I received a call from my doctor today, and she told me that my anemia is doing a lot better (I have been pounding iron), but my kidney function has dropped to 6%. It wasn’t really a surprise; I’ve been so weak the last few weeks that I can barely get myself dressed in the morning. She suggested that the time has come to finally start the dialysis process. Unfortunately, the timing is bad. Kohl starts filming a movie May 1. Happily, they aren’t staying on location, so he’ll be coming home every night. With my doctor’s consent, our current plan is for me to start dialysis when shooting is done. (Although we might plan a small vacation right afterwards as a last hurrah.) After a year and a half of holding it off, I’m starting dialysis for the third time.
I’m not really sure how I feel about this news. I don’t want to start dialysis; I dread it. My mind keeps scrambling to find a way out of it, but the only way forward is to move through it. On the other hand, I can feel my body slowly giving out, like a ship drifting through the cold emptiness of space, in which all the life support systems are shutting down one by one. It’s a very surreal feeling. I can feel the tethers holding me to my body, to my life, getting more tenuous. Sometimes it seems like it would be so easy to let go and just float away, but I was born a stubborn fighter. (Seriously, ask my mom; she has a lot of stories.) Sometimes all I need is to remind myself that there are lessons I need to learn to become the person I’m trying to be; sometimes I feel lost in the loneliness of being the only soldier able to fight this particular battle with my own body while everyone else seems to be at peace with theirs.
I have a couple of mantras that I repeat to myself all the time. They remind me of who I am and who I want to be. The first is, “My will is stronger than my pain.” This is true, although sometimes I have to remind myself of that. Stubbornness can be a fault when applied to the wrong situations, and I have worked on that for years, but when I am dealing with my disease, there is a huge amount of power in being stubborn. I refuse to let my disease conquer any part of my life. It is something that I have to deal with every day for the rest of my life, but it bows to my will and not the other way around. There are obviously concessions I have to make, but I will not be defined by a disease.
The second mantra is, “Happiness is a choice and strength is a habit.” I know that it isn’t always possible to just say, “I choose to be happy,” and have my sadness disappear, but I have also realized that I have the choice to view my life through a positive or negative lens. Every day contains delight; I just need the eyes to see it. Strength is the same way: the more that I get up every day and accomplish something, regardless of my physical state, or refuse to allow self-pity to bog me down, the easier it is to continue doing so.
I do dread dialysis. I hate how foreign it makes my body feel. I fear the constant threat of infection. I am irritated by the complications it adds to my schedule and the infringement on my social life. I get tired of all the supplies I have to store and the constant regulation, and I am terrified of those nights that inevitably come when all the world sleeps while I am alone with my suffering. I know, though, that it is time. In all honesty, it was probably time a few months ago. I am so weak that even the simplest of tasks are difficult, and I have been having a hard time breathing. In some ways, it will be a relief to just get started; at least the waiting will be over. In regards to my fears, well…
My will is stronger than my pain.