Facing Mortality - What Will My Dash Represent?

Facing your own mortality is not something that anyone is ever really prepared for; however, it is a significant factor for anyone on a solid organ transplant list. When I went to see my friend Josie to say goodbye (she was dying from liver failure after being on the list for seven years), she told me several times how much our talks had helped her. I don't think that I necessarily said anything profound; it was the simple fact that I understood what she was experiencing and it helped to talk about it.

The Weight Of Chronic Illness - Being on the Transplant List

When you have a chronic illness, you get sick and tired of being sick and tired. I remember vividly enduring years of insomnia. I started to journal late at night to pass the time when sleep eluded me, which was pretty much every single night. I remember always being cold. To warm up, I would fill the bathtub with scalding hot water in the middle of the night. My husband was afraid that I would fall asleep and drown, so I had him get me a floatation device because I wasn't about to give up the baths. So, there I am in the bath tub in the middle of the night, wearing a life jacket of sorts. When I could sleep, I would have the strangest dreams, which I find quite interesting now when I read back through my journal. My subconscious mind went to some strange places.

I remember worrying and praying constantly about what would happen to my husband and children if I didn't survive. My husband and myself had taken in two nephews and a niece (we already had two children of our own) to keep them from going into foster care. What would happen to them? Would my husband be able to keep them on his own? How would my own children cope? It seemed unfair for me to die leaving him with five children to raise.

Searching For Meaning

I wondered if my life would have any meaning. I wrote the following in my journal, "I have been angry with God, but I feel I'm overcoming it. Perhaps it's not anger but great sorrow. When I attend church, I find myself fighting tears. I have a difficult time facing my own mortality. I read something today that I found very profound. In all obituaries or eulogies, a person is listed as Born xx/xx/xxxx - Died xx/xx/xxxx. The dash is the most significant part of that equation. What will my dash represent when I am gone? Will I be someone who faced life head on, with love, compassion, courage, strength, kindness and love? Will I have taught my children how to survive and have strong souls? Will I have made a positive difference in the lives of my husband, family, friends and strangers? For me to heal means more than addressing my sickness, it means that I must heal my body and my soul. I must find my own spirituality." One of the things that I told Josie during our final visit, was that the world was a better place because she was in it. She made a difference to everyone in her orbit and her influences would live on. She knowingly shook her head, and told me that she had the exact same thoughts and fears. She was concerned for her husband, children and grandchildren whom she loved so very much. She was at peace, but she very much wanted for them to be able to carry on without her.

Ancient Greek Statue depicting head in clouds

Throughout my illness (and to this day) I explored many aspects of spirituality, religion, meditation, metaphysical healing, parapsychology, any form of self help that I could get my hands on. I read medical journals and studies so much so that it sometimes perplexed and/or annoyed my doctors. I talked to God, my spirit guides, my guardian angels. One day while I was out running errands, it occurred to me that that day was the Feast of the Guardian Angels (October 2nd). It was a Saturday and the local catholic church is normally open for confessions and then a mass later in the afternoon. I decided to pop in and light a candle for my guardian angels, I mean, it couldn't hurt right? I pull into the church parking lot, and there are other people entering the church. I park my car and go inside to light my candle and say a prayer. Once finished, I go to leave, and everyone is gone and the church doors are locked. I find myself perplexed about what I should do. I can unlock the door and leave, but then the church will be left unlocked. I find the church bulletin and decide to contact the priest to let them know because I don't want to leave the church unlocked. After a few calls, I reach the priest but he doesn't believe me. I explain who I am, my family has known him for years, he used to be the priest at my grandmothers parish before moving to my local church. After arguing with him for about ten minutes (which was ten minutes too long), he agrees to check. Considering the fuss he made and how rude he was, I would have thought that he was across town. That was not the case. As I stand outside the front door, I see the priest strolling across the backyard of the house next door. He gives some weak excuse about his admin having the same kind of car that I do. I apologize for the trouble and leave, wondering if my angels are trying to tell me something by allowing me to be locked in a church. I can look back now and laugh, but at the time I was not amused at all.

Lessons Learned

I can say without any hesitation that every book I read and every experience that I had helped me. There was a lesson in every single one. It opened my mind and it helped me maintain a positive attitude. I learned that attitude is everything. It affects not only you, but everyone around you. If I was down, my family would pick up on it and the negativity would impact them too. If I was afraid, they were afraid. I worked very hard to keep a positive outlook and when I couldn't, I learned to fake it. Never let them see you sweat applies not just to sports, but to life in general. I did not want my family, most importantly my children, to be fearful. For a time following my diagnosis, every time my father would see me he would get the most sorrowful look on his face. It absolutely stabbed me in the heart every single time. I finally asked my mom to talk to him because I just couldn't take it. I knew he was saddened by what was happening to me because he loved me, but I needed him to try to be more positive. Once he was made aware of it, the sad looks disappeared and in his eyes I saw only love and hope for the future. It made a huge difference.

The Slow Descent

The descent into end stage liver disease occurs so gradually, that over time you forget what it is to not suffer. I became accustomed to the pain and weariness. Toward the end, I had to have ascites (accumulation of fluid in the abdominal cavity) drained once a week. Josie and I talked about that experience as well. Fortunately, she had a dedicated team that she liked very much and they made it as pleasant for her as possible. I struggled in that department. I had one nurse that did my procedure for awhile until I asked them to give me someone that didn't think that the super long needle that they use to suck out the fluid was a joy stick and he was playing Mario Cart with my innards. He was replaced by an actual doctor; however the first time he performed the procedure with me he asked me to move my legs; however, he failed to account for the fact that the jar being used to catch the fluid was sitting between my legs and when I moved the hose that fed into the jar became dislodged and started flying around the room like a deflating balloon. Everyone ducked under the table I was laying on until the doctor got brave enough to catch it. Again, I can look back now and laugh but at the time, I was not amused. I survived it all, but trust me when I say I hope I never have to do anything like that again.

Just prior to my eventual surgery, I began to experience complications and had to be hospitalized several times. On one such occasion, I was on the transplant floor at Nebraska Medical Center and I had a roommate who was more ill than I was. She was experiencing a severe case of encephalopathy (impaired brain function, confusion) and the nurses had to stop her from eating her placemat when they brought her dinner tray. It gave me a glimpse into what I had to look forward to in just a few short months.

Throughout much of this I was still trying to work my full time job until one day in the summer of 2007. I was in my office trying to work and I had been struggling all morning. I couldn't remember my passwords to log into my computer, I couldn't complete the smallest of task. My son came into my office to ask me something and I asked why he wasn't in school. "Mom, we are on summer break". It didn't take him long to realize I was totally out of my mind. The next thing I know, my mom is taking me to the emergency room at one of our local hospitals. They asked me the date and I gave them some random date and said it was 1942. I remember several family members being in my hospital room and then waking up in a dark room with a big machine all alone. I was on a gurney, had an IV in my arm, the room was completely dark and I was completely alone. I hop off of the gurney, and look down the hall. The hall is dark and there is isn't a soul in sight. I decide that I must have died, so I pull out the IV and start walking down the hall wondering why there is no bright light for me to follow. Oh my God, is this Hell? Just then, a male nurse runs up behind me and grabs my arm and ask me what I'm doing. I say, "I dunno, what are you doing". He says, "The back of your gown is wide open". I say, "I don't care". He says, "Well other people might". I say, "I don't care"..... from there I get ushered back into the room with the MRI machine. I don't recall much else other than being told later that they caught hell for leaving me alone on a gurney in a dark MRI room with no supervision. This occasion marked the beginning of my sick leave; which I did not realize would end up lasting about a year and a half.

A Second Chance

But for the love of my brother Tom, I would not be here to reflect on what it was like to face my own mortality and live to tell the tale. Another very clear recollection I have is the amazement that I had after my transplant at how good I felt. I had been so sick, for so long, I had forgotten what it was not to suffer. I pray that improvements will be made to the transplant system so that more people will get to have that experience. I certainly wish with all of my heart that my friend Josie did. Everyone deserves a second chance!