Northwestern University Feinberg School of Medicine

Northwestern University Prosthetics-Orthotics Center

Orthotics Model Cindy Keane

Orthotics Model Cindy K.Cindy Keane is cheerful, pleasant and kind-natured. When I met Cindy, as a preamble to our conversation, she laughed and confided, “I’m a baby. I like easy stuff.” However, Cindy’s story demonstrates that she has met many difficulties with courage and strength. Sociable and interactive, she speaks engagingly about her son, her love for her family, and the challenges of living her life with a physical disability. This is Cindy’s story.

Tell me about the family you grew up in:

As a child, my family was my mother and my father, my three sisters and two brothers. My mother had many kids, so she stayed home to take care of us. My father went out to work. In order of birth we were: my brother Walter or Wally, Sherry, who lives near me, myself, Heidi, Nicholas who we call Nikky, though now he goes by Nick, and my youngest sister, Tamara who works as nurse at a hospital in Chicago.

My last name used to be Tarasiuk. It’s Ukranian. My grandmother, that’s my father’s mother, used to correct our pronunciation. My grandmother took us to a church near our house and we learned a lot. We were good kids and even as adults we don’t even swear. Even now, I don’t like to hear swearing. My grandmother lived in Ukraine, so she spoke Ukrainian. During the war, she had 3 little kids, and they escaped to Chicago. My mother’s family is German, French and Polish. So I am part of all those!

Now I live by myself. My mother, sister and I live in the same neighborhood. My mother lives 2 houses away, and my sister lives 6 houses away.

Tell me about your school days and growing up:

I did not like high school, but I graduated. I didn’t like getting up early and walking all the way to school. I had to do a lot of walking. My brothers and sisters went to the same high school. We were close in age, so some my brothers and sisters were at the high school when I was attending. I had a great time growing up. In the winter, we built snow forts and threw snowballs. It was so much fun.

What was a low point in your life?

I graduated from high school in June 1982, but by December that year I was getting sick. I had a brain aneurysm. I remember that I had a headache, but I didn’t tell anyone about it. It got worse and worse. I drove to the store for aspirin. In March my boyfriend took me out to eat, but I couldn’t eat. I began losing weight. My condition got worse, but still I didn’t say anything. It was a gradual process. By January 1983 I was in a coma.

I remember that I couldn’t sleep. I felt a burning sensation in my body. I was becoming paralyzed. I had tried to sleep but I didn’t feel well. I didn’t know what was wrong. Still I didn’t say anything to anyone. I couldn’t go to work. I tried to get up. I tried to walk but fell down, paralyzed. I cried. I was quiet. I tried to telephone but gave up. I waited. Eventually, my sister found me. I was in a coma for 2 weeks after that.

My youngest sister, Tamara, found me on the floor. At that time, she was only 16. Now she is a nurse. I don’t remember this, but when I was in the hospital, they said I tried to get up. Even though I was still in a coma, I ripped out the IV tube. It must have been bothering me. My weight dropped down to 89 pounds. At that time, I didn’t like food. I could not get accustomed to the taste. Nothing tasted good. I ate only peanut butter and jelly for 2 years, for breakfast, lunch and dinner. Gradually, I expanded my tastes. Now I can eat whatever I want and food tastes good again.

After I came out of the coma, it took more than a year to tolerate getting a haircut. I couldn’t stand for anyone to touch my head. It is still sensitive. I have to be careful not to fall because this area of my head is soft, unprotected by skull. The doctors wanted to put a plate in my skull, but my mother did not agree.

When I was in the coma, I remember something like I was dreaming. A voice said, “You’re OK now.” I heard an angel, or maybe God, saying “You are going to be OK.” In that state, I was like I was sleeping and I was talking to someone. But I could not actually talk at that time. I always remembered that dream. It was so clear. But, it took a long time before I could use words to express my memory of that dream.

I had a left side aneurysm. It was like I had an egg on my head. I was so frightened. I was only 19. I tried to hide it and did not tell anyone about it. If it were now, I would tell someone. I still have trouble speaking. If I have some paperwork, sometimes I read it and get it wrong. So my mother or sister read it and explain it to me.

I got married 21 years ago, but we are separated. I had a baby when I was 28 years old and I raised the baby on my own. His name is Patrick. Now my son is 21 years old. He is in college. He’s doing great. I am so happy. He is a senior now. He studies accounting, also business. He’s very, very smart. He’ll come home for Thanksgiving.

Three months after Patrick was born, I separated from the baby’s father because he had some behavior problems and I couldn’t tolerate that. Actually, we are still separated, not yet divorced. We’ve been separated all these years. Sometimes I see his parents, Patrick’s grandmother and grandfather, but I don’t spend time talking to Patrick’s dad.  

I first met him when I was in rehab. He also was in rehab because he had had an accident. He had been drinking, using substances, and blacked out. He crashed into a tree. He was in a coma for 1-month. He has memory loss.

Anyway, I took care of Patrick by myself and my mother and sisters helped me. Patrick’s father came to visit but he couldn’t remember enough to be reliable and he couldn’t do anything to take care of him. Once when my leg hurt a lot, I asked him to take Patrick to the park, but he said he would rather go home. So I took him to the park by myself. It wasn’t easy for me to take care of him. I fell a lot of times while I was taking care of him and carrying his things.

I couldn’t drive because of blurred vision in my right eye and right side hemiparesis. So, we walked or took the bus everywhere. I took my son to the museum and carnivals. We walked everywhere. I took him to the library too. He learned how to use computers by himself. He did his homework well. I remember once I asked him if something was right. He was right and I was wrong. After that, I didn’t try to help him with his homework. My mother helped him with his homework. He is very smart so he did not need much help.

What were the high points in your life?

I was so happy to be pregnant. When I was 6 months pregnant, one of the doctors asked me, “Why are you pregnant?!” He was worried because I was taking prescribed medication and he feared it would hurt the baby. At 9 months the baby was not moving, so they induced labor. I was in labor for 10 hours. It was so painful! I said, “Let’s do a Caesarian and get this over!” My sister Heidi and Tamara were helping me give birth.

Finally I got an epidural and eventually gave birth to Patrick. Most people are so tired after they give birth that they cannot do anything. But, I was so eager to see my baby. I got up, put on my leg brace and went to see him. I was so happy!

I was very happy, but scared to hold him because of paralysis in my right arm. It was hard for me to carry him. I went to rehab and they made a sling baby carrier so I could carry my son more easily. One time I hit my foot and brace on the playpen and we both fell down, but fortunately he was OK. In the past, sometimes I had to be hospitalized. Then Patrick would spend time with my mother, his grandmother. I can’t believe that I did all that by myself. I was very strong. And I am not really strong.

Another happy time was when I first met Patrick’s father.

How do you respond to people who don’t know what it’s like to live with a disability?

Kids stare.  Some people ask me what happened. I tell them what they want to know. I can talk about everything, even my age. It doesn’t matter. After we talk, they feel more comfortable. They can understand me better. But, when I am too tired, I cannot talk well. Also, if I get up too early, I can’t talk well. I have to be careful to get enough sleep. I always sleep well. I love sleeping. I haven’t had a seizure for 10 years.

I met many different kinds of people in the rehab groups. Some people have a sense of humor and others cannot adjust. When I see someone who is sad, mad or swearing, those are people I want to talk to. Even in the gym, when I see people struggling but not making progress, I tell people that I am walking. I had to re-learn everything. I try to give them hope that they will improve. Some things seem so easy, but it is so hard when you have to relearn how to do it. At first, I didn’t even know how to use or understand an elevator. Some people tell me that I look younger than I am. They don’t know how long I had to work to get better. They will have to work really hard to get to where I am too.

How have you remained the same over time?

Getting sick was a low time. I had just graduated from high school when that happened. I was angry and unhappy for about 4 years. I changed after I was in my rehab group because I met a girl with no limbs who spent all her time in a wheelchair. I thought that I am lucky. I realized I am fortunate. Now I am satisfied with what I have.

I am happy for everything in my life. I was happy growing up in a big family. Now too, I am so happy. Everybody knows that about me. I love laughing. My friends and I are always laughing. Laughing is great. You feel better when you laugh.

After I came out of the coma, I was mad and grouchy for 4 years. Later I got better. Now, I am really happy. From age 20 to 24, I was mad that this had happened to me. Even when we were going to the beach as a family, I was grouchy. I was grouchy for 4 years. I became happy again because I am living. They told me that my blood pressure had been really high with a fast heartbeat. I could have died, but I survived that aneurysm. God saved me to live. So, I became grateful and happy. I think about that and I want to become a better person.

What are your plans for the future?

Now I’ve raised Patrick, so it is time for me to rest. I worked hard. I used to go shopping by myself. I remember giving him his bottle. He was a very happy, smart baby. When he was only one and a half years old, he’d tell me to go up the stairs first, then he’d run the opposite direction.

We did everything together. I even tried to play baseball with him. Patrick helped me. He learned to become very independent by helping me. I don’t cook. My mother does. I remember about 9 years ago, Patrick said, “I want to bake a turkey.” He cooked the turkey and my family came over to my house for Thanksgiving dinner. He did a great job and the turkey was tender. In two weeks, he will come home for Thanksgiving break. At Christmas time, Patrick and I usually had a tree. Now he is not here too much. He stays near the college during his one month winter vacation.

How do you spend your free time?

In my free time, I like to watch TV. I’m trying to start walking again so I can lose some weight. I gained extra pounds because I eat and sit. I don’t eat while I’m watching TV. I go to the gym on Monday, Wednesday, and Friday. It’s very crowded now. The new gym is so popular. You have to wait in line to get in. Scheduling the CDT to return home can be a problem if you have to wait to get into the gym. I schedule my van so I won’t have to hurry when I’m in the gym. Also, I have to wait until someone positions my foot. I like the hand bike. I like the treadmill. I like doing these exercises. My left side is strong. I exercise for about 2 hours or more and sometimes after I am done, I go back to treadmill.

What are your goals?

I will finalize my divorce. Also, I want to become a better person. I don’t go to church much, but I watch TV or listen to radio about faith and belief. I talk with my sisters. I am family centered.

When did you come to NUPOC?

Nine years ago I began to volunteer at NUPOC. Mark Edwards made my orthosis and he introduced me to NUPOC. Mark told me he wanted everyone to see the new brace he made. I love Mark’s brace. It’s perfect, but it’s getting old. Soon I’ll need a new one. I hope it will be as good as Mark’s.

I made friends at NUPOC, especially with Luella, another educational model. She is really nice. She speaks well with people, even if she doesn’t know them. I’m glad that I came here. It’s been a good experience.

(Interview and story by R. J. Garrick, PhD)

Become an Educational Model

If you have a physical disability or use a prosthesis or orthosis and would like to volunteer as an Educational Model at NUPOC, please contact Ken Harris.