It hurts the most the first time. That hurt never goes away though. It happens again and again as you lose more and more of your past life to your illness. Sometimes the hobbies and activities that you always assumed that you would keep are lost as well; that is one of the worst pains of them all.
My first loss was cheerleading. After two torn shoulders and surgeries from Ehlers-Danlos Syndrome, it became clear that I would not return to this sport. I've always found a way though. While I may not be able to cheer personally, I have continued to coach 3rd graders on how to compete in the sport I love.
After the loss of this hobby, I began to choose hobbies that I could do despite my illness. I started coaching, writing, learning sign language, and I became involved in politics and special education. I have become an advocate for disabled rights. I have surprised myself with how much good I have made out of the bad. After picking up this series of hobbies that I could do despite my illnesses, I never anticipated losing another activity I loved.
Two days I realized I am truly losing the ability to play my instrument. At my autonomic testing, I blew into a mouthpiece, and my BP went so low that it almost zeroed out. I had noticed for a while that something was wrong. I knew that I could not make it through warm-ups without a break which was not typical. I also had begun adjusting to breathing more often in my pieces. I did not expect for it to get to the point where simply playing a note causes me to pass out or become incredibly nauseous.
It is devastating to lose something you love, especially when it happens over and over again. This is the sad truth of being chronically ill though; you will lose major pieces of your life and identity along the way. This was not the first passion I lost, and I am sure it will not be the last. It does not mean that it did not hurt any less though. You don't "get used to" feeling sick every day of your life. You don't "get used to" losing friend after friend, passion after passion. You never "get used to" the loss that chronic illness overwhelms you with.
I know that I will get past this as I do with every loss. I am constantly losing abilities and parts of my life, but I am also constantly gaining. I gain new spoonies. I gain new forms of advocacy. I gain a better understanding of life.
To any other spoonie experiencing this, it will be okay. You will find new passions. You will find new people. You will find a new purpose in life. It will just take some time. Enjoy what you have while you have it; you never know when it will be taken from you.
