What is Cystic Fibrosis (CF)?
Cystic Fibrosis is a chronic genetic illness that affects many parts of the body. It operates like this: A defective protein caused by the cystic fibrosis mutation interrupts the flow of salt in and out of the cells, causing the mucus that’s naturally present in healthy people to become dehydrated, thick, and viscous. This sticky mucus builds up in the lungs, pancreas, and other organs, causing problems with the respiratory, digestive, reproductive endocrine, and other systems. In the lungs, the mucus creates a warm and welcoming environment for deadly bacteria like Pseudomonas aeruginosa and Burkholderia cepacia. The vicious cycle of infection, inflammation, and scarring that comes from the combination of viscous mucus and ineradicable bacteria leads to respiratory failure, the most common cause of death in cystic fibrosis patients.
It’s progressive, with no cure, which means it gets worse over time. The rate of progression varies from patient to patient and is often out of control.Salt in My Soul: An Unfinished Life by Mallory Smith, page x
I have a cousin with CF. So when I was asked to review this diary of Mallory Smith, I was glad to read it in hopes that it would help me understand more about what Andrew deals with on a daily basis. I have a chronic illness as well and I know that most people just don’t get it when you talk of pain or not being able to do everything you desire to do.
Salt in My Soul: An Unfinished Life definitely opened my eyes to the “good, bad, and ugly” of CF. Young Mallory Smith kept a journal beginning at the age of 15 until her death at the age of 25.
What a trooper she was. She at most times had a very positive outlook on life and didn’t let her diagnosis define her.
For me, it was a hard read feeling her pain and realizing that I didn’t know the half of what my cousin faces. I could only read one or two entries at a time. But it was worth the read.
If you ever wonder what having a chronic illness is like, read a patient's diary. #saltinmysoul #cysticfibrosis #chronicillness Click To Tweet
The Good, Bad, and Ugly of Cystic Fibrosis
In the following paragraphs, I would like to share a few of the things that caught my attention about the life of Mallory Smith.
Staying Active is a Plus
Mallory was able to stay very active for most of her life. When a patient is able to do this it is helpful for their lungs and other organs. She loved playing volleyball and swimming. Fortunately, she lived near the ocean which made her feel alive. Her parents were able to take her to Hawaii several times in her life.
From her diary,
Ever since my parents threw me in the water at age three, the ocean has been my escape, my passion, and a powerful healing agent. I’ve always faced complications of cystic fibrosis, from malnutrition to frequent and aggressive pneumonias. For years, I’ve had the unshakeable sense that being in nature ( specifically, the ocean) somehow heals me. Clears my lungs. Prolongs my life. Maintains my sanity. Restores my soul.
My intuition was right. While I was swimming, surf, and fighting CF; researchers in Australia were discovering what I always knew; CF patients who frequent the ocean live longer- ten years longer.Salt in My Soul: An Unfinished Life by Mallory Smith, page 101
A Positive Attitude
I have to remind myself not to envy those whose lives look normal because their mountains do exist, even if they’re less obvious than mine.
It’s given me empathy, and gratitude, and courage, and humor, and heartache, and happiness.Salt in My Soul: An Unfinished Life by Mallory Smith, page xiv
Mallory had a very positive attitude, always appreciative of those who cared for her. At times she hated that she was dependant on them. Sometimes she felt sad or guilty that her family gave up a lot to help her live. When she thought about death she seemed more concerned about how those she would leave behind might feel.
Mallory didn’t let CF stop her. Her love of nature and how healed her caused her to want to make a difference in the environment. She attended college and did studies about saving our universe.
Risk of Opioid Addiction
Chest pain is a real issue for the Cystic Fibrosis patient. Even the treatments themselves are rather difficult. I have watched my cousin apply treatments on his son. Beating and vibrating the chest to loosen the mucus. But I’m sure the real pain comes with the infections and pneumonia. Mallory wrote one time that she never thought she would love the feeling of being on opioids.
I never thought I was at risk before. But now I realize it can happen to anyone and I need to be careful and I’m happy the doctors don’t want to send me home with oxy. They say if I have pain that severe, I should come to the ER. It’s a valid point.Salt in My Soul: An Unfinished Life by Mallory Smith, page 142,
Scheduling at Home Treatments
Often Mallary would need to have nurses come to the house to give her treatments or change her PICC line. Scheduling these in a timely matter sometimes became a challenge. The nurse would not have the right supplies and the pharmacy would want to supply them (you know insurance issues we all have). But in her case,
As with many, chronic illnesses, one medication doesn’t continue working all through your life. Medications constantly need tweaking or changed completely.
During her college years, Mallory participated in a drug trial. She never knew if she took the real drug or the placebo but one thing she knew, she felt much better when she was on it. But then, an infection caused her to be removed from the trial. She begged her doctors to allow her to stay on the drug but it was not to be.
Cystic Fibrosis Does a Lot of Taking
Mallory missed a lot of classes and would often head to the hospital right in the middle of a project or a great stream of athletic accomplishments. This could be very frustrating. The constant changes in life, due to hospitalization, found Mallory convincing professors and coaches that she needed more leniency than the typical student.
..It’s hard to look forward when we must always be looking at the ground beneath us; we’re more lurching than walking, stumbling to stay upright.
Being frustrated and angry that something was taken from you hurts creativity, the very same creativity that could help you reinvent your possibilities and achieve your ends. understanding this trap is important-knowledge is power.
So yes, CF does do a lot of taking. It’s a complex, unpredictable, irreversible, progressive, painful, suffocating, choking weed of a disease and it’s okay to have it.Salt in My Soul: An Unfinished Life by Mallory Smith, page xii
Mallory shared how she became friends with other CF patients. It was good on one side that they could relate to one another’s issues and encourage each other. They had a whole second family within the health community. But it was also painful to watch her friends die. Most of us don’t have that trauma in our twenties.
My Final Thoughts
It’s been a long, long time since I have read about someone’s life who did not know Jesus Christ as their Savior. While Mallory had a beautiful spirit and a zest for life, she did not believe in the existence of God. To me, this was the core thing missing in her life. Her grandfather, apparently Catholic, discussed the existence of God and faith but Mallory chose her own path. This makes me sad because while she felt free here on earth, I must wonder if she is free now.
Typically, an atheist denies the existence of God. Whether they admit it or not they feel anger toward God for allowing bad things to happen or that they feel God restricts them from their own choices.
According to the Bible and my own faith, God is a God of love. So much so that He does allow us to make our own choices. The problem with free will is that our choices not only affect our own lives but others as well. Therefore, our decisions create pain in the lives of others and vice versa.
The good part is that God warns us of the consequences of our sin and He gives us second, third, and more chances to make things right with Him. But our choice stands.
In the end, He will be a just God. If you chose to live without Him in this life He will allow you to live without Him in the next.
Need Some Convincing?
I pray that whoever reads my words have made the right choice and if not that they will study it further. I suggest reading some of C.S. Lewis’ books. His autobiography, Surprised by Joy, would be a good place to start.
Lewis called himself a reluctant convert to Christianity. Meaning that he fought against converting until there was just no denying that God existed and had a plan for his life. Alister McGrath wrote a wonderful book set up like a conversation with C.S. Lewis. McGrath, also an atheist, converted to Christianity after attending college to learn and prove the non-existence of God. Along with other books on Lewis, he wrote If I Had Lunch with C.S. Lewis. I think you would enjoy this read.
May God Bless You Richly,
Pastor’s Wife (retired) & Chronic Pain Warrior blogs about how to make it through anything by relating her own life experiences to her writing. She is passionate about her love for the Lord and desires to spread that passion to others. She has a great desire to encourage women who are following behind her.