Whether it’s physical or mental, it takes everything you have just to get through the day. It’s not being able to fall asleep at night and not being able to get out of bed in the morning. It’s checking your heart rate constantly. It’s sweating palms. It’s the leg bouncing, your mind going through the worst possible scenarios. It’s being emotionally and physically exhausted all the time. It’s thinking you’re going to pass out right in the middle of a crowd. It’s your vision going black. It’s breaking down and crying with no sound coming out. You become numb to everything around you except your pain. Your disease is all you can think about when you are faking that smile and pretending everything is okay. It’s falling to your knees and making a deal with God that if you can get through this, you will never take another damn thing for granted.
But worst of all, it’s not telling the people you love that you’re hurting because you don’t want to take them down with you. It’s impossible to explain to them what is going on with you when you’re not even sure yourself. It’s losing people and not even blaming them for leaving you because you would leave you too if you could.
It’s the constant doctor visits. Staring at all those bright lights. Noticing how everything is pale, just like your skin. Seeing doctor after doctor. Watching that doorknob turn one more time, hoping and praying that this time things will be different, that this time there will be an answer to your prayers. It’s the constant weigh ins and the constant blood tests. The poking and prodding. Getting prescribed medication after medication but still not finding relief. It’s knowing the drill when the nurse gives you your hospital gown and leads you down the hallway to the O.R. It’s the chill of the operating room. It’s counting back from five… 5, 4, 3, 2, 1. It’s waking up in a hospital room with your parents and loved ones by your side. The pain you see in their faces hurts just as much as, if not more than, the disease. It’s being wheeled out of the hospital, unable to stand on your own two feet. It’s keeping hope despite all of this that one day everything will be okay. That one day you will have your life back.
Then that one day comes. One little pill changes your life. It’s watching your life slowly getting better and realizing just how strong you are. It’s being proud of how you held on so long. It’s realizing that if this is as good as it gets, you’re going to make the best of it. You won’t let your disease define you. After all of this, you regain control. It’s your time now. Your disease changed you, but now it’s time to get on with your life.