Chapter Twenty-Six: The TransAction Council

According to **Caitlyn, I was the youngest National Kidney Foundation TransAction Council Board Member at 24-years-old.

After that initial proud announcement, Caitlyn let out a jubilant little squeal when I confirmed that I was indeed accepting the volunteer board membership position for the 2006-2008 TransAction Council. Caitlyn said she was going to send me the paperwork to finalize everything and also the paperwork about our first TransAction Council meeting that was going to be held in Chicago, Illinois. Cailtlyn explained that there were phone conference calls throughout the year, but the face-to-face TransAction Council meetings were annually held in a random U.S. city/state and at a huge clinical event where there would be other transplant social workers and physicians, lawmakers, policymakers, and other transplant vendors and pharmaceutical companies all catered to improving the lives of transplant recipients. Caitlyn exclaimed: “It is a huge extravaganza in a really nice hotel…Hyatt Hotel, I think! You will gain so much information, meet so many other transplant recipients, and, most of all, get to meet other top-notch people that you can talk to! Trust me, Mary, this is the place where you will completely belong! We will have a blast!”

I received the preliminary paperwork and packets about the TransAction Council and trip to Chicago in the mail. I eagerly ripped open both packets and was particularly drawn to the booklet about all the other members of the TransAction Council. Smiling faces of middle-aged transplant recipients and shortened biographies of their personal battle leading up to the necessity of an organ transplant stared back at me. Right away, it was clear that I was the youngest. I saw from the surface that eight of us created the 2006-2008 National Kidney Foundation TransAction Council, and that although we differed in race, size, religions, age, and gender, we were the same with receiving at least one organ transplant and possessing an unstoppable drive to make a difference for other transplant recipients and candidates.

Before I knew it, the summer of 2006 arrived and I was nervously boarding an airplane all by myself to Chicago, Illinois for the very first TransAction Council Meeting.

The last time I flew alone was when I was 15-years-old and to Hong Kong, but a flight attendant was assigned then to watch my every move. I spent that flight to Hong Kong with fearlessness, innocence, and enthusiasm as I chatted easily and freely with the people who sat next to me. I had also visited Chicago before when my sister had lived there for a short period of time on an internship. This flight to Chicago all by myself was a whole different experience. Staring at the puffy white clouds and azure and limitless sky, I was incredibly excited, nervous, and scared about this trip to Chicago that was a combined professional and personal search adventure. I gripped on to the booklet with the people I was about to meet and not just see and read about. Would they like me? Would they not even take me seriously because I was the youngest? What would we do together as a group that would supposedly help others? 

From the moment I stepped off the plane and into the clutches of Chicago, I had to repeat to myself over and over: “Breathe.” It was dusk when I arrived, but my breath was caught on the shuttle ride when I stared in awe at the twinkling lights, tall buildings, and a vibrant and cosmopolitan energy that swirled around me. I almost stopped breathing again when I stepped into the glamorous Hyatt Hotel. Plush couches, fountains, and flowers and foliage just about everywhere. Almost immediately, I glimpsed a huge screen that read that the Hyatt Hotel welcomed the National Kidney Foundation with a list of all the meetings, activities, and events at this annual clinical meeting extravaganza. I shook my head that this was really happening, and although I was so far away from New York, I felt like I was somewhat home among all these people that I was about to meet that probably knew more about the organ transplantation donation world than me.

My hands shook when I gave my confirmed reservation that Caitlyn had helped me with to the concierge, and my nerves and body were rattled when I finally opened the door to my hotel room. It was absolutely gorgeous and breathtaking with a beautiful view of the Chicago streets of shopping. I practically fell into my bed with a goofy and disbelieved grin on my face. This was happening. This was really the start of something awesome and awe-inspiring.

The next morning, all the other TransAction Council members and I finally met at a buffet breakfast full of pancakes that dripped with warm maple syrup and crispy bacon to crunchy protein-filled cereal and fresh fruit. I could barely eat out of a jittery excitement that this was the beginning of something big and thrilling. I memorized each member’s face and their own special and unique characteristics. There was the TransAction Member chairperson, **Tanya. She was a burst of energy and life with her silken hair, even silkier and sweet Southern drawl voice, and beautifully made up face. When she introduced herself, she broke out into song about the miracle of her kidney transplant from her living donor younger brother. She smiled warmly at each of us, encouraging and drawing out ideas and each of our stories. Another was a doctor (*Dr. T), who had the calmest disposition and most soft-spoken voice. His functioning kidney had pumped life in him for over 20 years. He had snow-white hair and the kindest blue eyes. He was unlike any doctor I had met because he was so calm, reasonable, but had more than a touch of care and empathy. I did not think twice that he was this way because of his own personal health experiences. Most of all, I could not help but gaze at him with admiration that he had his kidney transplant for over 20 years. Did that mean that I could have my second kidney transplant for over 20 years as well, or maybe even a lifetime? He gave me hope that I could.

*Shelley was not a kidney transplant recipient, but her daughter was my age or a couple years younger and she already endured three kidney transplants. My mouth dropped open when Shelley informed us of this. She told her daughter’s story with a strong, yet shaken voice. Shelley was a picture of beauty with jewels that shimmered on her ears and around her throat and a stylish hair cut, but I could see in her eyes what I had seen in my Father’s every single day: “Why my child?”

*Caroline was a kidney recipient. She was quiet and seemingly the voice of logic and reason. She was unafraid to share her opinions and views, particularly in relation to her personal experiences as a means of helping others in our similar situations. *Allison was also a kidney recipient and who I considered the sweetheart with her locks of red hair and her lilting Southern drawl that was almost like a lullaby that tempted me to sleep, but the words that came out from her mouth were firm and tough.

When Tanya finally laid her glittering eyes on me, she said: “And, this is Mary. She is the baby out of all of us! We are going to take good care of you, show you the ropes, and I know, honey, you are going to have plenty to show us!”

Caitlyn’s eyes sparkled and she interceded with a soft and sentimental smile on her face, “Mary is the youngest transplant recipient that we’ve had on any of the TransAction Councils since the invention a few years ago. I know she will help and make a difference with the younger population of transplant candidates recipients.”

That was when all the layers of nerves and anxiety tumbled off of me and replaced with a serene comfort of warmth. I was home. These people understood me without me even trying to explain what had happened since I was born. Yet, out of all the TransAction Council members, I became the closest and friendliest with *Diane. Like me, she was short and petite, and a socialite that found it relatively easy to mingle. She was in her 40’s, African-American with mahogany smooth skin, and her dark hair in cornrows. She had also received a kidney transplant.

The 2006-2008 National Kidney Foundation TransAction Council

After the first introductory meeting, Diane surprised me with phoning my room number and asked: “Did you want to take a tour of Chicago with me?”

I was so shocked with her asking me this that I actually paused for a good couple of seconds before I exuberantly replied back: “Sure!” I never met someone who took the initiation and interest of spending time with me. It was often me that was eager to make plans and moves to get to know people better. Her reach out to me was a breathe of fresh air, and I had no qualms with sharing my health challenges when we munched on muffins overlooking the Chicago skyline as well as walked through the grand halls of the Art Institute of Chicago. She was easy to talk to. She was like a comforting blanket that I had been left without after all these years of health challenges. I felt an immediate connection with her, and was grateful in a way that words could never encapsulate.

I was shy and quiet on the second day that I was in a meeting with my fellow committee members, because I was so wrapped up with observing everyone and everything around me. Every person felt comfortable to throw out an opinion, a thought, a suggestion, and a comment. Most of us agreed on the following: 1) We wanted to educate others on chronic kidney disease and organ donation and 2) Something had to be done in regards to Medicare coverage for immunosuppressant medications, dialysis, and especially post-transplant care. The moral majority of our conversations focused on these two agenda items and we made an outline and plan of how to proceed. To address item agenda #1, each of us were going to write a letter to each of our physicians if we could provide such user-friendly and informative resources on the signs of chronic kidney failure in the waiting room areas—a bedrock for knowledge and kidney and organ donation/transplantation materials. We drew a blank when it came to addressing item agenda #2, but I was satisfied that we at least addressed this item that was related to the healthcare system. Although I absolutely and 100% agreed with those two major agenda items, I wanted to bring something else to this council. That “something else” was helping others around my age that had struggled with chronic kidney disease and the aftermath. I did not censor sharing with the other members about my wishes and goals. They obviously understood my passion and desire with their nods and smiles, but they did not know exactly what to do to make this happen. It did not help that I did not know what to do as well. More than ever, I was on my own in this mission to help younger transplant recipients and candidates. Though I was pleased that we at least discussed the healthcare system, I was unexplainably fixated on the younger recipients that were often forgotten and/or ignored because it was a rarity to encounter someone of my age who had lived their life in reverse with health troubles in childhood rather than in older age.

By the end of the third day, I began to feel like I was back in high school with feeling left out and awkward among others. When the other TransAction Council members and I were not sharing our commonality of advocacy for other transplant recipients and candidates, we talked about our personal lives. However, my personal life revolved around a job, gaining independence and separation away from my parents, and my few good friends, while all the other members yammered about their significant other, children, and even grandchildren. As usual, the majority of female members asked me: “Do you have a boyfriend?”

By now, I should have been accustomed to this question, but a steam of annoyance was released each and every time anyone asked me that. I forced myself to smile and squeeze out: “Not yet.” Then, meaning no harm at all, the female members said: “Oh, well, you are just a baby compared to us. You have a lot of time, sweetie. No rush!”

I bit the inside of my cheek. I had no desire to have a boyfriend. More than that, I was not a baby. At first, I interpreted it as cute and sweet that they called and considered me the “baby of the group,” but I began to feel uneasy and that the majority of the TransAction members did not take my passion seriously with being the youngest in age out of all of them. I wanted to say to them: “But, I’m not a baby. I’ve dealt with more years with my health than you have! You are just looking at my physical appearance, but have no idea how aged I really am.”

Dr. T and Diane spoke about their jobs, and so I was naturally drawn to and chatted freely with them. However, I could not deny that the initial feeling of “home” I experienced when I first met all the members at the buffet breakfast was fading and being replaced with loneliness. To combat this lonesome and unexplainable feeling, I forced myself to visit all the other social workers, pharmaceutical companies, and government officials when I was not involved with a TransAction Council meeting or event. I was hungry and greedy for knowledge to fill this void that was starting to open up like an infected wound. The balloon of exhilaration I had prior to Chicago suddenly popped and all the eagerness and enthusiasm disappeared into thin air. What was wrong with me? After all these years, I was FINALLY in the company of others who had experienced what I had, so how could I feel so alone? Why was I so obsessed with connections and especially to people around my age who had encountered all the health battles that I had encountered? Was I stupid to search and hope for such a thing, and perhaps missing out on what was right in front of me because of this search? Was my TransAction Council membership really going to revolutionize the U.S. Healthcare System and provide assistance? Why couldn’t I focus on the company of all these inspirational people who had also had transplants?

A solitude and confusion settled in me like a bad disease and I slowly withdrew from the other members and hid in my hotel room to stare outside at the Chicago skyline. I tried hard to ignore these burning doubts about the TransAction Council and myself if I was truly making any difference at all with helping others and whom I really was. Was I only my chronic kidney failure and kidney transplants that I had hid, or was I someone more? Who was I if I had never dealt with my health challenges for more than half my life?  Would I have even met all these TransAction Council Members if it were not for my health problems since childhood?  Was I being defined by my health problems by making this uneasy and struggling transition into the organ donation and transplant community through the National Kidney Foundation and TransAction Council?  Would I ever find the purpose of my life and myself?  The confusion and need to escape these vicious and pesky questions and thoughts were monstrous. To try to avoid the growing enemy in me, I marched off to the major sites of Chicago: Garrett’s Popcorn Shop, the Mint Museum, The Sears Tower, and many more to sit with these emotions all alone.

Diane called my hotel room a couple days before we were to depart. She asked: “Where have you been? What’s wrong? Do you want to talk about it and go out together for a cup of tea or coffee?”

I agreed, and confessed to her over a warm drink: “I just don’t belong anywhere. I don’t know who I am. All these years, I’ve hid all my health problems to be ‘normal’ and not be defined by all of that, but now I’m coming to grips that maybe who I really am is all I’ve known with my chronic kidney failure and kidney transplants. I feel old and young at the same time. I feel like I must have some sort of purpose in my life after everything that has happened to my family and me, but I don’t know what my purpose is. I don’t know why I’m so angry, sad, and confused all in one. I guess what I’m saying…or really asking is….do I let go of the past and forget everything that has happened with my health and move on like my parents most likely want me to, or do I take what has happened with my past to really make a difference for others and their future and my future? And, how do I make that difference?”

Diane paused. “The 20’s are like the teens, Mary. It is a transition phase of trying to find yourself. But, I can imagine that it is even harder for you because you’ve had so much to deal with since you were young. It is all you’ve known. However, you need to believe me that there are other people just like you either around your age, or maybe not around your age. Remember that age is only a number. More than that, it takes a long time to change for the better and to make this difference that you are all about making. You need to be patient. Everything will work out, and you will find whatever you are trying to find and find you in the process and what you are really meant to do. When in doubt, just blame the medications like Prednisone that have you feeling like an emotional mess.” Diane winked at me.

I chuckled, nodded, and finally forced a crooked smile to her. Yes, she was right. Yes, I was just going through the motions of finding that balance of sharing everything that had happened in my life without being defined by everything. But, that infected wound that was now opened and filled with the acidity of loneliness was bigger than ever. Boarding the plane to Chicago with my full and packed bags back to New York, I had actually never felt more alone and confused than ever before.

On the plane ride back, I thought: Who did I think I was believing and hoping that I could even try to make a difference when I didn’t even know how to help myself and when I didn’t even know what I wanted or what could make a difference? Why couldn’t I just get rid of this gnawing belief that true connections were only made with those who had lived their life in reverse as I had? Why couldn’t I stop struggling with who I really was?

I had spent more than half my life struggling and battling with my health as my worst and yet most comforting enemy that I was all too familiar with, eventually learning how to manage and control everything to the best of my ability. Now, I was in an unfamiliar and scary territory of what to do with the rest of my life.  I was in this twilight zone, purgatory, and transitory phase of finding out that my purpose of life was based upon who I really was without my health problems.  Yet, without my health challenges, who was I?  I had no clue, but I was about to find out and was getting closer to the truth of what laid ahead for me and what I was about to make happen. 

**denotes created name to protect privacy of individual

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