It’s hard to believe it has been 23 years since we met. You arrived in a fierce and unforgettable manner. I went from having no clue who you were to having an alarming blood pressure reading of 160/140 mm Hg as a 10-year-old, and then being diagnosed with you. Wow, you wanted to be heard and you were, loud and clear. From that day forward, you have led me down a very unique path, one I wouldn’t wish on anyone, yet I’m okay with it. What other choice have you given me?
Little did I know upon our meeting that you had touched countless lives on my mom’s side of the family. Even though you are genetic and there is a 50 percent chance you’ll introduce yourself in a family member’s life, that percentage didn’t apply to our family. You did not skip a generation. You took my grandma before I was born. I wish I could have met her. You cut my aunt’s life short in her late 40s and made me endure more severe side effects of PKD than any of my other family members.
When you arrived, I was too young to fully comprehend the incredible impact you would have on my life. When I was 10, I was told that you wouldn’t affect me until my late 40s to early 50s. It wasn’t long after my doctor made that statement that it became untrue, and I learned firsthand every aspect of your cruel and powerful being.
When I reflect on my youth, I realize you made growing up harder than it already is for a healthy child. Your debilitating pain and countless cyst bleeds led to many hospital stays, with one lasting six months in my senior year of high school. You cut vacations short, stopped me from participating in gym class and sports, and eventually made your ugly self visible on the outside when my kidneys enlarged and made me look “11 months pregnant,” according to one of my surgeons. It is hard enough trying to fit in and, thanks to you, I felt very different and alone.
Somehow I survived middle school and high school and emerged as a strong individual, even with all that you put me through. As much as you tried to bring me down, though, my spirit was strong and I graduated with honors. I was not going to let you beat me. I had a promising future and I started college. That was when you took control and I was at your mercy. Your cyst bleeds led to an almost year-long hospital stay where both of my kidneys were removed, I was on dialysis, had pancreatitis, a congenital anomaly, and received more than 70 blood transfusions. I was too sick to be placed on the transplant waiting list and needed a living kidney donor to become healthy enough to keep fighting you. I was so lucky to receive a kidney at age 19, which led to my health being restored despite the many times you attempted to take my life.
I’m not sure why you attacked me the way you did. What did I ever do to you? Why when I was so young? I wonder what I would be like without you? How would my life have unfolded? Would I be a mom and have children if we had met later in life? Did you put me through all of this because you knew I could handle it? Because you knew I was strong enough and would use your challenges to help others? That is the only sense I can make of you. The odd thing is I have never had any anger toward you. I’ve just dealt with you as best I can.
Although you’ve made me devote so much of my life to you—something I will do for the rest of my days—it may be hard to believe, but it’s not all about you. I also have epilepsy and chronic pain from scoliosis to deal with. I know you took a lot away from me and tried to defeat me, but I like to look at the positive attributes you’ve given me. You made me grow up fast, although I think I’ve always been an old soul at heart. You gave me no choice but to be a fighter, or else I would have died. You taught me how powerful I am both physically and mentally, which in turn has helped me through other challenges in life. All of the loss and pain have given me great perspective on how precious life is and how to appreciate the little things. Positivity was the most powerful weapon against you.
I’ve taken the negativity and pain you’ve brought into my life and have used it in a positive and productive way. I’ve shared our journey together at more than 85 events across North America. This is the 188th article I’ve written on how I live positively despite you. Doing things like this has helped heal the wounds you caused and has helped others who are affected by you, too. There has never been any use in asking, “Why me?” because I know I am not alone when it comes to battling PKD.
I do have something to thank you for. Thank you for keeping my mom so healthy. Please continue to be kind to her. Although my life has been forever altered because of you, PKD, you do not define me. As ugly as you are, I’ve managed to create and lead a fulfilling life that is rich in love. I look forward to the day a cure is found so that you won’t have the opportunity to affect future generations. I will continue to find the best in you regardless of how much you test me, because PKD will not beat me!
What would you say to your PKD?