My Bedroom is on the First Floor

My day started in a rush as the boys and I struggled to get to the YMCA on time. I committed to taking two classes today which I was certain I would have no trouble completing. However, it took me only 15 minutes of attempted squats and bending at the knee instead of leaping into the air to realize I was in over my head. I would not be attending the second class! I normally do not care what people think about my physical ability or lack of physical ability. For some reason, today all I could think about was the arrogance and stupidity in words spoken to me about my illness. A few months ago, a well-intentioned pastor told me that thinking about my illness prevents me from moving past it. I almost sighed out loud as I picked up the barbell and raised it over my head.  I noticed the man in front of me was lifting twice as much weight with one prosthetic leg.  I don’t think anyone would ever dare tell him thinking about his injury prevents him from moving past it. He has to think about it every time he goes up a flight of stairs, tries a new exercise routine, and when the ache in his leg rubbing into the prostheses reminds him that he isn't allowed to attempt the second class as we had planned.

I have lived with the foolishness of man diagnosing my medical condition and my mental health when I have to make allowances for my medical condition. I am questioned, because unlike the man with one leg, or the woman who is in a wheelchair, I do not have the appearance of someone with a disability. Still, I have a very real and crippling disability. Please do not get me wrong. It isn't that I do not have evidence. The evidence is in the crutches, braces, and cane that are stored away. The evidence is in the referral for a special brace to keep my “drop foot” from dropping.  The evidence is in how many times a week I fall from my legs deciding they have had enough for the day.  I don’t fault this pastor man for his lack of compassion towards me. Ignorance and deficits in humanity have no gender or denomination.

A few years ago, I went to see a new neurologist hoping he could provide something other than steroids and narcotics to treat me. He thought I was faking the reflex, mobility, and strength test. He told me he would have to do an EMG to confirm my polio diagnosis.  This was a nice way of saying he was going to place hundreds of needles into my legs, buttocks, and spine to make sure I was not a liar. At the end of the test, he concurs that the damage to my body is indicative with the diagnosis of polio and latent post-polio syndrome. Wow, I never would have guessed that, doctor doesn't know a thing about polio.  He wanted to do my arms next because now all of a sudden he admitted finding weakness and carpal tunnel symptoms in my arms, wrists, and hands.  I refused any further needles to my body. His prognosis? He tells me I need to avoid all exercise including walking for exercise without the help of a physical therapist. He gives me a referral for medical equipment, high doses of Prednisone (surprise), and Demerol (yummo!).   “I think we need to look into assistive devices.” At this point, I am starting to feel dizzy at the sound of braces again and then a wheelchair. My legs are still shaking from the trauma of the EEG and PPS fatigue has started to settle in.  I take the handful of prescriptions and referrals tossing them into the car already knowing I do not plan to do anything he suggested. I made the mistake of bringing my mother with me so I wouldn't have to endure this alone. She has slumped herself into the passenger side wailing, “Why does this always have to happen to me!!” So reminiscent of my childhood.  I am trying to comfort and reassure HER that everything will be okay. Car started. Legs still shaking.  Wheelchair echoing in my head. Surprisingly, I lost control of the car and ran into a light pole a block away from the clinic and totaled our van.  I attempted to explain to the police officer why I am slurring my words.  My mother is crying louder than before. Thankfully, my best friend Lizzy, arrives in her van and explains my situation before I have to take a sobriety test.  Ah, a witness to confirm that I am not drunk nor am I crazy. Thankfully, my boys were with her when I stopped ignoring my illness and ran off the road.

The neurologist before this one told me my high prolactin levels meant I had thyroid cancer.  I believed him. It was a very hard three months. Later, I learned polio causes high prolactin levels. And another doctor wanted to remove part of my intestine because of my intestinal problems.  Intestinal problems are part of living with post-polio syndrome.  I have learned that most neurologists or other doctors  know nothing about polio. In fact, I went to an ortho once who spent an hour taking notes, x-rays, and other tests. I really thought she was going to help me.  She told me exercise was not advisable, suggested shots I could not afford, and then asked me if she could interview me because she had never met someone with polio. I almost offered to give her my autograph. The only doctor I see now is an amazing family practice doctor who told me my intestine didn't need to be removed because polio causes them to kink and removal will make my problem much worse.  He tells me to exercise in moderation and rest when I am tired.  He said to avoid the devices as long as I can and to be willing to see a neurologist when it becomes necessary.  Freaking genius!!

I continue to exercise, dance, and pull out a cane more often than I care to admit. Sometimes the pain is so unbearable that I get lost coming home from work.  My youngest son has to remind me which way is home just a few blocks away from his school/my work.  It isn't easy for me to do things after work at times.  The days I choose to go to the YMCA, after school event,  or other activity normally requires me to sit in the recliner for hours after or makes it certain that I will be hurting for days to come. I am sure people think I am moody. No, I am not moody.  I just hurt.  People with post-polio syndrome will sometimes slur their words, stutter, misuse words, or even appear drunk because of pain and fatigue.  At one time, I didn't tell anyone about my illness.  It was almost as if I had an STD that needed to be hidden. Be ashamed.  But then I got tired of being made fun of when I had trouble speaking or being called “clumsy” because I fell all the time. Amazingly enough, there are people that still make fun of me when I use the wrong word or stumble over invisible obstacles even after they know about my illness.  I have learned to overlook their adolescent behavior realizing that saying polio nowadays is like saying Bubonic Plague.  You have no idea how much pain I am in at the moment I misuse a word.  Imagine a “Charlie Horse” that sticks and you can’t work it out.  PPS has been described as having the flu and being pregnant, while trying to run a marathon. No, I am not exaggerating. The truth is I often make things seem not as bad as they are.  I am blessed. Most people with scar tissue in their lungs have trouble breathing. I only have trouble breathing sometimes.  You should read the stories of other people with my same illness. They are in wheelchairs and on disability. I can work.  Even when my illness has put me into a weak and debilitated condition, I still normally do the work of several employees. I am one of the first people to arrive at work and usually there most weekends. I have always been that kind of employee, student, and friend.  I have never received a negative performance review in my life. Considering my medical condition, this is a miracle. I will work as hard as I can and help as many as I can for as long as I can.  Yes, I am bragging and I have earned the right to brag. But I brag not in myself, but in the grace that God has given to me.

I probably should just try to move past my polio as was once suggested to me.  The day I became ill I tried to do just that very thing. It was warm and sunny; however, I recall waking up feeling very cold. I couldn't get warm enough!  I tried to find someone to help me get warm. My grandmother was busy in the kitchen as usual.  I tried to get her attention by pulling on the apron she always wore. I stood leaning against her for a moment taking in the scent of corn masa and old lady perfume.  I could feel the warmth coming from the stove as she flipped the corn tortillas on the heavy black comal.  Soon she stepped away from me to tend to the pot of beans on the second stove behind her. Her absence left me feeling cold again. Traditional homes in Mexico have a large uncovered patio at the center. My grandparent’s home had three stories with a center staircase open to the sky as well. I could feel the sunlight on my face as I exited the kitchen door. I stood at the bottom of the stairs starting to feel not so cold. As I climbed each step, I could feel the sunlight warmer on my skin. One, two, three, fall,  four, fall, and five steps. Soon, I found myself at the top of the first flight of steps. The towels my grandmother had hung across the balcony that morning were already dry. They swung back and forth with the breeze’s encouragement. I found a place to rest underneath them and closed my eyes. This is the first moment of real pain that I can remember. I felt as if my entire body was scourging with the fire pouring into my legs. Ah, but at least I was no longer cold. I am not sure how long I rested on that concrete floor. I only remember that when I tried to get up, I fell back down to the floor. I tried a few more times and each time my legs seemed to become heavier. I finally gave up.  When I heard my mother’s voice calling my name, I was unable to voice a response. I felt as if I had swallowed sand down my throat with some particles drifting into my lungs, and the rest settling into my legs.

The physicians in Mexico told my parents I had muscular dystrophy. My father said that was,  “Chicken Shit!” in addition to a few other colorful expletives. As a World War II veteran, he lacked sensitivity training 101.  Mama was almost nine-months-pregnant with my little sister when my father packed us up to come back to the states. The doctors at Bergstrom Air Force Base told my parents I had suffered from paralytic polio with paralysis to my legs. They were told I would probably not walk again. I did walk, though. In elementary school, the Bergstrom Air Force Base doctors gave us a medical note so I would not have to attend physical education. This meant that I went to the gym with my classmates, but was expected to just sit and watch. I can still remember grabbing the jump rope and attempting to jump with assistive devices.  Jump, fall, jump, fall, fall, fall. By the fifth grade, I no longer gave the medical excuse to the school. I refused to take assistive devices to school. I fell all the time. I fell more often than I walked. Throwing away the doctors’ notes meant that I no longer had the protection of being medically exempt as well. I was expected to attempt all physical activity just like everyone else. This was preferable, at least in my opinion, to being exempt from being noticed.

I saw the neurologists at Bergstrom Air Force Base all the time at first. When I was almost twelve, my father died, making the doctors’ visits less and less. However, one of those BAFB doctors recognized the neglect in my life and referred me to the agency that was called, “the Crippled Children’s Services”.  After more needles being stabbed into my legs, butt, and back; the doctors told us that my legs continued to deteriorate. I vividly remember those two neurologists scolding my mother harshly for the severity of my feet and toe deformity. I don’t remember all the details after that except words like poor blood circulation, surgery, braces, and wheel chair were said…. again.

My life has been spent taking off assistive devices, putting them back on, hiding the cane, pulling it back out, refusing the steroids and then taking them so I can walk. Pretending I don’t have polio and then finally realizing my polio is no different than any other illness. There is no shame. Even when people like pastor have no idea what you were talking about  tell me I am choosing to hold on to polio.  I am not refusing to move past my polio. I move past it every single day of my life.  I encourage groups of people at my job to do the Insanity workout during summer or join me at the YMCA.  I readily and happily move past it beyond logic and medical advice. Then there are days like today, when the cramping of both my legs and the trembling and weakness, refuse to let me move past it. Tonight, I am reclined in this chair with a glass of wine. Four ounces of wine seems like a better choice to me than Prednisone and Demerol.  As a hardcore Christian who doesn't want to offend anyone, resorting to the occasional glass of wine was difficult. But, it helps most of the time.  Judge me if it makes you feel holy.  Holy is my sweet co-worker with the disabling arthritic condition who stays late and comes in early and always has a smile on her face. Holy is coming in to work on the weekends to catch up other people's work when your job is caught up. Holy is the man with a lung condition who sees it as his mission to encourage others (and he does!). Holy is serving.  I pray you never have to walk in my shoes. Today, I had to tell Isaiah that we couldn't go swimming and I couldn't walk down the street with him to see if his friend was home. Days like today mean he and I are both stuck at home.  

So, I take a deep breath.  I resist the urge to become bitter over the prejudices and cruelty of others who think they know my situation. It is hard. Some days you just want to punch people in the face. Then I recall I should be in a wheelchair.  I think of the man without a leg. I think of my own son whose life is dependent on the little insulin pump on his abdomen. I think of the little boy with leukemia and my co-worker with cystic fibrosis.  My situation isn't so bad.  I thank God for my legs. I thank God that I am still able to exercise most days. I am able to chase Isaiah through the house and over his bed.  I may not be able to make it up the stairs very often, but that is why my bedroom is on the first floor.