Patient Stories

Michael Coleman’s Story

Michael Coleman’s Story

“My name is Dr. Gupta, and I am a neurologist. You have a rare condition called Guillain-Barré Syndrome. I am going to be honest with you: there is a very real chance you will not survive the week. I am admitting you to ICU, we need to act fast.”

This was March 26th, 2016, the third time in my life I was in a hospital emergency room being told I may not survive the week.

This Stands campaign is graciously supported by my Once Upon a Time friends in the cast, crew, and writers’ room, as we raise resources and awareness for this crippling condition. It is with tremendous emotion and humbled gratitude that I thank all of you in the “Oncer” fandom for your support in what has become a very personal connection for me to this syndrome.

A few weeks prior to the statement above, I began experiencing some incredibly unique symptoms that were nearly impossible to explain. It was somewhat confusing as I was literally in the best shape of my life. I had committed to a strict program and was feeling incredible! Then, I started feeling strange sensations. I left a TV interview one day and tripped a few times to the ground on nothing. It was bizarre to say the least. I assumed I was just getting clumsy due to my busy schedule. Then I had a weird feeling of cold, short, minty breathing all of the time where my normal breath used to live. It was as though I’d just climbed a cold mountain and swallowed a pack of mints—all the time. And then my shoulders began to hurt like I’ve never hurt before.

I went to the walk-in clinic to get checked out. I also suffer from other ailments, so I’m not always an easy diagnosis. The doctor chalked up the sensations to a new anti-depressant I was taking. He recommended I stop taking it and come back a few weeks later. I did as directed, but a few days later things got worse. Everything was being intensified to extreme levels. Once again I went to the doctor’s office and was sent home and told to return in a few weeks.

On March 25th, 2016 around midnight, I found myself freezing uncontrollably. I laid in front of my fireplace with my arms at my sides. My shoulders now felt as though they were being ripped aggressively out of my sockets and I lay there in uncontrollable tears. My wife was upstairs asleep. Not being one to over-dramatize anything, I gave her a gentle nudge and told her I was going to go to emergency “…just to be safe. It’ probably nothing, but I’m out of ideas.” I spent eight hours in the hospital and went through nearly every test available, but the doctors couldn’t find anything. I continued to text my wife letting her know I was okay, not really knowing what I was in for, but wanting to be brave and strong. That morning, a new doctor on shift came to release me. She was kind and empathetic and told me, “We’ve looked at almost everything and can’t really see anything. We’re going to send you home, but if these problems persist, come back and see us in a few weeks.”

Now in helpless tears, feeling completely over-dramatic but more scared than I’d ever been in my life, I begged her, “Please don’t make me go home. I am probably being dramatic here, but I think I’m dying. I am so scared. Please try everything/anything else before I have to go. If I go, I’m not sure I’ll be able to come back.” After a few moments, she decided shed explore one more test but told me it was a long shot; very painful and not likely to find anything. Desperate, I said I would do anything to not go home. She scheduled a lumbar puncture for me. A few hours later, my wife and I waited for the results. As we were talking the entire left side of my face dropped. I felt strange but didn’t know what was happening. My wife looked like she was seeing a ghost. She panicked and rushed to get the nurse. She came back with the nurse and as they were checking me out, the right side of my face dropped too. 5 minutes later Dr. Gupta entered my room and delivered the sentence I started this story with above.

I was rushed to ICU where the rest of my body quickly followed suit on the “dropping” sensation. As I waited for the intravenous immunoglobulin treatment (one of two possible treatments for my rare condition), my body quickly went into what felt like dental freezing from the top of my head to the tips of my toes. I could feel hot/cold/sharp/dull but had zero ability to talk to my nerves. I couldn’t blink, swallow, and fought to breathe. I lay there in near complete paralysis as I heard people discussing my odds of survival and recovery.

I should note that at this time I had a 6 month old daughter and 4 year old daughter. My thoughts were on nothing but, “l cant die. This would be an incredibly cruel thing to do to my wife. I have to help her raise these babies.” I was flooded with love and support from friends and family. I still remember the jealousy of the nurses and my fellow ICU patients when I got Zootopia balloons from Judy Hopps herself. Still able to speak a little, I was able to brag, “She’ kind of a friend of mine. We were roommates on a show for a bit.” That, and my celebrity guests who came to check in on me. The friends I’ve made on Once Upon a Time are truly some of my best friends in the world, and we have now been through Hell and back with this disease of mine. My agents, cast-mates, everyone was so incredible during this time. You really find out a lot about people in times like this and I was overwhelmed with love.

A few days after my initial five days of IVIG treatment saw me getting progressively worse. The doctors came in and told me I’d need help breathing and they were going to give me a tracheotomy. Terrified, I begged them to let me use my CPAP machine for a night or two in the hopes my recovery was just delayed. At this moment in time, I had every confidence I was going to die. But I was not going to go quietly or without a fight. Ten years before, I was told this same outcome was a possibility with another disease, and not only did I survive, but I was cured.

Almost completely paralyzed and without nerve connection to most of my body, I lay there for another day and suddenly… a twitch. I got a feeling back. I was still being fed exclusively through IVs and not even allowed a drip of water orally for fear Id choke on it, but I was now headed in the right direction. I stayed in that hospital for a few more weeks and eventually was able to get into a wheelchair and reclaim some mobility.

At this time, I was offered an opportunity to attend a Once Upon a Time convention in the UK in April. Aha!!! A target for recovery. I told my neurologist I’d never been to the UK and I must go! She told me I was crazy and would likely still be in a wheelchair, requiring around-the-clock medical attention. But when you’ve got to go to London? You’ve got to go. I’d never been and was certainly not going to miss this trip. I started working doubly hard on my rehab. I was told I’d get more results from doing 70% than doing 100% but I’ve never been that guy. So I did 200% against their wishes and would sneak in extra work when the nurses weren’t looking and the other patients were asleep. I wasn’t allowed to be alone, but I’d often get into my wheelchair and sneak off to a part of the hospital where I could struggle with my exercises.

I still had lots of “dental freezing” feelings throughout my body and this prohibited me from being able to walk or even talk. But now that I knew I wasn’t going to die and would contribute to raising my two girls again, my new focus was London. The doctors eventually agreed I was better off at home under wife’s supervision than in the hospital if I was just going to run away every day. I was released under the condition that Id promise to come in every single day for intense rehab. I worked with a team of physiotherapists who helped me relearn how to walk (not easy, I tell you. Walking is way harder than you think if you’re starting from scratch). I worked with an occupational therapist who helped me retrain my brain on the simplest tasks like using my left and right hands appropriately. I worked with multiple speech therapists. It was exhausting!

Every day I was in multiple therapy sessions. It became a full-time job. Physiotherapy. Speech therapy. Massage therapy. Acupuncture. Laser therapy. Neurological therapy. Many people spend a year or so in hospital, but I was motivated and determined to heal faster than anyone who’s ever come in contact with this condition. A week before London, now driving but unable to blink and now on crutches (better than my wheelchair), I told my wife and doctors I was going. Sleepy and Sneezy offered to stay by my side 100% and take care of me. And with my dwarf brothers willing to take responsibility for me, I was granted permission to go.

After London, the team at Creation Entertainment welcomed me with open arms. Even with my crooked face, they offered me opportunities to participate in Once Upon a Time conventions. I love these people like family. 16 months later, I’m still in multiple therapy sessions every week. I am still partially paralyzed in the left side of my face. That being said, I’ve never been busier.

My wife, my children, my cast-mates, my agents, my mother… everyone in my day-to-day life were incredible sources of strength and inspiration. I was able to overcome incredible odds and I am now about 90% recovered with every intention of a full recovery.

This Guillain-Barré Syndrome is a scary business and can attack anyone, including children. If you want a good cry, watch videos online of various people battling incredible odds against this monster. Some of the strongest people I have have ever witnessed are the kids who are told they’ll never walk again but still kick this disease right in the nose and reclaim their entire body.

Adam Horowitz and Eddy Kitsis legally made me Happy several years ago, and through the community I’ve met through their incredible story I’ve found countless reasons to be Happy for the rest of my life. The love and support of those connected with this show in the cast, crew, or fandom has been so incredibly moving that I’m not sure I could be anything but Happy for the rest of my life.

Thank you for your support with this campaign. Your generosity means the world to me and my family. I will beat this disease and I will continue to be a strong voice in creating awareness for this debilitating condition for the rest of my days. As you have all made me incredibly Happy with your love, I wish you all the same in return.

Please. Be Happy. Trust me on this one. I’m kind of an expert on the subject.
-Michael Coleman