Last week I mentioned two men on the Austin Kidney Walk, too shy to talk about needing a transplant. Too uncomfortable to even talk with each other about it. One is my friend. After the walk, he wrote an apology and a thank you to his walk team. I’ve said before that giving voice to the waiting is important. My friend is still too shy to post this directly to his website, but he gave me permission to post it here. When I asked for permission, he wrote:
“Who would have thought that the worst part of this illness would be accepting in front of everyone that you have one. It is very easy to do it in front of strangers but very difficult with your friends and well-wishers.”
What follows are his words. Thank you A. for letting me share.
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Saturday morning, pleasant weather, beautiful lake, fresh donuts and hot coffee, perfect ingredients for a perfect day. But what made this day a memory of lifetime was to watch among hundreds of people talking a walk around the lake, a team of over 15 passionate people smartly dressed in custom made blue t-shirts, sporting the team name on the back and a message in front….they were there not because they had to, because they wanted to, to show their support for me and the cause that had been personal to me for years. It was something that had never happened to me before. It was truly a memory for a lifetime.
I wanted to say something during the walk but I realized I will not be able to complete without choking and that would just dampen the spirit of the day. Not that I had my thoughts organized yesterday, nor today but I am hoping if I get it out my system I can eventually stop the roller coaster of emotions I have been going through since then.
First thing first, I think I owe you guys an apology. I had known about this event months ago when my dialysis unit asked me organize a team and a fundraiser. I thought about it for sometime and then …..I declined. I said among all the people I know, I am the only one who has been affected by this and I don’t think I have any right to put them on spot or ask their help on a cause that doesn’t concern them or have much knowledge about it….and I hope they never have to find out. There are so many things to learn and cherish in this world that I think they will just be fine if they go along with their life without knowing what CKD stands for, what is organ transplant or how’s the quality of life for someone on 10 hrs of dialysis everyday. Ignorance is bliss and I am not going to ask for help and as far as fundraising is concerned, I will cover it.
I know the reasoning seems flawed and illogical but trust me at that point in time, it made perfect sense to me. I have had this illness for over 7 yrs now during which I have been on dialysis for almost 5 yrs, 10 hrs everyday. I had one transplant, over 45 surgeries, thousands of doctor visits and countless days when I felt too weak to even step outside the house. But even after all that I always tried my best to fly under the radar and keep everything personal. Other than my close family maybe there is just one other person who knew my true condition probably because this person was there during most of my surgeries or doctor visits. And the reason I did that was not because I carried any sense of pride or ego, its because I just don’t know how & when to ask for help. Unless I fail in finding alternatives or I hit the wall, I would rather deal with it on my own. It wasn’t until late last year when it was overbearing to realize that my illness is controlling the course of my life. That is when I went a little public with it but not before couple of folks had to work for sometime to convince me this the right thing to do, probably the only thing left to do.
So declining to participate in this Kidney Walk came naturally to me.
But then something very interesting happened. Just about week before the walk I got a call from a friend asking if I was going to do this Kidney Walk. I think she was a little surprised that I wasn’t. She then immediately asked if I would be okay if the she organised to participate in the walk for me even if I wasn’t there. I hesitantly agreed to it with still having thoughts that I had before…why would anyone join?! Its not related to them, it doesn’t concern them. And to my surprise, and my first reason for apologizing, everyone replied that they would love to be part of it and were quite excited about it. I felt guilty ..may be I have my thought process all wrong. The second time I felt guilty was when the fundraising part of the walk started. You guys had already opened up your heart by supporting me and the cause, now you guys opened up your wallet and that too generously! Even in my wildest dream I didn’t think the team would collect over $3100 in just 3 days.
And then comes the day of the Walk….May 12th, 2012, a day I probably won’t ever forget. Everyone was there that early Saturday morning, even a guy who I don’t recall the last event where he made it on a weekend morning :). Everyone puts on the t-shirts that the women made. I am not sure if everyone knows how much work they put behind this event, even I only got just a glimpse of it. They not only took the initiative and maintained the logistics of whole event, they argued passionately with each other for the t-shirt design, what color to use and how to make them. They ran out of house in the middle of the heavy rain to get more supplies and stayed up till 3:00 AM the night before the race to make sure t-shirts were ready for everyone but not forgetting to bring donuts & coffee for everyone to the walk after waiting 40 minutes in the drive-thru. And they did all that not because they had to, but they felt it was their right to do so, as if this whole thing was as personal to them as it was for me. I am at loss of words to express my gratitude towards them. If it wasn’t for them, none of this was ever possible.
So before this email becomes a book, I want to apologize to everyone for underestimating your care, support and love that you have for me. And thanks for giving me the comfort of knowing that in my battle for survival, I am no longer the lone fighter.
Wendy J. Manuel 