Living with sickle cell is an adversity that demands my entire physical self. It is living while knowing that there is something different about me yet understanding that others cannot see it – until they can. It is knowing deep down, at all times, that any miscalculated move can put me out of my current affairs for time that can’t be given back to me. Becoming used to the paranoia of slipping up even when I know that I am doing everything right.
The time I spend in sickle cell pain can be anywhere from a few days to a few weeks. The more severe, the more likely I am to be admitted into the hospital. The hospital is a familiar place that I have spent countless nights in; where I can remember spending my 7th birthday, opening my presents surrounded by doctors and nurses, and being restrained to an IV pump the entire time. At the time, I do not recall thinking that this was an abnormality at all. This was a completely expected concept for me: a life bound to profoundly dreadful pain – something that none of my peers could begin to understand.
When I Was Younger
Growing up as a young child, it was always known for me to be more cautious about, what really comes down to, just “being a kid.” I was taught to be careful of the things that meant having fun. This suggested a few qualities of life: it meant that I knew I needed to take it easier than my peers, that I could be put into a potentially dangerous situation from being too active, or during this time, “having too much fun,” and that I just wouldn’t be able to do the same activities as the other kids around me, or at least to the same degree. This nerfed childhood was completely normal.
Nowadays, I have become so accustomed to the pain crisis but the most stinging pain is the depression that comes along with prolonged acute pain, prescription opiates, and the inability to perform the way I desire. A pain crisis is a commitment of my entire health – it is so much more than just pain. After a hospital visit, I am required to rehabilitate myself back to stable health. My body depletes itself of healthy, oxygen-rich blood cells, and it goes into a state that requires weeks on end to build back the framework that I am used to living with. This is energy exhausting and certainly triggers depression.
Sickle Cell Causes A State of Hopelessness
I get accustomed to being in a state of hopelessness as I fight to maintain basic levels of life and energy. It is difficult for me to put into words the frustration that comes with having to heave myself out of my own bed – a seriously exhausting task that takes my entire strength and then some. I fight to stay standing up while I shower, while the motions of washing myself with a washcloth fatigue me to no end, and fight even harder once I am finished to not pass out of exhaustion while drying off. At this point, it is apparent to the eye the amount of weight that is lost after a hospital stay. Self-confidence depletes. I choose to live more reserved during these times. Usually, I am going through withdrawals from the pain medicine as well. Night sweats set in, anxiety can fester, and irritability is an understatement. Life is truly living hell at this point. There is no quality of life. It takes around two weeks to begin to regain some clarity. The pain is usually gone at this point but the emotional toll still straddles my consciousness. I feel as if I have been utterly and entirely defeated.
After Awhile Normal Comes Back
Then, after enough time, normal life comes back around. I no longer have to put absurd consideration to each individual move I make. I can freely hop out of bed, start socializing again, and begin to pick up where I left off. I feel like myself again and can continue my path yet I know my wrecked state has stolen from me precious time that cannot be given back. I do my best to maintain my health, and to look forward to life with gusto. Even through these stable, healthy days, I am keenly aware that any miscalculated move can yet again put me out of commission. I am keenly aware I can slip up and forgo my future days as quickly as the last time. I understand my relationship with this disease as well as I understand myself. I live with it every day knowing what it requires of me. Though all in all, I know that living with sickle cell is an adversity that demands my entire physical and emotional self.
Mathew – Sickle Cell Patient