Years earlier, I had experienced several episodes of numbness in my legs, from the hips to the toes, for about four weeks each time. I was afraid to drive because I had trouble feeling the pedals. Utilizing tremendous common sense, not to mention regard for public safety, I drove anyway; I simply was afraid the whole time. Pinched nerve, I thought. I did mention it to my doctor when I went in for a rare visit. He agreed. I did not get sick. Ever.
Years before that, I had dealt with an eight week bout of vertigo. Treated with Antivert, nothing really helped until it finally, gradually, dissipated. Once over, I put the incident out of my mind. Like the intermittent numbness I had in my hands that I first noticed while visiting my family in Ireland. Like the muscle spasms that cause my hands to jerk dozens of times a day. Like routine bouts of dysphagia. Like the back spasms I have three or four times a year that are crippling in their intensity and last for days. When I allowed myself to think about it, I chalked my symptoms up to neuroses. I was dizzy because I was unhappy at my job. Ten days with my mother in Ireland and it was a perishing miracle that all I had was numb hands. Surely I couldn’t swallow because I was trying so hard to lose weight I was making myself crazy. The back pain was the somatization of stress. I could think of no rationalization for my hands twitching, therefore I ignored it.
My left hand, where it rested on the warm surface of my laptop, began to feel pins-and-needles numb in May of 2005. The numbness gradually spread up my arm. I thought, hmmm, carpel tunnel. But, as a nurse, I knew the wrong areas were affected. Maybe something from the heat of the laptop? Then my right hand started to go numb. Over the next few days, it spread up my right arm as well. I couldn’t feel textures. My handwriting was unrecognizable. I went to push my hair behind my ear and couldn’t feel either the hair or the ear. I ended up ineffectually slapping at the side of my head. This scared me enough to call the doctor, who ordered a spinal x-ray. Totally normal, as we had both expected. Because I…you know the rest.
That month I was offered a new position after three miserable years working at a job I hated. I passed the physical with flying colors. Although it had been hard to produce enough urine for the drug test. Again. Because another one of my problems, conveniently ignored, and certainly not discussed, was an inability to urinate at times, despite having a full bladder. One night I had gotten up and, half asleep, shuffled to the bathroom. Where nothing happened. My eyes flew open as I completely woke up with a start and thought, “Oh my God, I AM SO FAT I HAVE BROKEN MY BLADDER!!” (I am obsessed with fatness.) But I did nothing, told no one, thought of it no more. Each time, I put it out of my head. Sort of. For a growing anxiety and fear was creeping ever so slowly into my consciousness.
I started my new job as a Director the first week of July. I was happy and proud of myself. And I was slowly dying.
My hands were so lacking in sensation that I had cramps from gripping the steering wheel driving to and from work. I had to pick a pen up with one hand and place it into the other in order to write a confounding scrawl. My feet started to get numb, then my legs, then my groin.
My girls and I went out to Lancaster to get a new puppy the first week in August. We rambled up and down through the lush farm fields of Pennsylvania. We ate breakfast at a stuff-yourself-all-you-want Pennsylvania Dutch restaurant, giggling non-stop because we couldn’t stuff ourselves nearly as much as we wanted and because we were the only ones in the place under 80. We drove by an Amish family in a horse drawn buggy, whose little boys waved sweetly and enthusiastically at us as we passed them. And then we brought home our adorable Isabella. But that lovely day was shadowed by the fact that I knew there was something terribly wrong with me. I knew it, but couldn’t process it. A pinched nerve, a pinched nerve, I whispered to myself. You are really sick, something whispered back. I shut that out.
Next: I get worse.
Friday, October 24, 2008
A Funny Thing Happened on the Way to Work
A few days ago, on my way to work, I was behind a pick-up truck at a stop light.
In big letters across the back it said “ALPHA MALE”. Underneath, in smaller letters, it said “Randyman Services”.
Well my jaw fell open. I thought that was illegal.
I was scrambling for a pen and paper to get the number when I realized there was a wet leaf stuck on the lettering. It formed a line that closed the ‘H’. Instead of “Randyman” it actually said “Handyman”.
Phew! That could have been embarrassing.
In big letters across the back it said “ALPHA MALE”. Underneath, in smaller letters, it said “Randyman Services”.
Well my jaw fell open. I thought that was illegal.
I was scrambling for a pen and paper to get the number when I realized there was a wet leaf stuck on the lettering. It formed a line that closed the ‘H’. Instead of “Randyman” it actually said “Handyman”.
Phew! That could have been embarrassing.
Saturday, October 18, 2008
County Jail
And now for something completely different...
Since my life is currently exceedingly uninteresting (thank you God!!), I am falling back on past writing.
This is an essay I wrote two years ago while I was in graduate school (be prepared, it's a little long):
Outside, there was the illusion of the Emerald City, lit and sparkling in the dark. Oz with barbed wire. Our graduate class in Research was here for a tour. We would be writing observations and then adding personal commentary, prior to applying the data to research projects on prisoner’s rights. Most of us, ranging in age from early twenties to early fifties, had never been in a jail before. Either as visitors or residents.
I expected it to be cold inside. And it was, briefly, in some spots. But mostly it was suffocatingly warm. It has the initial, off-kilter atmosphere of institutions that run 24 hours a day: remnants of meals being eaten at odd hours, a whiff of cedar from somewhere, aftershave when you don’t expect it. At one point, for only a few seconds, an inmate passed with a barrel full of wet mop heads and there was the sour smell of cleaning fluid and dirty water. Otherwise the air was innocuous. We would be told, numerous times, that the Sheriff was very proud of the smell, or lack thereof. He frequently reminded us that this was thanks to his innovations and general excellence.
The visitor orientation was meticulously managed and we observers were as carefully watched as we were watching. Perhaps even more so. In a large, utilitarian, ersatz courtroom, students’ faces were studied by five men. Each one of them had a clearly defined role. The guards postured aggressively. Our initial greeter, the Undersheriff, was smooth and impeccably dressed. The Lieutenant gave a practiced speech. The Captain seemed uncomfortable, either about speaking in front of a group or because his suit and shirt were two sizes too small. For whatever reason, he appeared less than happy about visitors.
I could not have anticipated that I would ever contemplate using the phrase “I wanted to puke” in any assignment for graduate school. However, that was my frequent sense while we were being treated to this performance.
The Undersheriff was a small, natty man who looked something like Ed Sullivan. I actually even wondered, looking at him closely, if he was wearing makeup. He efficiently rattled off statistics advising us the jail, between volume and revenue, was one of the biggest corporations in the County. At first, for about 2 minutes, I was impressed by the smooth and professional presentation. Then I realized that before our eyes an extraordinary PR juggernaut had begun to roll.
The theatrical build up as each official was put forward to give his spiel was unintentionally hilarious. The Undersheriff introduced the Sheriff so effusively that if he had been introducing God Almighty Himself, I still would have thought he was little over the top. The only things missing were drum rolls and strobe lights.
The officials’ poses demonstrated an almost cartoon-like aggression, a complete waste of energy for the majority of the credulous and benign graduate students they had in front of them. The Sheriff was articulate and has the mannerisms of a movie Mafia Don. His favorite words were “I” and “me”. I knew we were observing major ego issues when the Sheriff proudly regaled us with tales of all the celebrities he had “worked” with at the jail, ticking them off on his fingers like virtual trophies.
Blustering emphasis on improvements, advances, humane treatment, concern, money saving, money earning. We were frequently told what we would see. Or what we were being ordered to see? Subtle suggestions? Not so subtle suggestions? A great deal of testosterone and self-congratulation throbbed through the air.
I kept wondering who they thought we were that they had to sell us such a bill of goods regarding their beneficence and exemplary management. We were a bunch of goofy grad students for Pete’s sake!
Our tour commenced.
Impressions of pipes, cinder blocks, purely functional industrial fixtures, gouged layers of heavily waxed linoleum. Bleak fluorescent light flickering. The sound of doors slamming over and over and over again.
We were corralled through dingy corridors and down dark stairs to the booking area, which is incongruously painted in salmon and teal. Alongside state of the art fingerprint identification technology sits an ancient, battered, wooden fingerprinting stand. Plastic chairs, metal desks. Buzzers, doors, doors and more doors. Painfully young new inmates stared at us through glass. Boxes of latex gloves sat on a desk, a reminder of rampant HIV and hepatitis. No other Universal Precaution interventions, such as masks, were noted, despite a recent upswing of tuberculosis.
There were no clocks anywhere. Except in the Control Room. Right above the shotguns holstered to the wall. Endless barren halls, battered, pock marked floors, mirrors mounted to reveal hidden corners around a chimney. And then, the prisoners.
Could there be a more hopeless sound than a metal door closing irrevocably on your freedom? I could not bring myself to do anything more than glance at the inmates. It seemed the most obnoxious invasion of privacy to gaze at them as if they were animals in a zoo instead of respecting the fact that they were human beings at their most vulnerable. Before we entered the common area they were chased back away from us, not unlike a lion tamer beats back the beasts at the circus. This, it was emphasized, was for our safety.
The pods in the jail are three tiered and color-coded. Each has an individual gym and a shared outdoor exercise space, perhaps 20 by 30 feet. The cells have metal doors with glass windows. Meager mats cover stainless steel bunks. Chips of paint and stains from dried fluids dappled the floors.
Some inmates ignored the visitors entirely, continuing to watch TV, lie in bed or talk on the multiple payphones. Others taunted and jeered. And there were those who simply stared.
I had the absurd impression of the movie set from Jailhouse Rock and half expected Elvis to slide down one of the metal poles. The way the evening was orchestrated, I would not have been one bit surprised if the prisoners had formed a chorus line and burst into song.
On a scale of 1 to 10, with 1 being a state of delirious happiness in every aspect of your life, and possibly even having magical powers, and 10 being a slow, painful death, jail would have to be a 9. So the incongruous absurdity of being cheerfully ushered into the guard’s dining room for cookies and drinks at the end of the tour was especially offensive.
And then receiving “gifts”, like kindergarteners after visiting the firehouse?! It defies imagination to think what people do with the things they handed out, which included a Monmouth County Sheriff Department patch. It was a farcical touch that befitted a Saturday Night Live sketch.
I can’t help feeling anybody who thinks they are that wonderful is heading for a fall. Because there but for the grace of God goes any of us.
And so we headed back to our lives and academics. We left behind a desolate stronghold and two unique populations, one smugly superior and one grounded in defeat.
Since my life is currently exceedingly uninteresting (thank you God!!), I am falling back on past writing.
This is an essay I wrote two years ago while I was in graduate school (be prepared, it's a little long):
Outside, there was the illusion of the Emerald City, lit and sparkling in the dark. Oz with barbed wire. Our graduate class in Research was here for a tour. We would be writing observations and then adding personal commentary, prior to applying the data to research projects on prisoner’s rights. Most of us, ranging in age from early twenties to early fifties, had never been in a jail before. Either as visitors or residents.
I expected it to be cold inside. And it was, briefly, in some spots. But mostly it was suffocatingly warm. It has the initial, off-kilter atmosphere of institutions that run 24 hours a day: remnants of meals being eaten at odd hours, a whiff of cedar from somewhere, aftershave when you don’t expect it. At one point, for only a few seconds, an inmate passed with a barrel full of wet mop heads and there was the sour smell of cleaning fluid and dirty water. Otherwise the air was innocuous. We would be told, numerous times, that the Sheriff was very proud of the smell, or lack thereof. He frequently reminded us that this was thanks to his innovations and general excellence.
The visitor orientation was meticulously managed and we observers were as carefully watched as we were watching. Perhaps even more so. In a large, utilitarian, ersatz courtroom, students’ faces were studied by five men. Each one of them had a clearly defined role. The guards postured aggressively. Our initial greeter, the Undersheriff, was smooth and impeccably dressed. The Lieutenant gave a practiced speech. The Captain seemed uncomfortable, either about speaking in front of a group or because his suit and shirt were two sizes too small. For whatever reason, he appeared less than happy about visitors.
I could not have anticipated that I would ever contemplate using the phrase “I wanted to puke” in any assignment for graduate school. However, that was my frequent sense while we were being treated to this performance.
The Undersheriff was a small, natty man who looked something like Ed Sullivan. I actually even wondered, looking at him closely, if he was wearing makeup. He efficiently rattled off statistics advising us the jail, between volume and revenue, was one of the biggest corporations in the County. At first, for about 2 minutes, I was impressed by the smooth and professional presentation. Then I realized that before our eyes an extraordinary PR juggernaut had begun to roll.
The theatrical build up as each official was put forward to give his spiel was unintentionally hilarious. The Undersheriff introduced the Sheriff so effusively that if he had been introducing God Almighty Himself, I still would have thought he was little over the top. The only things missing were drum rolls and strobe lights.
The officials’ poses demonstrated an almost cartoon-like aggression, a complete waste of energy for the majority of the credulous and benign graduate students they had in front of them. The Sheriff was articulate and has the mannerisms of a movie Mafia Don. His favorite words were “I” and “me”. I knew we were observing major ego issues when the Sheriff proudly regaled us with tales of all the celebrities he had “worked” with at the jail, ticking them off on his fingers like virtual trophies.
Blustering emphasis on improvements, advances, humane treatment, concern, money saving, money earning. We were frequently told what we would see. Or what we were being ordered to see? Subtle suggestions? Not so subtle suggestions? A great deal of testosterone and self-congratulation throbbed through the air.
I kept wondering who they thought we were that they had to sell us such a bill of goods regarding their beneficence and exemplary management. We were a bunch of goofy grad students for Pete’s sake!
Our tour commenced.
Impressions of pipes, cinder blocks, purely functional industrial fixtures, gouged layers of heavily waxed linoleum. Bleak fluorescent light flickering. The sound of doors slamming over and over and over again.
We were corralled through dingy corridors and down dark stairs to the booking area, which is incongruously painted in salmon and teal. Alongside state of the art fingerprint identification technology sits an ancient, battered, wooden fingerprinting stand. Plastic chairs, metal desks. Buzzers, doors, doors and more doors. Painfully young new inmates stared at us through glass. Boxes of latex gloves sat on a desk, a reminder of rampant HIV and hepatitis. No other Universal Precaution interventions, such as masks, were noted, despite a recent upswing of tuberculosis.
There were no clocks anywhere. Except in the Control Room. Right above the shotguns holstered to the wall. Endless barren halls, battered, pock marked floors, mirrors mounted to reveal hidden corners around a chimney. And then, the prisoners.
Could there be a more hopeless sound than a metal door closing irrevocably on your freedom? I could not bring myself to do anything more than glance at the inmates. It seemed the most obnoxious invasion of privacy to gaze at them as if they were animals in a zoo instead of respecting the fact that they were human beings at their most vulnerable. Before we entered the common area they were chased back away from us, not unlike a lion tamer beats back the beasts at the circus. This, it was emphasized, was for our safety.
The pods in the jail are three tiered and color-coded. Each has an individual gym and a shared outdoor exercise space, perhaps 20 by 30 feet. The cells have metal doors with glass windows. Meager mats cover stainless steel bunks. Chips of paint and stains from dried fluids dappled the floors.
Some inmates ignored the visitors entirely, continuing to watch TV, lie in bed or talk on the multiple payphones. Others taunted and jeered. And there were those who simply stared.
I had the absurd impression of the movie set from Jailhouse Rock and half expected Elvis to slide down one of the metal poles. The way the evening was orchestrated, I would not have been one bit surprised if the prisoners had formed a chorus line and burst into song.
On a scale of 1 to 10, with 1 being a state of delirious happiness in every aspect of your life, and possibly even having magical powers, and 10 being a slow, painful death, jail would have to be a 9. So the incongruous absurdity of being cheerfully ushered into the guard’s dining room for cookies and drinks at the end of the tour was especially offensive.
And then receiving “gifts”, like kindergarteners after visiting the firehouse?! It defies imagination to think what people do with the things they handed out, which included a Monmouth County Sheriff Department patch. It was a farcical touch that befitted a Saturday Night Live sketch.
I can’t help feeling anybody who thinks they are that wonderful is heading for a fall. Because there but for the grace of God goes any of us.
And so we headed back to our lives and academics. We left behind a desolate stronghold and two unique populations, one smugly superior and one grounded in defeat.
Sunday, October 12, 2008
The Week That Was
Not one remotely amusing or interesting thing occurred all week. Considering the year I’ve had, I am taking this as a good thing.
I have not had any Deep Thoughts either.
I have noticed my Deep Thought posts are the ones that receive the fewest comments. As in…none. Perhaps they are Deeper than I intend.
I will try to be more observant in the coming week. There must be something funny going on.
I have not had any Deep Thoughts either.
I have noticed my Deep Thought posts are the ones that receive the fewest comments. As in…none. Perhaps they are Deeper than I intend.
I will try to be more observant in the coming week. There must be something funny going on.
Sunday, October 5, 2008
Ch-ch-ch-changes
Template
Changed the template. I do that every few months because I just get so bored with one thing. Which is weird, because I never do that in real life. I never rearrange the furniture. I practically need to be sedated before I will think of changing curtains or a bedspread. But there you have it, I needed a change. I am trying to find the one that feels the most right.
Weekend
What did they used to say women did to cheer themselves up? Had their hair done and bought a new hat?
Well, I got my hair cut.
And I made a hat:
The little notes about donations in Dennis’ name were on apples because that was part of the Fall theme.
Changed the template. I do that every few months because I just get so bored with one thing. Which is weird, because I never do that in real life. I never rearrange the furniture. I practically need to be sedated before I will think of changing curtains or a bedspread. But there you have it, I needed a change. I am trying to find the one that feels the most right.
Weekend
What did they used to say women did to cheer themselves up? Had their hair done and bought a new hat?
Well, I got my hair cut.
Before hair:
After hair:
And I made a hat:
And the beginnings of a sort of matching scarf:
Had dinner with three dear friends last night.
Bella and I went to the St. Francis service at church today to be blessed along with dozens of other people, dogs, cats, birds and a horse. Although the horse stayed outside.
Bella was knackered afterwards. Doesn’t she look it?
Bella and I went to the St. Francis service at church today to be blessed along with dozens of other people, dogs, cats, birds and a horse. Although the horse stayed outside.
Bella was knackered afterwards. Doesn’t she look it?
Our church is an incredible community. Check out our website: http://www.trinitynj.com/
About the Apple
About the Apple
The little notes about donations in Dennis’ name were on apples because that was part of the Fall theme.
Ryan and Claire
They will be home soon!!! It will be so good to see them!!
They will be home soon!!! It will be so good to see them!!
Thursday, October 2, 2008
A Gift
I have many wonderful people in my life who are very good to me. Sometimes, when I get lost in a maze of ceilings and finances and loneliness and illness, like this week, I tend to forget that.
My friend Debe in Missouri is an accomplished, innovative artist. She also has MS, but continues to express and generously share her talents.
Yesterday I was surprised by a package. And this is what was inside.
My friend Debe in Missouri is an accomplished, innovative artist. She also has MS, but continues to express and generously share her talents.
Yesterday I was surprised by a package. And this is what was inside.
The attached note says:
Sweet Marie,
A bottle of Goddess dust to help ease your pain and worries.
Gaze upon it. Remember I will think of you daily and send healing prayers.
Her kindness has literally taken my breath away.
To say ‘thank you’ feels like the most banal and inadequate response possible. So what I am called to do is to share her love and hope with anyone reading this post who also has a need for healing prayers. I know so many of you have just as many things to deal with and worry about as I do, if not more.
Even if I don’t know you, even if I don’t know what you are carrying, please know I am sending healing prayers your way and will also think of you daily.
And thank you Debe, for this treasure, for your love and for your friendship.
Sweet Marie,
A bottle of Goddess dust to help ease your pain and worries.
Gaze upon it. Remember I will think of you daily and send healing prayers.
Her kindness has literally taken my breath away.
To say ‘thank you’ feels like the most banal and inadequate response possible. So what I am called to do is to share her love and hope with anyone reading this post who also has a need for healing prayers. I know so many of you have just as many things to deal with and worry about as I do, if not more.
Even if I don’t know you, even if I don’t know what you are carrying, please know I am sending healing prayers your way and will also think of you daily.
And thank you Debe, for this treasure, for your love and for your friendship.
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