“Why Can’t You Get a Flu Shot?”

Posted on March 29, 2018 by pfonseli

“Maybe you can’t have a live vaccine? Are dead vaccines okay?” “Does the virus stay in your system?” “Can I catch what you have?” “You can get this again?!” “Are you sure you are pronouncing this correctly, it’s not spelled that way?” “What makes you think this is what you had?” These are just a few questions I was asked.

Yes, I am pronouncing Guillain-Barre correctly. I heard the many doctors and nurses pronounce the name before I knew the spelling. It is pronounced: “gee-YAH-buh-RAY”. In the weeks I was in ICU, many doctors came through the unit but when the Centers for Disease Control verified the diagnosis of West Nile Virus, it confirmed the preceding cause of Guillain-Barre Syndrome. The doctors were relieved to know they had been on the correct track with my treatment.

The warning of never getting another vaccination was repeated often by my doctors although new nurses clutching their checklists tried to administer the flu vaccine while I was in ICU, acute and subacute facilities. In the past, vaccines have caused this syndrome in some people. Live or dead vaccines, it doesn’t make a difference. Guillain-Barre (GBS) is not a virus or bacteria. Vaccines rally the immune system to attack the small amount of virus introduced to your system to create an immunity to a virus. GBS is a disorder which, causes the body’s immune system to switch into overdrive in response to a perceived threat. Rogue antibodies attack in an overreaction to a threat by damaging the myelin sheath covering the nerves. Myelin is like the insulation covering on an electrical wire. When this insulation is damaged, shorts are created cutting off the flow of messages from the brain to the muscles. Muscles go slack awaiting messages, resulting in weakness and paralysis from these short circuits. The longest message routes through the nerves are to the toes and feet. The first feelings can be felt with tingling and loss of control as the damage travels upwards through the core toward the diaphragm. My doctors asked me what this sensation felt like, this was my description: It felt as if my skin was encased in plastic tubing with water running up and down my body through the streams of tubes. The sensation of plastic covering my skin remained and as I began to get movement, I described it as if the plastic was being peeled away. When paralysis proceeds up to the diaphragm it is difficult to breathe to the point of requiring intubation. If the nerve damage proceeds to the heart and lungs which are also muscles then, that is the end.

What causes GBS? No one knows what causes it or why it attacks some people and not others. Anyone can be affected, young and old; children and adults in any region of the world. The most recent GBS outbreak was due to the Zika infections in Brazil preceding and during the 2016 Summer Olympics. News stories concentrated on the birth defects resulting from Zika but, the Brazilian medical community were inundated by cases of GBS following Zika infections. Their hospitals were overwhelmed with GBS patients. With the prospect the arrival of a world of athletes and spectators, doctors’ warnings did not make the news feed. It is theorized, the building of stadiums in the areas of untouched rainforest disturbed the balance of mosquito interaction with the population.

Although the exact cause of Guillain-Barre Syndrome is unknown, often it is preceded by an infectious illness such as a respiratory infection or the stomach flu. So, no you can’t catch GBS from someone with it but, under certain circumstances, you may be susceptible to developing this syndrome. Because my immune system has proven it overreacts to stimulus. I must be wary of anything which could launch another attack against me. My doctors had a long list of things to avoid with their main emphasis on no vaccines, no bug bites, no unnecessary surgical procedures, no sushi or raw fish, and no shellfish. The doctors’ list concluded with this warning, “If you get this again, we will not be able to save you next time.” This bulwark of the sincerity of this doctor’s statement determines my choices as I navigate in my new reality. Oars

Life on Wheels

Posted on March 28, 2018 by pfonseli

Austin Healy Racing my white with red leather interior 1967 Austin Healey 3000 Mark III down isolated farm and off-season, deserted, beach roads was glorious. I loved speeding (Is there a statute of limitation on speeding tickets because 120mph to 150mph was a perfect cruising speed?) with the top down, bundled up with the heat of the double carburetor feeding six cylinders of power warming my feet. Just skimming above the road, I could almost touch it. This is the only car I truly loved. Then, that golden moment when the Jaguar pulled up beside me at a red light on a well-traveled, local highway. In true classic drama, first I saw the hood ornament hesitate in my peripheral view before the driver of a British racing green Jaguar pulled up next to me. He made the obligatory scan of my Healy, turned up the corner of his lips in an “I dare you” sort of fashion and nodded in approval while he revved his engine. I gave him an almost unperceivable nod and whispered to my dashboard, “Let’s skin this cat.” No revving noise or bluster from us, as from our competition beside us, just quiet anticipation of a green light. Red went to green. Six cylinders working off twin carburetors on a small frame with a hundred pound driver was no match off the line. A flip of a toggle switch into overdrive ended the competition. The Jaguar was still in my rearview mirror as I approached the traffic ahead. When he came along beside me again, he acknowledged the defeat with a smile and a wave. Never underestimate the power contained in a small package.

Feeling the adrenaline rush through your body as set your vehicle up perfectly between the staging lights. Once your opponent and you are “staged”, the Christmas tree lights blink down to green and you are off! Leave too soon and the red light comes on; race over! You are disqualified. As in any competition, it is about power with control. On the local drag race track, I won my division. But, it wasn’t in a fast sports cars, it was with a long body van. Anticlimactic, huh? It was fun though!

Riding on the back of one our Harleys (I searched for a model low and light enough for me to handle. I voiced my feminist outrage to several salesmen. By the time Harley Davidson began making cycles for 5’2” women, I had kids, bills and responsibilities. A motorcycle was no longer within my grasp. Yeah, they sold tight shirts and earrings but not a thought about females as riders.), riding a Vespa through the hills of Greece, rode my moped from barn to beach, a Jeep without doors or windshields, and bicycling everywhere, I loved my wheels! The faster, the better.

Now, I depend on wheels to get into the bathroom. Different wheels take me into the shower. Another set of wheels are for leaving the house. Another set of wheels for my work desk. Steps are the barriers which keep me out! Ramps and lifts allow me to access the rest of the world I used to take for granted. It is amazing the amount of establishments from doctors to restaurants without handicap access. Worse is, the claim to have access where upon arrival to discover access is a delivery entrance which I must be carried over a portion through a warehouse, kitchen, etc. People are putout having to move furniture or rearrange a display while patrons stare to determine the source of the commotion.

The type wheelchair elicits different reactions. Yes, I would never have imagined how strangers feel compelled to voice their assumptions and opinions about me. My memory does not recall this type of outward criticism prior to my illness. With six and half years in a wheelchair experience, I believe it has to do with power and weakness. Is this a primal response? Or, are there just more brutish people with egoistic attitudes our society has cultivated into a “us and them” mindset? When I was too weak to sit up on my own, I used a motorized wheelchair. When out in public (mostly stores), people would stare me down, make huffing noises because I was in their way (I did take up more personal space in a wheelchair than if I was standing.), cut me off and tell me how I should be walking as they briskly fled away from me. This wasn’t a singular occurrence. This happened nearly every time I went out. Other than work, going to a box store was one of the few weekly events out for me and this was what I encountered there. I stopped going for a while until I rationalized I should pity those terrible people because it was on them and not me.

After several years, I gained enough strength to get an ultralight manual wheelchair (the sports car of wheelchairs). It was as if a switch was flipped! Immediately, the side eyes were gone, frowns changed into sympathetic grins accompanied with words of encouragement or silence. . The only variable to change was the type of wheelchair. The manual wheelchair gave the impression that, I was handicapped not, fat and lazy!

Many people still ignore me. I understand they are at loss of what to say with their best response is to avoid eye contact. It is interesting to watch people give me an exceedingly wide berth as if I may careen out of control at any moment. At work, there is a person who hugs the wall of eight foot wide hallway each time I pass her. The wheelchair also elicits the impression of some that I am mentally diminished, hard of hearing or speaking in condescending tones as if I am a small child.

Remember being among adults as a four or five year old? Weaving through and seeing only legs, looking up to see the faces of the owners of those legs? Sit in a wheelchair for a day and relive the experience. I stay away from large crowds. Concerts where people are standing offers me a view of everyone’s butts. Wheelchairs offer limited views of your surroundings; sometimes I have to remind myself to look up.

My friends took up a collection to fund the deductible the insurance company would pay to allow me to get a new wheelchair. The change to the ultralight wheelchair was an emotional and physical transformation. It took so much more core strength to just, move. Maneuvering over bumps and thresholds, mastering skills to transfer into chairs, restaurant booths and cars! Being free of the huge, double battery six wheeler scared me but was also freeing. The large armrests were gone; I had to keep myself balanced. Powering through obstacles changed to learning how to wheelie over or around them. When the machine was stopped, it was stationary; scissor brakes are double checked to remain motionless. Tire pressure and avoiding running over sharp objects replaced maintenance free solid tires. It is all worth it. I take up a smaller footprint, I can pivot and did I mention? I can ride in the front seat of a car.

Because of the size and weight of a motorized wheelchair, it does not travel well. While I was in the sub acute rehab center, my husband purchased a used van with a wheelchair lift. At the time, I hated the idea because in my mind, I would be up and walking in a year maybe two at worse. I am glad he didn’t listen to me. I rode in the back of the van, holding on to seat belts on every turn for years. On one occasion, my son and his girlfriend were driving the van with me in the back. My son was driving at his usual pace but when taking corners; I had to hold on so tight to prevent my head from hitting the window next to me. His girlfriend quickly became aware of my stress and asked my son to slow down. Although he slowed a bit, I was still swaying in the back. After the girlfriend’s several requests to slow down, she changed tactics. She told him, because my center of gravity in the wheelchair was higher than theirs in the car seats, the force centrifugal force in taking corners was difficult for me to overcome. He got it immediately and slowed down. Did I mention? They are both engineers. Sitting so high in the van felt like I was in a fishbowl. Drivers and passengers in other cars would stare in to see why the person in the back is not sitting in a seat at the normal level. Another problem with the wheelchair lift on the van was the amount of space needed to lower the ramp, load and raise was difficult to find. We had a car run over the end of my lift just as I was about to approach it. The driver saw all that space between the sidewalk and the lift, thought he could fit between the two, never imagining a large motorized wheelchair would be loaded onto it. The driver never stopped; he achieved his goal of getting past another car. Luckily, just the bottom of the lift’s ramp got bent a little, the self absorbed driver didn’t take out the mechanism and he didn’t hit me.

An ultralight wheelchair meant I could move to the front seat of the car! Well, here is something I never thought of: objects come at you very fast in the front seat. For years, I was either lying still, going as fast as my motorized wheelchair would go or sitting high up in the back of a van with a small perspective of the road ahead. The first time in the front seat was terrifying. I gripped the armrests in fear of each car hitting us. The cars next to us were too close; the cars coming towards us seemed to be coming at us. This was just driving around town at speeds no more than forty miles per hour. It took a long time to acclimate to this new perspective. Traveling with an ultralight was quicker and easier. After transferring into the car with a slide board, even my friends could lift the wheelchair into the back of the car and we were on our way!

In 2015, we decided to visit my son and his family in the upper peninsula of Michigan for Thanksgiving. We planned drive for two days with one motel stop. I was fine until we got into traffic surrounded by tractor trailers. From my vantage point in our compact car, all I saw were tires. Doubled up tires, on multiple axles moving buildings on the road next to me. On the edges of the road were remnants of failed tires, tire marks running off the roads, bits of glass and plastic evidence of previous disasters. Claustrophobic, I imagined the low pressure of the tires nearest me with their loads leaning over our small car. I startled easily trying not to gasp at each perceived threat so as not to alarm my husband while driving. By the time we reached Pennsylvania with double and triple trailers heaving up the hills and speeding down the other side, I rode with my eyes closed and my fists clenched. Ohio was just as bad but at least it was flat. The dreaded drive back was remedied by my son who downloaded mediation music onto my phone and purchased headphones for my trip back. Here’s the good news, we’ve drove back to Michigan again and I am cured!

Why don’t I get a handicapped driver’s license and drive myself? This is a dilemma with DMV. The DMV has requirements to obtain a handicap license but no procedures to reverse it. The requirements for a handicap license are expensive. I was quoted a price for the required driver training through a private party at a cost in excess of $2000.00 on their schedule and location. A written and road test is required. The hand controls at the cheapest which consist of two sticks and Velcro cost about $1500.00, with more technical controls reaching up to $5000.00. The insurance company requires I pay equal car insurance although I am not driving because I still possess a legit driver’s license. My right leg is almost up to the task and I have a hope to drive again someday. If acquiring a handicap license is this expensive and difficult, I can only imagine it would be almost impossible to regain my previous driving rights.

Take The Chance To Dance

Posted on April 4, 2016 by pfonseli

My pregnancy with my son was spent on strict bed rest lying on my left side with very little movement. Because of this, as a newborn, it was not surprising he startled and cried with each sway or step. I loaded him into a sling and we danced constantly from that moment forward. As a teenager, we would tango and jitterbug in the kitchen while clearing away dinner dishes. Neither of us could pass up the chance to dance!

“The moment in between what you once were, and who you are now becoming, is where the dance of life really takes place.” – Barbara de Angelis

Living in Steps
Dancing barefoot airily in warm sand,
Dancing flip flops slap on wood boardwalk,
Dancing sneakers stomp on cool pavement,
Dancing heels reflect on a polished dance floor,
Dancing slippers nimble on kitchen tiles,
Dancing shoes rhythmic on balcony marble. – PF

My Closet
Shoes lie empty and waiting,
Ski boots layered in dust,
Surf fins dry rotting,
Skates hang as its blades rust. – PF

“The dance is a poem of which each movement is a word.” – Mata Hari

Movement
Thumping over sidewalks cracks my wheels bounce and spin,
Slogging through carpet seas my wheels slowly spin,
Gliding over marble tiles my wheels rapidly spin,
Slipping down icy ramps my wheels do not spin,
Creaking noises over wood floors my wheels cautiously spin,
Entering through elevator doors my wheels dip and spin. – PF

The night was a success! Students and parents had a wonderful evening of fun, good food and dancing. The hour was getting late. The wait staff was preparing to end their shift. This party was coming to an end at the banquet hall nuzzled against a small marina with luxury yachts lounging in their slips.
I moved from table to table clearing our decorations from the banquet tables. I was a co-host of this dinner dance celebrating the end of a successful year for our local high school drama club. As the last of the guests were preparing to leave, parents and students gathered talking in small groups. The DJ kept the music playing while we packed boxes of flowers and gifts to leave the hall as we found it. While I was packing away flower vases from tables, my son tapped me on the shoulder. He bowed, reached out his hand and asked me to dance. The dance floor was empty as he guided me out to the center of the floor. It was the most memorable dance of my life. Only the two of us, moving effortlessly across the floor over the river shimmering with moonlight. Yes, I dropped what I was doing and DANCED!

My Feet
Feet very soft and tender,
Feet motionless under the chair,
Feet waiting for muscles to act,
Feet with treasured memories. ~ PF

What Works For Me

Posted on August 15, 2014 by pfonseli

I hadn’t realized how Hurricane Sandy affected me. I thought I had sailed through the chaos unscathed, considered myself quite lucky. But, six months later, I had gained a lot of weight. After all, I rationalized that, I deserved to pamper myself with ice cream, cake and cookies. I was quite fearful and was still crying at the drop of a hat and needed comfort food. I think I was clinically depressed.

I was getting huge and worse, my progress was at a plateau. I was withdrawing more and more. I had to do something! A friend suggested a book about controlling blood sugar through diet and exercise. Although, the book pertained to diabetes, it made a lot sense regarding my efforts to re-grow the myelin on my nerves. It gave me a direction. Immediately, I swore off all processed foods, sugar, juices, sodas, and white and whole wheat flour. I bought chia seeds, nuts, quinoa, flaxseed meal, berries, steel cut oatmeal and stevia sweetener. I concentrated on what I should eat, not what I shouldn’t eat. Concentrating on a high protein and complex carb diet, I began losing weight immediately. But the amazing element was: my neural pathways were connecting at a greater pace. I was building muscle faster and stronger. My physical therapist noticed the change at the onset, asking me what I had done to make such a noticeable change in my recovery. I bumped up the amount of fish oil I was taking, added a time released B-12, and tripled the dose of vitamin C and water, water, water. A year and a half later, it is still working for me. My left leg which several doctors told me may never again work – is awake! The myelin is growing back and I am concentrating on strengthening the muscles as they begin to neural fire. For the past four years, these muscles did not get the message to move and they are like wet linguini but, the muscles are there and getting stronger. For me, this was an immense turning point in my recovery.

During the months at the sub-acute facility, one of my physical therapists introduced me to Russian stim. This is a high frequency electrical charge which is administered by electrodes to my muscles. The electrical charge makes my muscles contract a bit. This is not the tens stim which is used for pain; this is much stronger. We started out using the stim at the facility at its maximum strength on my legs. After I left the sub-acute, a dear friend gave me a smaller, portable version which I continue to use. My current pt advises me where to place the electrodes to benefit the area I am currently concentrating on. I have used it on my back and gluts as well. It is easy to stim while watching tv and I think it has helped.

One of the other best suggestions that I followed through on, was to get a good physiatrist. At some point, I realized I wasn’t necessarily a sick person but, a recovering person. I didn’t need a neurologist who shook his head in verification of Guillain Barre. I knew what I had. I needed people to help me get stronger. I needed someone to get me the correct braces and wheelchair, work with my pt to move me to the next stage in gaining strength. I switched my mindset from victim to athlete. This sport required me to focus on obtaining goals every day, every week, etc. I taught myself to mediate in order to relieve the stress during my plateaus and renew my priorities.

I left the hospital with a device to blow into (it has a long complicated name, I call it something else), moving a little ball to strengthen my lungs. Well, it was gathering a lot of dust and most of the time, I couldn’t tell you where it was. My pt kept urging me to get it out and USE it. I hate that thing. Last Christmas, I asked for an inexpensive flute. I am not trained to play the flute but the fingering charts are on the internet as well as enough sheet music to keep me satisfied. In playing the flute, I must sit up and use my lungs. This is not about the music for me; it has certainly helped my trunk strengthening. Although it is hard to hold up that flute and get out those notes, it is more fun than that contraption the hospital made me take home.

After my arms were paralyzed and my hands were just waking up, my fingers were too shaky to type on the keyboard of the computer but, against all logic, I could draw. It wasn’t great but, for some reason my hand with a pencil in it made it steady. The more I drew the better and easier it got. Several months later, I had complete control of my arms, hands and fingers. I have always painted with oils but when I got sick, I was advised by several very knowledgeable people to give them up. I had painted with acrylics before and knew I hated them. I never painted with watercolor and didn’t know how. I fought with both these mediums until I am finally getting more comfortable with them. The “Daisies” painting was my first success with painting with acrylics. This is a large painting which made me sit up, stretch and reach up – it was fun therapy. The white of the petals are washed out this photo, there is actually more depth in the original and I learned to “like” acrylics.

The main theme of this entry is, to keep working at this. I have been told too many times by too many “professionals” that, most people with Guillain Barre as bad as I have it, give up. Give up?! Oh yeah, what then? Hope I don’t get worse? Or, should I just sit around and wait to die? Yes, I hate it that, I can no longer run on the beach or go skiing or walk up steps. I need to use what I have at the moment, try to do something I didn’t think I could do, learn new things and be flexible. This is a long, hard struggle but, what seemed impossible to accomplish last year is easy this year. In the beginning, I couldn’t wait to be able to go to the bathroom on my own; it seemed almost unachievable. Now, I can do that with ease plus vacuum the house, do laundry and the dishes, cook and take care of myself for the most part. Be creative; learn something new and reinvent a new you.

“Friends are angels who lift our feet when our own wings have trouble remembering how to fly.”

Posted on April 16, 2014 by pfonseli

Whispering Angels, Agostino Carracci

Someone once asked me how long I knew one of my best friends. I thought for a while then replied, “I remember standing on my tippy toes on the fender of a baby carriage and pulling myself up over the edge to catch a glimpse of the new baby girl who had just arrived at our neighbor’s house.” Now, this is a long time friend.
I met another of my best friends when I attended a Cub Scout organizational meeting one summer afternoon. I was trying to get my youngest son involved in a troop outside of our own town. Not knowing anyone, I felt compelled to recite my resume of scouting experience and our family statistics. I was volunteering to be an assistant den leader. Two Cub Scout leaders announced that my son and I would fit nicely into their dens. I listened in amazement as the two leaders set out their cases as to why my son and I should belong in each of their dens. After a couple of minutes, it was settled and we were chosen. First, we were co-leaders and now, we are best friends. What a tremendous loss it would be if, she had not chosen me.
Old or new friends, by chance or choice they are such a precious part of my life. I am blessed to have so many wonderful friends and they are a part of my survival and recovery. My friends set up a schedule to ensure I was not alone while I slept in dreamtime. They cleaned me, adjusted and suctioned my breathing tubes, ensured I was turned in the bed to prevent sores, listened to doctors, urged nurses, fought for me and encouraged me to live. Beyond the hospital, they fed my family and when I returned home for over a year they brought meals to the house. When I awoke from dreamtime, I could not talk because I was intubated and was using American Sign Language to communicate. In my foggy minded state with partially paralyzed arms and hands, I could not understand why they couldn’t understand me. They could sense my frustration and tried to learn sign language – what a wonderful act of love.

New World Awakening

Posted on January 26, 2013 by pfonseli

I remember September 24, 2010. My vision was blurry and my eyelids felt heavy as I tried to comprehend the date written on the board at the foot of my bed. It was a fight to keep my eyes open enough to try to make sense of my surroundings; I kept sliding back into a heavy sleep. With each awakening, I could distinguish more objects during these lengthening periods of semi consciousness. Why am I in this bed? Where am I? What was that whoosing sound? What is in my mouth? My teeth are clenched on something. I can’t move! Where are my arms and why can’t I move? A person came into view, took a look at me and ran out of sight telling someone, “she’s awake.” Then I slid back to sleep. Shortly after, I opened my eyes to see many people I didn’t know who were repeatedly reassuring me I was alright. You know, when a person reassures you, “it’s alright” – it’s not. This time I stayed awake long enough for the doctor to explain this alien world I woke up to. I found my right arm; it wasn’t moving the way I expected it to and it was tied to the bed with a cloth. The doctor untied it and proceeded to ask me to move various parts of my body. Nothing worked but, I could feel his touch. He spent most the exam focused on my feet. Normally, we are all used to being able to think about moving and instantly having muscles and nerves respond. It is strange and terrifying to have my body ignore my commands. This would be just the beginning of my complete loss of self determination. Later, when I was able to talk, I explained the feeling to my neurologist, of my body being encased in plastic layers with the sensation of water constantly running between the layers. Even though I do not have the same sensation now, my toes feel as if the plastic is still on them. The plastic feeling recedes as I gain movement in my feet and toes.

While I thought I was unconscious for seventeen days, I was told I was often awake and talking. Propofol is an amnesiac and a truth serum. Before the Guillain Barre affected my diaphragm and breathing, I was doing a lot of talking. As the nurse would hang the white liquid into my IV, one friend told me, soon after we were laughing. I was told, I am very funny when drugged. Can you imagine not knowing what you said to whom for seventeen days? Was I unkind? Did I reveal family secrets? I used to have Top Secret clearance in my prior job with the government, did I reveal anything I swore I would never tell? The good news is: my friends still like me, my family haven’t disowned me, the hospital personnel still took good care of me and no diplomatic revelations made the headlines.

The Buzz and The Bite

Posted on November 25, 2012 by pfonseli

A naturalist conducting research in the rain forests of Central America was asked about the deadly dangers of living in an environment filled with jaguars, poisonous snakes, and pumas. Standing outside his jungle abode, the naturalist explained his concerns, it wasn’t the obvious large predators prowling around his camp; the most dangerous predators were the ones he didn’t see – the mosquitoes. They were the most lethal entities in his environment.

Beware of the hypodermics with wings, each one with the possibility of carrying illness or death from West Nile virus or dengue fever, or malaria, or encephalitis. This year’s outbreak of the West Nile Virus with 5,207 cases resulting in 234 deaths so far this year is proof this element of the jungle is now a part of our neighborhoods. It is possible you were bitten by a mosquito with West Nile virus but, your immune system fought it off. Have you ever felt like you were on the verge of a flu-like fatigue in August or September? Did you attribute it to the fast pace of summer activities or the start of a cold? Since West Nile virus has been reported in every state in the US except Hawaii and Alaska, as well as, several provinces in Canada, it is likely you may have dodged an epidemiological bullet.

Stress can be a factor as to whether the body’s immune system can fight off this invasion. In August of 2010, I was assaulted with a huge amount of physical and emotional stress. I was barely able to stand up against my life’s travails; a mosquito pushed me over the edge.

After two weeks of strenuous labor, the house I loved was empty and clean, ready for a new owner. I spent the final couple of minutes standing at the end of what would be someone else’s driveway, talking to a person who would soon be my ex-neighbor. It was about 6pm on August 31^st, when we were attacked by a swarm of aggressive mosquitoes. The air was calm as our farewells were interrupted by the flailing of arms and hands trying to ward off our attackers. My neighbor retreated into her house while I bolted for my car. I drove off in tears unaware of the foreign invader I now carried would turn my life into a living hell.

By Labor Day weekend my exhaustion was visually apparent while I warned those around me to keep their distance because I must be on the verge of a terrible cold or flu. I remember the feeling of huge weights attached to my feet as I struggled to lift them one at a time, up each step of the stairs of the beach club to arrive at my locker. It took great effort to walk in the sand back to my beach chair which I collapsed into. I remember sitting in my chair when, I suddenly sensed floating above myself being able to look down at me, my legs tanned from the sun of the long summer stretched out on the sand contrasted with the white cover up draped onto my thighs. A women’s voice spoke from above and behind me saying these words, “say good-bye to those lovely legs.” I would hear this voice again not with a warning but, offering me a choice.

The next day, my schedule for September 7th included an early walk with my best friend, a quick lunch followed by a graphic design class at a local college. I awoke and went to the bathroom with each step an effort, collapsing back into bed. I called my friend to let her know I had the flu, informing her I couldn’t walk with her that morning, with the warning I must be contagious and to keep her distance. Being a great, best friend she ignored me, and within an hour she was walking down the hallway to my bedroom carrying grocery bags with containers of chicken soup, crackers and the necessities to provide flu relief. She stopped, setting down the bags before she entered my room. I could see the concern spread across her face. I told her, “it’s the funniest feeling, I can’t move my legs”. She wanted to call an ambulance immediately. Later, she would tell me, my skin had a grayish pallor.

Why did I refuse the ambulance? I hate hospitals, doctors and most of all, I am terrified of needles. At the time, I thought I could just sleep this fatigue away. My suggestion was, I just needed to call the doctor. So, after I negotiated my friend’s directive down to a doctor visit, from the prospect of an emergency room visit. I got down the stairs sliding on my butt. We called a friend who had a wheelchair and could carry me into his car then, we were off to the doctor’s office. While being wheeled toward the examination room I passed a scale. The kind of scale with weights along a bar indicating pounds; this scale was located just off the hall on my way to the examination room, this scale is last thing I remember. Not the entire scale. My last memory is this scale with about one third of it blacked out. It is like a shutter in a camera got stuck. The scale was vertically blacked out in the direction I was moving. I do not remember the doctor’s examination, the emergency room, the hospital, the ICU. My next memory is focusing my vision on a whiteboard trying to make out and comprehend why it indicated the date of “September 24”.

recover4shore

Category Archives: Guillain Barre Syndrome