Living with kidney disease is not a walk in the park, whether it is developed later in life, or was diagnosed at birth such as in my case. I greatly appreciate hearing words of comfort from loved ones, but I have always appreciated even more when someone would recommend a book, an album, or a song that would help get me through. Some have even suggested movies; however, I am very picky when it comes to movies about kidney disease. I would always get upset at how actors don’t look even close to how we look and feel when we go through dialysis or a kidney transplant.
Through all the books and music either recommended to me or which I came across myself, one song by Avril Lavign really stood out to me. It’s called “Head Above Water.” This song truly gave me courage and strength to continue fighting my battle with chronic kidney disease (CKD) even in moments when I just wanted to throw in the towel.
The song itself is not about CKD, but listening to it, the lyrics are so powerful and coincide so much with what I would go through while on dialysis and preparing for a kidney transplant. I’m a very lyrical person, this is what typically catches my attention when it comes to a song. Words matter to me, what is said must really hit home for me to fall in love with a song. That’s exactly what happened with this song, as the song speaks of preparing for a storm, and that is what I felt I was doing before each dialysis day, before each surgery for a new catheter, and before each one of my three kidney transplants.
Going through each of these battles always engulfs me in fear and panic to the point of shutting down or breaking down. When I listened to this song I realized, “Girl, you have got to keep the calm before the storm, don’t let it control you,” so I would just stick my headphones in and listen to the song beforehand to get that strength and courage and say “bring it on.”
This song helped me realize how much my life is worth fighting for no matter how difficult the battle gets, because I have dreams, I have goals, I have my own voice that maybe one day many will hear when my story is told, heard, or read. Even though there are some limits—for instance being on dialysis and having to control how much I drink so that I don’t feel like I’m are drowning in my swelling—I had to keep going. Sometimes this song felt so literal in talking about not drowning and keeping my head above water because truly that is exactly how it felt when I was on dialysis and there was too much fluid in my body. I have felt that feeling of drowning while on dialysis as well as waiting for a perfect match for my kidney transplant. I cannot count how many times at night I would break down and beg God to uplift me and not let me go, or how many Sundays I went to church praying for strength, praying for courage, because if I had to go through with the constant surgeries and not feeling well on dialysis, I could not do it alone.
This song pushed me even more to lean on God and ask him to rescue me, to hold me, to pull me in so that I would not drown in a sea of fear, despair, and panic. For me that was one of the greatest gifts I received that I gave to myself. Through the words of this song and the tears I would shed I was able to cope with dialysis, and with the IVIG treatments that were so intense but necessary to prepare me for a kidney transplant and abolish any possibility of having a rejection due to antibodies.
The uncertainties will always be there in my journey. I have come to learn and accept that, but that does not mean I have to go into the storm blind and alone. I’m taking my song with me, and I’m not running through it, God will continue to carry me through the darkness just like the song says. The insight of coping with CKD for me has been highlighted through strength, courage, and music. Thank you, Avril Lavign, for your song, your lyrics; even though it wasn’t made for a CKD patient in particular, it sure feels like it was.
I am a passionate woman, working hard to finish my final year in university and proudly receive my Bachelor of Arts in Psychology degree. Getting to this point has been everything but easy, the work in the courses has been the least of the struggles, and my health has been the biggest obstacle. Living with CKD, with most of my life consisting of dialysis, followed by my three kidney transplants, learning how to live as a legally blind individual, and surviving cancer has been draining but also a blessing. In the process of coping with my health, I found another passion of mine, writing. I own several diaries for different purposes such as poetry or lyrics, philosophical or psychological thoughts, and prayer journals. Nature is another love of mine, I can spend a whole day just sitting down staring at the water in a lake, ocean, or river, or go hiking in order to find my bliss.
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