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Writing this book has brought back so many memories and made me think so deeply about misfortune and challenge people experience. I have always been ultrasensitive to people who have commented or complemented me on being strong through what I have gone through. And there have been people who have commented on their challenges with health. Generally, these comments are followed by the caveat that: “of course this is nothing compared to what you have gone through”. The number and complexity of the challenges we face in life is never a contest. My heart aches for people who have lost a parent at a young age, a spouse, or even more incredibly a child. It aches for people who have lost comrades, friends and family in war. Or who have witnessed or been a victim of violence.
My situation is, for me, a merely quirk of nature. An unfortunate circumstance, almost like being in the wrong place at the wrong time. Yet, similar to other losses they have the potential to shatter or sense of the way life should be and challenge our belief in ourselves. My losses are not of the unplanned or early death of a loved one, they are losses of valued parts of myself. That is why I talk so much about the need to hold on to the self that I have. When I refer to the self that I have, I am referring to what is in my mind, what is in my soul, and everything I care about. I have lost things that I care about in terms of physical and cognitive function, things like balance, which prevents me from ice skating, skipping, running, dancing, or doing any of those athletic things, and memory, impacting recall of words, names and making commitments to things I forget to follow through with.

What I have not lost is the people who are near and dear to me. I have my regrets, not because I did anything wrong, but for not being there for family and friends when they needed me. Being in a coma in the hospital when my cousin Stacie stepped in to give the eulogy at my father’s funeral. Being in the hospital after my second transplant when my sisters were faced with moving my mother to an assisted living facility. Needing to leave my students in the middle of a semester, attending to my Mother at one sister’s wedding while asking Kar, with severe spinal spasms l he had to prepare a dinner for 40 at the last minute when my other sister’s partner bailed. My brother John thankfully was the one who was there for him.

There is more, much more, However the points I want to make is:

1) When we are going through pain or illness we become self-absorbed;
2) There is no comparison between one person’s challenges, and another; and
3) When we are sick and others are left to pick up the pieces, it is no fault of our own.

This first article is about how I coped with the pre-transplant waiting period and returned to work afterwards.  My involvement in the Ropes course was months before I went into liver failure.  It epitomized the way I liked to spend my discretionary time.

Once I went into liver failure, I soon realized I could no longer participate in activities like this. The attention it took to protect others during high elements exceeded my capacity as encephalopathy made me forget small but essential steps. I had to quit my involvement as a course instructor, although I continued to take my students to participate in the ropes course challenge. Advance magazine

While I was waiting for my second transplant we were contacted by a local newspaper,  the Hollywood Gazette, in our hometown. We were happy to again tell our story. Any way to get the word out about organ transplantation is very important.

This third link is to a feature about me in the Florida International University Magazine. I remember being very nervous, not about the article, because again- any way to get the news out about organ transplantation is a good thing. I was nervous because the practice of this profile was to use a full-length photo. The prior featured alumni was a theater major who made it big in Hollywood!

The link to this article in OT Practice, is clearly the most informative and you will see it linked elsewhere on this website. I wrote this by invitation to contribute to a series of occupational therapists who, themselves had experienced a disabling condition. It was the easiest piece I have ever written as the words of my experience as a patient were so easy to express and the message I wanted to convey to other patients and to health providers, so strong. I am honored to have this article be included in the handbook for transplant candidates at the University of Miami-Jackson Medical Center.