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- November 19, 1990
- Vol. 34
- No. 20
Awakening One Day to a Nightmare, a Young Mother Turns the Loss of Her Limbs into a Triumph of Will
As a teenager, Shapiro had been treated for a low blood-platelet count that had reduced her blood's clotting ability. A splenectomy at age 25 remedied that condition but left her more vulnerable to infection. Later, in 1986, she was diagnosed with chronic fatigue syndrome. By that time she had become a respected designer of computer software for an airborne-instruments laboratory, had married and borne a son. Then came that Memorial Day. The following morning, as her fever and nausea intensified, Shapiro and her husband, Neil, raced to the emergency room of St. John's Hospital, near their home in Commack, N. Y. Unable to get a blood pressure reading, doctors attempted to lower her raging fever by pouring ice over her body. From that moment until nearly two months later, Shapiro cannot recall what happened to her.
As Neil, now 43, and son Jack, 9, waited helplessly, the doctors diagnosed Shapiro's problem as disseminated intravascular coagulation, or DIC, a toxic condition caused, in Shapiro's case, by a bacterial infection and complicated by the absence of her spleen. Within days, gangrene began turning her limbs black with infection. Initially given just two hours to live, Shapiro somehow hung on and two weeks later was flown by helicopter to Manhattan's New York University Medical Center. It was there that she finally regained her awareness and learned of the terrible price she had paid for survival—the loss of her arms and her legs. Three years later, Shapiro talks about her life then and now to senior writer Bonnie Johnson.
My first recollection is waking up from a very bad dream, thinking I was on some kind of boat. I was on an air mattress, which is sort of like being on a boat, and I thought it was a slave ship. Then I thought I was being held captive by terrorists. Every time I woke up, I felt like I was in a different room and with different people. I had no idea where I was.
I arrived at NYU in early June, and my first memories are from the beginning of July. By this time I had had three amputations, both legs below the knee and the right arm just below the elbow. It's very strange when you have a total loss of memory. The doctors think it's a normal response to exceedingly low blood pressure. I also think it's a defense mechanism. I went through surgeries and everything, and I had no idea what had happened. Neil says I actually gave consent for my leg amputations. Several doctors and the head nurse were there to witness it, but I have no memory of it. Neil explained that it was a matter of living without limbs or not living at all, and he says I understood.
I was given morphine four times a day for the dressing changes, and they'd let Neil be there. He used to sleep out in the waiting room because I'd start crying in the middle of the night, and the nurse would have him come in and calm me down. I couldn't speak because I had a tracheotomy. In order to communicate, they gave me this letter chart to spell out words. Neil would say, "Is it in the first line?" I'd shake my head no. "Is it in the second line?" No. "Is it in the third line?" Yes. "Is it this letter?" No. "Is it this letter?" What used to really drive them crazy was that I'd be spelling something out, and before I finished, I'd forget what I wanted to say.
I remember making the decision about my left arm in mid-July. The nerves had died, and I had lost parts of my fingers, and I didn't have a palm. I really felt like my life was over. I was a mess. My hair had fallen out from rubbing against the pillow. My nose was black from gangrene, and I was afraid I was going to lose it too. At that point, it was just a matter of wanting to go on, and to tell you the truth, I really didn't.
I guess what really made me come around was my son, Jack. I thought about a friend who had died in her early 30s leaving two young children. I thought about her kids and whether they would have wanted their mother without limbs or the finality of death, and I decided I'd give it a shot.
Still, as I began to get better, I started sabotaging my recovery. I tried to eat, but then I'd make the food come right back up. I guess that was the only way I could still exercise control over my body. It's devastating to become totally dependent. Little things change, like not being able to scratch an itch or comb your hair. I used to cry a lot, and I had a hard time blowing my nose. I couldn't even read, because I couldn't sit up enough in bed and I couldn't turn the pages.
While I was still in the ICU, I had been fed all this information: "Don't worry. We have artificial hands for you. They're terrific. They can do everything, and they look beautiful." In September I was transferred to the Rusk Institute of Rehabilitation Medicine in Manhattan. At Rusk they gave me these hooks, and they looked so cold and mechanical. The story of the artificial hands was just that—a story. They were trying to encourage me. The hooks were the reality.
The hook is attached to a harness that goes over your shoulder and across your back. By moving your shoulder muscle you put tension on a strap connected to the cable that opens and closes the hook. Also, during my first week at Rusk, they put me into an electric wheelchair with a control that I could operate with my elbow. It was terrific because I wasn't a prisoner anymore. They had elevators, so I could go to the rooftop gardens or the cafeteria or outside to the park with Neil. Eventually we were able to go to street fairs and movies near the hospital.
But every time I was out in public, I was devastated afterward. In the hospital it's a closed environment. People get used to seeing you, even the visitors and families of other patients. But when you go to the outside world, people look at you like you're a freak. I used to get very upset, so we decided to be very selective about our outings because everyone was afraid that it would set back my therapy.
Once I became proficient with both hooks, they said okay, you can go on to legs. My legs were put in air bags and supported by metal cones. They strapped me on a tilt table, and then they would tilt me upright, 30 degrees one day, 35 degrees the next, to get the stumps used to bearing weight. It was a very long process that lasted about an hour at a time and that I found very boring and nauseating. They would have a bucket on hand, and if I pointed to my mouth, they ran for the bucket.
There was another class they wanted me to take involving exercises with weights, but I got so anxious there that I finally stopped going. I also didn't like the cooking classes. I didn't like to cook before...the chopping, the cutting, the cleaning up afterward. As soon as I'd made my third-consecutive successful omelet, I said okay, enough cooking—that's why they invented Chinese restaurants.
But basically I was pretty good with my therapy. I sort of thought of it as my job: This is what I have to do. This is my goal right now. Brushing my teeth was something I had been doing for more than 30 years, and now I had to learn a new way of doing it. If I dropped a fork on the floor, a lot of times there was no one there to pick it up for me. So I had to learn not to drop the fork.
Around Christmastime I finally got my legs, and there were a lot of adjustments to be made. The first time they put them on, they reversed the feet, and so I was standing there and it was like, What's wrong with this picture? First I started on a platform walker with wheels. You balance with your elbows on this thing, and it rolls with you. Then they designed a platform crutch that I could hold on to with a hook.
In the beginning, if I was walking down the hall and wanted to stop, I'd fall down, and the therapist would have to catch me. I could walk great, but I couldn't stop. Later, the therapists put me on a balance board and had me play catch with this ball. At first I thought, What am I going to be, a flamenco dancer on a cruise ship? But when I began walking outside where the ground is not as even, I had an easier time keeping my balance, and I think it's because of those exercises. And once I had the legs, I found it easier to go out in social situations because with slacks or long skirts no one can tell.
One thing the hospital did was let me use an apartment at Rusk called Horizon House. It's for training, and the counters and the bathrooms are wheelchair accessible. Also they gave me driving lessons at Rusk. The instructor helped me not only with my confidence—I took my road test on Wall Street at rush hour—but he helped me redesign the van we had bought just before I got sick.
In March 1988 I was finally discharged, 10 months after I'd entered the hospital. The first skill I practiced when I got home was signing my name, and as soon as I perfected that, I went off with my friend Jill to department stores and used my American Express card. Actually, my signature is very close to what it used to be. They say that's because you write with your mind, not your hand.
Next, we had to figure out what to do with the house as far as adaptations were concerned. The State Office of Vocational Rehabilitation had paid $10,500 to have my van renovated, and they were going to help with the house. But the house had a full flight of stairs, and they advised us to move. Our new house required $50,000 in renovations, and the state paid only $7,500 of that. Our families are helping with the payments, Neil's school passed the hat, and we even raided Jack's college fund. But we decided to fix this house right away and make it the way we'll enjoy living in it. We sort of feel like life is too short, and we don't have this unlimited supply of time. I think that's one of the main lessons we've learned out of this.
At the end of last year, I got two myoelectric arms. They have hands instead of hooks, and they work by minute electrical charges from the muscles in my stumps. I had to go through months of biofeedback training to learn how to use them. They aren't as functional as the hooks, but there are times I want to go out and just blend into society. I can put my wedding ring on one hand, a watch on the other. It makes me feel more normal. I've gotten different feet too. One set is like natural feet. They flex and give me more bounce, which makes it easier to walk on uneven surfaces. I also recently got shower legs. They're made of titanium so they won't rust, and the feet on them are fiat so I can stand instead of having to be picked up and put in the tub.
So far our medical bills have totaled about $500,000. Of that, we've had to pay about 20 percent. I'm only 40, I'll need new devices every three years as my stumps change, and legs and hooks cost a total of about $30,000. Because of the chronic fatigue syndrome, I was already on disability when I got sick. Shortly after I was transferred to the intensive care unit at NYU, I got a termination notice from my job, and in February 1989 my medical coverage ended.
Now I have to deal with Medicare. As new devices come along, I'm afraid Medicare won't pay for them, and I'll be faced with having to go back to the Dark Ages. Neil teaches sixth grade, and he makes a public school teacher's salary. I also have Social Security and a disability pension from work, which add up to about $2,000 a month. We get by, but it's tight.
It's hard backtracking, relearning simple tasks that used to be so easy for me. And I'm still not self-sufficient. I rely on Neil to help me put on my prostheses, dress and shower, and someone comes in to help me with the housework. I could vacuum, but I get so tired after doing it. So life for me now is a series of compromises. I could get very upset, but I sort of have the attitude of just concentrating on the things I can do, and the other things can be done by someone else.
As for Neil and me, we do everything we've always done, but we just do it a little differently and a little slower. And I'm still a good mother. I help Jack with his homework, go to the playground, drive him to school when he misses the bus. I've even gone on the merry-go-round and things like that. Maybe just to prove I can.
That's one of the reasons I wanted to learn how to play golf. I had never played before, but I wanted to see if I could do it. Now I have specialized devices to help hold the golf club, because with the hooks it's almost impossible, and I've joined the National Amputee Golf Association. I was in my first tournament in August 1988. It was great. Not the fact that I could play well, because I can't. Oh, I can move the ball around a bit. But it was the first time I've been around people with similar disabilities, and I wasn't isolated.
Now I can even envision myself being a spokesperson for the handicapped. I've been encouraged, for instance, by seeing that commercial made by Bill Denby, the Vietnam vet who lost his legs, and by people in the limelight like Bree Walker, the TV newswoman who overcame syndactylism. These are people who are out there doing things and not sitting home feeling sorry for themselves.
Oh, I still ask those Why me? questions sometimes. And sometimes I still feel bad. When I first came to Rusk, the doctors made no guarantees to me and no promises. But I don't give up easily, and now I've done things I never thought I was capable of doing. When I was a patient, I kept looking for other patients who have been through what I have, but I never found any. I think Rusk thinks of me as their success story. I guess I do too.
- Bonnie Johnson.
April 25, 2015
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