I talk about my life with a double-lung transplant regularly. Sharing the double-edged sword of transplant during National Donate Life Month may help others see how this life can be bittersweet.
There are highs and lows and seasons of struggle and victory, each one powerful in its own way. We cannot fully know this transplant life until we have the valiance to share the vulnerable pieces of our stories.
I felt so much guilt and shame after my transplant because I was struggling. I had this new gift of life, but I wasn’t enjoying it at all.
My anxiety was through the roof, and I was walking around with a dark cloud over my head (hello, depression). I was in an obscene amount of pain and discomfort. It didn’t feel like I was in my body because my chest was numb. My mental state had completely changed.
Between adjusting to medication side effects and having my life as I knew it for 30 years turned upside down, transplant isn’t the simple swap of organs we’ve been made to believe it is. Every stage of the process is a different level of hard.
I felt horrible because I had survived my transplant but wondered how I would live this new life. I only shared this with my therapist and my close friends who had been through the same ordeal. I didn’t want anyone to think I was ungrateful for the gift of new life. I knew they wouldn’t understand unless they had experienced what I had endured.
People pressured me about how to live. I was adventuring in a new way, careless and spontaneous because I had never been able to be like that when I was chained to breathing treatments and oxygen.
People accused me of running away from my life, when I was actually running toward a life I had never had the privilege of fully living. Others kept asking when I was going back to work, saying things such as, “This is why you got a transplant.” This completely negated my healing process. These people didn’t have to question why they were alive.
Those of us with chronic illnesses, disabilities, or life-threatening conditions are held to a different standard. It’s as if we have to account for our every action.
When I was sick and couldn’t work, other people would say, “I wish I could stay home all day and do nothing.” If I was traveling, others would say, “Must be nice.”
The lack of understanding and willingness to see my life outside of a skewed scope astounded me. It demonstrates how much our society has been shaped by and for the able-bodied.
Many people don’t realize the power of their words. Those of us who fight for our lives daily work hard all the time and never get a break. We can’t take time off from the full-time job of taking care of ourselves. If we do, we may become deathly ill or die.
I often power through symptoms to enjoy moments in my life. The pressure to prove myself to the able-bodied community is astronomical and absurd.
Just because I’m struggling doesn’t mean I’m ungrateful. This is a common misconception. From the outside looking in, transplant recipients should be grateful just to be alive. We aren’t often given the space or permission to complain about our struggles because our lives were spared.
But beneath the surface, many of us struggle in some way every single day. Our struggles tend to be invisible, which further complicates explaining our situation. What meets the eye seldom tells the full story.
Struggle and gratitude can actually be synonymous. The most I’ve ever struggled was during and after my transplant. I was also at my most grateful when I realized I had lived through my transplant surgery and could breathe in a radically new way afterward.
Gratitude got me through my darkest days when I wanted to quit. I paid a price for every breath, which has made this side of transplant so much sweeter. The tiny moments of gratitude grow. I still struggle every day, and I’m grateful for this new life I get to live.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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