I had been a model when I met my husband at a fashion show. He was the hair designer. We married. Together, we built a life around art and beauty, love and respect.
It was a normal night in our family home. Sleeping peacefully in the room adjacent to mine, my 2 1/2 year old daughter was sound asleep. My 4-month-old was with me as I nursed her through the night. My two step sons were home, and my husband slept by my side.
Suddenly, I heard a noise. My house had been hit by lightning and a fire sparked in the attic. It was January in Canada, and it was freezing. Miraculously, we all escaped the building, then we sat in our car and watched as our entire life burned to the ground in the cold winter air. It took only ten minutes to lose what had taken years of our life to build.
It was surreal. In moments, we lost it all: childhood trinkets, photos, moments, irreplaceable possessions. I also lost my extensive shoe collection, though this was not going to be the only time I would lose shoes and lose something even bigger.
Four years passed. We moved. We rebuilt. We started over.
One lovely day, I was jumping rope on the trampoline with my beautiful daughters. We were laughing and playing. We were having so much fun; I loved being physically active and I was in amazing shape. The very next day, I was completely paralyzed. It started from my face then progressed downwards, all the way to my toes. My mind was intact and present, I could see and hear and think, but I could not move. It was one of the scariest things I had ever experienced. And no one could answer the simple question of “What was happening to me?”
I had come to Florida to be the Global Director of Education for a hair company. I was in charge of 100+ hair dressers. My career was on fire! A few weeks after Easter 2016, I went camping in Florida and I was bitten by mosquitoes and my feet swelled. I did not think too much about it, it was nothing steroids couldn’t help. Within one month from that weekend, I was completely paralyzed. I was the kind of girl who always wore heels, stilettos, running around on them like a professional. I loved shoes, even more because after the fire, I had to rebuild my collection.
But now, I could not walk, talk or do anything else. Who would take care of my young daughters and my husband? So many questions, but my body was still. I had no answers.
My name is Amy Michleb. This is my Kintsugi story.
It was Mother’s Day weekend in 2016. My doctors couldn't figure out what was wrong with me. They considered Bell’s Palsy. It seemed I was having strokes, my facial muscles dropped and would not respond.
Mother’s Day was the day I was supposed to be celebrating being the caretaker, the matriarch, but I was completely and utterly dependent on everybody else. I couldn't even go to the bathroom without help. I couldn’t walk or be the sort of energetic person I had always been. I couldn’t be a mother; I had to be mothered. This was the last time I would walk for almost a year. I stayed in the hospital, then finally, I was moved to a rehabilitation center.
I was eventually diagnosed with Guillain Barre Syndrome. The reason for the late diagnosis is that usually it hits people from the feet up, but it started with my face first. I kept worsening because I was not diagnosed. Nothing was being done to heal me. Not knowing what I had was torture. If you don’t know what you have, you cannot treat it. I am a problem solver, but I lacked all control of this situation, my very own situation.
Guillain-Barre Syndrome is an auto immune disease. It is a virus. I likely contracted it from one of the mosquitoes. It is a rare disease. The body fights the virus, but it forgets to stop fighting. It starts fighting the nervous system, and it starts destroying it. The virus removes the coating of the nerves. While it can grow back, it takes time. If the disease is not treated early enough it continues to impact the nerves. That damage is irreversible.
Once diagnosed, I was given plasma to reset my immune system. This therapy doesn’t heal completely, but it stops the attack of the nervous system. They began treating me with three days of IV steroids and five days of IVIG (Intravenous Immunoglobulin). After that, the game plan became pain management, because as the nerves start healing, I began getting neuropathies and stabbing pains. Life would never be the same.
Being in pain is not good for mental health. Doctors want to remove or alleviate the pain, so they prescribe strong medications. In my case, I felt as if I was not able to focus on anything, I felt nauseous and was never hungry to eat. The side effects of the pain medication masked more than just the pain, they masked me. I did not know who I was anymore.
Frankly, that was the worst part. I was taking up space on this earth but was not able to do anything. I no longer felt like me. I knew taking these medications long term was a serious risk and I was so afraid of getting addicted and dependent on them for the rest of my life. I was also extremely afraid of having these drugs in my home where my daughters could get to them. I wanted to be alert, and eliminate all the side effects of the drugs, but for the most part I had not been in charge of my care.
Through the whole process, I understood what was going on, and I knew that although I lost my body, I was still me. I knew I had much to look forward to in my future. As soon as I was able to make my point clear, I removed the patches and stopped the drugs.
(I am not recommending this. If you want to stop any medications, you should consult with a medical professional.)
Distraction from Pain
When people were surrounding me, I did better. I was able to take my mind away from my situation. When I was alone, I began to feel sorry for myself. Those moments were filled with tears. I did not want my children or my husband to see me cry. I needed to be strong for them. Luckily, I knew the following: I had a good life. I was happy in my marriage, and I loved my children. I had a beautiful house. I lived in gorgeous Florida. By being positive, I remembered I had a lot to live for.
Usually, people with this condition start walking within two months. For me, walking further than two steps took around nine long months. Doctors say that the way a patient is at about 12 months after diagnosis is the extent of the improvement. But my improvement was so slow. I was recovering at the pace of an elderly woman and not a young, fit, and energetic person. So that was very strange for everyone involved.
The Bright Side
When it comes to Guillain-Barre Syndrome, the first day, the day of your diagnosis, is the worst you will ever be. From there, you start recovering. It’s a slow process; it's painful, but you get better. With so many other illnesses, the day of the diagnosis is the healthiest you will ever be: cancer, MS, Parkinson’s… I used this perspective to keep myself motivated. I could improve!
The woman I was, that young energetic woman jumping on the trampoline is not here anymore. My reality is different. I am weaker physically but stronger emotionally. I wear AFO braces on my feet as I still suffer from drop foot, and I trip over myself if I am not wearing them. Unfortunately, I can’t wear heels which was one of my favorite things. I have an extensive shoe collection, that till today I haven’t had the heart to leave behind. It is a memory of who I was.
It is hard to get dressed for events. Instead of slipping on one of my pairs of beautiful stilettos, I have to wear sneakers. My look is never complete. I don’t feel as beautiful as I used to feel, but it is my new reality. I feel I have no choice but to keep marching on.
It is clear that I was tested in ways that I felt defined me, were essential to who I am. Thus far, my journey has shown me the depth of my strength. I had been a model. Walking down the catwalk in high heels was a huge part of who I had been. I became a hair designer and teacher. My hands were vital to my job. I was tested exactly in what I thought I needed to be me, until I realized that high heels or giving haircuts was not what made me, me. Being a mother, a wife, an entrepreneur and someone who can inspire others is who I am. As long as I focused on my family and all my blessings, I improved.
My life today has taken a different path, one that I would not change for anything in the world. No one wants to be tested, to go through such pain or uncertainty. But, if you open your eyes, you can see the blessings that came with all the turbulence. These are the things that keep us from giving up.
Amy Michleb owns a salon in Palm Beach with her husband Woody. Woody Michleb Beauty Salon 400 Hibiscus Avenue Palm Beach 33480
Together, they have developed a line of luxury hair care products called Style the Runway, available at their salon, many shops and boutiques, and Saks Fifth Avenue. They are the hair designers for major fashion shows internationally. You can find photos and videos of their work onInstagram @woodyandamy and @styletherunway
AMY HAVE BEEN THE GIRL SHE IS…FROM THE MOMENT SHE WAS BORN…YOU WILL NOT BELIEVE ME …BUT I SAW IT RIGHT FROM THE BEGINNING…SOMETHING IN HER FATHER’S D.N.A IS THE SAME…
SHE WAS SO ILL…I WAS AFRAID WE WOULD LOOSE HER…BUT I SHOULD HAVE KNOWN…WHAT A SILLY IDEA….SHE IS HERE FOR A REASON….
HER NAME MEANS BELOVED…AND BELOVED SHE REALLY IS …..
February 15, 2020
I knew Amy before she was the person before her illness. She was amazingly strong, beautiful and intelligent at a very young age. I did not know the intent of her illness before this article. Her humble mindset masks the brilliant and kind person that she is. Thanks for sharing her story.
March 23, 2019
linda laflamme neska
Bravo! to a hero. You could have given in, given up…but your positivity and your love for your husband and children and your self and The Creator pulled you thru to who you are today. Bravo for your outlook. And I love how you knew you were going to do this for those who were so important in your life. Mazel Tov.
March 23, 2019
Wow, so inspiring! I can clearly understand your distress about the heels, although I’ve never been able to wear them. I just window shop all those gorgeous shoes.
And I also have developed drop foot…
March 23, 2019
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