Last modified: 11 May 2000
A Gift of Tears
Let me assure you that the gift of tears is a very special and personal one - and is much more positive than most people realize, especially in these times of opportunity to re-establish relationships and strengthen still others. Mary and I had some very special tear-filled moments - the first in our 26 year father/daughter relationship. I will only hint at those between Jay and I, your own imagination can fill in that picture.
A Time of Growth
As a man who found it hard to express such feelings, this was a time of growth. I had tolearn how to open up to such feelings and sharing. As a patient, I felt guilty at how much inconvenience I was imposing on everyone - my own concern, not theirs. My role was to sit there - with feet elevated (to keep the ankle swelling down) and wait! In the beginning my response to support offers was one of "I can do that myself "- which in fact I could (with some difficulty, but with my image of the male ego, holding onto that independence seemed very important). Family fought the weather and traffic challenges after full days of work, only to return at 10pm at night to maintaining the home environment (cleaning, laundry, paying of bills, answering family calls of concern, etc.) - while I sat with my feet up on the bed, reading my books. That is quite an adjustment - and some of the family will challenge my report of personal progress in this area but as the author, I will lay claim to it.
Just when you feel you've made real progress in this area, you take the test of returning home with medications that totally screw up your mental reaction to such support (again). For the first 5 months (see monograph on Medications) my family learned what it was like to live with a PMS patient. Let me assure you, from my perspective, they were at fault, I certainly wasn't. Their trust and love was tested to the hilt - and in my case, Jay especially (living up to those famous "for better or worse" vows), but also mom, Mary and Mike - passed that test with flying colors. The patient may not be able to react any differently from reading and understanding these experiences, their thinking is clouded by these PMS symptoms (as described by the transplant team in response to Jay's urgent call to them with "Who is this monster you sent home with me?"). You as family can understand, and with a personal gift of loving understanding, get through this dark tunnel that stretches from the surgery through about month 5 - so be prepared and hopefully you too can pass this test.
This adjustment of accepting support is was equally true in the area of nursing support. Here there is a fine line between accepting that beautiful support and remaining responsible for yourself as a patient. Together we shared education, tracking of medications and daily intake/output. They were the trainers, I was the student. At fifty, I was used to taking care of myself, so this was tough too.
Another benefit from having family there to support the patient lies in the retention and interpretation of what the doctors and nurses tell you. Quite often we found ourselves at odds over a direction. This difference of opinion resulted in a call to the transplant team for clarification, thus avoiding an error that would have taken place if only one of us had been there to hear that directive.
The Three Heart BEATS
When I entered the hospital to wait, there were two other patients already waiting. We formed a mutual support team and learned from each other's experiences what to expect and how to handle challenges that arose. One example of this was the false starts that sometimes occur - points when they think they have a donor heart, prep the patient, and later have to cancel the preparation due to some unforeseen complication (i.e., a donor's family changes their mind at the last minute). One of our group experienced such false starts twice and I can't describe in words the depression he experienced each time after the euphoria of expecting the transplant. Seeing this, we learned to anticipate such things and controlled our own reactions when the call came for our own hearts. In my case that even caused me to awaken after the transplant without realizing it had actually taken place - that's how good I felt. It was only after I asked the nurse "False start?" that she confirmed I was indeed beating with a new heart. Wow! The 3 Heart BEATS (Bodies Eagerly Awaiting Transplant Surgery) were a special mutual support group and we found things to do together as we waited out our many weeks in adjoining rooms. When we didn't feel like exercising, we got up and walked anyway because the team was going for their daily hallway walking, IV poles and all - quite a sight, I assure you. Even our families shared their support with all three of us. And then the miracle of miracles happened, all three of us got our hearts within the same week - talk about support systems. To this day we still talk and compare lessons learned and progress made. "Thanks, guys!"
Other Special Support Happenings
Talk about support! There was the day my 26 year old nephew, Jake, himself fighting a loosing battle with leukemia, showed up for a surprise visit. He had been to see his own doctor that morning and they said he was dying. From northern New Jersey, he had his family drive him the 2 hours down to my room in Philadelphia to fulfill a commitment he had made to visit me on that date! Impossible, but he did it! There he was, sitting in a wheelchair (so weak - barely able to talk) in my hospital room! What an inspiration. But then this was the same guy who had asked his doctors about donating his own heart to "uncle Jim" - an impossibility with his disease, but what a support offer that was. I cried when I heard that. I cry again as I write this. It was a very emotional moment. Jake didn't take the excuse of: "but I don't know what to say..." - he figured it out and said it in whispered voice - but so loud in his actions. I must tearfully report that Jake did pass away some 7 months later - 5 months beyond what any doctor said he could live. A real testament to the power of the human spirit. When you feel you've waited too long in your hospital room, think of Jake, in pain and isolated in a hospital room for 1-1/2 years! - with no hope of a transplant. In his case the bone marrow transplant couldn't save him. "Thank you, Jake!" He was a constant inspiration whenever I found myself feeling down. His visit was so unbelievable that after he left I could not believe that he had actually been in my room!
Jake's dad, my brother-in-law, Bill, offered support in his own unique way. We had been corresponding via tapes letters for many years now. In the hospital each letter became a treasure as he became more and more creative in its contents. Just picture this one example: I'm sitting on the bedside eating breakfast - but with earphones on attached to the Walkman unit with Bill's latest tape in it. He's on his way to the hospital to visit Jake as he continues his battle with leukemia and talking to me on his portable tape recorder the whole way. He is forced to stop as a train crosses the road ahead. Knowing our mutual love of trains, he punctuates his monologue of vivid description of the fall foliage and beautiful new diesel engine with the sounds of that train passing, whistle and all. As I often do in response to his style on those tape, I am not there in that hospital bed, rather I am sitting beside him in that car in New Jersey, watching and listening with childlike thrill as the train passes. It was great to get out for such mental trips often through my hospital stay. "Thanks, Bill!"
Another time, I'm laying on the surgical table awaiting an operation to implant a pacemaker. A little hiccup in the quiet 5 week waiting. From under the drape over my face all of a sudden there's eyes looking in and the voice of my local cardiologist, Dr. Magness. She offers words of encouragement and tells me that her nurse, Janet, has sent a gift - a stuffed dog in a little gift bag. "I'll leave it here so you'll have it when they take you back to your room after the operation." What a thoughtful touch at such an anxious moment. I relaxed and laughed myself off into the dreamland of the anesthesia. Just one of several times that these beautiful people found ways of reminding me that "they are thinking of you."
Another item my son Michael brought was a huge poster created by his fellow workers - people who only knew me through him - yet they all signed the GET WELL WISH from the people at MERCK. I mounted that on the wall across from the end of my hospital bed. Every morning it was the very first thing I saw with that beautiful upbeat message - from another group of "strangers" suddenly friends. Again, it meant more to my recovery than the pills I was taken every day - at least it seemed that way A great way to start each day, I can assure you from personal experience. Other groups of similar strangers formed prayer groups - in all forms of religions. It was so inspiring and supportive. I can never repay them for such love, but I'm trying to with the gift of this writing for you.
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Last modified:
11 May 2000