Chapter Twenty-Seven: Connections

My Dad and Stepmom greeted me with wide grins and open arms when I returned back to New York, but their faces turned wrinkled with worry as soon as they saw my crushed expression.

“What happened? How was it?” My Dad asked expectedly.

“Okay,” I said sadly.

My Dad’s face scrunched up in confusion and haltingly asked: “What is it?”

I shook my head. It was just a bad idea that I had revisited my childhood embedded with one medical episode after another. It was just a stupid belief that I tried to find and connect with other transplant recipients after my past, and especially those around my age, because there was no way I could make a difference when I had no idea what my purpose was. I should just let go of the past and moved on as though my kidney transplants and health obstacles had never occurred. All I wanted to do was to forget the TransAction Council and return to the life I knew now: A routine job without anyone knowing in the slightest what my past demons consisted of. I somehow felt like I was back at university again when I had attempted to create this new me and by keeping my secrets of my health well-hidden. I had all the intention in the world to forget and move forward towards my future free of anything that had to do with my health, but the TransAction Council coordinators, Caitlyn and **Erika (Caitlyn’s assistant), had other ideas and plans laid out for me. Both Caitlyn and Erika must have sensed how left out and confused I felt because they soon began to veer away from my involvement with the TransAction Council as a member by forwarding me contacts of people around my age who had kidney transplants and who happened to be on the same search as me—people just like us.

Caitlyn said softly, “You stand out, Mary, and you can’t give up on yourself and others just because you haven’t found these people around your age or this purpose that you talk about. You are different from other kidney transplant recipients with how young you are and this hope that you have to make a difference in the transplant community, and with people around your age. I know you want to find other people just like you , so let us try to do that while juggling your membership as a TransAction Council member. Maybe you’ll find what you are looking for after you meet a couple other transplant recipients who are your age, and maybe you won’t, but let us give it a go.”

The National Kidney Foundation first introduced me to **Katherine, a kidney transplant recipient a couple years younger than me. Erika told me that Katherine was a second-year university student who was studying communications and media, and she was very eager to meet with other kidney transplant recipients around her age. I was just as excited that I was FINALLY going to meet with someone who knew firsthand what I had been through. We quickly connected over cell phones that we would meet at a Starbucks Café.

When I first saw Katherine, I blinked my eyes a couple of times. No one would ever guess that she was ever sick. She was like a fashion model magazine poster child with her flowing dark hair, wide and lively brown and tinted green eyes, and slim and petite figure. Even after all the weight I had managed to lose post-second kidney transplant and dwindled Prednisone dosage, I looked like a meatball next to her. We bubbled enthusiastically and into fits of giggles when we both learned that we were from the same Westchester County area. The only difference was she loved New York City, while I was more than content in the quiet suburbs. She had a zest of energy and life that surpassed me. We swapped kidney stories and discovered uncanny coincidences of how we both dealt with kidney failure as toddling tots and had our first transplant at around the same tender childhood age. We even discovered that we both had **Dr. Winthrope as our pediatric nephrologist.

“No!” she exclaimed, “I can’t believe that you also had Dr. Winthrope!”

I bobbed my head like I was dunking for apples and said: “Yup!”

“Oh!!” she shriekd, “He is the best!”

We burst out laughing again, and then we started to throw around words like “immunosuppressant medications” and “organ donation” as if they were words like: “How are you doing today?” It was eerie—and so extremely wonderful. This was what I had been searching for my whole life. Someone understood me. Someone out there just “got it.” There was that shimmering connection that I had craved for so long. I was not in some bubble with only my health experiences to keep me company, but, alas, the shimmer faded when Katherine whispered to me towards the end of our meeting and agreeing to see one another again:

“So, you are finished with college and all that…tell me, how did you get through all the partying and drinking without affecting your kidney transplants? I have to tell you that it is so awful when I have to turn down a bunch of booze from some hot guys.”

My face immediately flushed red. How could I tell her that I was a geek that considered an alcoholic beverage as a tangy wine cooler rather than Coors Light or Jack Daniels? How could I tell her that my greatest achievements at university were writing to politicians, joining extracurricular activities, peeling away my layers of lard, and finding me in every true way? Could I tell her about how I landed in the emergency room after two mixed drinks and now, because of that, I would never touch anything alcoholic again? I knew I should not have felt ashamed, but I really did feel awful at that moment with Katherine at my lack of partying and social extravaganzas at the usual peaked wild university timeframe.

I conclusively shrugged helplessly and admitted: “I don’t know because I don’t drink and I don’t party.”

There was an uncomfortable quiet. She said rather helplessly with a disappointed expression on her face, “Oh, I see.”

And, that was when I knew that our fast-formed friendship had fizzled. Sure, we exchanged an email here and there every now and then, but it was never real because we were not true friends. When we did contact, it was to toss around medical jargon as everyday language rather than ever get together for a meaningful conversation. That original sheen to the connection that I thought was there lost its luster and became nothingness. Would I ever, ever connect with someone or just anyone around my age who had a kidney transplant? Was I just some hopeless case and destined to be an oddball, rarity, and freak of nature?

Then, **Janice was introduced to me by the National Kidney Foundation. Again, Starbucks was the meeting place for Janice and me. She was a year older than me with long straight auburn hair and brown eyes. There was an aura of reservation, determination, and quiet dignity to her that contradicted the enthusiasm that Katherine and I had. Janice had suffered from lupus and had to have a kidney transplant when she was 22-years-old. Unlike Katherine and I, Janice was relatively free from health problems when she was a child. She talked about her health experiences; I listened with an intense interest. When she finally asked to hear my story, I was awkward and tongue-tied because my life story was just too long and complicated. I also had a feeling that Janice was not interested because she barely looked at me when I tried to explain everything. The only time Janice lit up like a Christmas tree was when I told her:

“Do you ever feel like you don’t belong anywhere?” I asked with a confession right in the question.

Janice finally looked up at me and into my eyes with her brown eyes smoldering with a strange intensity: “Of course I know what it is like to feel like you don’t belong, and all I can tell you is that the ONLY place I ever felt like I belonged anywhere was at The Transplant Games that I went to in 2006, which were in Louisville, Kentucky. National Kidney Foundation funds the games every two years, and they are basically an Olympic-style event that transplant recipients compete in. There are all these sports. I did the swimming. You absolutely MUST go, Mary! It is the only place transplant recipients like you and me feel like we are home.”

I slowly digested this information. Why did The Transplant Games sound so familiar to me? I racked my brain and realized that I had first heard about The Transplant Games when I was in Chicago, Illinois at the TransAction Council meeting. It was in a dimly lit room that screen shots of transplant recipients participating in this Transplant Games event was introduced to me, but hearing Janice talk about them with such exuberance peaked my curiosity even more. Our meeting turned out as a more factual encounter rather than friendly when she only lit up that one time when talking on about the Transplant Games. That one time Janice and I met was the last time. My search for the kindred kidney connective spirits was slipping through my fingers, but Janice bringing up The Transplant Games made me curious to find out more about them while still continuing my TransAction Council duties with my fellow council members. However and most truthfully, my TransAction Council duties and bonding with the other fellow members (with the exception of **Diane) were falling to the wayside as I was introduced to more transplant recipients who were around my age.

It was not until my TransAction Council membership came to an end in 2008 and I met **Harry that I somehow knew that I could not escape my past and could only use everything from the past to lay out my future. Any qualms I had with locating my kindred kidney connection were put to a staggering halt. Erika put me in contact with Harry, who was going to be a member of the 2008-2010 TransAction Council. Harry was a few years younger than me, and apparently very excited to speak with others who had already served on the council. We agreed to meet at the Starbucks in Grand Central. Though he had called to apologize on the phone that he was running almost an hour late, my pre-punctual self was getting more than a little annoyed and impatient as I continued to eyeball my watch out of the corner of my eye while browsing aimlessly through a transplant book that Caitlyn had loaned to me, and that I planned to give to Harry.

I suddenly felt the table shake. I looked up to see a tall and thin young man with a shock of red hair and indistinctive-colored eyes hidden behind wire-framed glasses. Was this Harry?

“Are you Mary?” the young man asked, his wispy voice matching his waif demeanor just perfectly.

I nodded, and before I could say anything, he said in a quiet voice: “I’m Harry. I’m really sorry that I’m late.”

All I could muster was, “Mmm-hmm…”

He paused and finally said: “Let me treat you to a cup of tea as a way to make it up to you.”

He went to the long line to buy me a cup of green tea. When he returned, I handed him the transplant book that I was browsing through and said, “Caitlyn loaned this to me. I thought that you would like it, and you could also return it back to her.”

He nodded slowly, and sipped his tea. There was an awkward silence between us that made me wonder if this young man was really Harry, because Erika had described him as very eager and enthusiastic rather than the mellow, quiet, and soft-spoken man that was in front of me. My very first impression of him was that this could not be the right Harry. Little did I know that looks were really deceiving.

He asked me casually when he downed the last of his tea: “So, what’s your transplant story?”

I was initially taken a back by his bluntness, but went on to try to give him the shortened preview of my life. As soon as I started talking, he immediately opened up about his transplant story. He was what I considered an “in-between transplanter,” meaning that he encountered his health problems not at a young age like Katherine and me and not an adult age like Janice, but when he was in his pre-teens and teens. To me, this was the most challenging age to face a sudden health hurricane because of the additive adventures of hormones and high school. Harry was either a supreme actor or extremely laidback when he chortled: “I don’t have to tell you, Mary, that we were just the luck of the draw. I can’t speak for you, but I can certainly speak for myself that I’m just a mutant.”

When he said that, that spark, chemistry, or jolts of lightening bolts went off that this was it—this was the connection I had been searching and craving for. This was the real thing. That is when I noticed that, hidden behind his wire-framed glasses was passion to his indistinctive-colored eyes that seemed to range between blue, to gray, to green. When I looked closer into his eyes, I saw then that one of his eyes was green and the other was blue. They were the most beautiful eyes I had ever seen before.

I swallowed, giggled, and shared, “Yeah, I totally get that. I could not be more of a mutant.”

Harry completely understood one of my pleasant philosophies in life was that “weird was good, normal was boring” or “I rather be odd than even.” Not only did we exchange our kidney transplant (mine with my two kidney transplants and his with his one transplant from his living donor mother) experiences, but we also discussed endlessly about the U.S. healthcare system, travel, psychology, writing, books, tea, politics, religion, life, death, relationships, people, and every serious yet silly and untouched topic. It was so easy to speak with him. It was so simple to laugh with him one minute and then turn the tables around to serious the next minute.

We continued to talk on and on as though there was no sense of time. It was as though we had known each other forever, or maybe that I had known him in some past life. I was when we parted ways, but all good things indeed did come to an end.

On the train ride home after a night of thought-provoking and insightful conversations with Harry, I wondered as I stared out into the blackest of nights if he and I had not received kidney transplants and gone through what we had gone through, would we have ever or even met? Would I have never met Katherine, Janice, and the TransAction Council Members, and found the National Kidney Foundation? At that moment, two emotions and realizations gripped me.

One was a knotted fear that snaked around and in my stomach: What if I lost Harry after all this time of searching for a true connection rather than a missed connection?

The other was an unexplainable sensation of clarity and understanding that all the pain and challenges had led me to this starting point of meeting other transplant recipients just like me, and that I now stood at a crossroads of taking all the past pains and challenges to something bigger, larger, greater, and unexplainable. I did not find my purpose in the organ donation and transplant community right then and there on that train ride, but a sensation filled me that a new and exciting path was budding up and opening for me because I was letting it.

After Harry and I first met, we fell into a zigzag tango of contact where we would not hear from one another for months at a time, and then we would suddenly engage in routine communication. When we were back in our usual means of text messaging communication mode, those gaps of time when we did not communicate were non-existent. He updated me about the 2008-2010 TransAction Council. I found out from him and the coordinators that there were now a few members who aged 30 and younger on the committee. I was jealous. I ached and wished that I were a member of the 2008-2010 council. When I told this to Harry, he looked at me puzzled and could not understand why. I responded with an equally confused expression and explained: “Well, because you have people around your age to connect with.” He shook his head, did one of his usual chuckles, and then said rather seriously: “There are two other members on that committee around my age. One is 25-years-old. The other is 30-years-old. I don’t connect with them like I do with you. Just because you had a kidney transplant and go through a bunch of health stuff does not mean that you will connect with others who also go through the same stuff and especially those around the same age as you.”

Time stood still when he said that to me. It was downright candid with a twist of a gentle nudging to make me see that I had been wrong in the way I went about my friendships and relationships with this stubborn and unexplainable search. I had met with many transplant recipients around my age and even connected with Harry, yet I never felt so alone, misunderstood, and out of place. Why was that? I was trying desperately to fill a hole of loneliness and confusion. Just about all my life, I labeled, hoped, believed, and judged that as long as I found someone out there around my age who had been through what I had been through then I would not be and feel so alone and left out. I did not understand my health problems and why it had to be me instead of others. I did not understand why I grew up feeling so out of place with people around my age. The reality was that no one could explain why I was born with chronic kidney failure and that I had no choice but to overcome. No one could fill that hole and make me feel that I belonged. I could only depend on myself. I had been forcing friendships with trying to find that kidney connection when relationships and friendships actually evolved on their own time through conversations, time well spent, and an unexplainable and mutual connected chemistry. There were people that clicked and then there were people that did not. There was no clear-cut answer or logical reason behind those connections or missed connections. I had missed out on possibly some of the greatest connections with extraordinary people because of this senseless search.

Over time, my friendship with Harry diverged in slow motion from frequent to nearly no contact. He had become a faded memory that made me smile sadly when I dared to think about him in the present or even the future, yet I could only smile with content when I remembered the last time I saw him.

The last time I heard from Harry was about his experience at the 2008 Transplant Games in Pittsburgh, Pennsylvania, which I was too late to attend and participate in. When he returned, there was that same kind of euphoric glow or light that radiated from him as with Janice when he shared with me the endlessly inspirational and magical stories: The Priest who ran the 5K and donated his kidney to a complete stranger, the team members that Harry formed unbreakable bonds with over organ donation and transplantation stories, and the one place that he said that he belonged.

When I asked Harry: “How would you describe the Transplant Games?”

His eye colors changed in the light again when he looked up to the blue sky, and then he finally said to me: “Mary, I can’t tell you. There are no words. You have to experience it. You have to live it.”

And, so the last time I saw Harry, I made a choice right then and there to attend the 2010 Transplant Games, because I knew after hearing from Janice and Harry that it was going to transform my life in the most indescribable of ways that would lead me away from this senseless connection search that I had wasted too much time and years on to my ultimate and truest purpose in the organ donation and transplant community. 

**denotes created name to protect protection