Not a Warrior: The Value of Embracing Chronic Kidney Disease
Every day when I open up my computer to see what's going on with people around the world living with chronic kidney disease (CKD) I see people calling themselves “warriors.” They may say “kidney warriors” or “dialysis warriors,” implying they are fighting their disease. I know why they like to call themselves warriors. I totally understand the mindset and the temptation to do so. But, I don't buy the premise of us being warriors. In fact, I feel sadness when I see it. So please let me tell you why this is so.
CKD is a chronic condition. There is no cure for CKD, only relief in the form of medication combined with either dialysis or transplantation. Once we have CKD, we have it for life. By its very nature, a chronic condition is there for the rest of my life. That is why it's called "chronic." So by calling myself a warrior I would feel like I go into a battle I am ultimately going to lose. The disease is going to get me in the end.
I know I have to live with my kidney disease for the rest of my life. I have lived with a disability since I was born, and have used a wheelchair since I was 10. My disability has given me an advantage compared to many others living with CKD. I know deep down that I when it comes to my health things are not going to miraculously going to be more normal, for better or for worse. Therefore, there is no need for me to fight it. If I start fighting my disease, I am going to lose. Regardless of what I do.
I have yet to see someone whose kidney chronic disease reversed. Someone who in earnest can say, "I was a kidney warrior and I won!" If I ever meet one (and if any of you out there is him or her, please tell me) I will jump up and down in my seat in jubilance.
I am a peace loving individual. Therefore, I will much rather embrace my disease, just like I learned to embrace my disability early in my life. I want to learn how to live with it as peacefully and harmoniously as possible.
It is an eternal learning process. I want to show others how they can do so as well. I often help others in my situation as a counselor, sometimes also as a friend, an advocate, and a shining light in a world that—admittedly—is pretty dark at times.
My CKD is an aspect of my body—not an aspect that I particularly like—but it's there. It also has an effect on my mind. I have written about that previously here. I just see no point in fighting something that ultimately is part and parcel of my physical existence.
This is not because I walk around in a daze of eternal bliss and unfounded optimism. I get frustrated and angry too. I yell at my body when it lets me down. So, I do fight aspects of my disease. But only verbally. After a good yelling I usually feel much better.
I have dubbed my diseased body Harry. I chose that name because it has a tendency to drag me into hairy situations where I feel like it has control over me when I should have control over it.
And trust me. I have had many episodes where Harry has taken control and led me up a certain creek without a paddle in the past couple of years. I have had recurring infections with more than 20 hospitalizations in 36 months. More than a handful of times I was fairly certain Harry was going to give up on me and I would have to enter the dimension none of us have any idea what is. Yes, I smelled the Grim Reaper in my solitary hospital room on numerous occasions. And had I called myself a warrior, I would have stared defeat straight in the face.
But, I didn't fight, so there could be no defeat. I asked Harry if he really intended to desert me in this, our hour of discontent. Sometimes calm, cool and collected. Other times, I probably raised my voice. No matter what, Harry is the quiet type. And he stayed with me through it all. He was my body and my buddy all rolled into one.
And for that I am grateful.
I am grateful because I am still here to share my story of living with my disease. Of living with Harry. Of living a life to its fullest — not despite but because of my kidney disease and my disability. Because, I learned many years ago when one door closes I turn my back to it in search of the next door. And that is why I will continue to be a kidney advocate, working for better conditions until the day that Harry decides now is the time for us to part ways. As buddies, of course.