A Vision of Change

My Journey with Myasthenia Gravis

In late summer of 2011, I was enjoying a family reunion at the beach. I reveled in my time in the hot Florida sun, playing in the pounding waves and laughing with carefree abandon surrounded by family. But my life was about to forever change and I had no idea what was ahead.   

I remember feeling as if I was coming down with the flu early on in the week. My legs began to feel funny, heavy, similar to the change sensed when we move from the buoyancy of the water and onto dry land. I was tired and something felt “off” but I assumed I had just spent too much time in the overbearing heat. I began sleeping more and the feeling of lethargy increased. By the time we left to return home, my legs felt wobbly and I was beginning to drop things frequently. I shrugged it off as over exertion and a virus going around, naively assuming it would all just pass once I returned home. 

Ten days passed from the time I first began feeling ill and I was not improving. In fact, I was worsening. I slept more and more and became difficult to rouse. I was struggling to brush my hair. I dropped my phone and eating utensils. When my legs started to “bow” and felt as though they would collapse under me when I stood or moved any nominal distance, I grew concerned and so did my family. We went to the ER knowing that this was no flu bug. They did basic labs, offered me Tylenol and told me I was “fine” and to come back if there were any changes. In just a few short days I would return, my legs unable to hold me upright, my eye drooping, my breathing becoming more difficult and my swallowing unpredictable. I was worked up for spinal meningitis and endured my very first spinal tap, a hellish nightmare in and of itself. The young resident grew concerned at my flaccid legs and weak voice but the attending insisted I was looking for drugs, patted me on the hand and told me, “we will just tuck you in bed upstairs and give you Tylenol. It is best you go home. There is nothing wrong with you”. I walked out of that ER like a waddling duck. Twenty-four hours later, I was back, my breathing and systemic weakness worsening.

 Scared and unsure, I returned, hoping beyond hope that someone would know what was wrong. An ER doctor told me that I was just de-conditioned after collapsing in her arms while trying to stand. She insisted that would explain away my severe worsening of leg and arm strength within a twenty-four period and was summarily dismissed yet again. I went home and wept and waited for the fearful unknown. After a couple of days, we rushed back to the same ER when I could not sit myself up after laying down. A second spinal tap was performed, one that made the first seem like a lark. I was paralyzed from the waist down after that tap and admitted to their neurology floor. After 8 days of becoming a human experiment for students and attendings alike, I was kicked out with a security escort, assured that I was far too young to have Myasthenia Gravis and that I had “deeply disturbing psychological issues” when I insisted on a second opinion. Still paralyzed, I went home with no answers and no use of my legs.

Weeks slowly trickled by as we waited, scared and helpless, terrified to continue to seek help. In a matter of weeks, we had been accused of “hospital hopping”, being a drug seeker, having psychological disorders and “knowing too much medically”. It wasn't until two visiting nurses came to check on me in the middle of September and noticed my slightly blue legs and my wheelchair condition that they quietly pulled my parents aside and encouraged them to take me to another hospital. The ER doctor immediately suspected MG and began the process of admitting me. A kind, new neurologist ordered the labs and I waited in an ICU room, tentatively hopeful that this time, I would get my answer. But the neurologist was called away for a funeral out of the country and his colleague began to listen to the hospitalist who happened to be friends of the team that took care of me at the previous hospital. I was again threatened and accused, the internist openly suggesting that I be “locked away and put in a straight jacket”. He audaciously told me that he was betting his license against me that I did not have Myasthenia Gravis and discharged me, the new neurologist all too happy to acquiesce to his request. Days later, that same neurologist called my home and informed me that my tests had come back and that I indeed had Myasthenia Gravis. And so began a journey of tumult, crisis, trauma, accusations (even post diagnosis), black mail (a neurologist with held a crucial medication until I agreed to a thymectomy), fear, questions and complications.      

My life hung in the balance between being under medicated and over medicated more times than I care to count. Doctors who insisted they “knew” MG watched as my lips would turn blue and nonchalantly determine I was just anxious as I lay in a hospital bed, vainly struggling to breathe. My diagnosis was questioned time and again, I was spat on by clinicians and lied to and about in my records. And through it all, I remember feeling very alone; alone in my fear and in my experience, terrified that this would be the rest of my life, a life that I was not sure had a long horizon any longer. 

Years later, I find myself stable from the beast that is Myasthenia Gravis but it's touch still remains in my life. I determined years ago in a tiny, dark hospital room, to one day stand in the gap with other Myasthenics and their families, to walk with them and offer support and advocacy when they too faced similar challenges. Unsure of the direction but determined to act, I created Myasthenia Gravis Unmasked, a Face Book page that was conceived in an attempt to stand tall against the onslaught that rears it's ugly head against those who fight MG. Three years of loving on, supporting, educating and advocating for thousands all over the world through MG Unmasked nurtured along the vision of changing how MG was not only treated clinically, but also in the lay community. I watched patients struggle for significance, to be believed and supported when the literature insisted patients lead "nearly normal lives" and are "easily managed", dangerously diminishing and misconstruing reality in clinical settings and at home. I saw time and again an incredible need for caregivers and patients alike to find someone who would stay by their side to answer questions, offer emotional support, provide a safe place to talk about their hopes alongside the ugly realities, to have someone provide sound education, reliable and pertinent materials and take emergency calls anytime of the day or night.  I passionately fought for the MG community in the immediate while looking ahead to the hope of tomorrow.   

Frustrated at my inability to do more, I looked to build upon the foundation already set in place through Myasthenia Gravis Unmasked. I realized that, while there are other resources out there, none offered what I was doing. I saw a hunger for something more than the tired status quo and bedraggled, inane ideologies of a perceived reality. I determined to find men and women with the passion, skill and courage to trail blaze alongside me, to bring about real hope and practical support. I wanted investors of people and not power or personal gain, individuals who helped me push back against the stigmas and stood in the gap for others. And so, the Myasthenia Gravis Hope Foundation was born. 

 It is the redemption from loss, the grace of Jesus, and the culmination of years of getting in the trenches with my fellow Myasthenic and refusing to be content with how things were. I unapologetically believe that one of the greatest depictions of love is standing up and fighting for those who cannot fight for themselves. It is out of great love and depth of heart that I vow to hold back the tide and do all I can to help others avoid the senseless treatment I and so many others have had to endure. It is time for character. It is time for change. It is time for the MG community to rise and find hope in the middle of the mess once again.   I pray I can be worthy of the task before me. 

 - Rebekah Dorr

Founder, President

Fellow Myasthenic