Chapter Thirty: Epiphanies

It was September 2010 when the epiphanies, or “light bulb” moments as I call them, began.

I could hear the loud chatter and banter as I walked to the employee lounge, which was a relatively tiny hole in the wall with overstuffed and cushioned chairs squeezed around a makeshift round table with scratches etched into it. My direct supervisor at the time, **Rebecca, was perched on the edge of a chair with a knife poised in her hand over a golden yellow cake that was topped with inch-thick and swirled creamy vanilla frosting and a bright canary yellow script that read: “Happy Birthday, Rebecca!”

As soon as Rebecca saw me, she boomed with loud delight: “Mary!! Sit, sit!! It is my birthday, and I so say that you have to have cake…especially after reading this…”

In front of the administrative manager **Eva, two of my other co-workers, and I, Rebecca proudly held up the “Woman Searches for Organ Donors” newspaper article that “The Journal News” had published in the local town community section. Pairs of eyes zoned on to the article and then on to me. My mouth went dry. I was speechless. I could not believe that Rebecca would show off the article like that, and a zing of anger and a whole lot of shock bubbled in me.  Surely, I knew that my other colleagues and not only Rebecca would eventually learn about my story and purpose because of the article being published in our local area, but I never expected any of my colleagues to be in face-to-face contact with me when the article was out and about. I was not completely angry with Rebecca, but I hated that I was put on the spot like that. I was not given the luxury of time to respond. I was only beginning to warm up to **Rebecca’s ease and openness over my life’s story and advocacy work coming out, but I was still shut down and uncomfortable around my direct co-workers and especially around Eva knowing. It was truly all perception. I could have seen it as to how extremely fortunate I was to have Rebecca as my boss to be this enthusiastic and that her sharing the article would hopefully increase more people’s awareness and movement to register as an organ donor, but I could not help it that I was still adjusting from hiding to revealing to the public so they could do what I saw as the only right thing in life when death came: Registering as an Organ Donor.

Unsure of what to say and with the start of sweaty palms, my giggle that I aimed to sound careless came out awkward and relatively choked. My life and purpose splashed loudly on the front page of the newspaper and Rebecca starting to excitedly pass the article around the table made my cheeks color to a beefsteak tomato red shade. Now I really had to say something.

“A big slice of cake just for you! My birthday and you becoming famous for such an amazing cause…complete cause for celebration!” Rebecca cheered.

As the article was shuffled from one set of hands and pair of eyes to another, I found myself intently focusing on the huge slice of cake that Rebecca had sliced for me. I stabbed my fork into the cake and let its saccharine melt into my mouth.

Rebecca’s exuberance was absolutely infectious and with the comfort of sweetness swishing in my mouth, the tension and uncertainty began to diminish. I finally admitted with a lopsided smile, “Yeah, it was a little weird having a reporter and a photographer at my place. I probably should have dressed up better!”

“I think you looked friendly and cute,” Rebecca said.

I chewed the cake slowly with the purposeful intent that the more I chewed, then the less I had to talk or say anything more about the article to everyone. Eva was the last person to read the article. When she was done reading it, she piped up, “So, now I know that signing your driver’s license just isn’t enough!”

I agreed with passion and gusto, “Yeah, just about everyone thinks that a signature on the back of the driver’s license is more than enough to becoming an official organ donor!”

“I think this is totally cool with you getting the word out!” Rebecca exclaimed.

My other co-workers silently ate their cake, making it clear that they were just as uncertain as me of what to say or do. Eva soon left the employee lounge to tend to something. I, for one, was completely stunned that I was here in the company of my colleagues talking as freely and openly about my advocacy work and health as though we were talking about the weather. If the news about my health had ever come out and about here, I had always imagined that it would be a big, earth-shattering disaster. I could only picture the thoughts that ran through my supervisors’ heads, such as I was a formality to the company and colleagues due to medical coverage and health insurance or that I was a fragile piece of glass as the girl with a complicated medical history that could not completely do her job and deserved special treatment. But, no, none of these movie images in my mind were a reality. Rather, the reality was that I had spent my life caring too much about me rather than caring or even thinking twice about how I could use my story and life experiences to make a difference and help others. The sheer and genuine openness from my managers made me see that I had spent all these years judging what people may have thought of me in the worst of ways, causing me to hide my story. Going forward, I had my first of many epiphanies right then and there that I could no longer spend my life caring what others thought about me and that I should give people the chance and benefit of the doubt to be open to organ donation, transplantation, and eventual registration through sharing my story.

I beamed, let out a loud laugh, and finally said, “Thanks! That means a lot! The reporter did an awesome job, and I just hope that the article can do some good!”

The discomfort that had blanketed the employee lounge dissipated and, for the first time, I was not the shy wallflower co-worker that I had been known as for all these years. I chipped into the conversation about my article and about Rebecca’s birthday plans. I ate cake and laughed. I was one of them and belonged, but how unbelievable that it had to take me sharing my unheard of and unique past to attain that feeling of belonging. I eventually polished off my cake, feeling the best than I had ever felt at work before. I was on a complete high, but that nose-dived when I nearly bumped into Eva on my way out of the lounge and she said to me: “Can I talk to you for a moment, Mary?”

I gulped. This was it. It was the nursing home situation all over again. She was going to terminate my employment or give me some kind of warning that I could not carry on with all this advocacy work that was becoming well known because of the newspaper article. .

I clenched my hands together in preparation for what was about to come. To my complete shock, she said thoughtfully, “You know, there is an employee newsletter that comes out on a quarterly basis. Maybe you should share your story with the editor and they would help you out with your organ donation and transplantation registration cause?”

Did I just hear her right that she was actually suggesting that I now take my story and advocacy work to an even bigger level of EVERYONE knowing my story and organ donation and transplant advocacy work? Right now, I only worked at the regional or suburban location, so if I made the step to contact the editor of the employee newsletter and my story was chosen to run then ALL the satellite locations and the main cancer center would know my story.

I was dumbfounded as this opportunity that my administrative manager was giving me. I finally mustered a tentative smile and said, “That’s a good idea.”

By the end of the day, I found the information about the employee newsletter and editor. Unlike the past when I mulled back and forth if I should tell my story, I did not hesitate to write a heartfelt note that my administrative manager suggest that I reach out to the employee newsletter to increase the awareness and registration for organ donation and transplantation. I ended the note with a link to the published article “Woman Searches for Donors,” clicked the “send” button, and closed my inbox.

My mind was distracted from thinking about what was going to happen next that I reached out to the employee newsletter editor when I received a string of other unexpected emails in my personal inbox about the article. Most emails were from the local Transplant Support Organization and New York Organ Donor Network that I was doing a great job to keep sharing my story to help the over 100,000 individuals waiting for a life-saving organ. One email was from my math teacher in high school that had stumbled across the article and was very excited about seeing me again. Then, there was this email that I did not even know how to respond to when I first read it:

Dear Mary,

I was so excited to read the article in the Journal News about you, your 2 kidney transplants, and your quest to inform others about transplantation!! I have what I think is a perfect opportunity for you to educate others!

I am a member of the New York Regional Chapter of the Society of Pediatric Nurses. Our chapter is planning a conference on October 26, 2010 entitled, “Pediatric Transplantation, The Gift of Hope.” It will be held at the Maria Fareri Children’s Hospital at Westchester Medical Center. I have attached the brochure that we are sending to other nurses throughout the metro NY area.

The conference committee is hoping you might be available to join us on October 26, and speak about your experiences. Please let me know if you are available, or if you know of someone else who might like to speak at our conference.

Wishing you good health,

**Lydia Bowe, RN

 

I stared at the email for a few moments, trying to digest the information. My mind could not be playing tricks on me that this email was an invitation to publicly speak and share my story with others. Me? Speak? My stomach tightened and twisted. No way could I speak in front of people. Just the mere thought of speaking in front of strangers made me dizzy and ready to pass out. Writing had always been my strongest point and my best friend. Writing was my therapy and safe escape from reality, while also somehow giving me the privilege to also share and face the realities of the world and me in a non-threatening manner. I closed the email and exited out of my inbox with a decision that I was not going to respond back. But, then that voice—that voice that had developed once I started to tell my story and about organ donation, transplantation, and registration came at me with a vengeance saying that there was no way that I could pass up this opportunity to speak out and reach out to even more people to register as an organ donor. The voice said: “You will do a great job! You keep telling your story then people will know and register! You will be helping so many people!”

When I told my Dad about this opportunity, that wide grin of his took over his round face and he said: “You have to do it! Go for it!”

With that incessant voice in my head that I had started to name “Advocate Voice” and my Dad’s effervescent enthusiasm, I wrote back to Lydia saying that I would be happy and honored to speak before an audience of nurses. I inquired how long I had to speak, if there was a certain theme that I had to focus on when I spoke, and if I had to do an actual presentation with Microsoft Powerpoint.

Lydia quickly replied back that the theme was life after a transplant and that it was recommended I do a Powerpoinit presentation. She ended with saying that my presentation would be at least 1 hour. I gulped. One hour? In front of an audience? Oh. My. God. I could not speak for an hour.

“One hour?” My Dad’s echoed my thoughts, “That is a long time, but I’m sure you can speak for about 45 minutes and then leave a 15 minute question and answer period.”

White in the face and feeling sick in my stomach, I confessed to my Dad: “There is no way I can speak for even 45 minutes.”

After only a second of silence, my Dad said, “You can do it. You speak for more than an hour with your friends on the phone, so just imagine you are talking to them.”

“It’s different! You can’t compare the two!” I protested.

“Yes, it is different. Different in making a difference,” My Dad said with that simple expression on his face that there was no way that I could decline this offer now that I had accepted it.

For the next few weeks, I diligently worked on my hour-long presentation. I thought long and hard about what I wanted to convey to the nurses about life after receiving two transplants at a young age. I stared at the blank Powerpoint screen, played with all the fonts, and looked through my transformative photos of what I looked like pre and post transplant. I wanted my presentation to be positive, bright, and uplifting. I wanted people to cry, laugh, and feel something so strong that they would take action to register as an organ donor. I wanted desperately to convey hope, happiness, laughter, joy, and all the fortunes that came from the misfortunes. My organ donors saved my life, and people failed to realize their own power of saving other people’s lives with a simple registration. Gathering my photos and playing around with bright colors, the layout, and font of each slide, I finally came up with my theme: “Post-Organ Transplant: A Celebration of Life!”

I practiced and timed my presentation endlessly leading up to the big day of October 26, 2010. I tried to memorize my speech rather than talk from a piece of paper or index cards, because I wanted the presentation to be personal where I was looking at each and every single member of the audience. I flipped through each slide over and over again to make sure that I included all the pictures, links, and words that I needed to. I even contemplated practicing in front of my family and closest friends, but just the idea of any of them hearing my presentation made me shudder with fear. I actually preferred that complete strangers hear my story to my friends and family. It was probably a blessing in disguise that my Dad was not even in town on the day of my presentation, but he did not forget to say to me the day before my presentation: “You will do great!” And, as my loyal and long-time friend **Claudia had jibed when I had said that I made a mistake to agree to this presentation, “Just imagine them all buck naked!”

On the night before the presentation, I packed a bag filled with all of my organ donation and transplant pamphlets, pins, and pens, and planned my outfit with convinced confidence that I had overcome any public speaking nerves and was ready. However, when I woke up the next morning, I felt so sick to my stomach that I could not even eat breakfast. I could not believe that I was this scared (petrified even) of public speaking.

When I arrived at the hospital, I tried to give the façade of poise and relaxation. I walked to the auditorium and found a long table outside with pamphlets. Standing behind the table was a woman with bright blue eyes and soft blonde hair that encircled her warm face. She said to me, “Are you Mary Wu?”

My throat and mouth were parched because of how nervous I was, but I managed to nod.

“Oh!! Of course it is you!! Look at you!!” She came around the table, pulled me towards her, and enveloped me in a gripping hug that made me stop breathing.

“Let me look at you! Let me look at you!” Her bright blue eyes sparkled when she stared into my confused brown eyes and then she said: “You don’t remember me? **Margaret Feeny? Does it ring a bell?”

“I’m sorry. I don’t remember,” I admitted.

She laughed gaily and then said, “Oh, well, you were just so young! I was your transplant coordinator for your second kidney transplant! I still remember calling your home and your Dad picking up and answering the phone with the news that it was time for you to come in for your second transplant!”

“Really?” I exclaimed. I was disbelieved that this was the lady who was at the core of me receiving this second kidney transplant.

“You look so amazing! No one would ever guess that you had transplants and all that you’ve been through with that glowing smile of yours!” Margaret pinched my cheeks as though I was a little girl.

My fears over speaking began to fade away when I chatted more with her as well as the other nurses and coordinators who had invited me to the presentation. The auditorium was actually a medium-classroom size with one long table lined after another and chairs behind each long table in college lecture style. The audience members were nurses either already in the pediatric medical field or preparing for it. The nurses had to either attend the presentation for school credit or because they simply wanted to. I sat in the front to finally go through the program outline. The familiar sickening pangs in my stomach and dryness in my throat came back when I saw that I was going to be the last speaker. I would have to wait more than half the day and even lunchtime until I could give my speech. I just wanted to go first and get it over and done with.

No matter how much I tried to focus on the other amazing and informative speakers, which include a top-notch liver transplant physician, organ donor Mom who lost her beloved son because there was not a bone marrow donor in time to save him, and a leading scientist in pediatric transplantation, I kept shuffling endlessly through my presentation notes to make sure that I was not forgetting anything. I also tried to concentrate on making connections with the other speakers and with the nursing students or full-fledged nurses that were in the audience to distract me from my nerves. It was finally after lunch that my time had come to speak.

Left to Right: A few new friends I made at the Pediatric Transplant Conference event

that I attended and spoke at in October 2010.

The nurses and coordinators had a chair for me to actually sit on since I was too short in height to see over the podium. I was afraid that I was going to drop the microphone that was handed to me from my hands so wet and clammy. My primary and brightly colored Powerpoint Presentation flashed on to the screen. My voice was quivering with pairs of eyes staring at me when I first began to speak about the beginnings of my life that led to a diagnosis of chronic kidney failure by the time I was 3-years-old and underwent a kidney transplant at age 5. My voice strengthened with confidence when I approached my pre-teen years and finally received my second kidney transplant. From then on, it was as though I was talking to friends, and I knew that I was connecting with each and every one of them when I saw the sadness on their faces and tears in their eyes go to laughter and then to solemn sentimentality about my call to action: “Everything in life happens for a reason. I would not be here to talk before you if it were not for both my organ donors who made one simple decision that changed my life and will allow me to change other people’s lives. I hope you always know as healthcare professionals and nurses that you have such an immense power in your hands to heal and help as my family and I had experienced. I hope all of you save lives as a registered organ donor as I know you save and help lives every single day in your line of work. Thank you.”

The beaming faces, claps, and cheers echoed throughout the room. Warmth radiated on my face and throughout my body that I had not only managed to finish the presentation, but I actually LIKED speaking and sharing my story aloud. It was another epiphany moment that public speaking provided a face to the story, and that actually surpassed written words in a published article or a snapshot photo. The more I spoke, wrote, and shared with others then the more others would do what had to be done: Register as an Organ Donor to Save Lives. I vowed then and there that I would seek out and take any chance that I could to speak out to others with my story. My greatest fear was no longer not telling my story. My greatest fear was now not telling enough people my story in order to help others.

Less than five minutes after I spoke, the entire event was over and done with, but I felt deep within me that this public speaking and fulfilling my purpose was now in motion and that I could only forge forwards and upwards from here on in. A couple of the nurses had stayed after to talk with me and to say how great of a job I did speaking and all that I was doing now with going forward in my life with fulfilling my purpose. I smiled, gave out my cards that I made, and answered any questions, but all I really wanted was to go home after what felt like running a marathon with all this preparation and planning for this one presentation. Just when I was about to leave, an Asian woman with glossy jet black hair and wide and penetrating eyes came up to me and said: “Hi, Mary. I’m **Elizabeth. Your presentation was amazing!”

“Thank you!” I exclaimed, in a complete euphoric state.

“I just wanted to tell you something. That nurse in the picture with you when you were two or three-years-old and wearing plaid…well, I know her. In fact, I am pretty sure that I work with her. Her name is **Josephine.”

I stopped packing everything. I felt goose bumps appear all over on my body and tingling or electric sensations went through my body. I finally said, “You know her? So, do you now work at the hospital where I had my first kidney transplant?”

“No, Josephine now works over here at Westchester Medical Center.”

My heart stopped mid-beat. Was I really understanding this small and petite nurse correctly that she knew one of the nurses that had taken care of me when I was first diagnosed with chronic kidney failure and had my first kidney transplant? She had to be joking. It was over twenty years since I had my first kidney transplant. There was no way that there could be such a coincidence like this that I did this presentation that would link me to Elizabeth who knew this lady Josephine who had such a vital part of my past and painful childhood—AND that this nurse named Josephine now worked at Westchester Medical Center where I received my second kidney transplant. I looked quizzically and in disbelief at Elizabeth to see if she was joking, but she was as serious as ever.

I did not know what to say, so Elizabeth said: “I’m going to let Josephine know about this presentation and make sure she gets in touch with you.”

“That would be really amazing,” I said softly, but I honestly did not believe for a moment that Elizabeth actually knew this nurse. The photo that I had found and used for my Powerpoint presentation was from over twenty years ago. It was extremely unbelievable and unrealistic to me that Elizabeth could recognize this supposed nurse named Josephine from such a worn out and aged photo.

This was the photo I used for my Powerpoint Presentation at the Pediatric Transplant Conference,

 and it was a nurse **Elizabeth that came up to me after the presentation to say that she knew and

worked with the nurse named **Josephine on the left of me.

My first presentation was finished and it was back to the everyday routine, but I had just begun. In the days that followed after the presentation, I received appreciative and grateful emails for speaking out about my story with such a positive, happy, and encouraging message of hope and for the future. In the back of my mind, I waited and hoped to hear from this nurse Elizabeth that she was not mistaken and had somehow discovered that Josephine was the woman that she believed to be the nurse in that photo with me over twenty years ago. But, I never heard from her.

Armed with this newly discovered public speaking as great ammunition to fulfill my purpose, I committed more time and energy with various organ donation and transplant organizations. I discovered an organization based in New Jersey called Transplant Speakers International (TSI), which had the same mission as me that public speaking provided the story and not just a number or statistic, resulting in the ONLY way to truly affect the public to register as an organ donor. I eagerly contacted them to find out what speaking events I could attend or speak at. I was invited to become one of the co-leaders for the TRIO Youth Circle, which was a social and supportive network of “young” transplant recipients/candidates. I was still involved with the New York Organ Donor Network, Transplant Support Organization, National Kidney Foundation, and Renal Support Network whenever I could. I continued my letters to politicians, advocating for ways to increase organ donation and transplant awareness and registration and ways to repair the broken healthcare system that was laced with skyrocketing medical bills and endless confusion with the various insurances.

In early November 2011, I received a call at work from “The Journal News” that they wanted to include me in a Thanksgiving article focused on certain Westchester County residents who were “thankful” due to a unique story or experience.

The reporter asked: “Will you consider us interviewing you and taking a picture of you sometime this week? I know it is short notice, but the article has to be done and ran by next week or the week after.”

I happily obliged to meet with a different reporter from the first reporter who wrote “Woman Searches for Donors.” The interview was so much more personal and comfortable than the first interview where the reporter dug out his digital camera and took a quick snapshot photo of me grinning after only a 15-minute chat with him. As the reporter had promised, the article was out only a couple weeks later. Around that same time, I received an email at work from the employee newsletter editor and freelance writer that they were excited to do an employee profile story on my organ donation and transplant personal experiences and advocacy work, but that the story would not be done until sometime in Spring of 2011 because the newsletter was backed up with feature articles and stories. For me, this only meant that 2011 would become my peak year of fulfilling my purpose in life. As 2010 was drawing to a close and January 2011 was on the horizon, I felt more lucky and blessed than I had ever felt and I was convinced that my life could only get better from here on in because of the light bulb moments or epiphanies that had resulted from the recent articles and public speaking experiences or exposure that I had. I only had the future and much more to look forward to with the employee interview for the employee newsletter. I also had tried to find out the contact information of this nurse Elizabeth from the nurses and coordinators who had so kindly invited me to speak at the presentation, but there was no luck finding her. Dejected, but not hopeless, I reasoned that if I was meant to find healthcare professionals or this supposed nurse Josephine, then it would happen. The most inspirational people I met and the greatest moments that I had experienced in my life had all happened when I had least expected it and when I had not forced them. Who we met and what happened happened because they were meant to happen.  Nothing in life was an accident or coincidence. 

Feeling as high as a kite and excited about Christmas Day 2010 in four days, nothing could or would bother me. But, my whole life was thrown into a tailspin when I received a phone call from my Stepmom at work. I knew that something was not right from the way my co-worker looked at me when he handed the phone to me and because of the most obvious factoid of all was that my Stepmom had NEVER called me at work before.

”Is everything okay?” I asked worriedly.

“Mary,” she said in her soft-spoken voice that was vibrating with fear and uncertainty, “I need you to come pick me up from work. Your Father is in the hospital.”

**denotes fake name to protect privacy of individual