His Name Was Ed

The first time I went to Omaha, Nebraska, it was October of 1994. It has since become like a second home, it bears that sort of feeling.

But that first time, I was there because I was in liver failure. I was twelve years-old and my parents had exhausted options in our home state of Florida.

This was an era before Internet; fax machines were the hot technology. The information and support available to patients and families was limited. Being as we were so far from home, we stayed in a sort of group home offered as a patient resource. It was a converted Victorian-era home called “The Potter House”, where families from out-of-state could stay more affordably than a hotel for extended visits. We were in room six, on the second floor. Our room had a lovely sitting area, a sunroom of sorts, that was ideal for reading. It overlooked the quiet neighborhood about two miles west of downtown, which is now known as the Blackstone area.

Every act of kindness creates a ripple with no end

I was being evaluated as a candidate for a liver transplant. This process can be lengthy, requiring all sorts of tests before learning whether one will “qualify”, for lack of a better term, for the national waiting list. And, once a person is listed, there is no guarantee that they will receive the organ they need. Life on the waiting list is precarious, but that’s another story for a different day.

The idea of a liver transplant was terrifying, as in the early nineties, it was still kind of a new thing. There was a support group and some books available, but I was unclear about what my future would entail, should I receive a new liver. Would I be able to attend school or play sports? I was at that time very sick and home/wheelchair bound, so all my hope was to be a “normal” kid again.

Then I met a man named Ed. To this day I don’t know his full name or really any details about him. I just remember coming downstairs to breakfast, gathering in the communal kitchen; I watched Ed lace up his shoes and sprint out the door, going for a run.

Ed had very recently undergone a liver transplant. And he was out for a run. I was fascinated.

“What advice can you give me?” I implored, incredulous, to this man that was a picture of health.

He smiled and considered my question. He replied: “it’s gonna be hard, it’s gonna hurt, but you gotta push through it.”

I was floored. In that moment he became a sort of enigma, embodiment of a muse.

Nearly 25 years have passed and I have thought of Ed’s advice every day. It was simple advice, but he represented the very torch of hope to me.

In many instances, his advice has gotten me through the day.

I don’t know what became of Ed, but I am still here. His advice helped me navigate and recover from two liver transplants, one on April 16, 1995 and another on August 5, 2011. His advice taught me how to be a good patient, because that in itself is a difficult prospect at times.

Ed will never know what he did for me that day. It’s amazing that we can touch another person’s life without ever knowing it.


What April 16th Means To Me

green ribbonDid you know that April is National Donate Life month? Each April, we celebrate the generosity of those who have saved lives by becoming organ, eye, tissue, marrow, and blood donors.

What does this mean to you?

Organ donation is something that people tend to feel uncomfortable about, as it involves end-of-life decisions. I do not understand this hesitancy to explore things that involve death; we celebrate birthdays, the coming-into life. We must also consider the going-out-of (which we all hope shall be merciful).

Firstly, I find it amazing that we can perform the act of transplantation – organs, tissues, everything. Initial attempts at transplants were devastating. The transplant teams were fighting hard for their desperately sick patients but were failing time after time. It broke their hearts – they had grown to know their patients and their families. The brave pioneers of transplant surgery failed so miserably that they shut down the program for years. One of their biggest hurdles was in preventing rejection of the transplanted organs, chiefly due to a lack of reliable anti-rejection methods and medications. The concept was revived as technology evolved, and modern transplantation is nothing short of amazing.

Furthermore, transplantation demonstrates the transparency of color, gender and class, which I whole-heartedly support in my overall view of society. Additionally, I think it’s beautiful that someone can simultaneously leave this life and give life to another.

That said, on to the date of April 16th. On that day in 1995, I was twelve-years old and withering away in a hospital bed. People chose not to give up on me – family, doctors and nurses, and complete strangers.

April 16th, 1995, is the date of my first liver transplant. I went to sleep, the doctors went to work, my parents tried to nap in an uncomfortable waiting area throughout a very long night.

As this was happening in our lives, another family was dealing with sudden tragedy; the death of a twenty-one-year-old: son, perhaps a brother, a friend or a nephew. I’ll never know.

While volunteering for the cause of organ donation, I have had the pleasure to meet a number of very brave donor families. Many have shared that donation was and is a small comfort to their grieving hearts: knowing that another human being was able to live and carry a part of their loved one. I speak for the community of transplant patients in stating that we all are very grateful and regard our donor as a hero.

After my liver transplant, I enjoyed sixteen healthy, happy years. Unfortunately, my disease is chronic, and I would go on to require a second transplant in 2011. Both donor families chose to remain anonymous, and that’s OK. Regardless, I think of my donors every day. And each year, on April 16th, I pause and reflect upon the day that changed our lives.

Organ donation saves lives. The spectrum of donation is very amazing and does incredible things for people: corneas can restore sight for someone that is blind, bone can mean the difference for someone’s ability to walk, a heart can beat for someone else. I urge you to consider this important decision. If you haven’t already, you can register here.