Living with Kidney Disease Like You're Judd Nelson

My new pulmonary doctor is located at the Lewis Cancer Research Pavilion off of Reynolds. After

my doctor’s appointment I was walking out to my car when I saw this in the lobby and it grabbed my attention. I read the placard and was moved by what it said:

Ring this bell                 

Three times all’s well

 It’s toll to clearly say

My Treatments done

Or a milestone won

And I am on my way 

            I don’t have cancer and somehow felt like it wasn’t my place to even consider ringing this bell. I wanted to show respect to the people who had fought and earned that right because I can sympathize. I did take that picture because I knew I’d want to remember this moment.

As I walked out to my car I remembered the past eleven years of living with kidney disease and dialysis. The number of ways it’s impacted my life to trying to just live normally overwhelmed me:  Lugging that damn cycler on vacations and trips for NxStage, not being able to camp for more than two nights. having to stick myself with damn buttonhole needles nightly, the pain from that, not being able to make love to wife when the urge hits us while hooked to my dialysis machine, labs, fatigue, maintaining a fulltime teaching gig, missing tour guiding were just a few of the thought going through my head as I fumbled for my keys to unlock the Falcon.

The key was in my hand when that line hit me. “Or a milestone won”

Getting on the Transplant List for a kidney has got to count for something and it's a milestone for me. ......

I walked back and rang the hell out of that bell and I walked out like Judd Nelson at the end of The Breakfast Club.

Screw you, kidney disease

Cue Simple Minds song....

March is National Kidney Month. Love your kidneys. Trust me, it's a divorce you don't want....

Back To That Ideas Thing...

            A few musings ago I wrote about how I am awesome at coming up with ideas but my Follow -through leaves much to be desired. Yeah, yeah, yeah, I know. Everyone says they have great ideas but I feel like I have had some winners.

            Back in my geet-tar playing days, Jeff Doke and I came up with an idea for a song that revolving around the idea of it always being five o’ clock somewhere in the word so it doesn’t matter

when you pop a top on that adult beverage, just enjoy. Yet somehow in our best intentions we never  got around to it and was unpleasantly surprised in 2003 when Alan Jackson released a duet with Buffett called….”It’s Five o’ Clock Somewhere.”  

             I hate that song.   

            Ok, I hate my inability to follow thru. It’s not the first time and I know it’s not the last.

            Take that new show on NBS called Powerless which comes on Thursday night after Superstore. The show feature an office at an offshoot of Wayne Industries with an R & D crew of misfits making gadgets for people who have to deal with a world filled with super powers, heroes, and villains. It’s gotten some mixed reviews but I am enjoying it plus it has Ron Funches who always cracks me up and Alan Tudyk as Bruce Wayne’s spoiled cousin. Tudyk is a brilliant character actor but plays whiny jerk the best.

These 3 guys are geniuses together. Hate this show is not doing better.

            It also reminds me of a great idea I had back in my Snellville days living with Tim Stoklas. It would be a short film revolving around where did super heroes get all those wonderful toys? Yes, I just went there.

            The idea would be framed by two well-meaning but brilliant engineer brothers who would discuss the variety of products they have been commissioned yet difficulties would always ensue. Working on Wonder Woman’s Invisible Plane is great honor but what do you do when you lose the keys? How do you keep up with the backlog on all those batarangs for Batman?

            The one that always made me laugh was a Green Lantern bit we came up with over a bunch of Coronas. Green Lantern had commissioned some special weapon for the two brothers to create. They were having the big unveiling and Green Lantern was less than satisfied. It went something like this:

Green Lantern:  Are you guys even the least bit aware how my powers work?

Bro1:   Of course, you received a cosmic ring from a dying alien and was then commissioned as an officer of the Green Lantern Corps, an interstellar law enforcement agency overseen by the Guardians of the Universe. You protect all from the forces of evil so long as you keep your ring charged, which is why we created this high impact Lantern Carrier from Amazonian gold, GL.

(Bro 1 was the salesman speaker of the duo. We had planned he would refer to the Supes, his term for the heroes, with colorful fast talking nicknames. Think the Business-guy from Die Hard that Hans Gruber shot but less swarmy but likeable)

GL:  (seething at the two)  Do I have any weakness that say, something like a cosmic power ring might not work on?

Bro2:  (happy to help out) Oh yeah, the cosmic ring works on everything but……Ohhhhhh (realizing the mistake)

 (Bro2 was actually the smarter of the two but not the talker. He tended to say things as they were and not very abstract)

Bro1:  (almost shouting the answer like he’s won a trivia question)  Yellow! Ohhhhhhh! (it hits him the mistake)

GL:  Yellow!” (as GL points to the Yellow Shaped Lantern Case)

Bro2:  We did bad…..

       

     I realize all our bit was very visual but it never failed to make me laugh as Tim would act this out over many beers and I know it wasn’t just funny to us because others would break into laughter as

well. Just ask Jeff Doke.

            So why didn’t it ever happen? Lots of reasons. We had no idea how to make a short movies and what it would entail. Ideas on movies are great but we had no background for how to create them other than Kevin Smith flicks. I’d also like to add that with no money to hire actors, we’d have to enlist our friends to play the parts and while I have awesome friends I don’t have many with the Ryan Reynolds physiques and I am including myself in that statement. My six pack abs came from actual six packs.

It also came down to where I was at in those days. In the early 2000s, I talked about writing and I wanted to. It’s been my dream since I was 9. The abilities were there but not the confidence in which I would type anything anybody would want to read. Most of all, I didn’t have any confidence where I could create anything I wanted to hear from myself. The late 90s and early 2000s, I was dealing with more self-hate and depression than I am comfortable with admitting about myself.

I don’t hate myself anymore. Age has brought some wisdom that so long as I am creating for myself, screw what people think. I am working on my follow -through though I still spill out too many ideas to keep up with.

There’s that tour guide app that I got tons of notes on. I am still trying to write that horror graphic novel where John Trotter will illustrate. Oh, I have that Elvis story I’ve been running through my head since ’97. There is also this new idea I had the other day and its super cool about WWII Jewish refugees on the run where the mother…. Sigh.

Ok, let me get back to you. I still have some work to do.

One story at a time……

The Return of the Wookie?

            OK, so I feel fairly comfortable that I can sell a good bit of tees by tapping into all the circles I run within. Pretty sure those guys can help me out but after that it’s done. And I do not want to keep hitting my friends up for help. That’s just rude and flat out annoying.

            Like I said previously, I need to cast a larger net. I’ve had an idea where I might enlist Holiday Wookie. Basically, I am pondering on dressing Wookie up in the nearest holiday, have him say something positive and amusing and see if it catches on. If it doesn’t, no harm done. I had fun and move on to the next big idea I’ll not follow through on.

            If it does though.

            If it does, I can use Holiday Wookie to help me sell shirts. Getting some exposure to the issue and using that for some good and not just for me to maybe spread some awareness of how hard it is to do the whole transplant thing. I don’t know.

I’m making this up as I go …..    

A Poem. (Joe Milford Has Nothing to Worry About)

I always tell my students I hate poetry but secretly I am jealous.

Some of it is very cool and mesmerizes me

By being able to tell a story  in a few words about

Hot water corn bread or making grits with your grandpa

I only did bad haikus because they were assigned in class

I am older now and I appreciate things more.

Like NPR and watching the news

SO now I want to write poetry

I want to express feelings

My thoughts

And do it In fewer words

Plus I like to talk about myself.

#Isthispretentious?

Doubts? Oh, I've Got a Few.

            Anybody who knows me will tell you I am a veritable fountain of ideas but always have a hard time following through. It’s something I have really tried hard to work on over the past few years. So much in fact, that I haven’t even mentioned to anyone I am writing daily as my form of Lent. Frankly, I am worried I’ll stop in about a week or so. (I already missed Fri so I’m trying to make up with three posts today. This is the make up one) But I am really trying to focus and do this. I want to write and discipline is the key. My dozens of short stories, novellas, and graphic novels fighting for my attention on my hard drive are the proof I need to work harder.

            I am working on ideas constantly. It’s looking like we are narrowing it down to getting Luke to do a show out in Fort Worth, something up in YHC, and the tee shirts. I’d  really love to focus here in Savannah but the money just isn’t here. Kim covers dozens of articles weekly in her freelance career regarding fundraisers but they just don’t pull in the type of bucks I’m going to need. Savannah is the epitome of the model for the 1% and I just don’t see that circle helping a teacher/tour-giude  out.

So I got to figure out to get the biggest bang for my buck. One thing I learned from my days as social chairman for my frat was the bigger the net, the larger batch of fishes that come to the party. The American Kidney fund will match me up to twenty thousand dollars so that is my goal. 20 gs. I’d break that down further into the “how many quarters, dimes, and nickels but I suck at math.

Twenty thousand is nearly half my yearly pay and for some reason I honestly have this notion that I’ve got this. It’s comparable to the sword and the stone and I am the young Arthur. It’s overwhelming. It’s daunting and there is absolutely no reason whatsoever that I can do this. Others have attempted to pull the proverbial sword form the stone so why do I think I can raise “Excalibur?” I have no idea except for this:

There are a handful of lessons I’ve learned over the years and the biggest is to listen to my inner voice. It’s that little nudging I’ve cultivated from a whisper to a more conversational tone since my younger years. And you know what? My little voice is saying to me in very calm voice, “Robby, you’ve got this.”

I can assure you there is no swagger in any of this like in my Baby Rich college days. That voice is not arrogant and I’ve come to realize it’s not even mine but it’s that of the Big Guy’s trying to reassure me.

Now let me get this straight before we go any further. I do not honestly believe the voice of my long dead father is speaking to me from the Great Beyond. I am not lucky enough to have my Dad be my own personal Obi Wan Kenobi.

I just feel like when my subconscious wants be to take things seriously, it knows to speak to me I the tone of the Big Guy. It never failed to get my attention in the past so why wouldn’t my brain know to use this to drive point home?

The Big Guy taught me and my sister that in order to be successful, you’ve got to have a plan and that involves preparation. It’s the beginning stages but I am prepping like crazy. This week I am meeting with my social worker with a list of questions in hand. I’ve reached out to Harvey who is my friend from NxStage who has been through all this. Harv is working on a list to let me know everything he wished he knew going into this. Timelines are being formulated for me to start setting and meeting goals to get that kidney. And I have a secret weapon:

Kim.

My personal bias on the abilities of my wife knows no bounds but I also am well aware I am married to not only a professional writer but someone who is an expert in public relations, has a background in fundraising from her army wife days, and next to my sister, is the best person in the world who can keep my off-the-wall ideas in check with some sense of reality in mind.

Then I look a little further among my friends and family and it’s insane at the number of talented and resourceful people I’ve got to be able to beg and borrow from. There’s librarians, DJs, nurses, salespeople, artists, musicians, scientists, comedians, teachers, actors, preachers, camp counselors, computer people, and just a general gaggle of amazing people I’ve gotten to know and become friends with over the years.

So when I have these moments, and trust me, they happen several times daily when I begin to sweat how I’m giving up six months of my life to recover. Six months where I can’t draw a paycheck form teaching. Six months where I won’t be able to drive the back and forth from Savannah to Atlanta for weekly doctor checkups at Piedmont. Thirty-six months where afterwards Medicare will no longer pay for the immunity suppressant meds that cost over a grand a month. A swirl of how will I pay for this? How can I support my family? How can keep from being a burden on Kim?

“Stop.” I hear myself say firmly inside of my head. “Take a deep breath. Breathe in, breathe out.”

An overwhelming feeling of peace washes over me and it’s as if I feel that giant hand slowly grasp my shoulder which recognize since childhood and I hear it.

“You’ve got this.”

Damn straight I do. Let’s get a kidney. Who’s with me?  

A Teachable Moment.....

3/2/2017

            It has now been officially one week since I was told I would be listed. It’s been nice. I honestly do not have the right word to describe it. Ok, maybe overwhelming. But still nice. I’ve noticed that every night when I sit down ot stick myself, I find myself wondering how many more times will this be now that I know this will a process with a finite number. Somehow that makes the sting seem a little easier.

            Had a funny moment in class yesterday during my Am Lit. Voshawn came up and asked how I was feeling.

            “I’m fine, Thank you for asking but where is this coming from. Very out of the blue.” I responded.

            Oh, well, Voshawn stumbling over his words in a very surprised manner. ”I thought you got a kidney over the weekend. I wanted to make sure you were ok.”

            Aww, man, thanks, I smiled and I said to him. “That is really cool you’d ask but it doesn’t quite work like that. I then proceeded to explain the process in a very quick manner which would keep a 17 yr old’s attention.

A couple of other kids began to listen because it was getting them out of doing vocabulary work. Suddenly the back part of the classroom became an infomercial on Kidney transplant. Not on the lesson plans but I guess we’re ok.

I don’t blame them for the questions and it has never bothered me. Frankly, I keep wondering if there is some way to tie in informing folks on this in a non-preachy, boring manner and where I could profit form writing. I guess that is one of the reasons I’ve started writing daily about all this. Maybe this will be my rough draft for something good.

#Fingers crossed

Azaleas

            When it comes to naming a favorite season, I tend go impartial. I love parts of all of them. As spring begins to erupt down here in Savannah with a vengeance’s, folks are complaining about the pollen. I get it. Pollen bugs me but I can deal with a little of that flowery spunk because it means my favorite part of spring is coming. The azaleas

            It all began with my grandfather. Pop planted those azalea bushes all over the property and when you’d drive up through the driveway, you were surrounded in an explosion of reds, whites, and my favorite, the pink azalea. I always associated azaleas with my grandfather and Easter because this would be about the time we’d rive down from the mountains to visit.

            On my first date with Kim, we went out to Bonaventure and the azaleas were literally popping with color. We drove around talking and getting to know each other. It was the second time we were speaking face to face but because I was by the Salt River and all the azaleas, I felt right at home. It was a date I never wanted to end and so far it’s still going.

            There are several white and pink bushes over at my school where I teach and I daily making my trek across campus and purposely walk outside so I can be surrounded by them. Azaleas and live oaks are not something most teachers can boast about on their campus and I consider myself quite lucky.

            When were house shopping, I knew I wanted certain things in my yard. I had to have live oaks, palm trees and a few cedars. When I walked into the backyard of what would shortly become the Manor, I knew I hit the jackpot especially when I saw an entire side of the yard was just holly bushes and azaleas.

            I spend much of my time at home staring out my bedroom window into the backyard. It’s not very big but it has a taste of everything I believe represents what Savannah is to me. If you drop by Stately Rich Manor, you’ll probably find me on the back porch with radio playing and just relaxing while I survey my surroundings. I’m a lucky man.