Coming Up for Air

As I lie in my hospital bed, attempting to breathe through my trach tube at a normal rate, waiting for my morning medication, and hoping to hear good, or at least manageable, results from my doctors when they come to me on rounds, my mind wanders. Despite the precariousness of my situation, I can’t help but smile as I think of my now monthly psychotherapy sessions. I try to imagine what the next one will be like – what I will focus on – how we will discuss my reactions to this latest hospitalization, and how my most recent fears are exhibiting themselves. For now, after 5 years of therapy, I am a seasoned expert at organizing my thoughts and finding the aspects of our psychological project that will make a lasting impression upon my feelings and my actions.

My breathing is like sailing. Sometimes I list to port, falling to the edge, feeling that I am going to flip over into the waves. Then I dream of coming up with every valley of water, coming up for air, gasping, breathing quickly, awakening, and then realizing that I am safely on shore, snoozing under the control of my ventilator. I drift back to sleep, to dream of something less onerous.

Neuromuscular disease comes in all varieties. Mine is the slow but progressive, anguishing kind that affects chest muscles the most. I had to stop work years before my retirement age, and somewhere in the first few years of desperation, I fell into depression. I don’t think I dream now of depression like I dream of drowning, but that is indeed what depression felt like for me: drowning with no hope of coming up for air.

Now coming up for air is a common event in my thought process. Everyday I must treat my lungs, take care of my tracheostomy, use my ventilator, use my wheelchair and walker, avoid travel, watch out for others who have colds or flu symptoms, and go into the hospital frequently for various treatments or because I have pneumonia or respiratory insufficiency. As I deal with this plague in my life, I also deal with the normal vicissitudes and problems of life. Fortunately, despite my illness, I have made it into my early 60’s; so, for better or worse, I have some of the problems of aging with which to deal. Most people would not be happy at this prospect, but I actually look at this as a positive thing, one which I did not expect to have. Living long with chronic disease is a goal, even if the intervals of illness are exasperating.

My mind’s actions and reactions seem slower than in the past; I have word-finding difficulty and often wonder what this portends. But, when I do come up for air, my breathing is under control, and I have had meaningful discussions with my husband, children, grand-children, sisters, and friends, I recognize the reality of my mental status and how much of it is due to my learning through psycho-therapy. Two people – one with expertise – both working hard to solve the issues of the one who is the patient –are able to bring success in learning, both cognitive and emotional, and changes in behavior, expectations, and relationships. 

I am that patient, and I am going to outline some of the problems that can be brought to the surface in good psychotherapy that are not related to psychopathology, but that can have a role in preventing psychopathology. These issues, when treated with the same thought and care as depression or neurosis, can have an everlasting effect on the life and relationships of the patient. For me, understanding them means breathing easier and having fewer problems coming up for air.

How do I describe what the therapeutic relationship really is and what it can and cannot do:

o In shortened form, psychotherapy can help a patient gain understanding of problematic issues, trust in the therapeutic process as a way to learn about relationships, self-confidence in dealing with relationships, and hope.

o Psychotherapy cannot give a patient a set of correct choices to make, cannot define right and wrong for each patient, cannot define future consequences of actions, must obey certain boundaries, and is not a source of or an authority about ultimate religious beliefs.

o  In more detail, I think the process of psychotherapy (and it is a process) must, to be successful, be a long-term commitment on the part of both therapist and patient. I believe the patient has to want to grow in both self-knowledge and understanding in order to change in attitude and behavior. I believe that, in addition to the bilateral commitment, success depends upon (a) the presence of clear-cut proper boundaries; (b) openness and truth in communication, with input from the psychotherapist that is helpful to the patient; (c) trust between both doctor and patient; (d) the wish for understanding of deep and meaningful issues, and (e) the use of medication as adjunct therapy but not as primary therapy.

When therapy consists of these components, then I think the following can be accomplished:

o The patient can gain confidence, at the same time recognizing that perfection in life is neither possible nor desirable; and the pursuit of perfection can make one miserable.

o The patient can feel comfortable expressing difficult thoughts or personal issues in the safe haven of the therapist’s office ( or even in home visits); and

o The patient can extend concepts learned in psychotherapy to daily life and to personal relationships. For me this meant being able to have a normal marital relationship, albeit with some restrictions due to my muscle disease. It meant extending my relationships with my children and calming their fears regarding my illness. It meant keeping my fun relationships with girlfriends and with my sisters and cousins. And, although I cannot travel, it meant inviting those I love to come see me and stay long enough to have valuable time together despite my need for daily rest periods.

What psychotherapy cannot do is more complicated.

o A psychotherapist even when extremely competent, cannot make decisions for a patient.

o Neither can he or she set moral standards, although a good psychotherapist will try to guide a patient toward good decisions when what the patient wants could be deleterious to herself or others. Such problems must be openly discussed in therapy.

o The psychotherapeutic relationship can’t take the place of a love relationship in a patient’s life, or a sexual relationship; although it can still be a significant and meaningful part of the patient’s life. The abrupt loss through sudden death, or serious illness, of the therapist, causes a real and sometimes long-term bereavement on the part of the patient. The same can occur in the therapist at the serious illness or death of a patient.

o And, a psychotherapist, no matter how competent, cannot promise a successful outcome for the patient through his or her efforts alone. Psychotherapy is a shared process of hard work; it basically must involve a contract between the therapist and the patient before success can be attained. In addition, psychotherapy cannot provide absolution for past misdeeds – what it can do is help the patient understand those actions, the underlying urges for those misdeeds, and then help create alternatives to prevent such actions in the future.

o And lastly, psychotherapy cannot be a source of religious belief for a patient. This does not mean that a patient cannot share religious feelings; however, the therapist should not attempt to persuade the patient to accept a particular religious path.

Given these ideas, here are some of the areas where the psychotherapeutic work between my therapist and me has provided a new mental and life structure for me to adapt to and learn from.

1. Developing a new mental and life structure:
My life is different now that I have spent 5 years in psychotherapy. Not only am I no longer depressed, although the ostensibly original reason for that depression still exists and has worsened (my chronic, unremitting neuromuscular disease); but my reaction to bad things in my life no longer consists of blaming myself, of feeling ashamed, or of feeling that my disease makes me less intelligent, less interesting, or less able to give love. It does make me sad and fearful when my disease takes a turn for the worse, but those are feelings that relate to real events in my life. If anything, I understand the basis for my original depression and in many ways feel grateful that it led me on the path of psychological work with my therapist (see The Gift of Depression, Psychiatric Times, Jan Goddard-Finegold).
 
2. The adaptation to new realities, including loss and disappointment.
There is no way that psychotherapy can take away the difficulties in life. In fact, when successful, it draws attention to them in a way that allows for greater understanding of their causes and their likely outcomes. When we discuss problems in my psychotherapy, we can, over time, come to grips with changing realities such as loss and disappointment. I had to accept the fact that my work life as a pediatric neurologist was over 11 years before my retirement age, at a time when my professional goals and abilities were at their height. This led to great disappointment that was only alleviated after I learned in psychotherapy, and discovered on my own, that there were many options for me in the big world around me, despite my being truly disabled. This took time, effort, and energy on my part and that of my therapist, but mainly the adaptation had to become part of my inner self. It is now something I look upon as an advantage – the advantage of numerous choices for my behavior and for my relationships in life.

3. The most difficult feelings I’ve had to deal with as my chronic muscle disease has progressed have been fear and uncertainty. 
No matter how well things seem to be going, at any moment I can be hit with another infection or increased difficulty breathing (as examples). I fear most the feeling of suffocation; luckily, my tracheostomy has alleviated much of that feeling. This has not lessened my feelings of uncertainty, however, and I feel that uncertainty is one of the things with which I am constantly battling with the help of my psychotherapist. How can I not feel the pangs of uncertainty when my major issues in life revolve around maintaining a certain amount of unpredictable physiologic stability?

4. With all of my need for adaptation to changes in my health, I’ve also had to deal with the difficult work of lessening my anger and healing old wounds.
I think anger is a natural response to having both physical disability and a likely decrease in the length of one’s life. My anger has decreased over time, since I began to realize that anger was taking up time and space in my inhabitable world, and in itself was not really solvable.  

Being angry was not going to take my disease away. Being angry was not going to reduce my need for a wheelchair, for multiple doctors’ visits, multiple medications and, in the past year, multiple hospitalizations. I am now resigned to the fact that most of my day is spent doing the things that keep my lungs open, since muscle weakness in my chest wall has caused restrictive lung disease with abnormalities of oxygen diffusion. So, as Churchill said, “It is what it is.” There is not much else to add to that, except that my therapist and I have discussed the possibility that I have sublimated anger into healthy aggression that has been channeled into the vigorous pursuit of the best possible accommodations I could make, with the best available physical, psychological, and spiritual help.

As for the healing of old wounds, that is another difficult issue. Old wounds may never really be healed, but they can be looked at differently. I felt hurt and incomprehensibly ignored by my mother during the last many years of her life. In the last 5 years of her life she had a form of multi-infarct dementia and died finally of a massive stroke. However, she was able to make jokes with my father, talk with my sisters on the phone, enjoy her great-grandchild, and watch sports and DVDs on TV.

Before and after that time, however, and during my depression, I tried to reach out to her. For years there had been an unexpressed enmity and jealousy on her part towards me. I felt that there were 2 reasons for this – first, I was the first born and favored by my father, engendering a certain amount of jealousy on her part. Second, I had accomplished the things educationally that she had always wanted to do, but, because of the depression and war years, had not been able to do. 

She had majored in biology at Duke, was an excellent student, but had no money and no family support for continuing any education. After college she worked for a short time for the army, lived at home with a demanding and judgmental mother, and finally decided to marry her high school sweetheart and start a family. (See photo of my mother and me in 1954 above.)

She had also had 2 very significant losses – first her father died of lung cancer (without having been a smoker) in 1943, and then her older sister died unexpectedly of an infection leaving a 3 year old daughter and a husband with multiple sclerosis. My mother wrote to my father about how she thought of her dead sister frequently, sometimes so frequently that she spent whole days crying. She also grieved all of the rest of her life for her father. 

My life, of course, had had many advantages. I went to an Ivy League school and then to medical school there. After that, I attempted to be close to home, but the best program in pediatrics anywhere near home was still 1200 miles away, in Texas (my parents lived in Florida). Although I came to visit frequently, after my illness became more pronounced, it was not possible for me and my husband to bring all of the equipment I needed to sustain me on an airplane (we tried but ended up with a severely damaged electric wheelchair). Driving to visit was not possible because I became severely fatigued in situations without my own hospital bed and with upsets in my daily regimen.

The last time I saw my mother was at a surprise 60th birthday party organized by my husband and good friends. My mother came along with my father, sisters, and cousins. It was grand. And, I was able to tell my mother how much she had always meant to me, and what a role model in life she had been. Afterwards, however, she returned to being completely uncommunicative. I would call, but she would not talk to me. This was hurtful, but I’m not sure this response was voluntary. I’ll never know. She died before I could try to find out and reassure her again about how much I loved her. What I do know is that I felt rejected and wounded by her responses to me all during my adult life. I discussed this frequently with my therapist, and while the hurt never left, I began to see my mother’s responses to me as something I just had to accept; and, I had to assume that perhaps she was not capable of making judgments about her own reactions.

I forgave her, but I did not forget her earlier lack of understanding and support. Similarly, although my feelings regarding her behavior became less and less a part of my life, they didn’t leave completely. What I was able to do, with the help of my therapist, was recognize that mine was a “good enough mother,” and that there were many good memories of our life together that I could try to focus upon in order to re-organize the ladder of thoughts that I had about my mom. He also brought up the possibility that I gave the loving attention I wanted from my mother to my children, my students and my residents.

5. The difficult work of accepting the lack of perfection in ourselves and in our lives and in overcoming guilt.
One of the things my first therapist brought up in our early sessions during my severe depression was my need for perfection, in myself, my actions on the job, my care of my household and my husband, and in my relationships. He made it clear that this particular attitude was deleterious to solving the problems of depression. My second psychotherapist, whom I began to see in 2005, after the death of my first therapist, emphasized the same idea. In fact, he often used the quotation, “The best is the enemy of the good.” We are still looking for the origin of this phrase, but it encloses the main problem of depression. We simply cannot have perfection; not everything will be the “best,” and what is the “best” anyway? Accepting ourselves as good enough is a major part of the treatment of depression (see The Gift of Depression, Psychiatric Times, Jan Goddard-Finegold). 

At the same time, I had to deal with feelings of guilt that had built up over the years – guilt at not being close to my primary family; guilt at not being able to help with the day-to-day care of my mother; guilt at not being able to travel to see my family (of course, we invited them to come here), guilt at causing my husband to have to take on a caretaker role that he would have preferred to avoid.

All of my life I had had the idea (or fantasy) that as oldest sibling, I would never leave my sisters alone with the task of caring for Mom or for Dad. Then, without warning, I was put into the position of being the one who needed the most help. And that stung.

I also have always felt guilty for holding my husband back in his activities, travels, and social events. He has also had to deal with my multiple hospitalizations, the uncertainty of the disease, and the unpredictability of reliability of my physicians. As a result, we have a mutual understanding that he can go to all of the events that we would have gone to as a couple – to school plays in which our grand-daughter stars; to graduations, especially this year when our grand-son graduates from high school; to family gatherings for new babies (so far just boys, each of which has had a bris); to family weddings. These are just examples, and he does not go to every event. But our understanding is that he can go to any event he chooses.

I have been able to get him to relax about my care, as I have long-term care insurance, and have a daily caretaker. If I need someone at night because he is out of town, my caretaker organization can provide someone on reasonable notice. Or, my loving daughter, one of my friends or one of my sisters will come to stay with me. It has taken time for me to overcome guilt at having so many requirements for daily living. But I know that he knows I would not have chosen my life to take this turn. 

6. The important but difficult task of meeting aging, disease, and death with as much equanimity and grace as possible.
This title suggests that I want to meet these inevitable issues with no problems whatsoever. This brings in my wish to be able to control my life and to react in that perfect manner that I have tried so hard to do without…how things go ‘round and ‘round! But, I do recognize my needs for perfection and my wishes that I will know at each point when I am dealing with problems that are indicative of aging, furthering of disease, and on-coming death. 

I honestly don’t know that I will know when those issues are paramount. At this point, my largest issues revolve around acute disease (lung consolidation, pneumonia, urinary tract infection, renal tubular disorders, breathing difficulties requiring more oxygen or more time on the ventilator, etc). My daily life revolves around preventing more disease and going to numerous doctors’ appointments.

I must mention that it is also difficult to recognize when some of these issues are actually causing problems. Do my severe headaches reflect low oxygen? Is a pain in my chest something to take seriously, about which I should call my pulmonologist or cardiologist? What symptoms are from medications I am taking? Even as a physician for over 36 years, the answers to these problems are not intuitive. And, of course, there is the feeling of guilt that I have of “bothering” my physicians for problems that may end up being trivial.

Aging, of course, is something that we have no control over, and that provides problems of its own, separate from and combined with the problems of disease. I have to say that I have a certain sense of satisfaction in having reached the time when my physicians can say, “Well, there are things we can do to make that better because this problem is just due to your age!”

On the other hand, meeting increasing disease and the closeness to death are issues that I have not really accepted. I say that I have, but in truth, these things scare me. I have tried to prepare by providing my own obituary, and putting it, writings I have done over the years, and several CDs with my favorite religious and secular music into a box labeled “For Milton in the Event of my Death.” This is the easy part.

The difficult part is recognizing that I don’t and won’t know how death will come. My disease suggests that it will come with severe respiratory insufficiency and coma, in themselves not such bad things from which to succumb. However, respiratory insufficiency is something I deal with every day, and it is not easy to live or die with. I would hope that my pulmonologist would be able to give me the medications that prevent the anxiety accompanying respiratory death.

I’ve also prepared by setting up the appropriate people to take over my legal and other decisions. Of course, my husband will have power of attorney for all decisions with help from my lawyer sister and physician brother-in-law. I’ve also asked my psychotherapist to help my husband; not to be his rabbi, but to be there to reinforce what he knows my wishes to be for end-of-life care and decisions. I have written these on legal papers which doesn’t make my acceptance of the likelihood of early death any easier. There are some things we will not be able to answer on our own, or with the help of a therapist. I do know that I did not exist for eons before my birth – I was nothing far longer than I have been something. This idea doesn’t necessarily give me solace, but it does make me say, “Well, there are many people who have met death before me. Why should I be different?”

So, I go on doing the many things each day that keep me alive, and I try to inhabit this world with wonder and appreciation. I have an incredible husband, great children and grand-children, and wonderful friends, all of whom give me support. 

I belong to a group that we call the “Tuesday Tootsies,” all having met at the Beautique, a local salon. The Tootsies were instrumental in helping my husband plan and carry out my surprise 60th birthday party. We are notorious for our hilarious antics, birthday parties, and holiday celebrations. Some of the older men who come to the Beautique ask to come back to the manicure section of the salon to sit with us and join in our fun-filled time there. 

That doesn’t mean that the Tootsies ignore the awful parts of life. We discuss the problems we are all facing, and when I am in the hospital for extended stays, the Tootsies come to visit and to make me laugh. We are truly good friends, and, as Fred Rogers would suggest, we have made our own neighborhood.

My psychotherapist and our psychotherapy project have helped in many ways, and I feel that we have covered most of the issues that I have discussed in this paper. There will be others as I go along the journey of life, however foreshortened that may be. I look at each insight as a new guiding light as I float toward an unknown shore. I go down in the water, and then I return to the surface, each event giving me the satisfaction of breathing without fear.

Mentally and physically I have to deal with the dread of not being in control, of knowing that my body is betraying me, and of knowing that there is no certainty, ever. But so far, with the love of my family and friends, the help of my therapist, and the support of the rabbis and cantor of our synagogue, I have continued to rebound, even when very seriously ill. 

Somehow, when I am almost at the bottom of the sea, I am lifted by a wave to the top again. I have come up for air and am filled with exhilaration and gratitude. So I shall keep on going and changing, hoping that in this process I can still be a force for giving and loving despite the changes in my life. As a Burkina Faso (African) proverb states, “When the drumbeat changes, the dancers must adapt.”