* When Mathew Glarum was asked to write directly to “Sickle Cell” as a living, breathing entity, he composed this insight into the effects of Sickle Cell on his body and his soul.
Dear Sickle Cell,
A part of me wants to thank you for all that you have done, but upon further research, I find that the definition of Stockholm Syndrome is as follows: “An emotional response. It happens to some abuse and hostage victims when they have positive feelings toward an abuser or captor.” It is not unlike me to be completely optimistic, even to the point of naivety. But I would not say that my feelings towards you are naïve. I think it is quite the opposite. If I were naïve I would say things like, “You make my life living hell,” “You strip me of basic opportunities,” and “I am unable to do the things I desire because of you.” I am done saying those things now. Time changes you and pain changes you even more.
There is a mythological trope that explains the transformation that occurs when a part of yourself dies. This is represented in the dramatization of the phoenix, the bird that dies by fire and becomes reborn out of it’s own ashes. This is arguably the same transformation that occurs to us as individuals when we experience things that require us to shed a part of ourselves, essentially killing off old ideas, useless presumptions, and the futile you. This process of death and rebirth is a permanent condition of life and it makes us even more of who we are, when we are constantly shedding ourselves of old ways and weak attitudes, to become born again.
Because of you, I have experienced this process of death and rebirth at a rate faster than any of my peers. I have revitalized myself over the course of my entire life, from each encounter with you, when I am entirely taken out by your grip, and led to a hospital bed for days at a time. When everything was going okay, when I was participating in the social world completely normally, when I had everything together; to when I had it all stripped away from me by your pain and your tests. You have brought my conceptual world to a halt many times, sometimes 5-7 times throughout the year. Each time entirely killing what I have built up in good health, and bringing me back to a place to become reborn again.
This process of disrupting my entire life, staying in the hospital, and forcing me to come back home in a state that is not remotely close to where I was before, to be forced to rebuild all over again has been a continuous process of death and rebirth. The death of my health, my day-to-day existence, my routines, my habits, my strength, my mental. The rebirth of all of these things when coming out of a pain crisis.
I am not dreaded, and I am not cursed by you. I have everything to offer to the world and I, in large part, have you to owe that to. I know what it is like to feel pain, I know what it is like to needlessly suffer, to profoundly hurt. I have been given the gift of tremendous gratitude because of you, I have been given the gift of tremendous perspective because of you, you gift me with the will to live, and for the strength to find a way. There is nothing I cannot do. “The gate is narrow and the road is hard that leads to life, and there are few who find it” (Matthew 7:14).