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.