20. A patient’s perspective

I had six miscarriages in less than three years. In retrospect, this seems to be a physical impossibility. Although each miscarriage stands starkly alone in my mind, having six of them in such a short span of time produced a cumulative effect. Each presented me with peculiar challenges and carried its own unique message. On each occasion, I was in a different hospital either in America or in Israel, with different doctors and different walls to witness my misery. It was natural to begin getting that deja vu feeling, ‘Haven’t I been here before?’ Yet, when I looked around, I was forced to admit that – ‘No, I had never been here before’. Looking back, it seems as if each miscarriage demanded its own identity, its own space in my brain. Each refused to be lumped together with the others.

In retrospect, I had undergone six different and distinct losses. One might think that the loss becomes easier or at least less painful with each successive miscarriage. It doesn’t. On the contrary, the physical pain is as fresh and as potent each time. The emotional suffering involved in the loss only increases. It has been said that humans can acclimate themselves to the most horrendous of circumstances; the ‘getting used to it’ impulse seems to be very strong. This was not the case. I never got used to losing a nascent child.

Although each time I was more prepared on a practical level, I was never prepared on an emotional level. Each miscarriage came as a shock, though the physical symptoms often repeated themselves. The initial trouble always began suddenly; without warning, a stain would appear. Foolishly, I would think ‘Could I just wish it away – make believe it didn’t exist?’ As the sharp pains in my back and cramping increased, I started to ramble, ‘Could I have a nervous breakdown simultaneously with a miscarriage?’ The hemorrhaging was merciless and, as was now my custom, I grabbed

some towels and headed to the car to take me to the hospital.

I had felt pregnant. I had experienced the morning sickness that seemed to last the whole day. Now I wish I hadn’t. At least I would have been spared the pain of feeling the symptoms disappear. I was filled to the brim with disappointment. Miscarriage is a death, though perhaps not acknowledged as such by the world outside of the family who have suffered the loss. At the time of my miscarriages, I could not articulate this feeling, but it was very real. I was frightened by the fragility of life. I knew that I had experienced a touch of death, for something had died within me.

The trauma of miscarriage stems from lost hope that was so briefly, and so very vividly, alive. For all of the frustration of infertility, it is one-dimensional, monochromatic – negative, negative, negative, void and nothingness. Miscarriage by contrast is multichromatic. You have hope and a life inside you, and then it is lost – both the child and the hope. Surprisingly, I found that I never became jaded. No matter how many losses, each conception reawakened in me the belief that this time it was going to be different.

The assumption that children will arrive soon or easily, or at least whenever the couple desires them, is a normal assumption, but also a very dangerous one. My family and friends have children. They don’t have miscarriages. So, although I may have known intellectually that miscarriages are not that uncommon, my unexpected complications were not part of my everyday consciousness. Infertility and miscarriage are unfortunate things that happen to ‘other people’. Since it was too painful to imagine these difficulties in our own lives, when they did occur, I found that I was at a total loss. As the effects of one miscarriage seemed to spill over into the next miscarriage, one truth pervaded my thoughts: I was still barren.

Barren. What a horrible word. It conjures up images of the American southwest, of Arizona and Georgia O’Keeffe’s paintings. One of O’Keeffe’s favorite motifs is a dry horse’s skull sitting on the desert’s sand. No signs of life there. Some of the most wretched terrain on earth, incapable of creating and sustaining life. Barren. What a pitiful way to hear oneself described. The label ‘fruitless’ was so contrary to the way I had perceived myself my whole life. I was always very fruitful, I was a producer. Now I was deficient. I didn’t have what it takes to ‘produce’ in the most valuable of all endeavors – conceiving a child and sustaining a pregnancy.

Bitter. A word I never had an affinity for. Bittersweet chocolate is, to me, a very poor substitute for the real thing: gooey milk chocolate. Bitter implies something unappealing and most certainly not the ideal. Over the span of my years of infertility and often agonizing tests, I asked myself, ‘Was I becoming bitter?’ I resolved with all my heart that this was one sentiment that would have no place in my vocabulary. Bitterness was a particularly astringent emotion. One whose intensity I felt would be better put to use on other needs and emotions, particularly at such a sensitive time in my life. Bitterness twists one’s core personality and corrodes a person’s resources and strengths. I was concerned that becoming bitter would have held me back from full participation in and enjoyment of the births of my nieces and nephews as well as countless friends. It would have constricted my own flow of love and giving when that is indeed what I needed to do most.

All I wanted was to have a normal life. After having been married for seven years and wanting children, ‘normal’ by definition would mean a baby in my arms. Other women I know who have suffered pregnancy losses have also remarked that they too just wanted their lives to be ‘normal’. I craved the ordinary, the mundane tasks of motherhood, but they continued to elude me. I also felt confused. I hadn’t heard much about miscarriages before, and even if they were relatively commonplace, they were not part of my lexicon. I did read in a book about women suffering from multiple miscarriages the following, which I could strongly relate to. Friedman and Gradstein in their book, Surviving

Pregnancy Loss1 write: ‘When you lost your first pregnancy, everyone told you not to worry, it happens to a lot of people. Remember, you are young and healthy and have lots of time to have babies.’ But the authors continue, ‘Other women have babies so easily; why not you? Lightening is not supposed to strike twice in the same place, and certainly not three or four times.’

My earlier difficulties with conception often left me with a very frightening thought: ‘What if I never conceive?’ With the miscarriages, I knew my situation was different. Somehow, I believed that in most cases when a woman conceives again and again, the likelihood is that sooner or later a pregnancy should sustain itself. I would periodically remind myself that there were women I knew who never even had the good fortune of having a hope to cling to. Yet, a nagging doubt was lodged in my consciousness and a subtle fear accompanied me wherever I went. My fear was based on the lesson that the miscarriages had taught me. Human existence is very fragile. There are no guarantees.

My body was out of control. First it refused my command to become pregnant and then it refused to hold on to the pregnancy. Since my infertility problems were unexpected, as until now I was a healthy female specimen, this bizarre turn of events caused me to lose my balance. I was young, athletic, never smoked, and only had an occasional glass of wine. Why was my body failing me? I felt that I was twirling in an almost dizzy fashion. Not only was my body out of control, but my life seemed to be spiraling in a direction I could not identify. Once the possibility of childlessness entered my mind, it never departed. It lurked in the shadows of my brain, pushing to the fore at the most unexpected moments. Just when I was enjoying myself, actively engaged in the world around me, the sinking feeling would come rushing back: I may never, ever give birth to a child. I may never, ever be a natural biological mother. Paralysis seeped in. It was as if my body froze and my mind locked. Everything was now out of control. I would try to push the ugly thoughts out and concentrate on my life. I focused on my career, my family, my community, and my friends. But the thoughts were still there. The harsh fact of

my being a ‘habitual aborter’ lingered on and on. It aggressively invaded my consciousness and colored my perception of the world. In fact, the cumulative experiences of years of infertility and failed pregnancy had shaken me to my core. My world had suddenly become a whirlwind of intense and mighty emotions. Hope and despair would rage. I found that in the midst of my mundane activities, I was now insecure and frightened. Some of these emotions I felt quite powerfully for the first time in my life. I was distraught and disillusioned. The world had turned bleary.

On a particularly overcast and gloomy day in New York, I entered Brooks Brothers Department Store. Suddenly, I had an overwhelming need to buy a personal diary. The pocket diary I found was maroon and leather and was a present to myself, a consolation prize for bearing circumstances that would crumble many a strong individual. The goldleafed diary cost more than the budget would normally allow, even if it did bear the distinguished Brooks Brothers insignia. I distinctly remember the day that I bought it. I had been diagnosed with a ‘grapefruit-size’ ovarian cyst, the latest mishap in my uncontrollable reproductive system. I was nothing less than frenzied, with my cyst surgery looming. With the diary in hand, I hurried to the corner of an enormous Hallmark card store in Manhattan and opened it to the back page. With a burning need, I wrote down the dates, locations and treatments of the miscarriages. I also included the upcoming appointments, the date of my cyst surgery, and all the various treatments I had undergone since the onset of my infertility problems. What if this information would be important some day? How would I remember all the details if I didn’t record it somewhere? My response to all my suffering at that time was the emotional equivalent of the diary’s blank pages. I was silenced. No words could ever convey the emptiness I felt. But the precise week of each pregnancy loss, each doctor, and each treatment would occupy the gold-leaf pages. Some empty lines would be filled in, in the not too distant future, with the last and most crucial treatment that was yet to come. From time to time, I take out the diary to remember the tears that were shed in that

A PATIENT’S PERSPECTIVE

Hallmark store. Amid the baubles and balloons, the shelves of colorful cards announcing every sort of happy occasion, I was occasionless. I wept and felt my precious lost souls wept with me. I stared in disbelief at the dates and the memories they evoked. I felt weighted down as I held the small maroon diary in my hand. The year 1986 was embossed in gold numbers on the front cover of the book. Could I have imagined what occasion would yet occur during that year?

A well-meaning friend had clipped an article from the local newspaper detailing an experimental treatment for multiple miscarriages. The treatment was initiated in England and was now being offered by a pioneering doctor in Israel. This was actually a rather frequent occurrence; concerned friends would drop by to relay information about some new and innovative medical technology they had learned of from the media. Of course, I very much appreciated their support, but as time passed and no experts had the answers I sought, and all the latest treatments had apparently failed, these suggestions only served as a constant reminder of my childlessness. I truly felt loved by all those who called and cared enough to keep me in their thoughts and prayers. No doubt it was my pain and my insecurity about the future that made each suggestion so difficult. I was tired of being disappointed, sick of hanging my hope of becoming a mother on some new innovative medical treatment. Looking back, I think I was also tired of disappointing everyone around me. This particular newspaper article was especially ill-timed; it arrived as the hemorrhaging of my sixth consecutive miscarriage worsened. As I lay on my bed, the only thing I could be sure of was that I didn’t want to look at, much less consider, any new ‘treatments’. I certainly could not face another doctor. Each new doctor would need my medical history, and with each retelling I found myself reliving. Six miscarriages, six different doctors, six different hospitals. Could I tell this sorrowful tale one more time? I crumpled the article and placed it in the wastepaper basket next to my bed amongst all of the tear-filled tissues. The cramping continued and I knew with certainty that I couldn’t and wouldn’t ever have the energy to face

another treatment protocol. In fact, the only thing I wanted was to survive this most recent hardship and sit very still, by myself, for a long, long time.

As the bleeding intensified, I could fool myself no longer. I needed a doctor. I turned to the wastepaper basket. The discarded ball of newspaper stared up at me. I felt it was actually challenging me – daring me to try once again. Suddenly, that rejected article became the focus of my anger, frustration, and all my hope. My decision to take an experimental treatment was not an easy one. I was concerned with the unclear repercussions, but the confidence and sincere concern of my doctor helped me move forward. Treatments in general are not just the filling of prescriptions, scheduling doctors’ appointments, and undergoing procedures. The word ‘treatment’ equals the word ‘hope’. It was therefore very difficult for me to see any treatment as routine.

Infertility and pregnancy loss presented me with challenges and choices that were often painful and difficult to make. My personal suffering had been well hidden behind the guise of a ‘normal life’. As a result, the life crisis that evolved with my pregnancy losses was often misunderstood. Pregnancy loss creates isolation, an overwhelming feeling of sadness. I felt vulnerable and out of control. These are intense

and powerful emotions, which need to be recognized, identified, and dealt with. My own personal experience was that my spirit could be crushed or elated by the result of a blood test, because its results meant the difference between life and death in pregnancy, or between a healthy organ and a diseased one. Each doctor’s visit became a focal point, a touchstone, a painful reality check as to how realistic it was to believe that motherhood was still within my grasp. Now nearly twenty years later from the birth of the first of my three children, writing this chapter still evokes such powerful emotions that it is as if it is in ‘real time’. Tears flow freely. Painful memories are now intertwined with joy that soars and knows no bounds. The years of infertility and multiple pregnancy loss will always be an integral part of my most essential self. That self came to motherhood with profound blessings from G-d and the pioneering and brave efforts of dedicated doctors and hospital staff, all to whom I am forever grateful.

REFERENCE

1.Friedman R, Gradstein B. Surviving Pregnancy Loss: A Complete Sourcebook for Women and Their Families. Boston: Little, Brown, 1992.