Cystic Fibrosis and Death

Living with cystic fibrosis, I have always been keenly aware of my short existence on this earth. I don't know if others with chronic illness like cf have felt this same way, but it seems to be a matter of reality. This does not mean that I am not hopeful. I am a very hopeful person, who prays that my new pair of lungs lasts me a very long time.

The idea of death hit me at a very early age. My parents would be open and honest about all of us being mortal and coming to an end, not knowing when that time would be. Our family's belief in Jesus Christ and his salvation, gave me great hope at the young age of 6. I believed that if I did die, I would eternally be close to Jesus and His followers in heaven. I held onto his promise, that our faith in him would save us from our sin. Romans 10: ⁹ Because if you confess with your mouth “Jesus is Lord” and in your heart you have faith that God raised him from the dead, you will be saved.

The idea that my cystic fibrosis was life threatening did not penetrate my thoughts until I was older. When I began spending a lot of my time in the hospital. From 8 years of age until I had my transplant, I spent at least two weeks, usually one month each year in the hospital.

It was during these times, that I can remember hearing parents wail as they heard or watched their child die. I remember being in Children's Hospital of Philadelphia. If you walked the hallways, you could look down to the ER entrance. It was in those hallways, usually late at night, that I heard the wails of parents. Sometimes, I would hear them in my unit's hallway. They always gave me the goosebumps. I was often reminded during these stays that life is short.

As I became older and met others with chronic illness' like cystic fibrosis, sickle cell anemia or cancer. I thought to myself, there are a lot of hurting people in this world. The hospital can be a daunting place of reality. For me, it taught me empathy and sympathy for the sick and dying.

I made wonderful friendships during my hospital visits. I have many happy memories of spending time with my new friends, playing jokes on the nurses and doctors, eating non-hospital food late in the evening with the night shift crew, making special bonds with my new friends, and finally feeling the relief of the cf tune-up experience.

Making friends meant losing friends in the cf world. I lost my first friend as a teenager, shortly after she had a transplant. Her name was Gretchen. I will forever remember Gretchen. As I got older, and saw the horrible effects of the disease on my friends, it allowed me to value my life so much more. I never wanted to take my life, family, friends, or illness for granted. I wanted to live my life to the fullest. I wanted to have hopes and dreams that I could fulfill.

During these teenage years, my healthy friends would ask if I was going to die soon. Yes, teens are brutaly honest, and I was asked this quite often. But I was alright with this question and would typically respond with, "Yes, I could die young, but we really don't know how long we each have here on earth." There were some other tragic accidents during my teen years that reminded me of this. For instance, our close friends, the Lawlers, lost their beautiful daughter and three others in a car accident right before our family moved to the coast. This heavily impacted my life in so many ways and once again reminded me that our life if short and only God knows the number of days we have.

I'll stop here and continue on another post, about how my view of death has changed since my teens. Since these years, I have seen many more friends pass. I have come close to death myself, and my view has since changed and matured.

Living with a chronic disease can be a very scary experience. I am so thankful for my friends who have passed away and have encountered death that have taught me so much about life and living. How to live vibrantly, love unconditionally, while enjoying each moment you have. Now that I have had a transplant, it certainly has given me more time here with the ones I love, yet it doesn't exempt me from a short life. I am thankful for my faith in God and hope for the future. I do hope to use the time I have here on earth to live passionately with great purpose.

My friends, I hope that for everyone, whether you are as healthy as they come or taking your last breath!