Why do I get to live while others die?

I feel like I'm holding my heart in my hands.

I feel like I’m holding my heart in my hands.

I just don’t get it. I want life to be fair but I don’t worry about “fair” when things are going great. Who does? Have you ever seen a lottery winner shake her head and say, “I don’t know. Life’s not fair.” No? Me neither.

My world used to be full of teenagers. They were my calling more than my career. I took them canoeing down rivers, snow tubing, hiking, biking and camping. We went to concerts, we listened to speakers and we talked about life and what type of people they wanted to be. I took them to foreign countries to serve the poor and American cities to help rebuild after disasters. I watched them discover Jesus and grow in faith. I helped them achieve dreams. The teenage years are a rough time but they are also an exciting time. There are no people more full of life and energy than teenagers.

Now my world is focused on people who are struggling to hold on to life. They are every age from infants to elderly. All they know is that tomorrow is not guaranteed. They see today as a gift and hope for more days ahead. It’s a major change for me. I am adjusting, I guess.

I used to get sad when I’d see students make poor choices and now I get sad wishing my new friends had options to choose from. I get really sad. Truthfully, I don’t know how I’m doing mentally or emotionally with the change. I wonder how I can possibly continue with this new “ministry” long term. Some days it hurts. A lot.

Today, I have three people in my world who are close to death. I’m not talking about being sick and waiting for a transplant. I’m talking about being too sick for an answer and too weak to even attempt surgery or further treatment. I’m talking about being at the end of their rope where every treatment has failed and no more options exist. Apart from a miracle, everyone in their world is starting to accept the fact that the end is here.

And here I am wondering why the Lord brought me to this place. I feel like a bumbling idiot. Am I supposed to have answers? If I am, why has God not given them to me? Are there even answers to be had? The words I do have seem hollow. I hear them come out my mouth and fall to the floor with a thud. Or maybe they help? I really don’t know. I pray they do.

What I do have now is understanding. I understand what it feels like to lose hope. I know what it’s like to go to the hospital and know staff people by name. I know the reality of being able to explain an illness in medical terms. I know what it’s like to help a nurse find my best vein and telling a new third year medical student which treatments bring relief. I have a new ministry skill set that I earned the hard way.

I see people who never before gave God a second thought become suddenly angry at Him. How can you be angry at someone you don’t believe in?  I don’t get it at all but I see it pretty regularly. A lot of stuff makes no sense to me in this end-of-life zone. I see other people who never before considered God find Him with unshakable certainty and start openly thanking Him.

Why do some praise and others curse? What is inside them that makes them react differently? I find myself asking God a lot of questions lately.

One of the things troubling me most is what the mental health pros call “survivor’s guilt.” It’s “why me and not him?” Many transplant recipients who receive organs from deceased donors wrestle with the fact that saving their life was dependent on someone else losing theirs. That’s not my case though. My donor is still alive and doing great.

Sometimes I lie awake and wonder, “Why me? Why did I get to live?” I am watching two little guys, both under 5 years old clinging to life with tubes and wires attached to their little bodies, machines beeping in rhythm. Both need miracles to make it. I’m in touch with two teenagers, both in hospital more than out, hoping that treatments will work to get them strong enough to get the transplants they need.

Last month I witnessed panic in a 54 year old man who received a liver transplant just over two years ago. Things were going fine until he woke up on a Tuesday morning with that horrific yellow tint in his eyes that we liver patients know so well. Tests showed that his liver went into full rejection. Four days later his family stood together at his bedside as he passed away.

I really don’t get it. I don’t know why I got to live while others die. All I can do is be thankful for each day I have.  I shrug my shoulders when people ask why these things happen. I mean, I have the theological answers and rationales. I’ve got a Masters Degree in theology that gives me the academic answers. I can go into explaining man’s fallen condition and the origin of pain and disease. I can assure people that God doesn’t give people disease and can explain why he allows it. I can talk about His glory, His faithfulness and His love. I can talk a lot.

The academic answers make sense in our heads but when our hearts are being torn to shreds we don’t really want the answers. The answers don’t make anything easier. When your kid is dying it doesn’t matter that mankind chose sin rather than obedience. Rationales don’t dull the pain.

So, I stand in doorways or hold the phone to my ear hoping to help somehow. I weep over tear-filled e-mails and agonize about my response. I literally can feel an ache in my chest. Their ache.

Words don’t matter much. Presence is what matters. When I was at my lowest I was so fortunate to have people who would just come and be with me. They knew I knew all the head stuff. They knew I had faith. They just came and stayed with me.

I remember my friend Jay Reilly coming into my hospital room at Maine Medical Center. Jay and I are the type of solid friends who are confident in our love for each other even though we don’t see each other much. We’ve shared some tough stuff during many hours on the road driving our boys to concerts. I had been holding things together pretty well until Jay arrived. The floodgates opened and my emotions spilled out in tears. Why? I had total confidence that I was safe with Jay. I knew I could be transparent. Jay had no words but his presence meant everything to me.

I guess that’s what I want to be for the hurting people the Lord has put in my life. I want to be present for them. Fully present. If people need words, all I can do is trust God to give me the right ones. If they need someone to pray with, I want to meet that need. When their families need support, I think God has brought me here to support.

I just wonder if I can do it. And I wonder if it ever gets easier holding my heart in my hands.

 

About Scott Linscott

Living life to the fullest, walking in the dust of my Rabbi, creating art through photography and written word, speaking words of hope and encouragement at conferences, workshops, church and civic gatherings.
This entry was posted in burnout, chronic illness, Liver disease and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

4 Responses to Why do I get to live while others die?

  1. FloridaVet says:

    Hey there Scott,

    I know what you mean. We survive our fight with this terrible disease and try to encourage others. We want to give them the hope that others gave to us during our most difficult times. I find myself that I have a calling to help support those who are going through this as well. But I have also found that it is very emotionally draining. I remember after my transplant is when I found several liver transplant groups on Facebook and felt compelled to offer comfort and hope to those who were going through what I had already been through. Every one of them affects your heart and to see so much suffering and to see some who did not make it to transplant is a very heavy thing to carry.

    Actually I was active before and during the time that Bill Pinson got his transplant. Once he recovered and became active in some of the same groups I decided that I needed to step back because of the emotional drain that I felt at the time. Bill had stepped in and was doing the support and provided hope to those in the group that were in very serious condition. It was during this time that you began posting on one of the sites and I was happy to see that Bill was able to encourage you and to see the friendship that was a result from that.

    For me I have found that there are times when I need to step back and re-energize myself though prayer and reflection before I can come back in and continue to be the hope that so many people need during the progression of this disease. Scott you have see both sides of this illness so you have a unique perspective and with your desire to serve others it puts you in a great position to provide hope to so many people around the world. Both you and Bill have a great sense of humor that helps many people, including me, get through the tough days.

    God blessed me with a second chance. I feel that it is not for me to ask why but to trust in Gods perfect plan and His ability to use even me to advance it. I too feel sadness for the family that had to lose a young son to give me another chance to live. I pray for them often. I feel that God decided to save me for a reason that only He knows, but that I can fulfill by following His lead with all of my faith.

    I personally have been blessed to have been given a chance to know you and Bill. Even if the circumstances were as the are. Keep the faith, and soldier on my friend!

  2. Anonymous says:

    i think you are a wonderful, blessed man scott. you need to step back alittle and realize you can’t save the world or take everyones pain as your own. you are here for a reason. like bill said, you make folks smile with posts and pictures. you, bill, brian, jeanne, betty and teresa brought light to my world many days with your hurmor and kidding. i too looked forward to reading all the posts you all were involed in. it always lifts my spirits. i still get a kick out of your tidbits. you see scott, you don’t need to have all the answers, just be who you are. believe me, that’s enough. peace and love scott.

  3. Bill Pinson says:

    Scott, I am almost 2 years out and I am just coming to grips with my Survivor’s Guilt, My wife and I both were happy that I got “The Call”, but I remember when I was waiting in the room before they took me to surgery and I started crying because someone had to die for me to have a chance to Live. My Transplant Coordinator told us the morning I received my call that my Donor had no wife, family or anyone close around him but he made the decision to be a Donor. I worried, I asked many times, Did he know Jesus? Surely someone so kind as to sign that Donor Card at some point is a good person, but did he accept Jesus?
    I am comforted in the fact that I know my Donor’s name is Frank, he lived a wonderful life, he was helping others when he had a bad fall down a flight of steps and was brain dead. His brother John gave me a lot of Peace telling me he was happy that I saw my youngest son graduate high school and start college, be with my two grandchildren and my oldest son Adam and I have a chance to Love my wonderful wife Amy.
    I have tried to share my story to offer hope, be there for people in need, I use a different tactic trying to do things for those who are where I was just 2 years ago, I try to make people laugh, I tell things that I did while I was sick that I shouldn’t tell because I want to try to add a smile here and there for people who are at wits end. Our friend Sandi Cressman sent me a message long ago when I was struggling with things, I thought some might think I am insensitive or tat I should be more serious. She told me that things I would say or do really helped her have a laugh when she got home from dialysis, she said she looked forward to some of the things that you and I would laugh about along with Brian Wagner.
    I appreciate your friendship from the bottom of my heart, I certainly wish I had an influence like you when I was a teen,

  4. Kim says:

    Remember God is holding your hand while you hold anothers.

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