Gina A Johnson.JD

At nineteen, I believed I was invincible. My life was a blur of flashing cameras, glittering runways, and standing ovations. I strutted across Caribbean stages under blinding lights, performed in eight shows a week, smiled through countless interviews, signed autographs until my hand cramped, and breathed in the applause like it was oxygen.

The Caribbean was paradise—turquoise waters, warm breezes, adoring crowds. I was living my dream as a featured model on a renowned international fashion tour. What could possibly go wrong?

I’ll tell you what, something so ordinary it seems absurd: a can of pineapple juice with a dent in the side, something I hardly notice. Parched after a show, I toss in my coins, pull the can from the vending machine, and crack it open. Cold, sweet relief—or so I think. Within hours, agony consumes me. My stomach clenches like a fist. Violent waves of retching tear through me, each spasm brings a shock of pain. My body convulses as if it is fighting itself from the inside out.

The island’s hospital is anything but paradise. I am trapped in a merciless cycle: sedated, jolted awake with smelling salts, sedated again. My body will not stop vomiting. Pure torment. The nurses stand by, helpless or indifferent, as if my pain is all too routine. Only when my business manager calls in favors with the Minister of Tourism am I finally transferred into capable hands. That swollen can contained botulism—a poison that awakens something even darker within me. A parasite in paradise. A careless sip sets in motion a nightmare that will define the next chapter of my life.

Nine months later—October 14th, 1985—is my 20th birthday. A day that should be filled with balloons, laughter, and celebration becomes a day of dread. I am once again in a hospital. The hospital this time is Queen of the Valley in Southern California, and they are trying to solve the mystery of why I’m experiencing a loss of feeling in my feet; why this horrific sensation is now moving up my legs towards my hips, making walking impossible.

Sadly, this particular hospital carries many painful memories for me and my family. Just two years earlier, in December of 1983, my father succumbed to cancer in this very hospital. Further compounding my anxiety is the fact that just a few months later, in February of 1984, my 15-year-old brother was hit by a drunk driver, admitted to their ER, and then placed on life support. A week later he passed away. Now my brain can’t help feeling it is my turn — not only to take up residency at Queen of the Valley hospital, but to die here as well.

For now, I am admitted into a cold, sterile room with only a single bed. It’s a small space but, given my inability to walk, everything seems to me to be too far away. The bathroom, perhaps 4 feet in front of my bed, seems miles away. The counterspace that will soon hold well-wishers’ flowers, is unreachable in the great, far distance. My immobility feeds further into my fears, everything feels so unattainable!

Nothing in this new world of mine is able to bring me comfort. I don’t know what to do. Nothing feels right. This room is so empty, so silent. It’s too much. I can’t breathe! It makes me think about everything I went through overseas; the fear comes back like it never left and I’m powerless to stop it. Why is this happening? Not again!

Staring out the hospital window at sunset, so many questions and fears fly through my head. I realize in that moment that I will never see, feel, or view a sunset the same way again. I feel as though the sun has set on my teens, only to launch this new, horrible, nightmare chapter of my life! There are no logical answers to these questions that I, as a 20-year-old can comprehend. I’m terrified… what if I don’t live? And if I do—what if I can’t walk? What if my whole life is already over before it even starts?

By the time I finally meet my doctor, later that day, I am no longer able to walk on my own. When I see my first doctor come striding through the door, I suddenly have a sinking feeling in the pit of my stomach. It is the same neurologist that had treated both my dad and brother! This realization causes me to feel pure dread! My dad and brother were in his care and now they are both dead. Based on my prior interactions with him, I perceived him to be an overly self-righteous man; a man with zero compassion for others. In terms of his bedside manner, his lack of empathy seemed directed equally to his patients and their family members alike.

After a quick exam he begins to speak to me in a very cold, matter of fact tone. He explains to me that I have Multiple Sclerosis (MS), and the reason that I no longer have any feeling in my feet, my legs, and now my hips, is that I am suffering from a particularly aggressive form of the disease. If everything continues at this rate, he says that the textbooks give me 6 weeks to live.

What? How can anyone, let alone an experienced physician, so callously tell a young girl that she needs to prepare for imminent death? On my 20th birthday, no less! Although he might be a renowned neurologist, I have no confidence in him. The truth is, I already feel as though he’s written me off. That must be why, as he is relaying this information to me, my ears only hear the voice of the teacher from the Peanuts cartoon (wah, wah, wah, wah). What little respect I may have had for him, now fully crumbles away. Truth be told, I feel nothing but disdain and disgust for this man!

Before I can even formulate a response, he excuses himself, quickly exiting out the door, before disappearing into the hospital’s corridors.

After receiving this initial, fatal prognosis, for the next two-and-a-half days I do nothing but cry. I am lost in this new world. With all that has been taken away from me, I no longer need to think of my modeling career or where that path on my life journey will take me. I know my future will be limited to a final 6 weeks in a hospital, whereupon I will then succumb to this disease, much like my dad and brother did.

During these painful days in the hospital, my mother is constantly at my bedside. With my brother’s recent passing, my mother has now lost three of her children, and I will make number four. She is also still mourning the loss of lost the love of her life, my father. My mind immediately flashes back to images of my mother, sobbing at the news of my father’s death; sobbing at the news of my 15-year-old brother’s death; and now, envisioning the sobbing that is to come when she gets the final news about me!

Observing her keeping vigil over me, it dawns on me for the first time that death is difficult not only for the one dying, but for those around them. I’m not sure which feels worse now, my actual physical ailment or my psychological anguish?

On day three, I look up to the heavens, drawing upon all that I have learned in my Catholic faith all through my childhood and time spent in Catholic school. I, with the strongest faith I ever possessed, say, “Heavenly Father, your will be done!” In response, I could feel the presence of my God! In that very instant, I hear His voice, at that very instance, guiding me; comforting me, telling me that I needed to make a change. Inspired by this divine guidance, I sum up the courage to demand a new doctor.

The hospital is not happy with my request. In retaliation, at least as I see it, they assign me to a young doctor just starting his neurological career. His name is Dr. Charles Glatstein, and he comes across as a quiet, conservative, yet compassionate man. He takes the time to listen to me and to my concerns. He is thoughtful and considerate; deliberate in his approach. Over the next few hours, he pokes; he prods; he runs a seemingly endless gauntlet of tests; finally, he informs me I have been stricken with yet an additional neurological disease, something called Guillain Barre Syndrome (GBS).

He advises me that GBS is a rare condition, even rarer for women, especially young women. He is very transparent as he explains to me that he had an 18-year-old female patient, six months earlier, and she did not make it. Dr. Glatstein assures me that he will not let that happen again. He will be with me every step of the way. As one of the first steps in the process, he brings me a copy of a Reader’s Digest with an article about a man suffering with GBS who overcomes his struggles with this disease, due in large part to of the diligence of his medical staff.

You see, when you have GBS, you are paralyzed from the neck down, trapped in a body that no longer obeys you. The horror doesn’t end there—you inevitably slip into a coma, a liminal space where reality dissolves into haunting nightmares. In the article, the author vividly recounts how he endured these terrifying visions, each one clinging to the edges of his consciousness like shadows that refuse to fade. Yet, amidst this abyss, a fragile thread of hope emerges. The voices of nurses and doctors, steady and reassuring, pierce the darkness, grounding the author in the knowledge that he is not alone.

This revelation strikes a deep chord with me, offering me a sense of solace, even as I grimly confront the horrific reality of what lies ahead. I take comfort in knowing I will hear the voices of my providers, feel their presence, and hold onto their support, no matter how nightmarish the journey becomes. However, this insight also fuels my determination—I cannot let myself slip into that coma, I do not do nightmares well at all! In fact, I don’t allow myself to have nightmares!

Determinedly, I ask Dr. Glatstein, “how can I avoid going into a state of coma?” His answer, “It doesn’t work that way”. Persistent me enquires, “How can I avoid this coma thing?”. Again, I’m told it’s not possible! I refuse to accept this answer. In case you haven’t figured it out yet, I am a very stubborn person. Very little stops me from accomplishing a goal. This last plea causes him to say, sarcastically, “Then don’t get paralyzed from the neck down!” Instantly, after his voice changes tone from annoyance to one of sadness, as he says to me with alarming frankness, “You will become paralyzed from the neck down. But also know I will be there for you.”

Well, I am not sure what moon was rising or what sun was setting on the day that I was born, but I took that prognosis as a challenge! Despite the fact that I was paralyzed from the neck down – for me that was at the C2 and C3 vertebrae – I was still able to try and move my arms. I also was able to remain awake, never entering that full state of coma. I wish I could say that my brain didn’t play any crazy tricks on me, but from time to time it did.

There was one specific time that stood out, when I frantically hit the nurse’s button, yelling that I have to pee, but the room has it out for me: the trash can is in on it, the largest rose arraignment is the ringleader, and they are all blocking the restroom door! Help me escape! Instantaneously, the response came crackling back through the speaker, “DO NOT MOVE. DO NOT TRY TO GET UP. WE ARE ON OUR WAY.” What I didn’t fully comprehend while in my dreamlike state is that if the paralyzed parts of my body were to be injured, they literally would not heal correctly. Although there was a walker near my bed to assist me in small jaunts to the restroom, in my delusional state I don’t even see it. No doubt about it. My brain is definitely playing tricks on me!

After that frightening episode, things slowly began to take a turn for the better. I’m able to make it through the next few weeks, largely because of my determination to survive. The saying mind over matter is not just some old wives’ tale, it is a fact. Even my neurologist agrees with this assessment. As proof of this, he will later write one of my recommendation letters for admission to law school. In it, flatly states that never has he met someone so determined to resist going into a state of coma, that they were actually able to achieve the goal.

All the same, I have to credit my doctor and the medical staff for giving me the courage to fight this awful disease, well two diseases, actually. I am a part of a rare group that manifests both Guillain Barre Syndrome (GBS) and Multiple Sclerosis (MS). Although that early diagnosis was a tough one, affording me a 6-week, then 5-year, and finally a twenty-year life expectancy at best, I now sit here exactly thirty-nine years later, triumphantly writing this piece on a birthday that I was told I would never be able to attain.

Although I haven’t fully shared all the mental pain I suffered in this horrific ordeal, I did come away with lessons. One of the biggest was this: although I felt the shame of being reduced to someone with a disease, someone who was only a shadow of my former self; “the star”, each of our trials and tribulations are never solely ours. They can, and do, inevitably have a profound effect on others.

The exact same way that the Reader’s Digest article gave me the strength to fight, allowing me to see that there is a light at the end of the tunnel, and to accept the new and improved (not physically, but mentally) 20-year-old self. Reading that article inspired me to accomplish what I was told was impossible. Not only did I survive my 6-week death sentence, but I have gone on to achieve so many milestones in life, such as graduating law school, getting married, giving birth to my daughter, and eventually being blessed with my grandson!

Looking back now, I must acknowledge that disclosing my medical history like this, in such an open and honest manner, makes me feel vulnerable. Some may dismiss my experiences, assuming that many individuals are disabled and simply learn to accept their circumstances. So why should my story matter? What makes me different?

Perhaps my saving grace is that, for the past thirty-nine years, I have never fully accepted this condition. I have refused to let it define me, refused to let society’s labels dictate my identity. Even now, I still aspire to fit seamlessly into what the world calls “normal.” That refusal—stubborn, defiant, unyielding—has been my compass.

Long before this life-altering trauma, I had always carried what I call a Pollyannic outlook. You remember the story Pollyanna, don’t you? She was an orphan who, despite hardship, held onto an unshakable optimism, always able to find the good in every situation. After an accident that left her paralyzed, even her spirit was tested. That story comforted me as a child. But when paralysis became my own reality, it was no longer fiction—it was a mirror too close for comfort.

Like Pollyanna, my optimism was tested in the harshest way. Yet faith and resilience intertwined, helping me hold onto hope and divine guidance even in the darkest nights. That belief—that my story has meaning not just for me, but for others—became my anchor. It is what truly gave me the strength to get through those weeks in the hospital, months in physical therapy, and the entire year’s journey, post paralysis, to once again walking without the aid of any apparatus.

My final words to you, dear reader, are very simple; I tell you; Fight! Fight for yourself. For your dignity. For your well-being. I didn’t initially receive the care that I deserved; I had to fight for it. No one knows you, like you! You know how you feel. Whether or not you are a medical doctor, you are an expert in you.

On my 20th birthday, I was told I had six weeks to live. Thirty-nine years later, I am still here. “Never let anyone else write your ending. Not a doctor. Not a diagnosis. Not despair.” Because sometimes, the fight itself is the miracle.

I take solace in the words of author Rachel Marie Martin who stated that, “Sometimes you have to let go of the picture of what you thought your life would be like and learn to find joy in the story you’re living” It makes me realize that although this is a different narrative than the 19-year-old me would have written for myself, I now understand that is what re-writes are all about! I dedicate my story to all those that need a re-write. I am confident that, just like me, you will not only persevere but excel! Personally, my faith is a huge part of why I survived the worst birthday ever.