Grief is just one of the many emotions we all experience in life that makes us human. It is not linear. Some days you may feel like the world is caving in around you, while other days the weight is suddenly lifted, and the sun is shining. We all -- inevitably -- will find ourselves grieving something or someone at some point in life -- whether that be for the loss of a loved one, a beloved pet, or in my case, my own life.
There was once a time not too long ago where I found myself walking a fine line between life and death. I was only 19, and my lung function had plummeted into the low 20s within a few months. It seemed like no matter how hard I tried or how many IV antibiotics, procedures, and hospital stays I endured, my options to stay alive were dwindling. Eventually what I needed was either a miracle medication or to be listed for a lung transplant. Fortunately, I was granted compassionate use of Trikafta® prior to the the Food and Drug Administration’s approval in October 2019. Within two weeks of taking Trikafta, my lung function was up 12% and I had gained 10 pounds.
Prior to Trikafta, when I was very sick, I found myself grieving over my former self far more than I do now. The grief I felt then went hand-in-hand with jealousy of others my age who were healthy and carefree. While some were out partying, enjoying the first taste of freedom at college, and living on the edge, I was spending my days in the post-op room or a hospital bed hooked up to different IV medications, on high volume oxygen, and barely able to speak a sentence without getting winded. I couldn’t even walk to the bathroom to brush my teeth or take a hot shower without a break in between to catch my breath. There were even some mornings where my nurses had to lift me out of bed because of how weak I was becoming.
It has now been just over two years since my first doses of Trikafta. The past almost 25 months have been -- quite literally -- a breath of fresh air, and a wonderful break from being in the hospital or having a port that needs to be flushed out once a month.
While I am incredibly grateful for the life I live now, I still often find myself grieving the life I had before I got so sick. And even more so, the life I could have had if I never even had CF.
Some days the grief is overwhelming and far too heavy of a burden to carry, and all I can think about is how painful it is to live with a 40% baseline lung function; how all of my friends can run and walk for miles and I can barely go up a flight of stairs without being winded; or how I used to be able to ski for hours on end without taking any breaks. While, yes, I still can ski, walk, and run, I am never going to be as healthy as I once was, ever again.
The toll that dying takes on your mental health is something I would not wish on anyone, and I cannot begin to explain how difficult it was to live with that state of mind, especially at only 19 years old. How every daily task was a reminder of things I once could do or the person who I used to be. I would think my bloated CF belly was unflattering, but at that time I wished more than anything that I could have that weight back and fit into my old clothes. I went from a muscular 125 pounds to wearing a size 00, and even those clothes were baggy on me.
Typically now, if I find myself grieving it’s no longer over who I used to be, but rather what my life could’ve been if I had not gotten that sick at such a young age. Would I be able to carry children on my own someday? Would I have finished my college degree, or graduated beauty school on time? Would I not be fearful of hospitals and have anxiety about doctor appointments? These are all questions that I will never have the answer to, and that’s OK. While my life would’ve been very different from what it is now, I love my life regardless.
I am proud of who I am and proud of the battles with CF that I have won. I am a firm believer that everything – even the worst of things – happen for a reason and make you a stronger person.
My advice to anyone else who may be experiencing the same thing, is:
Reach out for help. Don’t be afraid to talk to someone about your struggles. Your doctors will understand the weight of what you’re going through and can refer you to a specialist you can talk to who can give you more support.
Make friends online with other adults with CF. I made it through some of the hardest times by finding friends on social media and having people who can relate to my situation. Thanks to Twitter alone, I have created a support network of lifelong friends with CF.
It’s OK to ask for and accept help from others! Very often, we put up walls and let our pride get in the way from receiving the support we need. If someone is offering to help in any way -- whether it be getting accommodations at work or school to make your life easier, or someone offering to bring you a hot meal or help you around the house – swallow your pride and accept it. People do care about you and your well-being and want more than anything to see you succeed!
Be gentle with yourself. Remember that it is OK to feel overwhelmingly sad some days, or not feel like yourself. Navigating life with cystic fibrosis can be tricky. It’s normal to feel a vast range of emotions especially when grieving the possibilities of a different life without the burden of having a genetic, life-threatening illness. All your emotions are valid and you are certainly not alone in this fight.
Interested in sharing your story? The CF Community Blog wants to hear from you.