Chapter Twenty-Nine: My Purpose

“There’s something different about you that I can’t explain,” my Dad and Stepmom said to me when I returned from the 2010 Transplant Games.

What they saw in me and what I felt could not even be explained or described.

The bottom line was: I could not get the 2010 Transplant Games out of my head.

Here I was, back to the familiarity and predictability of routine life, but all I could think about was the magic that was truly in the unpredictability of life. The unpredictability of all that I experienced and saw at Transplant Games affected me in the deepest and most profound of ways. I obsessively and repeatedly clicked and clicked on my computer mouse to view over 200 photos that I uploaded on to my Snapfish photography account to ensure that the memories and images that continued to play in my head were real and not just a dream. Each vivid photo brought back the distinctive and clear memory of an organ donor family that I connected with or a transplant recipient that I befriended. Remembering caused that familiar heavy feeling that sat on my chest, a sentimental smile to appear on my face, and that strangely empty and almost numb feeling that I had lost and wasted too many years of my life hiding my health. Night times when I crawled into bed to sleep were the worst. I always ended up sleepless, restless, and tossing and turning with the memories and experiences of the Transplant Games and the mystery of my anonymous organ donor families plaguing, haunting, and vibrating relentlessly in my mind.

Less than a week after the Transplant Games and on the darkest of nights when the world and people were soundly asleep and dreaming, I was wide awake with the emotions inside me finally exploding to the outside when I began to hammer away on the keyboard to try in vain to describe the indescribable Transplant Games. To enhance my article, I researched and read endlessly about organ donation and transplantation and the massive organ shortage, how people died waiting for an organ transplant, how people lived again from one decision, how families could make that single and hard-hitting decision in their time of grief and tragedy, and how one decision from the families to donate their loved ones’ organs transformed the transplant candidates’ life. Though I was bleary-eyed that night, my mind was never so wired and awake with consciousness that I was beyond lucky and privileged to be a part of the organ donation and transplant community that was exposed to life and death day in a day out. How could I have been so stupid and ignorant to suppress me and avoid such a community? How many people were going to die waiting for a life-saving transplant because people like me who had received a transplant had been too scared to share the story that could save lives with people registering as an organ donor? Without a second thought and trying desperately to make right after all these years, I finally submitted the article about the Transplant Games and the utmost need to educate the public about organ donation and transplantation to then register as an organ donor to my local newspaper as a “community submission.”

With fingers crossed and my breath held, I whispered to an empty room and myself as I lingered to stare at the article I wrote: “Here’s hoping that this article gets published and some good comes from it.”

I shut off my computer and the lights to try to get some sleep. That night was the first night that I slept like a baby after releasing everything in my mind about the Transplant Games.

The next day at work, I sauntered to the cafeteria to eat my turkey sandwich and read my book. I routinely checked my phone to see if I had any voicemail messages, which I normally did not. My cell phone was my emergency line, but not my lifeline as it was for many people in this fast-paced and technology-driven age. My cell phone read that there was one missed call and a voicemail. I checked the phone number that looked completely unfamiliar to me. I aimlessly began to eat my sandwich while listening to the voicemail and stopped in mid-chew when I listened to the message:

“Hi, Miss Wu, this is **Henry Porter from The Journal News. We received your community submission piece, and would like to run it. We were wondering if you had any photos from The Transplant Games to accompany the article. Please call me back at….”

I swallowed my turkey sandwich and then replayed the message again, making sure that I heard the message right. Yes, I did hear right!! A wide, lopsided grin spread across my face! I couldn’t believe it! I was in an absolute ecstatic daze that The Journal News were actually going to run my piece!! If people actually read this article then they would understand The Transplant Games and the purpose of the games showing how truly miraculous and amazing organ donation and transplantation was and, most hopefully, readers would be affected so deeply to register as an organ donor!

Floating on an invisible cloud and bubbling with overwhelming joy, I immediately called my Dad and Stepmom and shrieked into their ears: “Guess what?! My article about the Transplant Games is going to be published in the local newspaper!!”

My Stepmom said in her usual calm and unfazed demeanor: “Congratulations!” Meanwhile, my Dad let out a warm chuckle and said: “That’s great, Mary!”

On the day the local newspaper came out with my published article, I was shocked to see the enlarged photo of me decked out in my bright and sequined “Live with Passion” shirt, the spiked and foamed Statue of Liberty crown imprinted with “Team Liberty” on it crowned on my head, and blinking plastic sunglasses perched over my glasses and squeezing my temples along with the piece I wrote that The Journal News entitled: “Transplant Games Gives the Gift of Life.” Seeing the article and rereading the words that I had written to try to capture the impact that the games had on me made me smile contentedly. I delicately cut the piece and tucked it in a three-hole and clear sheet and then snapped it shut in a binder. I never expected anything more or less from this published article. I only hoped that people would read and register as an organ donor, but this one article actually began a chain of the most unexpected and unbelievable events that transformed my life and me even more.

It all began at work. My supervisor, **Rebecca, at the time sent me a casual email that popped up on my computer screen that read: “I saw your article in The Journal News.”

I froze. I did not know how to respond. I never thought that anyone from work would read my article, but of course they would! After all, it was a local newspaper! I shook my head. What did I do now? I had fought for so long to keep my work separate from my personal life, and it was happening right then and there that my personal story of my two kidney transplants was seeping into my professional life. Ever since I started working, I ensued in an internal struggle to keep my emotional self in check without becoming too involved and personal with the patients when my past demons of health episodes came to haunt me every now and again. To do that, I isolated myself. That meant going to the cafeteria by myself to eat my lunch, plastering a smile on my face and emitting a cheerful attitude while still saying little to nothing amongst my co-workers, talking only when talked to, and coaching myself in my mind that “a job was a job.” When I returned to work after the Transplant Games, my co-workers and supervisors looked at me with curiosity and intrigue to this mixed serene and bursting happiness that radiated from me. Unintentionally, I was practically floating rather than walking with this goofy grin slapped on my face at work ever since the Transplant Games without a supposed care in the world.

Faced with this email from my supervisor who was clearly prompting me in a way to reply back, the tension and tightness to hide the truth about myself returned. I closed my eyes and took a deep breath. This little voice began to ring in my head: “Remember what you promised at the Transplant Games and afterwards that there is no more hiding now…”

I opened my eyes and replied to my supervisor that I was glad that she read it and that the Transplant Games were really amazing. I was stunned when she responded back that she was really surprised that I could write like this and impressed with the overall article and with me. I stared at the email for a few silent moments. It was the first time that someone outside of the organ donation and transplant community and especially someone at work (a supervisor, nonetheless) showed acceptance rather than avoidance and who did not have a trace of fear that I was some fragile piece of glass ready to break. Some kind of electrifying feeling coursed through me. A weight had been lifted off of me. A wall had been smashed down. The core or center of me was being lured and brought out. My co-worker next to me interrupted my thoughts when she asked me: “Are you okay? You look as thought you saw a ghost or something like that.”

I turned to her, seeing a quizzical expression stamped on her face. The biggest smile ever widened on my face. I bobbed my head and said happily: “Yeah, I’m more than okay.”

To this day, I am forever grateful to Rebecca for acknowledging and showing such openness to my personal health story without making such a big deal about it. Her reaction made me see that I could and should feel comfortable enough to share the real me that had been so greatly impacted by my health, but had suppressed out of fear. Feeling more liberated than ever before in my life, I began to go in the complete opposite direction of reading, researching, writing, and speaking out on the need to educate the public on organ donation and transplantation and especially the dire requirement for people to register as organ donors. I threw myself into and dedicated as much of me as possible to various organ donation and transplant organizations to volunteer at organ donation and transplant registry events, write more articles, and, most of all, share my story to anyone who would or even would not listen. Such organizations that I became greatly involved with on an as needed or as much as possible basis were the Transplant Support Organization (TSO), Transplant Speakers International (TSI), Transplant Recipients International Organization (TRIO), National Kidney Foundation (NKF), New York Organ Donor Network (NYODN- my local organ procurement organization), and even California-based organization Renal Support Network (RSN). Years of hiding were now replaced with a lifetime of sharing. In the process of sharing, writing, and speaking out, I found that I was drawn to three particular populations within the organ donation and transplant community: The pediatric and adolescent transplant community and their families based upon what my family had endured, various ethnicities who had went through organ donation and transplantation because of my parents’ background as immigrants and how I was ABC (American-Born Chinese), and especially the organ donor families based upon the unforgettable fact that both of my organ donors were deceased. There was now a fire in me that was not going to be extinguished. The stories I heard and the people I met at the Transplant Games were just the tip of the iceberg and small puzzle piece to the larger masterpiece. Immersing myself with so many organizations through speaking and writing led to hearing even more stories and meeting even more transplant candidates/recipients and their families and organ donor families. I carried these stories and my own life experiences with me as the greatest and most delicate of treasures to take care of, love, and utilize to fulfill a promise and make the difference that I set out to do.

My dress attire at organ donation and transplant volunteer events

As my involvement with the many organ donation and transplant organizations increased, everyone in my own personal circle with my Dad, Stepmom, sister, and friends began to change. The concern and doubts I had to abide by my Dad and Stepmom’s advice to keep silent about my health experiences had slowly dissipated as my advocacy work and passion increased. Completely unexpectedly, my Dad started to mention to me during dinner times or after dinner, “You know, you may be on to something here. You should write to the politicians about your story and passions with organ donation and transplantation because they are really the ones that have the power to do something. Once you have the politicians and even celebrities on your side, you can do anything.”

Staring at my Dad with round and unblinking eyes, the little, bewildering girl in me had a tickle in my throat that was tempted to say to him: “You were the one to tell me to keep quiet, and now you are telling me to speak out to the highest of people who have the power to pass and implement policies that could make or break the transplant community?” Instead, I bit my tongue with the knowledge that my Dad’s suggestion was his way of saying that I was finally in the right to follow my passions and to speak out, and that maybe I should not have listened to him all these years to keep quiet and secretive. I took on the adult role that I had unexpectedly blossomed into and simply said to my Dad: “That’s a good idea, Dad.” He beamed. It turned out that sharing the real sides to me was also bringing the adult side to me, and, most of all, an understanding between my Dad and I that I was indeed growing up or if not grown up already.

Taking my Father’s advice seriously, I wrote letters to New York state Senators, Members of Congress, The Federal Department of Health, previous President Clinton, current President Obama, and the New York State governors and New York State Department of Health/Commissioner of Department of Motor Vehicles about the vital need to increase organ donation and transplantation awareness in order to escalate the very dismal rate of registered organ donors in New York State. I received responses that either acknowledged or placated my impassioned letters and advocacy work or explained that there were already certain procedures in place that were the best available. I replied to each and every letter I received, and then tucked each letter response into a clear sheet that then was slipped into this binder that was quickly becoming a scrapbook.

A couple months later after the publication of my Transplant Games article in the local newspaper and as my advocacy work and involvement with the various transplant organizations and my letters to politicians were taken into effect, I received a double dosage of surprising, good news.

One piece of good news was that I had won third place of the Renal Support Network’s 8th annual essay contest topic “Lessons Learned from a Book, Movie, or Song that helped me deal with Chronic Kidney Disease.” I had wrote about my close connection with the book entitled “Somewhere Between Life and Death” by: Lurlene McDaniel, which was about an organ donor’s family plight to finally deciding to donate their loved one’s organs. With the binding of the book creased and the cover tattered, it was clear how much I treasured this book that reminded me of my organ donor families. The Renal Support Network generously sent me prize money, a Renal Support Network pen, and a dazzling and proud certificate that still hangs in my bedroom.

The second piece of good news was that the town newspaper a part of The Journal News had contacted me to do an interview and photo session of my organ donation and transplant advocacy work. I was incredibly surprised, excited, and flattered that this was yet another opportunity to spread the awareness and need for the public to register as donors. Nonetheless, I did not realize the importance of this story until I saw a minivan parked outside of my home and out emerged a reporter with pen and notepad gripped in his hands and a photographer with various bagged photo equipment practically attached on to her.

“Oh, wow, I didn’t expect anything like this!” I exclaimed.

The photographer looked slightly a couple years older than me and began to unpack her photography equipment. With a bright smile, she said: “We are just going to take a couple photos outside here. The lighting is not the best because of this downcast weather, but it is really pretty out here with the flowers and everything. Did you want to change your clothes?”

I looked down at my outfit. I was dressed in a simple pink T-shirt, jeans, and my brown hair cascaded down around my round face. Growing up, I had never been a girly girl because I was so concerned about my physical health rather than my physical appearance. I paused for only a moment if I should change into something a bit girlier, but the reality was that I didn’t own anything even remotely girly except for maybe a skirt, but it was too cold for me to wear a skirt. Feeling comfortable and determined to just be me, I said: “Nope. I’ll just stay in this. This is the real me—jeans and T-shirt.”

“Sounds good to me!”

I tried to convey comfort with a large lens pointed in my direction and the photographer saying: “Okay, turn this way….no, that way….okay, perfect, perfect…” However, my cheeks eventually flushed with awkwardness and then discomfort magnified when my neighbors crowded around this outdoor photo shoot, whispering, staring, and clearly wondering what was going on. I breathed a sigh of relief and the knotted nerves untangled when the photographer said: “I have what I need!”

Turning to the reporter, I guided him inside to chat. The reporter smiled warmly at me, making me immediately feel at ease and able to share anything and everything about my personal story and my advocacy work. The first thing he said to me that instantly broke the tension I felt with the photo shoot was: “My wife and I are registered organ donors. We signed the back of our driver’s license.”

Without thinking, I immediately responded: “Actually, I also thought that signing your driver’s license was enough to designate yourself as a registered organ donor, but it isn’t enough. The way to become an official organ donor in New York state is to go to http://www.donatelifeny.org/. Or, there is http://www.donatelife.net/, which has all the states rules and regulations to becoming a registered organ donor. The most important process to become an organ donor is to tell the people you love that you want to donate your organs while you are alive and coherent because the family has to make that ultimate decision in the end.”

“Really? And, here I thought that signing my driver’s license was enough,” He said more to himself rather than to me as he quickly jotted down what I just said.

I continued to share freely and openly about the Transplant Games, the organ donation and transplant community, the major factoids that there were over 113,000 waiting for a life-saving organ and up to 20 people died every single day waiting for life again, the ultimate selflessness of the organ donor families, and I finally ended: “I wish we lived in a world where organ donation and transplantation was not a second guess, but just a way of life and living. In other countries like in Europe, the organ donation system is opt-out rather than opt-in. Opt-out means that everyone is already an organ donor, and only has to choose to opt-out. In the U.S., we have an opt-in system where no one is already an organ donor, and only chooses to become one. The fact is that organ donation and transplantation still remains a difficult topic because no one wants to think about his or her death. We think we are invincible and we are so afraid of death, but death is just a part of life. What if we were more afraid of not living out life to the fullest while we were alive rather than afraid of death? I wish the public and the transplant community could somehow come together. If it were not for both my organ donors and their families’ decision, I would not be around to share all of this with you. I was given a whole new lease on life again because of my organ donors, and finally sharing and telling people my story and the facts of organ donation and transplantation and what has to be done to become an organ donor is the little I can do to try to make a difference. Everything in life happens for a reason.”

The reporter stared at me with his round blue-gray eyes. Quiet filled the room, and I wondered during that time how it could be that all of what I said came out so effortlessly? He looked at me pensively, and finally said with a half smile, “Well, you are definitely passionate about all this.”

I sheepishly said, “Yeah, I know. I think anyone would be passionate, too, if they were faced with life and death circumstances.”

After about fifteen minutes, our interview was over and done with. When we shook hands and parted, I shut the door behind me and let out a breath of disbelief at how easy the words seemed to flow from my mouth. I asked more to myself rather than my Dad who heard me: “How could the words come out so easily from me?”

“Because you are speaking from your heart. Because you are passionate,” My Dad said simply.

In only a couple of weeks, I was racing to the local pharmacy to pick up the newspaper on the date the reporter said the article was going to be published. With my hands shaking, I aimlessly and nervously rifled through the various newspapers. There it was. The article was on the front page of the town newspaper. Underneath the picture of me in my pink shirt and crooked smile in bold and large-sized font was the title: “Woman Searches for Donors.” Captioned right under the photo in miniscule font read: “Mary Wu, a kidney transplant recipient, is a strong advocate for organ donation.”

I blinked my eyes a couple of times at the caption under the photo. Strong advocate? Me? Was that who I was? Was that who I had become in the midst of swimming openly and freely in the world of the organ donation and transplant community, and trying desperately to bring the public and organ donation and transplant community together and for people to register as organ donors?

I slowly sank to the itchy and thin blue carpet right in the pharmacy, reading the article intently. When I came to the end of this breathtaking piece that this reporter had written and managed to somehow captured my gusto and passion, it finally dawned on me that I had found my truest life’s passion and purpose: Advocating on behalf of transplant recipients/candidates and their loved ones through constant information and inspiration about organ donation and transplantation, and especially ensuring that everyone registered as an organ donor.

A little giggle escaped from my mouth, and then that giggle turned into a hearty laugh aloud to myself. Wondering what my purpose in life was and what were the reasons behind all this unforeseen health experiences with my chronic kidney failure had always been tucked away inside me along with the hidden secrets about my health from everyone outside of my family and closest friends, and there it was right in my face in black and white and with a photo of me in pink. Wasn’t life funny that when I had stopped forcefully wondering and searching and just started doing, sharing, and being the real me that my purpose just leaped out in front of my very face?

Even after buying a couple copies of the newspaper, I shook my head and just couldn’t stop smiling and then laughing at this epiphany that had just struck me. It took the Transplant Games, The Transplant Games community submission article I wrote and was published, and now this interview to make me see the true purpose all along. Naturally, the first and only person that I did not even think twice about to share this epiphany about my life’s purpose was with my Dad when we had read the article about me as an advocate over and over again.

“It is a really well-written article, and it is even better that you have found your purpose through it,” My Dad commented.

I folded the newspaper in half and placed it on the table. My Dad and I sat in comfortable quiet, and then I asked him: “Dad, do you think there will come a point that all of this advocacy work will end?”

My Dad said to me: “I think you’ve only just begun.”

Finding my purpose was only the very beginning.

Now, laid and paved ahead of me was actually fulfilling my purpose.

**denotes fake name to protect privacy of individual