Ilysa's Story: A Quadruple Amputee's Winning Battle to Reclaim Her Life

Ilysa Winick at home in January 2017, half a year after nearly losing her life to a rare blood disease and the five surgeries that left her with amputations six inches below the knees and two inches above the wrists. On the table is a second set of prosthetic hands. One set is for finer tasks, the other for stronger gripping. Photo: Carl Glassman/Tribeca Trib 

Posted
Jan. 11, 2018

llysa Winick is the mother of boys 8 and 6 and founder with her husband Steven Winick of Reade Street Prep in Tribeca. Against all odds she is winning her battle for a normal life after suffering a near-fatal blood infection in June 2016 that led to the amputation of her hands and feet. It also left her with end-stage renal failure, which required dialysis five days a week. A kidney transplant last August, the gift of a stranger now friend, Catriona Ni Aolain, freed Ilysa from the treatment and from the fatigue, sickness and countless hours that went with it.

Over the course of about a year, I periodically met with Ilysa and Steven to record, in interviews, video and photographs, the Winick family’s story as Ilysa continued to reclaim her life as a mother, wife and business owner. It is the story of extraordinary strength and determination in the face of challenges that cannot be imagined, and it begins on June 14, 2016.

— Carl Glassman, editor

 

“A sharp, burning, debilitating pain”

ILYSA We had just come off a big weekend celebrating our son’s 7th birthday with my sister and friends. Monday evening I felt tired, and the next morning after sending my kids off to school, I got into bed. By midday I started having a lot of pain in my hands and my feet. A sharp, burning debilitating pain that increased in intensity.

I called Steve and told him I needed to go to urgent care. By the time he came home I couldn’t walk and was screaming in pain. At the urgent care they said I had the flu and wanted to give me Valium or Xanax and go home. I insisted they call an ambulance and I checked into the hospital. In my wildest dreams I would not have envisioned what was to happen next. I remember waiting at the hospital, screaming, somebody helping me to the bathroom, and then blacking out. When I awoke, it was a month later.

“They thought I had a very slim chance of surviving”

The doctors, I later learned, found bacteria in my blood; my whole body was starting to shut down. My blood had stopped flowing to my extremities. I went into septic shock and toxic shock, and the doctors induced a coma. They thought I had a very slim chance of surviving.

STEVEN It was this crazy whirlwind where the curtains are being drawn across everything and I have a doctor who I’ve never met before telling me my wife is really sick and I need to call her family. I’m thinking about her and about the kids and about her family, and how do you make that call and what do you say.

The doctor told me the survival rate was less than 10 percent in cases like this and I have to be prepared. When I heard that I just needed to sit down and take a moment and try to process this—and cry.

“If I knew she was going to lose her hands and feet…”

Over the course of a couple of weeks you would see her hands start to get a little bit green and then darker and darker. At first they said she might lose fingertips and then it was a finger. Looking back on it now if I had been told outright she was going to lose both her hands and her feet, I don’t think I could have taken it. I don’t think anybody could.

ILYSA They were supposed to just take the fingertips and that was the first surgery and they wound up taking my fingers. The second surgery was to take my hands. And the third surgery was to take my feet. Fourth surgery was a skin graft and I don’t remember what the fifth surgery was.

STEVEN The recommendation from our prosthetist for the legs was that for the best mobility it has to be about six inches below the knee. It’s a lot harder to balance if you bear all your weight on your ankle than having to bear it right below the knee where you have thicker stronger muscles. So when they did the legs they removed more, which was crazy to contemplate but we had them remove all the way to that point so that she would have the best possible mobility and be able to be as athletic as she was before.

The surgeons and the prosthetists all agreed that for her hands, the best possible result, if she was going to wear prosthesis, was to remove the wrists.

ILYSA I was involved on a very cursory level. The first time I heard about my hands was on the operating table.

STEVEN It’s so hard to try to make these decisions with someone’s best interests in mind.

ILYSA It's unimaginable.

“I was focused on getting the hell out of there.”

ILYSA I was really aggressive about the timeline because I was focused on getting the hell out of there and making it to my best friend’s wedding. I was determined to be at that wedding and I wanted to have all the prosthetics.

I bundled surgeries and did things a couple of days apart which was really aggressive and really hard on my body, in part to get out quicker.

My doctors did not think I would make my deadline, and they were trying to manage my expectations about what I would be able to do and when I would be able to do it. The prosthetist thought I could go to the wedding if I was willing to really work hard. Typically it takes somebody with bilateral amputations of the legs a minimum of six months to walk. I did it inside of two weeks.

“I've got a new set of prosthetic legs and hands.”

For months I had open wounds so I had to get bandaged and wear a special antibacterial sock and this silicon liner that went all the way up my thigh. Then I had to wear the prosthetic on top of that along with what's called socks that look like knee pads.

So I had layers and layers of crap on and then you have to walk in it. The best I can compare it to is it feels like walking on stilts and it’s squeezing you and it’s hot and uncomfortable and balancing is so weird and unnatural. Your pelvis has to be totally thrust forward at all times and your shoulders totally back or you’ll lose balance. And my foot can’t do what a regular foot can do because I don’t have a proper ankle so I have to make sure I’m aware of any change in the grade on the sidewalk.

A new set of prosthetic legs and a new set of hands have been really great for me. The legs are about half the weight so getting around is easier. They’re more agile so they allow me to move faster and I move more confidently. I've got a lot of stamina and my distance is really good.

I’m so fortunate to have these things because without them I’d be way less able than I am. I can feed myself, brush my teeth, wash my face, write emails. I can use a fork, hold a Starbucks cup without crushing it. I can cook.

But as many tricks as I’ve learned, I can’t hold my child’s hand and feel a response. That's really hard, and I can never replace that.

“Pain is background music for me.”

I’m still always in pain. Thats just background music for me. Some of it is phantom pain, some of it is not, but all of the nerves have been severed and it just kind of feels like if your hand or foot falls asleep but you can’t wake it up. It’s a bad feeling. Like right now I have pain in my big toe. I’m moving my index fingers right now. Like everything still has a home. There are more options for pain medication available to me now that weren’t then because of the dialysis before my kidney transplant. I saw a pain specialist group and they tried some stuff that didn’t really work. I will be exploring with a palliative care group to see if maybe they could take a shot at it; I’m still looking for solutions.

“We’ve come to learn the value of community.”

The community has been overwhelming with support in ways I couldn’t even begin to imagine. It feels like it’s endless.

Parents from the PS 234 community, the Reade Street Prep community, neighbors, friends of friends, someone I said hi once to in the gym, a neighbor upstairs who I have never met. I got hundreds of emails, letters, text messages.

For six months, people signed up to make meals for us. There was even a waiting list. Many people got tested to be a potential eligible kidney donor. I am so grateful.

Lisa Ripperger, P.S. 234’s principal was terrific. She emailed the entire school about what was going on and invited them to participate in one of my fundraising events. We created a foundation and raised a great deal of money. Unfortunately, expenses are really high and we never get reimbursed for anything so you can burn through it.

STEVEN We’ve really come to learn and understand the value of community in a way that most people take for granted. I’d like to be able to say thank you to everybody who has been part of our support system, whether friends or strangers or passersby or whoever. In addition, the amount of empathy that we feel from the community towards us is touching in a way that is really familial.

ILYSA I got a lot of messages in which people said, “If anyone can deal with this you can. Ive always been a person of great determination and somebody who has been able to overcome obstacles. Though this is a much harder challenge than any other kind. Fitness was one of the great passions in my life. I’ve been getting up at 5 a.m. for countless years and I go to either Equinox or more recently to Exceed and Flywheel, six days a week. My core strength was really superior. That saved my life.

Even in the hospital I created a workout for myself that I did every morning for about a half hour before breakfast. I had some hand weights strapped onto my forearms and I would try to work at it each day. Your muscles atrophy a lot, especially when your body is in shock and collapsing into itself. Whatever muscle tone you have counts as part of the fight.

I also befriended very kind nurses who I asked to help me do my makeup and hair. I made a decision one day a few weeks after I woke up that I was going to live like I lived before. I worked out in the morning. I looked a certain way. I get dressed in the morning. That’s what I was going to continue to do.

Ive done a lot of crying, but I try to smile.

I have different categories of goals. I have athletic. I have independence goals, personal care and hygiene goals. Sometimes it’s just mental health, to get up the next morning and have the strength not lay in bed all day, and I've been able to do that, which I think is a feat. I used to drop Ben off at school every day and pick him up. So picking him up the first time from school was a personal milestone.

I’ve been incredibly conscious about the way I look and the way I am perceived, and seeing people, shaking hands and schmoozing was uncomfortable for me. Getting past that is a big deal but it does get a little bit easier every day. I’m not thinking about it every second of the day anymore.

I believe that if you smile, it helps you through the day more than if you cry. I’ve done a lot of crying but I try to smile, too, and joke around and put humor in the situation because you have to.

“My kidney donor felt like a close friend.”

In May I learned I had a donor, Catriona Ni Aolain. It was the same day another person backed out.

We met the day before the August 9 surgery. That was at her request. I was really nervous to meet her. I didn’t want to do or say anything that would result in somebody backing out again. But she was pretty anxious and it was the last step that she needed to take so we met and it was like an unbelievable thing. I think it’s obvious to anyone she’s an incredible giving person. But beyond that she’s also very likable, very much somebody I would have been friends with anyway. It just felt so natural and organic and she felt like a close friend that I’d had for a long time when I met her. Now I talk to her most days, we had drinks the other night. I see her a lot. Our kids are friends, they call each other cousins. It’s really remarkable.

The transplant has given me a lot of my life back. I’m off dialysis, which took up hours and hours of my time. I have a lot more energy. But you have to take anti-rejection pills the rest of your life and a lot of them come with different side effects. We’ve had to figure out what the right mix of cocktails is for me. Since I’m not a typical transplant candidate, it’s been more of a balancing act, moving from one medication to another and then taking away something and adding something else.

“In my darkest days, my kids keep me going.”

Now I can take the kids to school every day and pick them up. That’s the biggest thing. I think of it as such a privilege. I try to participate in any of their activities. In my darkest times it’s my my kids that keep me going. I want to be everything I can be for them. And I think I do a pretty good job of doing that for them. I’m Ryan’s class mom and I put together all the parties for him.

And I still have a business that I run. I go out socially all the time.  But I wish I was doing it more second nature, where everything I did wasn’t quite so challenging. I’m challenged by every movement I make. That’s something that’s very easy to mask for me. But sometimes I almost feel like a fraud doing it. It’s like a costume I put on. Literally. It requires assembly. But it’s what happens behind the scenes when I disassemble. That’s where the toughest work is.

And I still want to be a lot more independent. I want to be able to run around the park and chase my kids. I want to be a able to take care of myself, take care of my kids without being babysat. So I’ve come a really long way. I may have exceeded any benchmark but its not really good enough. It’s not where I want to be—a place of independence and peace.

“I feel so fortunate.”

What I most want to express is my gratitude to Catriona and her family and their incredible generosity and kindness. I feel fortunate to have my family and the community and friends. It’s an endless and really trying journey, but they’re what kept me going and supported me all this time.