“On 4/3/15 I woke up like the picture on the left. I’d had a stroke in my sleep which caused a palsy in the 3rd nerve of my brain, causing my right eye to swing out. I saw two of everything and could only see straight if I closed one eye. It’s taken over a year and a half, 3 surgeries, an ocean of tears, and the desperate need to regain my life to get ME back. I took the pic on the right just after taking my new SoulCycle instructor photos — hence the incredible and very fake lashes. I never imagined having the courage to share the ‘before’ pic, but think it’s important to recognize and celebrate the journey, no matter how painful. Unlike so many stories, this one has a happy ending, one that will hopefully inspire determination and hope!”
-Emma Zaks, Facebook post, November 18, 2016
This is the story of Emma Zaks, a bubbly, energetic, and very popular SoulCycle instructor. Those who ride with Emma watched this healthy and fit 33-year old woman go through an unimaginable two-year journey — becoming increasingly ill with debilitating symptoms, both gastro-intestinal and neurological, that ultimately resulted in a stroke.
On and off the SoulCycle schedule at first, Emma began subbing out her classes for other instructors. Then followed a long absence. She would later return to teach — a patch on one eye and face swollen from the steroids doctors had prescribed for devastating symptoms no one really could explain. An autoimmune disease of some sort was the rumor. As is her nature, Emma remained her upbeat self through it all, or so it appeared, never letting her riders see the pain and fear going on inside.
Luckily, this story has a happy ending. After her illness was finally diagnosed and treated, Emma started posting little bits of her journey on Facebook. So moved and overwhelmed by her strength and bravery, we asked her to tell us what happened from beginning to end. This is her story in her own words…. and her Facebook posts.
“When you’re 33 years old and teaching on average 18 SoulCycle classes a week, you don’t expect your body to fail you. And then it did. It started slowly with weeks of digestive problems, and ended with a terrifying ambulance ride to Mt. Sinai. My first trip to the ER at the end of January for unbearable stomach pain had ended with a discharge hours later after multiple inconclusive test results for ailments like kidney stones and food poisoning. I found myself back at home, sicker than I’d ever been, and without a single real explanation. For two weeks, I lived and worked with continuing pain”…
It all started with major stomach issues that began in January of 2015. I had been in and out of the ER, and was finally admitted to the hospital in February. I had left my class in the middle of “cuing” a hill climb, to throw up in the closest bathroom. Unable to walk or breathe through the pain and nausea, I took an ambulance to the ER. When I was admitted later that night, the diagnosis was vague: some undefined form of modern dysentery. They ran every test in the book, from Colonoscopy to Endoscopy to CT scans. Everything came back inconclusive. I was put on huge amounts of IV antibiotics and steroids, and sent home after six days as an inpatient, despite too many unanswered questions.
Knowing what I know now, I wish I had pushed harder for more answers, but who was I to question these doctors? I hate confrontation and wanted to be a “good patient” who was liked. So I took the prescriptions and advice to rest and went home, hoping for the best. Needless to say, things didn’t get better.
“After my stay at Mt. Sinai I went back home to my boyfriend’s apartment to fully recover from whatever infection had wrecked havoc on my system (see top pic of the dude and the baby). Still weak, and still having stomach issues, I knew something wasn’t right but thought it would get better with time and rest. I went back to work and taught for a few days before leaving for a vacation I’d luckily planned months prior. The crazy part is that all seemed fine in Turks and Caicos (see bottom pic, if you haven’t been, start saving, and go, it’s beyond worth it). Sure my stomach wasn’t normal, but it was never normal so I was used to that, but the vomiting had disappeared, and I had more energy! I was on what my doctors called a ‘low-residue diet’, translation: bland, low-fiber foods, ie. PASTA. HALLELUJAH! For the first time since childhood I was eating every white carb in sight without an ounce of guilt. I now refer to this vacation week as the bliss before the s***storm”…
On April 3, 2015, I had a stroke. I got back from vacation in March of 2015 and went back to work thinking everything would be fine. To make a long story short, things only got worse. My own personal apocalypse happened.
I woke up in the middle of the night to use the bathroom, looked up at the ceiling and thought, ‘Huh, there are two lamps on the ceiling. Strange. Maybe I’m just sleepy.’ I got up and figured I was dreaming or that my maybe my eyesight was getting worse. What had actually happened didn’t register until the morning when I woke up and there were still two lights on the ceiling. I started to panic as I realized that everything was blurry. I ran to the closest mirror and saw one eye looking straight ahead and one eye going off to the right, all the way to the very corner of my eye. I didn’t know if I was hallucinating, but my greatest fears were confirmed when my boyfriend, Geoff, now fiancé, saw me and immediately started crying. I guess I just went into survival mode. I grabbed my phone and called my doctor who said to go straight to the ER.
The next hour is hard to recall because I just remember focusing on keeping my right eye closed so I could see properly. If I could see straight, I wouldn’t panic. It never occurred to me that what had taken place overnight would turn into almost two years of hell.
“It’s all about maintaining humor. Luckily I had incredible friends who were there to make me laugh when all I wanted was a strong sedative!!!!”
We got to the ER and they didn’t have a clue what to do with me. I’d just been there with stomach problems and now I’d come back with some bizarre neurological episode. The neurologists assessed me and found nothing. The spinal tap came back clean, and so did the MRI. So they released me with more steroids and zero explanation. At this point I’m thinking, ‘How is it possible you are sending me home? I’ve just been in the hospital, this hospital, and now this strange thing has happened. This is not normal. Something has happened.’
Confused and frustrated, I returned home only to have my stomach flare up again. At first I chalked it up to anxiety, but then it got worse and I couldn’t stop vomiting. Back to the ER I went and this time they admitted me. At this point my stomach had gotten so bad that everyone was just trying to get that under control. No one was focusing on the fact I had a patch over my eye. It was very bizarre.
Finally with an X-ray, the simplest of all tests, they were able to find what appeared to be a stricture in my small intestine. This is when your intestines have begun to twist around themselves, preventing anything from passing through. At this point, the doctors realized that this wasn’t a gastric infection and decided that their only option was to do exploratory laparoscopic surgery. Possible outcomes? They’d find something conclusive, or they’d find nothing and I’d have had surgery for naught. So I said, “Sure, open me up.”
For a brief moment I was face to face with mortality. All of a sudden you’re not the invincible person that you thought you were. I thought, ‘I’m too young for all this.’
“Almost two years ago and this photograph still makes me cry. My dear father would come to the hospital everyday, bring his newspaper and keep me company. He’d try and leave to go back to work but within minutes would reappear claiming a cancelled meeting. All I wanted was to let him know I’d be ok”…
They opened me up and found what my surgeon described as an “intestine that hadn’t seen oxygen in years”. They removed 10cm and put it back together (fancy term: a small bowel resection). Once stable, the neurologist started coming in asking why I was on the GI floor. Now that they figured out my stomach, they could focus on what was going on with my eye. As far as anyone was concerned, I was being treated for two completely separate ailments — one gastrointestinal, one neurological. The gastroenterologists were focused on my stomach and the neurologists were focused on my brain, but neither were communicating.
While waiting for the biopsy test results, my neurologist sent me for another MRI, but this time they looked at “thinner slices” of my brain, in case the first MRI had missed something. The MRI results came back first, and showed a very small lesion in left section of the brain that had caused the palsy in my eye. It was a mini stroke (full blown leaves half your face paralyzed). This affected just one nerve. This information on its own led doctors to think I had MS. Rather than communicating with each other, GI talking to Neuro and Rheumatology, they just got the MRI results and shared this terrifying theory with me before the biopsy results were in. My Mom has MS, and I’ve seen first hand the damage it can do. I thought, ‘Yup, this is it. What you’ve been dreading your whole life has happened.’
Finally… one of my doctors came into my room and explained that combining the biopsy results with my blood tests and my MRI, she’d come up with a diagnosis of an autoimmune disease called Wegener’s Vasculitis. Vasculitis is any inflammation of the blood vessels and can lead to problems anywhere. The stomach and eye were related! It was all caused by one thing. The inflammation constricted the ability of blood to flow, which caused the swelling in the brain and the stricture in the small intestine. The treatment for this would be intense steroids and infusions of a new drug called Rituxan.
“April 16th, 2015 I received my first dose of Rituxan. Doctors and nurses kept referring to it as ‘chemo’ or saying things like ‘the chemo machine’. I guessed this was because Rituxan is a drug often used in a lot of chemotherapy treatments. That was that day I realized this wasn’t gonna be a quick fix, this was something I’d have to deal with for the rest of my life. That was the scariest part, not knowing how or when this would end”…
I received my first dose of Rituxan April 16th, 2015. They wheeled in the equipment at around 3:30pm and hooked me up while a nurse sat at the machine monitoring my vitals. Within the hour, I started to feel pretty crappy. I couldn’t cool down and starting sweating like crazy. My blood pressure spiked to 160/120 which is insane. My attending came in, lowered the infusion, and said that if my blood pressure didn’t go down, she’d have to stop the treatment altogether. Thankfully this didn’t happen because my rockstar friend, Lauren Gershell, thought to order a fan from Amazon Now. FYI, I’ve not suddenly been sponsored by Amazon; this is a completely true story. The fan arrived within the hour, my blood pressure went down, and I was able to complete the final infusion at 11:30pm that night. At that point I’d been in the hospital for almost two weeks and was stable from surgery and the infusion. I somehow sweet talked my way outta there on the 17th of April.
“I’d force myself to put on my largest sunglasses. I’d run out of nude colored patches and had to resort to leopard. At this point I was 95 lbs, weak, and completely off balance having the use of only one eye. I’d walk the 3 blocks to where I’d go for Rituxan infusions and be exhausted. In a matter of months, I’d become a shell of myself both externally and internally.”
At the end of April, back from the hospital, I had one goal in mind. Get back to work. I would go to the gym everyday. I started by walking on the treadmill, one hand holding on. I couldn’t think about my eye. Getting back to work was my only focus. I had lost so much strength. I had to rebuild that. I was doing what I know. I knew how to work out. I could run holding on, then run not holding on. I was trusting myself again and building that confidence.
The lack of balance with use of only one eye is insane. You get used to it to the point you can function, but it’s never something you don’t notice. The doctors believed it would get better but couldn’t guarantee that my eye would go back to normal or that my vision would correct itself. It was going to take time.
Two different doctors, who shall remain nameless, told me that there was nothing they could do to help my vision. One asked why I wore a patch and I said, “Because unless I close one eye, I see double, and with the patch, I don’t have to focus on keeping the eye closed.” He responded by suggesting I get Botox to paralyze certain muscles which would then keep the eye closed for me! I pretended to take him seriously, left the office, and cried.
I started to mentally prepare myself for a permanent life with double vision. I figured I’d eventually get used to the patch, I’d regain my balance and as long as I could talk and walk, I could teach! I NEEDED to teach. If I could call myself a teacher again, perhaps I’d be able to let go of the patient I’d become. If I could get back to work and a life of independence, maybe I’d stop pining for the safety of my hospital room. The nurses that would come in to take blood in the middle of the night weren’t a nuisance but a reminder that I wasn’t alone. If something didn’t feel right, I pressed a button and a doctor would reassure me not to worry. Back in the real world, I felt like an alien landing on earth for the first time, confused and frightened. Everything from crossing the street, to taking a shower was a struggle. When I’d find myself especially desperate I’d use this mantra: “Every day, and in every way, I am getting stronger and stronger. Every day, and in every way, I am getting healthier and healthier. Every day, and in every way, I am getting BETTER AND BETTER”.
“On behalf of #transformationtuesday I bring you my personal experience with steroids. After my stroke in 2015 I was put on enormous amounts of Prednisone, and by enormous, I mean roughly 10 times the normal dose given. Not only did my face explode but I felt and probably acted like a complete lunatic. I know, I know… not much has changed”…
Mid-May 2015, one month into recovery, I met with Julie Rice, one of the co-founders of SoulCycle. I was 95 lbs. at this point. I walked in with cane and eye patch and said, “Hi! I’m ready to come back to work!”
First she cried, and then she’s like, “You’re insane.”
“Yes, that’s why you hired me.”
“You need to heal. Your job’s not going anywhere. You could wait until September.”
“No, that’s not happening.”
We picked a tentative date in June. Six weeks after the stroke, I was back to work — swollen from steroids, with a stick body. The support was amazing and incredible. The love was amazing and incredible. The toughest part was how to answer people’s questions. I didn’t have the answers. Nothing was happening soon enough. I didn’t want to take off the eye patch and scare anyone. The eye was still horrible. Damage had been done to the nerve, and anytime there is nerve damage it takes forever to heal.
When you can’t look someone in the eye and there’s something visibly wrong, the dynamic changes in the conversation. It’s so palpable. I was a bartender for years. No one wants to hear the bartender’s problems. If I had to cry downstairs and come back up I did. You just don’t do it in front of people. It wasn’t the right place. This was my place of work. I didn’t want anyone’s pity. I felt like a completely different person. I felt withdrawn. I felt shy — a word I would never have used to describe myself. I’m the person who’ll make conversation with anyone. I didn’t want to meet anyone new. I hated the world. My god!
“That time my guy (now fiancé) wore a patch around Atlantic City so he could understand what it felt like. We were so new when all of this started and he was thrown into the fire.”
The eye was becoming less and less noticeable. It was starting to heal. I started wearing glasses with a “fogger”, that allowed me to only see through the right lens, and encourage my brain to ignore the left eye. It was better than the patch which was so visible, and allowed light to come in. Though different doctors had said nothing could be done, I found two doctors at Weill Cornell, a neuro-ophthalmologist and an eye surgeon who work together. They said they could fix it, but we needed to wait until it was done healing on its own. They needed to be sure it was not going to change. If you do surgery and it changes you’re fucked. More waiting. Just more waiting. At least six months and then a maybe. Not a surgery date but a maybe…
I was devastated. I thought I must have been some tyrannical person in another life because nothing is working. All the build up. All the prep. I had taken off week from work. It was heartbreaking. I’d have to tell everybody the story, “Nope, it didn’t work.”
FINALLY we schedule the surgery for May 9. I went in for the operation. I was dreaming of opening my eyes and seeing straight, but when they woke me up they said, “We were unable to do the surgery”. I thought they were joking, “Oh, c’mon stop it!” Long story short: systolic episode. My heart stopped beating. It was a reaction to the anesthesia. Who expects a 34-year-old fitness instructor to have a heart issue??
We went to see a cardiologist and they found a slight abnormality. I could undergo surgery but they needed to make sure I was prepped accordingly. They needed paddles ready to jump start my heart. I felt like my parent’s old Subaru that kept dying. We rescheduled for May 27. Luckily it was not that long, but I was scared — not just would I wake up and be able to see straight, but would I wake up?
May 27, I 2015. I woke up. I was in incredible pain, but finally… it worked! I had sutures in both eyes. The doctor had said we could adjust three muscles in the right eye but this was risky. Instead he suggested one muscle in the left, and two in the right, that way he wouldn’t be putting either eye under too much stress.
They tested my vision and adjusted the sutures while I was awake! Things were starting to come together, but once the muscles get fixed, the brain has to readjust. I had to focus mentally on creating one image. No surgeons can align two eyes perfectly, but the brain makes up for the human error. No one’s eyes are aligned perfectly.
“I’m a day late but in light of Thanksgiving, this is gratitude post. This pic shows Dr. Richard Levy and I having a laugh the day I got my sight back! On May 26th 2016, I had Strabismus surgery to correct the damage caused by the stroke I’d had in 2015. Rich, as I now call him, has become an avid SoulCyclist and loves to tell me to stop thanking him for correcting my vision, or as I like to say, giving me my life back. I no longer have to navigate the world with one eye or with double vision! Even the simplest of tasks were exhausting: showering, reading, and forget attempting to put makeup on. Since the surgery, I have to remind myself not to take for granted the everyday activities that used to drive me to tears of frustration. I can now look people in the eye, I can look in the mirror without hating what I see, and I no longer walk looking down at the sidewalk, but can hold my head high without walking into a fire hydrant. Needless to say I’ll be saying thank you to Dr. Levy till the end of time”…
It’s a whole new world. I can look people in the eye again without them trying to figure out which eye to look at. That was always heartbreaking and I didn’t want to make anyone uncomfortable. I see one of everything now but when I get tired or tipsy, I really have focus or I feel images start to drift. That’s how I know I’ve had too much to drink!
Now the challenge is not fearing the other shoe dropping. I’m trying not to let the PTSD and fear creep in. That’s the struggle. I’m obsessed with the author, Bene Brown, who says, “The only way to experience joy is through gratitude”. I now understand what she means. Think about it. I feel so joyful that my eyes have healed. Then in the next second I think what happens if I go to bed tonight and the same thing happens all over again? In order to feel joy I have to say, “I’m just so grateful. I’m so lucky. I’m so lucky.” And you repeat it until you push down that fear. The most truthful answer from my doctor is, I’ll be dealing with this for the rest of my life. There may be future surgeries I’ll have to have, but at least I have the answers now, and someone who will know how to treat me.
Writing about this has been so therapeutic. I have been given this huge gift of recovery and I can’t waste it. I’ll make the most of this because I’ve got my life back. I’ve got my sight back. I won’t take it for granted. I’ll show my “gratitude” by treating my body well because I’ve been given a second chance to do that. I’m going to get in the best shape of my life. I will truly become the best version of me.
