I am sitting in front of the television, watching Mitch McConnell attempt to coerce the government to take away millions of people’s healthcare.
Like many of us, I’ve been following this healthcare crisis since the collapse of our electoral system last November.
Healthcare has been my main woe for the past few years because it is an everyday struggle — and I don’t mean Akademiks or Joe Budden. Nine years since my kidney biopsy, five years since I began peritoneal dialysis and two years of straight physical deterioration have made me a shell of the person I used to be.
For years, no one even knew that I was an End Stage Renal Patient. It took the life-changing event of my kidneys completely shutting down, for me to talk to others about it.
To be transparent, I inherited a genetic kidney disease called focal segmental glomerulosclerosis (FSGS) from my mother. This disease has attacked the likes of Alonzo Mourning, Gary Coleman, Natalie Cole and pro-bodybuilder Flex Wheeler. Essentially, FSGS creates scarring in the glomerulus (blood filter) of the kidneys over time. As an End Stage Renal Patient, my kidneys are unable to function without dialysis.
I’ve been patiently waiting for five years since being added to the donor’s list, but as my physical has broken down into a mishmash of aches, pains, nicks and tings — I can only lament how much I want this end. I am tired of discarding giant bags, disconnecting from a machine to move around the house and limping from the nerve damage to my feet.
They say the average wait time for a kidney transplant in New York State for 8,000 people waiting is anywhere from five-to-seven years, but trust and believe me when I say that regardless of time — you feel it all throughout your mind, body and soul. You would think if someone is in need of something this drastic that you could simply ask and receive. I started with family, then went to close friends and then I even made some calls to the public.
Asking for things isn’t my forte either. I work best in creative enclaves or on my own. Wanting to be an editor since a young pup — I made my own newspaper at age seven and sold it for $0.50 subscriptions — I have always been good with going into the field and getting the job done. I’m not really accustomed to seeking help… until now. I can’t do this on my own.
It’s not all doom-and-gloom. I have been able to see the world while being a peritoneal dialysis patient. I’ve traveled to Greece, the U.K., Jamaica and Panama while still keeping up with my schedule sometimes using manual exchanges. In the end, though, it never escapes my mind that having a kidney would be the solution to ending all my woes. My mother got hers almost 15 years ago through a transplant. She is still here, working on her garden, redesigning her house and enjoying retirement. I have exhausted the options of asking family (too old to donate or at-risk themselves), friends (said yes, but meant no) and I just felt lost in waiting.
My wife stepped up and deserves every kudos and acclaim that exists in the world. She got tested and was healthy (thanks to her excellent Ghanaian health), but when Mt. Sinai called back about being able to donate — to our and her entire family’s surprise — she found out that she was born with only one kidney.
That changed everything and still remains one of the most debilitating moments in my life. Those who know my wife knows she likes solutions and getting things done.
So, to not bore you any further, yes I am writing this as a confessional of sorts to let those who know me — or think they know me — know what I’m going through. Also, I am writing this to encourage all those who can get tested to do so and donate. Not just to me but to anyone in need. And learn your status — get yourself checked out because this disease that I live with affects African Americans at a rate three times higher than others.
Sidenote: My Hasidic Jewish social worker revealed that in her community the wait time for a kidney is one-to-three years, as they come together as a community to give. No hesitation. While I’m not naive to the 400 years of oppression that has disjointed us as a community, it doesn’t make it any less painful seeing my people (of all age ranges and backgrounds) sitting in a dingy, life-altering dialysis room in masses, while the healthcare system crumbles at our feet.
With that said, if you’re interested in getting tested and donating, please fill out this Donor Screening Form and send to Mount Sinai’s Kidney Transplant Center, call the Zweig Family Center for Living Donation (212–659–8096) and follow @NKF on Twitter for updates.
Most importantly, be sure to check-in with loved ones who are suffering with any illness and stay on top of your own health. The effort of active caring can make a monumental difference.
Kevin L. Clark is your friendly, neighborhood managing editor @Okayplayer. His fave MCs are 1) André 3000, 2) Black Thought and 3) Scarface. You can debate him at any time on Twitter @KevitoClark.