She took a hard turn for the worse with her alcoholism. I saw the incremental changes in her. When I flew down to Florida or they came up to the city, I was constantly searching for her stashes. I found bottles of wine under her mattress, in the closets, under towels. It used to be that her personality would change only when she was drunk. But she seemed mentally off all the time now. Was she drunk around the clock? How could anyone be sure? She drank in secret.
I had a bad feeling that something was fundamentally off about her. She was zoned out. It was like she didn’t know where she was half the time. Mom was occasionally violent, too, throwing things and punches.
“I’m scared,” I told Dad. “Something is wrong with her.”
He couldn’t see it. But he was with her all the time. The change for him was gradual. I’d see her every two months, and registered a dramatic difference.
Upset and worried about her, I turned to Ricky for an ear and a hug. It was like he put up his palm and said, “Talk to the hand.” He did not want to hear about it. I was afraid that alcoholism was also a sign of weakness in his book. Having an alcoholic mother just made me even more unsuitable. So Ricky was no help, and Dad was in deep denial about the severity of the problem.
During one of their visits to New York, I thought my mom was out of control. She stumbled around, her speech slurred. She stared at me like she didn’t know me. I found her in the kitchen drinking, and took away her glass. Before, she’d deny the problem or tell me off. But this time, she didn’t acknowledge me at all. Silently, zombielike, she just reached for another glass. It was eerie.
I called my doctor and described the symptoms.
“She needs to detox,” he said. “Bring her to Lenox Hill tonight.”
Dad was against it. He still loathed hospitals and doctors. But I begged him to do it, so we put Mom in the VIP wing at Lenox Hill for detox. I slept at the hospital every night. They gave her drugs that made her hallucinate. She kept trying to leave the hospital, but she did not know what city she was in. Miami? New York? I wasn’t sure she knew she was in a hospital. One thing we were sure about: she didn’t want to be there. She persistently tried to escape, and had to be tied to the bed. She became violent. Having to see that was traumatizing. It was a turning point. We had to deal with this. No more denial.
They did a CT scan on her brain. It showed that she’d had a series of ministrokes. Possibly, her drinking masked the effects. Probably, her alcoholism caused them. There was nothing we could do about them now. She went on a drug regimen to prevent future brain attacks. I was absolutely despondent. My mother had been having strokes, and no one knew. How on earth had that happened?
The doctors gave us another diagnosis. Mom had irreversible brain shrinkage. The condition was called “wet brain,” or Wernicke-Korsakoff syndrome. It was caused by a severe deficiency of thiamine due to alcoholism and alcohol-related poor nutrition. The vitamin deficiencies wrecked her metabolism and that, in turn, caused atrophy of the brain.
“We usually see it in homeless people without access to health care,” said the doctor. Her symptoms—confusion, difficulty speaking and focusing, forgetfulness, among other things—fit the diagnosis. All this time, we thought she was just wasted.
“If she’d had thiamine injections a while ago, we might’ve been able to reverse it,” said the doctor. “But with the strokes and progression, vitamin treatments won’t do much good.”
“She won’t get better?” I asked.
“No. But she will get worse if she keeps drinking.”
I had no idea how to help her, besides locking her up.
My father was getting tired of all this. He still thought of her alcoholism as a self-inflicted problem that just wouldn’t go away. He was anti–mainstream medicine. He looked at Mom full of drugs, tied to the bed, and blamed the doctors for making her worse. He was also low on cash. After two weeks, the bill was over fifty thousand dollars and he was livid about that. He insisted we get her out of the hospital and off the detox drugs. “She’s my wife,” he said. I acquiesced. They went back to Florida.
I was scared. My mother was increasingly out of reach mentally. This disease was bigger than our ability to help. I didn’t feel I could talk to Ricky about it. I chalked up his lack of support as the one flaw in our otherwise perfect relationship. To make up for it, I doubled down on cooking, cleaning, and cheering him on. I felt grateful that he loved me.
What an idiot. I should have told him to fuck off.
Dad checked in with me often. Acceptance that she was really sick sank in. “Your mom,” he said one day, “her mind is just . . . going. She doesn’t know where she is. She puts things in the wrong place. She forgets things. But she doesn’t know she’s being forgetful.” The symptoms were like those of an Alzheimer’s patient.
Dad and I begged her to stop drinking or to agree to go to long-term rehab, like Phoenix House in Arizona. Mom refused to do either. “I’m old enough to make my own decisions. You can’t make me.”
“Your brain is deteriorating,” I said.
“I don’t care,” she said.
To Dad, I said, “She doesn’t understand what she’s doing to herself.” How could she? She was mentally diminished. She’d had multiple strokes. Her brain was shrinking.
Dad wasn’t the most effective policeman. Despite her zoning out, she was still driving. She had use of her credit cards. She came and went as she pleased. He searched for her wine stash and would get rid of it, but she’d just replace it the next day. She was forgetful, but always remembered where the wine store was. Alcoholics are extremely crafty. They can move mountains to get their hands on a bottle.
I was overwhelmed with school, Ricky, and Mom. I simply had to unload some of my emotions. I decided to talk to Ricky about it, hoping I was wrong about his attitude. “She sat by my bed for months, and took me to millions of doctors over the years,” I said one night after dinner. “I feel like I’m not doing enough for her now that she needs me. We’ve switched places. I get how helpless and vulnerable she must have felt after my accident. It’s worse to be in the chair than in the bed. I can’t stand by and watch with a smile on my face. I don’t know how she did it.”
I don’t remember exactly what he said. I do remember what I heard—that my mother, my angel, was just a weakling undeserving of his consideration. And I do remember what I said next:
“It’s over.”
“What?”
“And fuck you.” This time, I walked out.
A week later, I went back. I was an addict, just like Mom. He was an asshole chauvinist throwback, and I couldn’t get enough. We broke up and got back together several times over the coming months. Sexual attraction (coupled with codependency) could make a person act in her own worst interests and be thrilled about it.
Linda Stein finally managed to sell the Kenilworth apartment (for $5 million). I had to move out. I found a one-bedroom rental at 401 East Sixty-sixth Street and Second Avenue. Mediterraneo, a popular Italian restaurant, was right on the corner. I had a lot of dinners there with friends, and still go with my family.
Living alone in a much smaller place, I found myself asking the big questions. I’d devoted much of the year to my conversion. But when I was in crisis over the one human being I truly worshipped—my mom—I found no comfort in religion or prayer. I’d made a switch to Judaism, in part, to be with the man I loved. But he didn’t love me back enough because of the accident, which had been, arguably, an act of God.
I’d been searching for meaning during a hard time. Something felt missing in my heart I thought only faith could fill. But my family, for better or worse, was my true religion. We had our own history, traditions, and laws. I wasn’t so sure about God. But I was devoted to my parents. Despite his religious nature, Ricky had no charity in his heart for my mother, a sick woman. I started to hate myself for wanting him at all. In one fell swoop, I gave up my boyfriend and my religion, and made a concerted effort to find faith in myself.
Everything You Wanted to Know about Amputees (But Were Afraid to Ask)
At my charity functions and interviews, people have a lot of questions about my prosthesis and life as an amputee. I always thought I should really write my own FAQ to answer all of the lingering questions out there. Here goes:
How Much Does Your Leg Cost?
My current legs—one for flats and one for heels—cost $30,000 each. Believe it or not, that’s midrange. Prosthetic limbs can cost anywhere from $10,000 to $150,000, depending on the material, use, and style. This is why I do so much work for One Step Ahead and Challenged Athletes Foundation, both of which raise money to pay for prosthetics for children and athletes. As I know only too well, kids need at least two sets a year while they’re growing. Insurance will cover only their most basic needs or will pay for one prosthetic a year, or even only one per lifetime, depending on the policy.
Insurance certainly doesn’t cover cosmetics—meaning legs with realistic “skin” and “toes”—or limbs for specific purposes, like running or swimming. I campaign for children and adults who lost their limbs due to diseases or accidents, or for those who were born limbless. They deserve a fighting chance and to not be held back by their loss. Just as reconstructive surgery after mastectomies is paid for by insurance, artificial limbs for sports or aesthetics should be paid for by insurance companies. (For more information about One Step Ahead, please go to www.onestepaheadfoundation.wordpress.com and CAF at www.challengedathletes.org.)
How Often Do Adults Have to Replace Their Prosthetics?
A good one can last for years. Though with steady improvements in technology and technique, I’ve been known to upgrade to a better leg even if the old one is in good working order. I’ve had my current legs, made by Eric Schaffer of A Step Ahead Prosthetics in Hicksville, Long Island, for five years. Not only are his legs beautiful, they’re very comfortable. With repairs, I could wear them for a decade or more. (A Step Ahead can be found at www.astepaheadonline.com.)
How Do You Put It On?
First I roll a custom-made silicone sleeve, like a thick condom, over my stump, a.k.a. my residual limb. And by the way, most amputees hate the word “stump.” It just sounds bad. The sleeve has a pin at the bottom, pointing down. Then I put my leg with the silicone sleeve into the socket at the top of the prosthesis. The pin clicks into a hole in the prosthesis, and it is locked in place. There is no way you could pull the leg off me. You could drag me around the apartment by the leg, and it would not come off. To take it off, I press a release button (well hidden) that unlocks the pin, remove the leg, and unroll the sleeve. It takes maybe ten seconds to put on, two seconds to take off. Only the people I trust the most in the world know where the button’s located. If I were in an accident and the paramedics wanted to get it off, they would have a hard time finding that button.
What Does the Leg Feel Like?
It feels like soft rubber to the touch. In terms of how it feels to wear it, it’s heaven. It feels like a comfortable padded boot. I can put it on as easily as a pair of glasses and walk without pain, wear skirts, wedges, flip-flops, and look like I have two normal legs. It’s a miracle. I’m grateful every day, every step, for the technology that affords me a normal life as well as the artistry that goes into making these beautiful, functional prosthetics. I’m grateful for the whole leg I have, and for my amazing “bionic” leg.
Mechanically, How Does It Work? Does the Leg Have Joints and Springs?
The components in the leg give me bounce, like a ligament does in a real leg. My traction comes from the knee. The “ankle” isn’t a flexible joint, but it bends slightly and shifts back and forth (but not side to side), making it possible for me to take a normal step.
My smooth gait also comes from years of practice. If only I’d practiced as much on the piano as I do walking with my prosthesis! I’d be playing in Carnegie Hall by now. It’s also because I have a comfortable fit. Before I had my second amputation and had to endure the abrasions, I limped a lot. The equivalent would be wearing too-small shoes and walking with blisters. When I had the surgery, and the abrasions were gone, it was like throwing out the blister-inducing shoes, slipping on a pair of slippers, and walking on a cloud.
How Are Prosthetic Legs Made?
When you have a below-the-knee amputation like mine, the prosthetist takes a cast of your stump—or “residual limb,” the preferred term. Then they use the cast to create a mold to build a socket for the residual limb to fit into. The artistry comes in when the prosthetist builds a foam shape of your good leg—or “sound leg” as they call it. Then they flip it, right for left, and make a foam model and fit it with a silicone “skin” on top. The aesthetics—moles, shading, veins—are designed when casting and tinting the silicone skin. It takes about two months to make a prosthesis. Other types, like sports limbs, are made differently. Each limb is custom made to each person’s residual limb. No two prosthetic legs or arms are ever the same.
An above-the-knee amputation requires a more complicated prosthesis, with a mechanical “knee.” It’s truly a marvel of technology.
How Much Does the Prosthesis Weigh?
It’s slightly heavier than my normal leg. You’d think that I’d have a muscular left thigh from lifting the prosthesis around. But my right thigh is much stronger. I favor it. I always lean and stand on my right leg. Actually, my left thigh is somewhat atrophied. I should do physical therapy to build it up but I can’t be bothered. I have four kids, and too much to do.
What Kind of Exercise Can You Do?
Anything I want. I am not great at putting all my weight on my one prosthetic leg and balancing, so yoga can be a challenge. I have not gotten a running leg yet, but I am getting more and more into running and may get one soon! I can use gym machines like the StairMaster and the elliptical trainer. My preference right now is spinning class. I go three times a week to Soul Cycle (www.soul-cycle.com).
To spin, you have to click the cycling shoe into the pedal. For a long time, the teacher had to manually click my prosthetic foot into the pedal for me. I couldn’t feel the click. But after a while, I got it. I spin with my flat foot. You have to stand up, sit down, go fast, go slow. I don’t have a left calf muscle, after all. To compensate, my hamstring and quad have to make up the difference. I don’t know exactly how I manage to pedal without an ankle joint, but it somehow works.
The real trouble at spin class, though, is sweat. My stump sweats. After forty-five minutes of spinning, sweat pours into the silicone sleeve and creates a puddle. (I could use a special deodorant to eliminate sweating altogether inside the prosthesis, but that stuff contains aluminum. See list of fears.) If I stepped off the bike like that, the sleeve would slip off. At the end of my spinning class, while everyone else is stretching, I discreetly take a T-shirt and wrap it around my knee. I release the pin and roll down the silicone sleeve. I dry the inside of it and my stump with a towel. I quickly roll the sleeve back in, click in, and I’m good to go.
This is why I always take a bike in the back row, with the wall behind me.
How High Is Your High Heel Leg?
I can wear a 31/2- to 41/2-inch heel. I can cheat a little up or down if I’m prepared to be off balance.
Do You Have a Swim Leg?
I use an old flat leg as my swim leg. Sometimes it stays wet for a few hours. Not a big deal.
Are Your Real and Artificial Legs Different Shades During the Summer?
No. I have my prosthesis designed a few shades darker than my good leg. In the winter, it’s a nonissue because of pants and tights. During the warm months, I lay out to catch up my good leg to match the tone of the prosthesis, and then wear sunblock to prevent further tanning.
Do You Get a Pedicure on the Artificial Legs?
Of course! I go to my favorite pedicurist with my spare leg in a bag. They keep some things for me at the salon. Regular acetone polish remover actually removes the fake nail. They keep a special non-ac
etone remover in stock for me.
When I get a pedicure, only my real foot gets the whole treatment. But all of my fifteen toes get polish. I match the color on all three feet. First, the pedicurist polishes my real toes and whatever leg I’m wearing. While I’m drying, she takes my spare leg into the back and changes the color. Then she puts it back into the bag for me to take home. They’re so sweet, they don’t charge me extra for having three feet. Not once have any of my pedicurists said or done anything to make me feel uncomfortable. Though I prefer them to polish the third leg in the back and not in front of the customers. I don’t want to scare them off. Once the manicurist walked out from the back carrying my prosthesis in her hand. All the patrons stared. I wanted to die of embarrassment.
Are the Toes Separated Like on a Normal Foot, or Does It Look Like a Barbie Foot?
It’s not like a Barbie foot at all. The leg also has veins and capillaries, moles, and different shades. It truly is a work of art. It looks like a real human leg, not a smooth plastic doll’s. It’s great for my psyche to look down at my legs and see how similar they are. It’s like having my own two legs. The toes are separated. Well, just the big toe. The other four are joined. The space between the big toe and the rest is the perfect width for flip-flips and sandals.
Have You Been Hit on by Amputee Fetishists?
Yes! I’ve been propositioned by tweet from a man who started asking me innocent questions about my leg, like, “How does it work?” and “Do you wear it to sleep?” He said he was asking for an amputee “friend.” I innocently answered all questions in detail. I even sent pictures! But then he asked me to describe the stump. He asked me to send him a picture of me touching it. And that’s when he got blocked. A very creepy and huge downside of being in the public eye.
Leggy Blonde: A Memoir Page 11