Saturday, May 24, 2014

Off To The Races

It's been 7 1/2 months since I got GBS, and I'm finally seeing the rapid rate of recovery that is expected in the latter stages of the illness. Two days ago I rode the spinner stationary bike for the first time, putting in a solid 20 minutes after doing a 45 minute walk around the house. I also made sure to get some wall squats in which strengthen the quadriceps. The spinner focuses on different muscle groups than walking and helps strengthen the hip flexors in particular. I also felt it working my ankles through the repetitive motion-- a welcome sign given that my ankles are an area of weakness and I have trouble with heel raises. Later in the afternoon after resting for a while I did a walk in our hilly neighborhood, going 0.8 miles with the aid of a cane on the steepest parts. Not bad for one day of recovery!

Doing the PT to the best of my ability gives me a feeling of satisfaction. I am not just waiting to get better; I am putting in work each day that helps me toward that goal. It is rewarding to see my progress and especially rewarding now that I am really on the upswing. Yesterday my internist gave me the green light to take the Metro by myself in D.C. So I'll be back on the subway and able to get around the city! I'm already making plans to get together with people. I heard about delays and recent deaths on the Red Line-- the line closest to my house -- but remain undeterred.

We have had the benefit of magnificent spring weather of late in Washington and it has no doubt helped to lift my spirits. After a long, snowy winter of being stuck inside and trudging the hallways of Manor Care Potomac with the aid of a walker it is a blessing to be out in the great wide open strolling the tree-lined streets of D.C. with the minimal assistance of a cane.

Sunday, May 18, 2014

Super Powers

In my last post I wrote that the images I was able to come up with as I lay in the ER of paralyzed people whose fate I might share were of super heroes whose powers had been incapacitated as part of their paralysis. Professor X with his peculiar levitating chair and bald head stood out in my mind. The image was so bizarre as to be almost funny, and my situation still felt so surreal in those first few hours that to envision myself as a Professor X in my future life added another degree of absurdity to what was already impossibly happening to me. My legs had collapsed under me like one of those little toy animals: you press a button and the creature, which is help tautly together by string, collapses as the strings holding together its limbs slacken. I had one such toy as a child: a pink, plastic giraffe on a small cylindrical stand that I had won at a carnival. My limbs had become as weak and useless as the toy giraffe's in the fallen down position. 

Fortunately for the giraffe, as soon as the button is decompressed, it springs to life again, its limbs tight and firm again, its little pink body and neck upright. It would take months of gradual recovery--a process I am still undergoing-- for me to stand upright and walk without the aid of assistive devices. It took me from October 8th, 2013 until Valentine's Day, February 14th, 2014 to stand up from a chair without the assistance of another person helping me up. I relied heavily on my arms for the initial push upwards.

Through hard work pushing through pain and the obstinacy of my body with its atrophied muscles and demyelinated nerves I have regained my own super powers. Not X-Ray vision or telepathy or flight, but standing on my own two feet, climbing up and down stairs, showering and using the bathroom without assistance, lifting objects and fine motor skills, and most importantly walking. There was a time when I doubted I would ever walk again, even though as I left Mount Sinai Hospital after a one-month stay Dr. Laura Marcuse told me that I would. It just seemed impossible given my incredible weakness at the time.

If I have learned anything from this whole experience, it is the value of persistence and patience in the face of adversity. For months I had very minimal gains. During my first month, I had a measured grip strength in my hands of ZERO pounds (average for a male my age is about 120). A month or two in I was up to three pounds. Gradually I made my way up into the teens and double digits, and I now have a pretty damn solid handshake. A super power I regained at four months into recovery was the ability to open a pop top on a soda can. Something to be grateful for. Can you imagine what it's like to be that weak? Thankfully other fine motor skills such as typing and using mobile phone devices returned earlier in the recovery process, allowing me to communicate better with friends.

Recently I went out with friends for the first time since I was put in the hospital last October. Nothing special, just an evening of pool and dinner at a Thai restaurant, but man was it awesome to rejoin society! I managed the steps down into the pool hall without any problems although there was only one rail. I had a great time reuniting with two of my old friends. Both had come to visit me while I was in the rehab facility in Rockville, but it's totally different being out with friends on the town than having them visit you when you're in an institution. I finally feel like I'm regaining my freedom and getting back to my life! I'm very grateful.

Saturday, May 3, 2014

How It Started

As I lay in the curtained-off area of the ER and listened to the cacophony around me, dozens of confusing thoughts and sharp fears ran through my head. What was happening to me? The weekend before I had been happily socializing at an event for students in my Master's program. Life seemed dandy. True, I had recently recovered from a nasty stomach bug whose symptoms resembled dysentery, but I was over it and back to enjoying life. I relished the opportunity to get to know my new classmates better and meet some of their significant others. I had just started the program in Mental Health Counseling a month before in September 2013 and was still getting settled in.

Two days later I got hit with the early symptoms of GBS, which I described in my previous post, and the next morning found me flat on my back in a hospital gurney. I had asked the EMTs who drove the ambulance to take me to Mount Sinai, which was close to where I lived in East Harlem. I could feel my legs; they were there all right-- but I couldn't move them. I could wiggle my toes just a little bit. It was like being a puppet with loose, dangling legs, except mine were weighty and unwieldy. The doctors did tests to see if I could feel--running something wooden like a golf tee over the bottom of my foot, for example--and I felt it. The movement in my legs just was not there anymore.

After being visited by several doctors who asked about my symptoms including my recent flu-like episode with the stomach problems, a young resident came in and gave me a provisional diagnosis. "We think you may have Guillain-Barre Syndrome," he said. "It's a difficult disease, but about 80 to 90 percent of patients make a full recovery." What happens to the other 10 to 20 percent? In other words, a 10 to 20 percent chance I'd be paralyzed for life?!?!? 

"Don't tell me what happens to the other 10 to 20 percent," I said. "I'd rather look on the bright side for now." Images ran through my mind of paralyzed people (since I didn't really know any paralyzed people personally, most were imaginary or conceptual to me: Christopher Reed; Super Man left a quadriplegic, Professor X in his levitating chair-- strangely all seemed to be super heroes divested of some of their former powers and strength. Only now, almost seven months later does it occur to me that although Professor X lost his physical powers he retained and even honed his mighty psychic ones!) Would I end up like them? Would I spend the rest of my life in a chair? What would life be like as a handicapped person? Could I possibly handle it? These thoughts all rushed together in a blur of images and chain of fears. There was a sense of vertigo--of being on the edge of the abyss--but also a sense of acceptance; here I was, it was happening, and there was nothing I could do about it.


Wednesday, April 2, 2014

Living with Guillain-Barre and My Journey toward Recovery

On October 7th, 2013, a strange process was beginning in my body that within twenty four hours would leave me paralyzed from the waist down and begin to immobilize my arms as well. I contracted Guillain-Barre Syndrome (GBS), a rare auto-immune disorder that affects about 1 in 100,000 people. 

That day I noticed that my feet felt oddly heavy and I began having trouble going up and down the stairs to my apartment. Another unusual thing happened: if I sat down in a chair and attempted to get up, I would fall back down unless I used my arms for support. That evening I was bending down to pick up a shirt out of a laundry bag I had on the floor. As I bent, I sank to one knee. Then my other knee gave out underneath me and I found myself lying on the ground. I realized my whole body felt heavy and I was going to have a hard time getting up. At first I couldn't manage it. I crawled around on the floor for fifteen minutes, pulled both my knees under my torso, and grabbing my bed and my desk, lifted myself up with my extended arms.

At this point I knew something was wrong, so I called my GP and left a message with the answering service (it was night). I soon went to bed and fell asleep. Later, I awoke at 5 AM and attempted to call the doctor back. Getting out of bed, my legs crumbled immediately beneath me and I was on the floor. This time I could not get up. I was on the floor for thirty minutes before I managed to get my cell phone and call my roommate who came to assist me. We called 911 and waited for the paramedics.

I had an agonizing experience with the EMTs: one of them dropped me dozens of times on stone steps and asphalt and verbally abused me for it. I could no longer walk, and they apparently lacked the brains to use a stretcher to transport me to the ambulance. I was taken to Mount Sinai hospital. After the stellar care I had at Mount Sinai I will always be grateful that I requested the ambulance take me there.

I spent nine days in the "step-down" unit in the neurology department, one level below intensive care. We were all elated that the disease did not extend to affect my respiratory system; a third of GBS patients must be put on respirators with tubes through their trachea, and it is not uncommon for patients to be paralyzed up to the neck. The IVIG treatment I was given did a good job of slowing down the destructive process of the disease and probably prevented me from going on a respirator. 

GBS is often contracted about two weeks after a viral or bacterial infection. I had such an infection which I had thought was a two-week flu virus with gastroenteritis, but now know was probably a bacterial infection with flu-like symptoms. No one knows exactly why, but the antibodies your body has built up to fight the previous infection turn on you and begin to destroy your peripheral nervous system. Damage is initially to the myelin-- the sheath covering the length of the nerve--and sometimes restricted to it. However, sometimes the axon of the nerves themselves are damaged. The myelin is basically a fatty insulation that covers the "wire" of the nerve itself, the axon. Cases of demyelination only are less severe and recover more quickly. I would later learn that my case involved axonal damage as well, so I was in for a longer trek of recovery than some patients. Thank God or the Universe or goodness that the nerve damage from GBS is reversible, and most young, healthy people make a full recovery. It takes a long, long time though as gains in nerve repair can happen at the rate of 1 mm per day! So my strength and muscle function has been returning gradually and steadily, after an initial lull period of about the first five weeks when I saw much smaller gains. However, the rate of change can still be agonizingly slow, and you have to remind yourself that every little improvement counts, and that eventually you will be fully better.

There have been some "great leap forwards" however--such as the milestone I achieved this Valentine's Day. I didn't have a Valentine this year, but that was far and away made up for by the fact that I stood up from a chair for the first time without assistance since I had gotten sick on October 7th. I was taking a nap, and my occupational therapist Whitney came and woke me up. She said it was time for therapy. A feeling came over me that I can only describe as miraculous--a sudden infusion of power and energy. "Look what I can do!" I said, as roused from my slumber, I grasped the arms of the easy chair for support and lifted myself up. My legs kicked in and I rose to my feet. I teetered a little and asked Whitney to get in front of me and bring my walker. I had done it! What a great feeling; hitherto every time I had stood up someone had assisted me with a gait belt around my waist and helped pull me up. Now I had stood on my own accord. 

So far, my physical rehabilitation program has comprised three weeks of acute rehab at Mount Sinai hospital and four months of in-patient rehab at Manor Care Potomac, a sub-acute facility. I am eternally grateful to the physical and occupational therapists who helped me along the way as I gradually got my strength back, and continue to do so. I have gone from unable to walk or stand without two people getting me up to ambulating considerable distances and even doing small hills with a walker and having the ability to stand up, dress, and shower myself. After five months of living in the hospital in New York and then a rehab facility in Maryland, I finally came home to my family in Bethesda, Maryland. It is a joy to take another step toward freedom and my hope to resume my education as a mental health counselor this fall in New York City. 

The one constant and unflagging rock to which I have clung throughout this time has been my family. My father and mother, my sister, my aunts, uncles, and little and big cousins alike. All have been instrumental in lifting my spirits and hastening my recovery. Not to mention the innumerable friends who have had my back as well throughout this journey of recovery. My family and friends, your wind has filled my sails and sped me along through dark and unforgiving waters. Still, off in the distance, I think I spy the outline of a bright and auspicious shore.

Sunday, March 30, 2014

Neurosis and Human Growth: starting to read Karen Horney's classic text

Irvin Yalom mentions Karen Horney's Neurosis and Human Growth on the first page of his book  The Gift of Therapy as the single most helpful book he read as young student therapist. As a budding student of therapy and counseling myself, I thought I would pick it up and take a stab at it. From the very start I was enthralled by Horney's comprehensive vision of neurosis and the human condition in general. I had read that she was a neo-Freudian, and as such expanded on Freud's theories to regard interpersonal forces as more critical in determining development and behavior. What I began to read was a broad philosophical, moral, and psychological treatise on why we do what we do, think how we think, and feel what we feel.

In her introduction, Horney writes: "Under inner stress... a person may become alienated from his real self. He will then shift the major part of his energies to the task of molding himself, by a rigid system of inner dictates, into a being of absolute perfection. For nothing short of godlike perfection can fulfill his idealized image of himself and satisfy his pride in the exalted attributes which (so he feels) he has, could have, or should have." Her initial description of the neurotic condition puts forth an idea on which she will elaborate extensively throughout the work: that of the individual's process of "self-idealization" and striving towards a false, unattainable image of himself-- one that she will compare to a mirage in the desert. This developmental process is a result of inner alienation from self, as well as the lack of a solid foundation of self-confidence and self-knowledge. It is a shallow substitute and immature compensatory mechanism for the process of self-actualization--the expansive growth into the fully realized self.

In my opinion, American culture is replete with an ethos of self-idealization. This subtle undermining force underlies much of the unhappiness of the average person in the U.S. We live in an ultra-competitive society: materialistic, power-driven, achievement-based. Most young people start out in a position of "less than" and are compulsively driven to attain a superior position-- that of "more than". If they cannot achieve this position they become alienated both from themselves and from society. The "task of molding" oneself rigidly and conscientiously into the "idealized image" of oneself often begins even in childhood in our current culture and may be externally imposed by parents and internalized by children as a way of life. What, however, is wrong with this constant striving for self-improvement and self-betterment? Is this not the pursuit of happiness? Is this not the American dream? Pride, replies Karen Horney; the sacrifice of the "spontaneity" of feeling and thought for an artificial reality in which a person can no longer determine his true thoughts and feelings from those imposed by the need to satisfy his self-ideal as prefigured by his initial feelings of inferiority. We take jobs and pursue careers we do not actually want because we want status and recognition among our peers. We marry spouses whom we are ambivalent about because it seems like the right thing to do, or we wish to be a married person. We are no longer in control of our life. We are no longer in the driver's seat; we are being driven. We no longer know how we really feel, what we really want, or what we value because our genuine self has become obscured by the self-ideal.

I am looking forward to commenting more on Neurosis and Human Growth as I dive further into it. Any comments and thoughts about self-idealization and our current culture's affinity for it are particularly welcome here.