The Adventures of Kidney Boy

A Journal About Living With End Stage Renal Disease. Dialysis. Transplants. Love. Family. Friends. The Unsung Donor. This is my life, from the end of a needle to the bottom of a pill bottle.

Saturday, November 27, 2021

Thankful 2021

 Yesterday, I was fortunate enough to spend another Thanksgiving Day with my family. Just a little over 18 years ago now, my father donated a kidney to me, and I have been lucky enough to have been around for every Thanksgiving gathering since, with my family and with many others who have taken me into their hearts and homes. 

It's hard to put all the emotions I feel about being thankful into words - I surely exist right now solely because of the generosity and good grace of others. I have a family who has loved and supported me, unconditionally, though many ups and downs for so many years. So to say I'm thankful really undersells it. I am grateful that I've been able to live and allowed to pursue what has been a pretty amazing and crazy life so far. There have been triumphs and defeats, but the love and support has always been there. So many do not get this luxury, and I truly am one of the fortunate ones. 

Hoping that all of us can find a little more grace, a little more charity for one another, and a little more love in our hearts as the years go on. I remain thankful for everything I have been gifted.

Monday, November 15, 2021

Almost Famous


Last night, I watched an old favorite movie of mine, "Almost Famous" by Cameron Crowe. It's celebrating its 21st anniversary this year, and I had to take a moment to think back and realize it has been over two decades since I sat in a movie theater with my brother Dave, and we watched this film for the first time.  I fell in love with it instantly; I had a real love for the music of the era, and at the time - playing music was my life. I played in a band with some friends, and we were gigging quite a bit. Writing songs, composing original works - being young, and letting music be our lives. I had the typical dreams of a young man then, of course, I wanted to play music full time - I didn't care about stardom, but I did want to play for people. More and more people, as many as we could. Music was life, and life was music. I was pretty carefree, naive and... well, living a dream. I was lucky enough to do it, and have the support of my family & friends. Life had other plans for me, as many well know, and a few short years later I found myself wheeled into an ER and told I had End Stage Renal Disease - an incurable condition which required dialysis for me to survive. Treatment for the rest of my life. Possibly a kidney transplant, but as I discovered, a transplant is not a cure - just another, better form of therapy. 
My life changed in an instant that New Years Eve, 2002. But I still had "Almost Famous". I remember working in a video store when it came out on video - and the owner got the "screener" VHS of the movie months before it was released to the public. He knew how much I loved the film, and he gave me that copy. I watched that tape so many times - I watched it with friends on so many glorious nights of our youth - well into the wee-hours of the morning, we'd watch the story and the music unfold. The movie still reminds me of those days.
Of course, in my heart, I wanted to be like Russel Hammond - the handsome, talented lead guitarist and songwriter of the band in the film, Stillwater.  But I knew in my heart that my awkward, nerdy and goofy ass was always more William Miller - the nebbish writer and protagonist of the movie. (And as I got older, I definitely identified more with the great Phillip Seymour Hoffman's portrayal of legendary rock journalist, Lester Bangs.) And as I got sick, and the music took a back seat - my life still went on. And as I aged, I was definitely more comfortable and happy being the William Miller type.  So many of us have dreams and ideals for ourself that aren't really what or who we are... but we find ourselves in so many different ways. I found myself living a life of extraordinary circumstances and adventure over the next twenty years. I found myself during a time where I initially pined that my life was over. And in spite of all the obstacles and hardships I have endured, I have lived a life of miracles and magic. I met so many amazing people, and went to so many amazing places - places I never thought I'd go. I did things I never thought I'd do. I gained the love and friendship of literally hundreds of amazing people - some who I still see and talk to, and others who have drifted out of my view. But it's been amazing. And as my dreams shifted, changed and intensified, I lived out so many amazing things that some other people might only dream of. I've been a lucky person. And the film remains in my life.  I was a 22 year old kid with stars in his eyes the first time I saw it, and watching it as a 43 year old man now... it's amazing what I feel. What I remember. Who I remember. I have that moment where I chuckle when I think back on that 22 year old Steven, sitting in that theater in awe of the story that unfolded on that screen and the dreams that bounced around his head. He'd never believe what this guy here today has done and seen. Dreams are what give us life, they give us hope. Sometimes they change, and we change with them. Sometimes our dreams let us down, and sometimes that can blind us to the miracles were already going through. I know I missed a few things along the way, and I look back in hindsight now and I chide myself for not realizing it more along the journey. But I'm still here today, I'm still alive. Living a different dream, but my dream has had moments of brilliance and happiness I could not have imagined possible then. And still, there's the film. Doris, the bus, rolling down the highway, its occupants inside, dreamers all (fictional parts of the mind of Cameron Crowe) singing Elton John's Tiny Dancer in unison, and enjoying the moment together.  Sometimes I feel like I've been riding that bus with many of you, singing Tiny Dancer together, and I have to recognize that I am one of the luckiest people in the world. Art is something that's subjective, but when something touches you, puts a piece of itself inside your soul and spurs you on in moments when you can't continue, it means something.  Sometimes a silly little film can sit on the edges of your heart, and it can lead you on to your own bliss. I guess I'm just feeling fortunate enough to have been touched by this movie and how much it reminds me of so many friendships over the years. It's the people in my life who have given me purpose and shaped my destiny - my fellow riders on this bus, and those who've welcomed me into their journey, I can say I am so happy you've been in mine. Always remember to cherish these things you love, even if they seem silly, because their roots can often go deeper than just the artifact itself.

Wednesday, November 3, 2021

The Lamp

 I used to have a lamp in my family room.  I still have one now, of course, but it's a different one.  I had this other lamp for years - it was a really nice looking one.  But the way it was placed and the way the light switch was placed on it made it awkward for me to turn on and off, especially while standing.  Every time I used it, I muttered "Fucking lamp..." like a grumpy old curmudgeon. I wasn't really annoyed; most of the time, I like to put on the air of a grumpy curmudgeon for humorous effect; I'm really not that grumpy or bothered, but it used to seem like it made people laugh.  Just a quirk of my personality - and, I am nothing if not a performer who loves to entertain people. But in reality, I loved that lamp.  I loved it a lot - the fact that it was difficult to turn on and off endeared it to me.  It was another small piece of my life - a part of the puzzle.  But every time, I muttered "Fucking lamp...." that was my stupid way of saying how much I liked it.  I know, it's just a lamp.  It's silly.  But one day, it broke - and now it's gone.  And I don't walk across the room at night to turn it off before I go to bed and mutter "Fucking lamp..." and I really, really miss that.  Sometimes those stupid little things that seem to annoy you are the little things that make your life worth living, and you don't miss them til they are gone.