Women and Heart Disease: The Heart of a Woman

It's difficult not knowing if anyone out there in the bloggosphere is reading this, but I'm undaunted and optimistic, so here is the next chapter:

The Journey Toward Adjustment Begins: Turmoil, Reflection and Realization

Psychological savvy did not spare me the need for catharsis. Announcing to myself that I would be okay, that I had survived, could not stop me from recounting my experiences to anyone who had the time and patience to listen. Perhaps the more dramatic sagas of our lives vary by theme, but our reactions bear much more similarity than difference. I believe that there is a high level of universality in our need to share our most vivid memories which are centered around our most heightened emotions: fear, love, anger and hope.
After her three-week stay, added to the total of two weeks during which she stayed near the hospital by remaining at my home while I was hospitalized, I was ready and able to release my mother, although not without mixed emotions on both sides. I told myself that this was a milestone and knew that she needed to resume some semblance of her own life. It is unimaginable the toll all of this had taken on her. An incredibly strong, vital, willful, logical, loving woman, her habit/defense of putting her emotions on hold was wearing thin. I knew she had been unable to sleep through the night (to this day she will tell me with pride when she has not awakened "in the five's", the third MI having occurred at about five in the morning, but it is a rare occurrence). Sometimes it is impossible to ascertain who is more important to whom; we truly like each other and have developed a warmer, closer, more enjoyable camaraderie than ever. The definition of "need" does not properly flatter our alliance, for we have a rare and treasured affinity for each other. There are days that we talk to each other several times, laughing at life, supporting each other through life's less humorous moments, discussing everything from politics to the stock market to parenting. We shop for gifts for various family members and are noted for our hilarious adventures in that momentous event: shopping for bathing suits! We're fun-loving and play off each other to the hilt; remarkably, this is being repeated between my daughter and me. I cannot possibly overstate the case for having someone available, practically on-site, at least in the initial throes of your illness. I was extraordinarily lucky to have been able to call upon the close tie with my mother, but suffered terribly that I could not rely on my husband who "should" have been available to me. I recommend not exerting precious energy by not facing your situation realistically, whatever it is. There are professionals who are ably trained to lend comfort and assistance if you do not have someone known to you at your disposal. Whatever you need to do to take care of your immediate needs, just do it! You will need to take responsibility for moving on in your life, including, but not limited to work, pursuing your interests and engaging with people with whom closeness and support can be counted on.
By now about seven weeks had passed since the final MI and I had purchased tickets two months earlier for my daughter and me for our annual foray to see the Alvin Ailey dance troupe, truly our favorite. The show was marvelous, despite the fact that it was an evening performance and I was fighting my on-going fatigue. Again I could feel like a "regular" person, enjoying life. Our seats were down so close that we could see the beads of perspiration soaring through the air like tiny sprinkler systems as the performers spun and leapt. Of course that meant that we had to climb a virtual Mt. Everest to reach the exit when the last curtain call signaled our departure! By the time we reached the zenith, even with my daughter pushing me from behind, and even at a slow pace, I was in tears. Here I was attending this fabulous show and I had to cope with being at the effect of my dis-ease. She tried to comfort me and I recalled the words of wisdom of my physician describing the importance of the passage of time, but a slow recovery was out of tune with my natural drive. This was an example of weariness impinging upon good judgement. The impact was strong because I felt weak.
I could not help but notice that anything I did that was beyond the nothingness of basically staying in bed, with the exception of adding the block or so daily walk, took a toll the next day. I made as few actual plans as possible. The trick was to be meaningfully busy but not exhaust myself into despair. That pacing continues to play an important daily role even as I progress. If I look or act tired, there is an almost accusatory response: "You're doing too much". I maintain that you cannot be foolishly risk-taking, but it is not entirely possible to know what is too much. I guess caution is necessary, but I know that there is incredible psychological merit in pushing yourself just far enough to feel the value of what you are doing, to surpass yesterday's feats and set ever-higher goals. Simply put, you cannot do what you cannot do!
Less than one week after Alvin Ailey, I was able to go food shopping, but only with the cart as an aid and just briefly. I could not carry heavy packages, although temptation and stubbornness made me try, only to be thwarted by heavy breathing and weak knees. It was becoming more difficult to figure out what to do with myself, which was actually a good sign, albeit heavily disguised. Wanting to be back in life was enormously positive. I think that if my mind had been less clouded by the chronic fatigue, my concentration would have improved and I would have known and appreciated this important piece of information. That not being the case, even a good movie could not keep my attention, so languishing in bed or on a chair provided no solace and became a perceived enemy.
One fine day, in an effort to return to my "old" self, I willingly made the effort to take my mother for her monthly doctor's visit, and then to my friend's salon for a haircut for her and a much-needed manicure for my weak nails. All told, including a substantial amount of driving, it was about a four-hour day, one of my longest outings to date. I was beaming, deserving of an award, dead tired, ultimately physically miserable. I needed to figure out ways of buoying myself, lecturing myself into believing that this was just the beginning. "Those who can't do, teach", I heard my clever inner voice utter. It was difficult to know whether I was being hard on myself or not pushing hard enough; was I demanding too much, too soon and not being stoically patient? There were no clear answers yet. I had read Nietzsche in college and remembered an apt point: "What does not kill me makes me stronger". I was beginning to smirk at myself: no one wanted me to suffer from overexertion, but my mind was leap years ahead of my body and I felt like I was at a virtual standstill. It is so important to take regular backward glances so that the small steps forward are noticed with relish. My four-hour day was actually laudatory.
Now it was time to schedule another doctor's visit, and I was armed with my rather long list, but when I called for the appointment, the office announced that the doctor was no longer accepting my medical insurance and had been off the plan for nearly a year! This was a stunning revelation, since his name was in the most recently sent book of providers and I had seen him twice. The office suggested that I notify the powers that be and find out what to do. That saga does not bear lengthy discussion. Suffice it to say that they permitted me to see him one last time, promising to pay for the three visits, but with no apologies. I spoke with the doctor, who furnished me with the names of trusted colleagues, which I presented to my daughter and her friend from medical school, who was doing a cardiology rotation at the hospital with which I had decided to affiliate. It is supremely important to gather your resources and make a well thought out decision, for this person will be pivotal in your treatment, attitude and, potentially, degree and type of recovery. I settled on a female physician, young, considered brilliant, warm, honest, respectful and completely up to date in the field.
Within literally seconds of meeting her, I knew I had made the best possible choice. MaryAnn McLaughlin was a delightful person, in addition to being thorough, kind and a wonderful listener. She has been selected to take over many of the patients of the renowned Dr. Valentin Fuster, since he had just been elected president of the American Heart Association. What an honor, and so deserved.
Thanksgiving was three days away, so she was filled with good wishes and encouragement. Although the third "insult" to my heart had caused the most damage, I would ultimately be able to live my life relatively similarly to before, with drugs, the continuation of a proper diet, reduced stress and appropriate coping skills and the addition of a structured exercise program. She addressed her medical concerns and suggested certain changes in medication and was open minded regarding vitamin supplementation. Finally, a dream realized with no nightmarish element.
Nothing comes easily with our strange health care system: the insurance company often takes months to pay the doctors, but it was only a week before I heard that Dr. McLaughlin was not on the plan either! They had lost all of her files and it would be at least six months before her eligibility would be determined. This absurdity was beyond my endurance, so I set out to address the issue, time consuming but ultimately gratifying. They "allowed" me six visits with her, more to be authorized if she played the system from her end. The secretary and I developed a love/hate relationship - I pushed her, helped her, bothered her, pleaded with her - and the daunting task reached completion with the doctor being added to the plan and me continuing to be under her competent care. Do pick your issues, since frustration does not enhance healing - but oh, success is so sweet!
The Thanksgiving weekend with extended family at my parents' home in what we call "the country" brought comments like "Oh, you look so great!" I guess people expected me to look dreadful, and those who had seen me in the first few weeks would not have been proven wrong, but by now my color had returned and I was a fantastic faker. Why, I could spend upwards of an hour, maybe two, enjoying my little cousins, judiciously nibbling at an array of foods not suggested for ingestion, smiling at other people's stories. I carefully kept from revealing that my eyes were propped up with invisible toothpicks and my head was reeling from the effort of just being there. I look to laugh, find humor just about anywhere, adore kids, but all I wanted was slumber! There was a surreal quality to the day, a mismatch among thoughts, feelings and actions.
Meanwhile, there were post-Thanksgiving sales at the Outlet Center ten minutes from my family's house, a command performance requiring my presence. I was called upon to muster both energy and enthusiasm, both of which resided in my mind, but not body. I dragged myself around, feeling at once delicate and amused, jubilant and foolish. I slept well that night.
By the end of the weekend, I was ready to go home and face a week that consisted of such mundane chores as bringing my car to the shop and going for my monthly blood work. Added to that was my husband's annual check-up with his internist who is also a cardiologist. He could see that my accompanying his patient was not easy. Equally evident was the tension between us, building by the day, but not stopping me from being in attendance.
Later that week, I had to go for a minimally invasive test to determine whether what appeared to be an old ovarian cyst was significant. Again I became tearful on the table, unable to answer questions without more emotion than made logical sense. Again I found myself explaining what had happened to me just two months previously. Again I was told how great I look, how young I seemed, what a shame that I had to go through even this test. I was repelled by my self-pity and hypersensitivity but pleased to be the recipient of the warm words of wisdom and kindness of the physician.
There is something disingenuous about feeling one way and looking another. There was nothing intentional about this dichotomy, just genetic good luck. For months it was a theme song. I would yank myself through each day, progressing in baby steps, wanting to tell people that I understood their reaction but it was causing an unpleasant one of my own. It was almost a throwback to adolescence when no matter what your parents told you about your beauty, you saw only the blemish on the end of your nose. At first I assumed that it was placation, not able to comprehend the veracity in the face of the mismatched equation, but even my honest and direct mother had to agree that the way I looked did not betray the reality. It was probably close to a year before I became accustomed to the chant, but on bad days I wanted to snarl and tell people I did not care how I looked, that the way I felt was the salient issue and that was still far from acceptable.
If my initial recovery was deemed typical, then it would be up to me to attempt to maximize it through careful experimentation. I accepted a part-time return to my responsibilities in the business, still relying heavily on our office manager, but willing to answer the phones, take reservations, deal with the moment-to-moment rigors of this "24/7" business. As I recall, I worked just a couple of hours a day, but it took the edge off my husband's responsibility so that he could drive knowing that his trusted helpmate was available and I was also able to continue to see my clients, my real priority.
I don't think a week had gone by before I became painfully, personally aware of the effect of stress on physical ailments. Between our marriage, which I had by this time named an "emotional divorce", and my reaction to the level of stress he brought to our difficult business-of-immediacy, I grew worse. I was tired, irritable, disappointed, more aware of the nuisance of the side effects of the myriad medications I was taking and just plain miserable. Startled by the extent of my reactions, I had to begin to retreat from the business, electing to instead use my mental energy to see my clients. Most of them came in the evening, so pacing myself to be totally alert at the end of each day was tough in itself, but a quarter of a century of experience and gratification made it as rewarding, stimulating and challenging as ever. Admittedly, the realization that I was in an impossible marital situation was just devastating. The downward spiral was reminiscent of the common, dizzying “ether dream” I had at age seven during a tonsillectomy. I felt as if I had too little control over my own healing and nearly none in the matters between us. He had refused outside help and was convinced that it was my problem, since he saw couples all the time who were in much worse shape than we, so according to his system of logic, we were really fine. When tenacity turns to relentlessness and desperation, acceptance is absent. There was no way I could reach him, but now I was beginning to accept that as fact. Now I had to tackle the issues of my heart on two levels, the emotional and the physical. Weariness is an enemy of good judgement, limiting one's ability to defend, assess, critique, decide. If the proverbial genie had arrived, my wish would have been to transform the marriage into a livable, loveable, daily delight. Usually, I was beyond feeling sorry for myself and was ready to take on the physical challenge, but the sense of being alone even when he was present was choking me. With all of this brewing, we had made plans to visit friends that weekend. It was early December, the weather was cooperative, their grounds lovely and inviting and their company refreshing. I was close to both of them and adored their kids. Confident in their discretion, I had discussions with each of them during the course of the day concerning the problems about which I had complained prior to the MI's. Like my mother, daughter and other friends, their wish was for maintaining stability, believing that it would lead me closer to the fullest possible recovery. I had a hard time helping them understand that our staying together was hampering me from improving, abetting the continuation of high levels of stress, one of the immediate causes of the attacks. I began feeling troubled and like a troublemaker, a complainer and a victim, heartless and heartbroken. By the time we left, I had spent no time with my husband and was not able to talk to him during the fifty minute trip home. I was crying silently, tears streaking down my cheeks, into my neck. I was too depleted to tell him what was wrong and too drained to allow myself to think, so I just allowed it to happen. I turned my face toward the window, and he never even knew.
My first stress test was upcoming within days after the perversely strenuous visit. This was not just the walk-on-the-treadmill variety, but an involved, three-to-four hour study involving intravenous radioactive dyes and "pictures" of the working heart. My daughter was a graduate of the hospital's medical school and was well-liked and highly regarded, so between that and the presence of her friend who was still working with my cardiologist, the team treated me like royalty! I had a cheering squad while I struggled on the treadmill and company during the waiting periods. I appreciated it, although I had no idea that this was not the norm! Herculean as it was, any unpleasantness was more than compensated for by their presence.
There was a dual purpose for the test: assessing baseline damage and clearing me to begin Cardiac Rehabilitation. The latter was at once terrifying and thrilling. Me? Exercise? Three times a week? It was a foreign language, but I was fascinated and had been told that the benefits could be "amazing". Good word - works well juxtaposed to my presence. I always joked that my driving leg was in the best shape of any part of my body and that if answering the door for my clients or the phone for business were considered exercises, then I was in fabulous shape. Never one for structured programs, I believed that treadmills and stationary bikes should be prettier, since they nearly always became decorations or closet substitutes. It would be interesting to meet my comrades, I was drawn to that, but the idea of voluntarily bouncing around on equipment -- at a rodeo, maybe!
During the week following the stress test, I had intentionally made several sets of plans, testing my endurance and filling my need to enjoy my life. I took a friend's precious eight-year-old to see "The Nutcracker", which she enjoyed thoroughly, mainly from her perch on my lap. On the way in to the building, it was almost humorous to keep her in view as she mounted the steps two at a time and went up and down three times before I could stagger to the top. I was undaunted, reveling in how adorable she was and how blind she was to my effort. Kids do not need lessons; they know intrinsically, enviably how to live in the moment.
I also committed myself twice to taking care of my friend's twelve-year-old after school, another venue with the reward of concentrating on something other than palpitations, extra beats, momentary chest pain, sleepiness.
Next on the agenda was a truly momentous occasion: lunch with my parents and a first cousin whom I had not seen in forty years. I remember being twelve or so to his seventeen and having such a crush on him. He was an even more handsome version of Ricky Nelson, ever-popular teen heart throb, and sweet, with an endearing smile. We had little contact beyond those years, and I was away at summer camp when he was married. For about a million and a half reasons, it was not until his wife found us via the Internet that this rendezvous occurred. He and his wife knew about the heart attacks from our phone conversations, but the face-to-face meeting brought the usual comments around how good I looked. Better than in my teens? In any event, sharing thoughts about relatives long since gone and using broad strokes to fill in the decades was precious. For me it was a brief visit, since I had clients to see, but we promised to get together soon, or at least in less than four decades.
Two days later, just a week before Christmas, I went to the cardiology department for the stress test results and yet another ECG and exam. My ejection fraction percentage had changed very little, a slight disappointment, but all in all, I was rehab-ready and would meet the staff at the end of that long week and then begin the program one week later. Would this be the beginning of palpable improvement, the missing link in my regime, the new wave, the holiday gift that would make me last a lifetime?