My Love Story Page 18
I didn’t mind the thought of dying—I’ve always been curious about the afterlife—but I was concerned about how I would go. One of the benefits of living in Switzerland is that assisted suicide is a legal act. After determining that a person is sane, a doctor can prescribe a lethal drug to a patient with “unbearable suffering.” But the patient has to inject the drug him- or herself. As I understand it, a line is opened, you give yourself a nice little injection, or a drink, then you smile and go off to the other dimension to find out a few things. This sounded like a painless way to deal with a painful problem. There are several organizations that offer the service of coordinating the process, including Exit and Dignitas.
I signed up to be a member of Exit, just in case.
I think that’s when the idea of my death became a reality for Erwin. He was very emotional about not wanting to lose me, not wanting me to leave. He said he didn’t want another woman, or another life. We were happy and he would do anything to keep us together.
At this point, Erwin shocked me by saying that he wanted to give me one of his kidneys.
I could hardly believe it then, and there are times when I still can’t believe it. I was overwhelmed by the enormity of his offer. Because I loved him, my first response was to try to talk him out of taking such a serious and irreversible step. He was a young man. Why should he take such a risk to give me, an older woman, a few extra years? He knew he could survive with one kidney. But what if something happened to him? What if he had a problem with his kidney someday? “Darling, you’re young. Don’t, don’t, don’t interfere with your life. Think about your own future,” I urged.
But Erwin had made up his mind. When he thought about his future, he thought of me. “My future is our future,” he told me. And he wasn’t the least bit worried about the possibility of needing a kidney someday. He believed in the gift of giving. “If you give, you receive,” he said, confident that the universe would take care of him.
I cried as we sat in our living room holding hands, looking out at the lake. Despite the fact that my doctors were discouraging about the possibility of a kidney transplant, I chose to believe that it could happen—that it would happen. At that moment, I felt something that had been missing from my life ever since this series of medical calamities—my stroke, my Schwindel, my cancer, and now this—started.
I felt hope.
11
* * *
“ASK ME HOW I FEEL”
“The night is awful cold, ask me how I feel”
Staying healthy—and honestly, staying alive—meant undergoing dialysis. I knew it was the right thing to do, the only thing to do, yet I was still unhappy about the notion of spending so much time hooked up to a machine. When I made an exploratory visit to the clinic, I warned my doctor, “I’m just taking a look at the equipment.” In the dialysis room, I saw this R2D2 thing—a figure straight out of Star Wars—standing there, looking back at me. This little machine would take over my kidney functions. Do I really want to do this? I wondered. I had no choice. I didn’t look forward to it, it was just something I had to do. This was my roundabout journey to a dialysis chair at a hospital in Zollikon, Switzerland.
My first day at the clinic, the doctor showed me where he was going to insert a catheter in my chest, so I could be connected to the dialysis machine. My first reaction was, “Well, I can’t wear low cuts anymore because there’s going to be a hole there!” I may have been sick, but I was still Tina, still thinking about fashion and looking good. I was told to watch out for infection at the catheter site, since it would stay in place as long as I was getting dialysis. Some of the other rules were to drink less liquid and to avoid contact with anyone who was sick.
The dialysis room was bright and unadorned (no, I didn’t have any desire to redecorate it), and the furniture was covered with gray plastic to make it easier to keep it clean. The most distinctive detail about the room was the whooshing sound the pumps made when they were hooked up to patients. I experienced a whooshing feeling inside, too, as the fluids traveled through my body during dialysis. The sensation was so strong that it persisted for hours after the treatment, the way the body sometimes feels the rhythmic pull of waves after swimming in the ocean.
Some days were better than others. If they took out too much water during the cleansing process, I felt weak and tired when it was over, and I’d tell the nurses the next time I came in.
While I can’t say I liked going to the clinic, or that I looked forward to it, I got used to being there. I think the nurses liked me because they expected Tina Turner to behave like a star—to be standoffish and spoiled, and to make demands, which I never did. “You’re so nice,” they’d say with surprise. The other patients had a tendency to complain, which is to be expected, given that they were sick and uncomfortable. But I tried to carry a little fun with me. My feeling was that I had nothing to complain about—my husband was giving me a kidney, and I was so grateful for that! I kept reminding myself that I was lucky, not doomed, even though my list of illnesses seemed to get longer and longer.
For the next nine months, the dialysis chair was the center of my life. Having a routine helped. Knowing what to expect each time I went to the clinic made the process less upsetting. I learned to wear soft, comfortable clothes, and I often fell into a deep sleep for the first two hours because I was still weak and feeling poorly. When I woke up, Erwin and Didier, our majordomo, the lovely man who runs our household with dedication, skill, and grace, were at my side if I wanted company. I entertained myself with my books, which were always within reach, and I daydreamed the rest of the time.
I loved looking through my volume of photographs by a man named Horst P. Horst. The first time I saw his work I was in London (I think I was shopping at Molton Brown), and I looked up and was almost knocked off my feet by the gallery of framed images on the walls. I had never seen such beautiful photographs. They were the essence of elegance and glamour. I didn’t care how much they cost, I had to have them. I hung them all over the house, and admired them every day. I brought a book of Horst’s to the clinic because his greatest photographs, including a woman holding a fan, a corseted torso seen from the back, and a nude draped on a satin curtain, showed me that there was still beauty in the world—and they reminded me of home, where my Horsts were on display.
I’ve collected quite a library of books by Deepak Chopra because I’m a student of his ideas about consciousness, and the strong connection between mind and body. Meeting him in California confirmed my feeling that he is a very special soul on the planet, and his words always inspire me. I found The Book of Secrets especially comforting at the clinic because Chopra discusses how facing death can help a person to develop a real passion for being alive, a message that holds meaning for me today. Every now and then, when I have a moment, I go to my chanting room and sit there to read what he has to say, just collecting information and letting it soak in. I don’t know what’s coming in the next world, but I want to be prepared, and Deepak Chopra teaches us that the body and the mind have to develop extra, extra, extra to connect to the universe we can’t see.
My interest in Dante is a little harder to explain, probably because Dante is harder to understand. You don’t dare move when you read Dante! When I started going through his books—and that was before dialysis—I felt like I was standing on an egg with one foot, and that eggshell was going to break. I knew I’d have to read his writing over and over to comprehend what he was saying about the afterlife. The Divine Comedy suggests that on our journey to Heaven, we have to go through trials and tribulations to get to the top. If we learn, we progress to the next level. Every life has its tests, some more dramatic than others. I’ve had my share of tests, and I think I’ve learned from them, but who’s to say I would ever reach the kind of enlightenment Dante describes. As difficult as it sounds, I’m determined to challenge myself and try.
When I didn’t feel like reading, I let my mind wander wherever it wanted to go. How many times have
I said, “I’m done with Ike”? Yet here I was, drifting through memories I’d kept buried for so long, my recollection of our wedding in Tijuana and that trip to see a sex show after, for example. In my chair, I had the time and motivation to look back, to watch the story of my life on “rewind,” so to speak: time to contemplate the big questions. It sounds a little clichéd to say that you see your life pass before you when you think you’re dying, but that’s pretty much what happened to me.
The landscape shifted, as past and present merged. My mother and Ike were in my thoughts constantly while I was at the clinic. Nothing could change the truth—that I was abandoned by Muh and abused by Ike. Or that I spent too many years believing I would never be loved. But now I was developing a different perspective. I realized that as painful as these experiences were, they no longer defined me. After Erwin came into my life, my sad story became a love story. If anyone ever doubted that the feeling we had for each other was real, the great gift Erwin offered me—the gift of life—proved them wrong.
I was still taking drugs to control my high blood pressure, and I began to resent them because I was certain they were making me feel worse. I remembered how life was before the pills, and I wished I could get back to feeling clearheaded and energetic, like me. When a friend suggested that I consider trying a different approach, and recommended a homeopathic doctor in France, I jumped at the chance.
I put my faith in another kind of healing. The homeopath suggested that my body was being affected adversely by toxins in the water supply at the Château Algonquin. I was so eager to try a new approach, no matter how far-fetched, that I replaced all the pipes in the house and had little devices installed so the water could be purified by crystals. My new doctor replaced my conventional medicines with homeopathic alternatives. Instead of taking pills, I was constantly drinking, drinking, drinking the treated water to combat my high blood pressure—and the new treatments actually made me feel better. Maybe it was bullshit, but I believed in it, and as I told Erwin, my attitude at the time was that it couldn’t hurt. I knew these measures were a bit extreme, and that my established Swiss doctors would never approve of what I was doing, so I took the coward’s way out. I simply didn’t tell them that I had stopped taking my blood pressure medicine, or that I was experimenting with alternative treatments.
The trouble started when I went to see Dr. Bleisch for a checkup. About three months had gone by, and I was curious to see if the homeopathic treatments were lowering my blood pressure and improving the condition of my kidneys. I felt fine, so I expected good news. I casually admitted to Dr. Bleisch that I hadn’t been taking my blood pressure medication—just gave it up—thinking the revelation was no big deal. Big mistake. Big, big, mistake. He seemed shocked, and he probably wanted to say, “You have really messed up.” Instead, he asked incredulously, “Didn’t you talk to your other doctors about this?” He explained that there can be serious complications for the kidney when a patient stops taking critical drugs.
Believe it or not, I didn’t understand that unmanaged high blood pressure could accelerate my kidney damage until after my doctor told me what I learned that day, that my failure to treat my high blood pressure had essentially destroyed my kidneys. Of course, I would have lived differently if I had known; of course, I wouldn’t have traded my medication for homeopathic alternatives if I’d realized there was so much at stake. The consequences of my ignorance ended up being a matter of life and death.
Suddenly, it became clear to me that a battle against illness is a battle for total and correct information. Maybe I was locking the proverbial barn door after the horse was stolen, but now it was important to me to try to understand what had happened to my body, so I could make better choices in the future. For example, I didn’t know that kidney disease is considered a “silent killer”—by the time most people experience any symptoms of kidney failure, 80 percent of their kidney tissue has already been destroyed. My condition, high blood pressure, is one of the leading causes of kidney failure. Thinking back, I may not have had symptoms in the beginning, but some of the problems I later blamed on the medication—from feeling tired and sick, to being itchy—are definitely symptoms of end-stage kidney disease.
Oh, the questions I asked myself again and again. Why didn’t I listen to my doctors? Whatever made me think that I was in a position to determine my own treatment? I wouldn’t have traded my medication for homeopathic alternatives if I’d realized there was so much at stake. I’m not trying to say something bad against homeopathy. In fact, I was treated successfully by a homeopathic doctor after I was diagnosed with tuberculosis in 1969. I believed in balancing my body and having the toxins cleansed from my blood, and I did it for years. It worked for me when I was young, but when I got older, and had a serious, long-term illness that was dependent on conventional medicine, it was unlikely that homeopathy could help me. If only I hadn’t discontinued the medication. If, if, if! Such a small decision, but one that would continue to haunt me.
With my usual optimism, I wanted to know how I could fix this, if there was anything I could do to revive my kidneys. But I was told that there was no way to reverse the negative effects of what I’d done to myself. By December 2016, my kidneys were at a new low of 20 percent. “Does this mean death?” I asked, letting the obvious answer sink in.
At this terrible moment of guilt, self-recrimination, and yes, regret, I learned something wonderful about Erwin. He never reproached me for my mistake, not with a word or a glance. Instead, he was loyal, kind, and understanding. More importantly, he was determined to help me get through all this alive.
Because my numbers were plunging so rapidly and we were in a race against time, the solution that had seemed like such a long shot only recently—a kidney transplant—became my only possible salvation. I underwent a second colonoscopy to determine if any cancer cells remained in my intestines and, miraculously, received a diagnosis of “all clear.” Since I no longer had to worry about contradictory treatments—immunoboosters vs. immunosuppressants—and we had Erwin’s kidney, we could start the process of preparing for the transplant.
Erwin and I thought very carefully about which Swiss hospital to choose for the surgery: there were several strong possibilities. We selected the University Hospital of Basel because it was recommended by friends and trusted experts. Also, I had a gut feeling about the place when we visited for the first time. I felt safe there. We liked the staff, everyone seemed very professional, and we had full confidence in Professor Doctor Jürg Steiger, the doctor in charge of my case; Professor Doctor Gürke, my surgeon; and Thomas Vögele, the hospital coordinator who would attend to all the details.
While they were studying me, I was studying them, and I was impressed by what I saw. There were pleasant human touches in Professor Doctor Steiger’s office, including photographs of his children and a picture of a farm, which turned out to have special significance for him because it depicted the mountainous region that was home to his mother and her family. He struck me as being a happy man, always cheerful and positive even when we were discussing very serious matters. I found his attitude reassuring. When he looked at me, he made me feel as if he saw the whole person, not only the illness.
Preparing for a kidney transplant is a huge undertaking for both the recipient and the donor, and the hardest part comes long before the surgeon makes an incision. Erwin’s magnanimous decision to give me one of his kidneys was the first step in a long and involved approval process. Since the year 2000, nearly half of all kidney transplants performed in Switzerland have been “living donor” transplants, when a person voluntarily gives one of their organs to someone who needs it. There are strict guidelines. In the early days of transplantation, a living donor had to be a blood relative, a parent, a sibling, a child. It wasn’t until 1991 that married (or unmarried) partners and friends could donate their organs.
Yes, it was critical that Erwin’s kidney be a good match for me, and extensive medical tests would determine our com
patibility. But the standard approval process also included a thorough “psycho-social evaluation,” or series of psychological tests, to establish Erwin’s state of mind. Why was he willing to be a donor? What was our relationship? How did he make the decision? How did he deal with stress? These were just a few of the questions he had to answer.
The interview process is rigorous because doctors sometimes come across a donor who has given up an organ for the wrong reasons. They mentioned a farmer’s wife who donated a kidney to her husband, only to file for divorce as soon as she left the hospital. Her attitude was, “I’ve done my duty, now I can leave you for good.” In her mind, she was using her kidney to buy her freedom.
In the back of my mind, I wondered if anyone would think that Erwin’s living donation was transactional in some way. Incredibly, considering how long we had been together, there were still people who wanted to believe that Erwin married me for my money and fame. What else would a younger man want with an older woman? Erwin and I knew it wasn’t true, and he always ignored the rumors and wasn’t bothered by them. In my weakened state, they made me crazy. Erwin never cared about any of that—he cared about me. As I’d expected, after talking to Erwin, the doctors determined he was not giving me his kidney for financial gain, and he was fully aware of any risk. Erwin knew exactly what he was doing. Erwin always knows exactly what he’s doing: that’s his nature. His offer to give me his kidney was the ultimate gift, a gift of love.