17 May 2016

Before Sugar Cubes: Introduction

Polio was a plague. One day you had a headache and an hour later you were paralyzed. How far the virus crept up your spine determined whether you could walk afterward or even breathe. Parents waited fearfully every summer to see if it would strike. One case turned up and then another. The count began to climb. The city closed the swimming pools and we all stayed home, cooped indoors, shunning other children. Summer seemed like winter then. (excerpt from A Hole in the World by Richard Rhodes)

        In 2015 the World Health Organization (WHO) reported only 74 cases of poliomyelitis worldwide. The virus that once struck the lives of hundreds of thousands each year has been all but eradicated today. Polio has been around since the beginning of recorded history, but by the 1800s polio epidemics began to appear regularly across Europe.  By 1910, these epidemics became frequent in cities with large populations, especially during the summer months when the polio virus thrived in the warm weather. Children were at greatest risk in the early years; later the virus would target older children and adolescents. Some individuals were at greater risk for contracting polio, and especially the paralytic Type I polio. For example, pregnancy heightened a woman's risk of contracting Type I polio.  The polio virus entered its victim through the mouth and flourished in the throat, before passing into the intestines and bloodstream. Because viruses can be carried to the spinal cord, they can "kill or transiently injure motor nerve cells that control skeletal muscles, causing paralysis (https://www.questia.com/article/1G1-10942759/a-new-challenge-for-former-polio-patients). The host became ill within days of exposure to the virus, beginning with high fevers, muscle stiffness and pain, followed by one of three outcomes: quick recovery (and a lifelong immunity to the virus), paralysis in the extremities (lower, or upper, or all four), or death. It is easy to see why parents were terrified of allowing their children outdoors during localized outbreaks. As children were kept isolated, the average age of polio victims rose. By 1952, one third of those affected by polio Type I were over age 15.
        Take a look at polio's growth in the United States during the first half of the 20th century:
  • 1894   Vermont epidemic    132 cases in children and adults (18 deaths from Type I polio)
  • 1907   New York City         2700 cases
  • 1916   New York City        2,000 deaths from Type I polio
  • 1916   United States           27,000 cases nationwide (6000 deaths)
  • 1949   United States           nationwide epidemic (2720 deaths)
  • 1952   United States           57,628 cases nationwide (3145 deaths & 21,269 disabled by Type I)
        The polio epidemic reached its peak between 1940 and 1952, paralyzing or killing over 500,000 people worldwide every single year. Do the math: six million victims in a twelve-year span, while science and medicine struggled to identify the cause and to develop a preventive vaccine. It would be the first philanthropic effort to find a vaccine, with millions of dollars given the the March of Dimes by millions of people in the rush to develop a vaccine against polio.

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        In 1950, my mother (Olive) graduated from Stanford University with a BS in Nursing. She married my father (Jim) that year, gave birth to my brother Paul in 1951, and bade Jim farewell as he departed for Korea where he served until May 1952. A few months after he returned from the war, my mother became pregnant with me, all the while working as a hospital nurse. Olive loved her career was extremely proud of being independent and competent.
        One weekend in August, my parents took Paul on a camping trip into the nearby mountains. On that getaway, something portentous occurred that would change the lives of everyone in our family from that day forward. "My neck hurts -- I can't turn my head," Mom said aloud. "You need to take me to the emergency room right now." She already knew the symptoms of polio, and feared the worst not only for her but for my 18-month-old brother whose age put him at great risk. Ironically, it was not Paul who contracted the virus, but Mom and me.
        For weeks Olive lay paralyzed in a San Francisco hospital, unable to move her arms. She was given prolonged doses of opiates for pain, and at one point contracted Bell's palsy in her face when a window was left open all night. Luckily, the Bell's palsy was only temporary, but it sent her into a tailspin of sorrow and self-pity.  She lay in the hospital fretting over the child she was carrying, afraid that the virus had attacked and paralyzed the baby, or that the drugs she was being given would cause permanent damage to the child's brain. She agonized over Paul. Who was watching him? Would he remember his mommy? How would she be able to ever care for him again? And the man she married, the sweet innocent country bumpkin who had gone to war at age 21, had come back a changed man. They were almost strangers now. To say nothing of her piano-playing skills that she had developed since age seven. At one point in college, she had taught piano lesson at the San Francisco Conservatory of Music. Unable to move her shoulders, arms, and fingers, her musicianship was gone, too. She had plenty of reasons to feel sadness and despair.  Meanwhile, no one brushed  her teeth regularly or thoroughly while she was in the hospital, and she couldn't brush them herself. So, her teeth became decayed. Some time in the year after she left the hospital, her upper teeth were pulled and she wore dentures for the rest of her life.
        Olive was 26 years old, with a two-year-old and a newborn that she was unable to hold. Her piano sat silent in the living room, while her toddler ran wild. Luckily, she was blessed with a wonderful husband! Jim would get up in the mornings, change the diapers, help Olive with her toilet duties, fix breakfast and feed the babies, then leave for work. Mom must have been terrified to be left alone with us until lunchtime, when Dad would rush home to repeat his tasks and rush back to work. At 4:30pm when the dayshift ended at the air base, Dad would return home and repeat once more the meals/diapers/housekeeping duties that no one else could. I marvel at his devotion to us all. His love must have driven his determination to make it all better. It would be decades before he would have the luxury of processing the horrors of his wartime experiences.
        Mom recovered. I don't know how, but she began to play the piano again. She gave birth to her third (and last) baby in 1955. I was two when John was born. By the time I was four, she was working as a nurse once more. Grit, obstreperousness, and desperation drove her to regain the use of her arms. I don't remember the process, because I was too young, but I remember that every single day of my childhood gave me a close-up view of the residual effects of polio on my mother.  Not just on her, but on Dad, Paul, me, and John. Each of us was affected by the disease. What follows is the story of how polio shaped our lives, individually and as a family.

02 April 2016

What I Know: Living with Chronic Illness

After living with the various symptoms and ever-changing treatments for autoimmune disorders, I have become an expert of sorts. Future posts to this blog will be dedicated to my friends who also juggle their energies, meds, and coping skills to managing their own chronic illnesses.

Fibromyalgia, lupus, chronic fatigue, MS, post-polio, Chrone's, psoriasis, and other autoimmune disorders have many symptoms in common: fatigue, brain fog, digestive disorders, weakness, sleep disorders, and relentless pain that migrates throughout the body and resists management. We also deal with abundant medications, advice from well-meaning friends and family, difficulty maintaining healthy relationships, and the plethora of health-related articles on what we should be doing -- advice that changes with the seasons! To say the least, it's a tight rope we walk daily. So, we tend to stick together on social media and elsewhere. Each autoimmune disorder has a variety of online support groups, including Facebook pages. I encourage everyone to respond openly to these posts and let us know which support groups have provided you with the best advice.

My husband gave me a paperback book (among other gifts) for my birthday. It's more like a magazine, entitled "Solutions for Living with Chronic Pain" (2016) from the Mayo Foundation for Medical Education and Research. I'll be referring to it in future blog posts. My intention is to include a few quotes from each of its eleven chapters, with quotes by people who have posted online. I hope this venture will benefit as many as those who read it and pass it along to others.

24 March 2016

Taking My Own Advice

        When I decided to resign my adjunct teaching position in 2015, I had no plans--period. Our home sold in November 2015, so we decided that if a move was imminent, we would move the 90 miles closer to the kids and grandkids. That seemed to make everyone happy!
        Fast-forward to March 2016: we are embedded in our new neighborhood/village. Our well-worm condo sits comfortably in a quiet enclave surrounded by pine trees full of owls, woodpeckers, and myriad other birds. Our cat Emer loves to sit at the windows and watch the birds, even making his own chirping noises.
        Recently I met a woman who is struggling with chronic illness. She's new to the game, so I've offered her some guidelines for dealing with this "business." I asked her to acknowledge her serious illnesses to her family, letting them know how very sick she is. I suggested she give herself permission to rest, to do nothing, to heal. It's going to be a long process, and she is going to travel a path that she had not planned on going down. But luckily for her, she has people to support her who have already traveled that path. Now I'm taking my own advice.

        In 1994 I resigned my teaching job, and went home to bed. I stayed in bed for the better part of six months, thinking "I'm either crazy or I'm very ill. I need to know which." That thinking took its toll on my psyche, but I had a great therapist.  And it took more than a few doctors to diagnose my initial autoimmune disorder, lupus (SLE), in January of 1995. By the end of that year, I had obtained a divorce from my first husband, ending a marriage that had long-since run its course. A year later, I fell in love with and married my sweetheart Markie, and we'll celebrate our 20-year anniversary this summer.
        What I didn't know then, and would not discover until 2016, is that the lupus was just one of several autoimmune diagnoses I'd receive over the years, none of which was entirely accurate. My symptoms appeared exactly 40 years after the polio epidemic of 1952, when my mother contracted Type I polio while carrying me. I had contracted the virus as well. By the time I was born six months later, we had both recovered from the virus. Mom went on to recover enough to live a fairly normal life, and I developed as a normal infant and toddler. But post-polio syndrome hit both my mother and me at that crucial 40-years-later point in time. Mom suffered with it from 1994-2004 when she succumbed to a stroke. I have continued to deal with the symptoms of post-polio since 1994, calling it lupus, fibromyalgia, and arthritis over the years.
        The point is this: There is life after autoimmune! But one needs a strong support system, a loving caregiver or spouse, a good primary care physician, and the honesty to say, "I'm too sick to (fill in the blank)." It's a roller coaster life: up one day and down the next. You become very selective in how you spend your energies, because once they are used up, it may take more than a few days to build them up again. I have been blessed to have a career as a teacher -- a theater teacher, at that. It has been a wonderful ride that I'm now watching from the sidelines.
        These days I do things that require little physical exertion, like visiting grandkids, lunching with my daughter and close friends, researching family history, writing stories, lots of reading, trips to the local Senior Citizen centers, baking for friends and family, and movies on Plex (thanks, Joey!). I love my life, which is full of wonderful people and loving relationships. I'm grateful that my family members and friends don't expect more from me than I am able to deliver. I'm following my own advice: admit your limitations, and give yourself permission to rest and do little Today, that is happiness!

05 March 2016

Political Correction

        This blog is generally a place for storytelling about my experiences and those of my guests. However, this issue demands acknowledgement. It cannot be denied that there is a disconnect between my generation (Classes of 1965-1975) and those who came later. We had our own version of political correctness: no swearing on tv; no using the n-word, the b-word, and the f-word in real life; no littering; road rage didn't exist; calling our elders Mr. and Mrs.; the teacher was always right; we wrote thank you letters for gifts received; and so forth. We knew the euphemisms for Latinos, Africans, Irish, Italians, Portuguese, Asians, but we didn't use them because our friends came from these circles of people.
        So, I'm just speechless after reading this recent article about a party on a college campus. I have no words to even begin to express my bafflement over this event. Please, readers, let me know where the disconnect begins between political correctness and absurdity. I promise to read your responses deeply and considerately. Read on...