The Vagabond Don

RIP JUSTIN SULLIVAN aka DUSTY aka SUPERFLUKE

Justin passed away December 12, 2009 surrounded by friends and family. I hope Justin's beautiful stories will continue to be read for a long time. Below is the a story I wrote for his memorial. You can access the slideshow shown at the memorial at
http://www.vimeo.com/8282338 

I am going to tell you a story about a superfluke, a superfluke in more ways than one.

 I met Dusty when I was 16, ruthless and toothless Dusty or the brainless wonder Dusty as he was called. To the girls he was known as the heartbreaker but that did not keep them away from “the Dusty.” Dusty ended up “dating” many of my friends while I blended into the background. I only know him on a superficial level fun, funny, the life of the party and super hot! But it wasn’t until years later that I fell in love with a man, a man that went well beyond first impressions.

I lost touch with that group of friends when I was about 18 but had heard that he had a daughter and gotten involved in a church.

Fast forward 10 years or so…
Jenn handed me her phone to give her friend directions. I looked at the screen and saw the name Dusty Sullivan; I instantly became curious and excited. I asked him if he was Dusty Sullivan from Grand Prairie and he said yes who is this and I replied “your new best friend.” There was no way to know at the time how true that statement was to become.

Needless to say he did not remember me all that well or at all but he did a good job of pretending! He used to say he Knew that night that I would change his life, but it took me a few weeks to realize that I had fallen for the heartbreaker. The only difference was he wasn’t Ruthless and toothless Dusty he was Justin, a totally complex, amazingly smart, ridiculously talented, unexplainably magnetic, easy to love easy to hate, abrasive at times and quick witted man, but most importantly still HOT!

It was not long into our relationship that I learned about the courageous fighter within. We jumped from butterflies in the tummy over our new relationship to needles, CT scans, MRI, surgeries, hospitals, pills, chemo, hair loss and transplants. I watched him fight cancer head on until his knuckles bleed and his eyes swelled shut. He had been knocked down many times but never knocked out. He would get right back up and start the next round.

We would learn new moves to dodge the punch thrown our way in order to experiences life changing events together, Italy, Christmas’ in Memphis, creating, fighting, making up, loving, supporting and learning.

As much as I was there, we were there, he was in that ring by himself and it was a lonely place. I realize that now as I read back through his writings. I was there for much of it but the physical punches I felt were mere lightweight compared to his heavy weight fight.

Justin left us a gift in his writings. He left us a lifetime of stories to share, RAW and DARK, optimistic at times and defeated at others but always awe-inspiring. He taught us to laugh at the absurdity of situations and the importance of poop! He made us feel his pain, anger, joy and lust for life.

Cady:
YOU were His hero, strong and brave. Self taught or genetic I don’t know. You are your father’s daughter. You inherited his insane talent and he told everyone about it. It is impossible to look at you face and not see him in you. He loved you with all his heart so never doubt that.

Kim:
YOU were HIS hero. YOU protected him as a kid, YOU wrote his story a little longer, and YOU continued to protect and fight for him till the end.

And friends YOU are the ones who gave him what he longed for… FAMILY.
YOU took care of him emotionally, physically, financially and spiritually. YOU cheered him on from the side of the ring and YOU stayed loyal even when he made it hard. He realized this in the end and I know it brought him much peace.

As for me and us. Well I feel privileged to have been part of his life and his fight. He may have changed coaches mid fight but I know he would tell you that Shannah is always right! So I was rehired for the last round.

He taught me so much about love, courage and passion. He taught me about setting goals and believing in myself. I found strength and patience I never new I had.

In the end it wasn’t a fight any more it became a dance a dance of love, gratitude and peace. Sweet poetic steps, hard at times, choreographed to create an ending to an epic story.

We are apart now but I know we will find each other again it has happened twice before.
Everyday for the last 2 ½ months I would say “have I told you how much I love you today?” and he would smile and say “No, but you can tell me now.” More than you will ever know babe more than you will ever know. Smack.

fighting off the sleep...

when I want to fall asleep I can't. when I want to stay up, no chance.

started a new chemo regimine this past week. and now for the next six months I will be going Sloan Ketteringrrrrrrrrr for an hour a day for two days straight. they place an IV, pump me full full chemical poison. but at this point there are no more options. it's either two days a month of this or let this shit eat away at my bones. currently by right hip is under attack. as a result i have enough narcautics to killa small village.

I am currently up to:

30mg of morphine every eight hours. for those who might not understand - that's a lot of fucking morphine.

8mg of hydromorphone 3 to 4 rimes a day or as needed for pain.

400mcg of actiq (oral transmucosal fentanyl citrate) - in other words a fentanyl pop. it's a narcautic lolipop. these are my favorites. they get rid of the pain within minutes. i have no clue but i imagine i could sell these things for $10-20 each to the right person. they come in 30 unit boxes and I am usually given anout 10 boxes every couple weeks. no matter how you look at it - it's a lot of money. oh, and I take these four times a day as needed for pain.

marinol - my new favorite. marijauna capsules. only one problem. my tolerence is built up too high and these do nothing for me, I would love to see what a couple would do to someone who has no tolerence.

then the rest are for anxiety/nausea, muscle/nerve relaxers, antidepressent (because nothing else makes me tired believe it or not.)

and the newest addition to the bunch - fentanyl patches. something like 100mg every three days unless i build up a tolerence and i can double my dose! i have yet to stick one of these on my body. all i know of this things I heard in the news a few years back about people overdosing and dying. if I could sell these mothers I would. otherwise i have no use for them.

and even with all these bullshit medications. I am still in pain. I am still sick. And I still have no desire to do another drug in my life.

still in nyc. have an apt in brooklyn that I found the greatest deal ever on. what sucks the most is I am now too sick to stay there by myself. so for the week I am in new hampshire. i wish i never had to leave.....

but it's back to the city this weekend and hopefully i will survive the next couple weeks untilnext month..

if you didn't know I had to bail on the triathlon. but rebecca was phenomanol. i stil plan to complete one some day.

but first I got to get through the next few months.

not sure how much of my ramblings make any sense at this point.

but on an ending note.

if you would like to come visit and act as a caregiver for a few days at a time I have plenty of room. there's more than enough to do, and it won't cost you a penny. not to mention I have all the narcotics a person could want.

now - no more fighting off the sleep. pressing save, closing it down, then shutting my eyes.

i hope you are doing better than i am.

I am every which way but straight.

It's been a year since I moved into my first place in Queens. I now live in Brooklyn and not a damn things changed. Well, that's not true. It feels like everything has changed. Everything except me.

I started chemo here in NYC this past week. It's a new treatment. So far it seems mild enough with the exception of one thing. Ok. Two things. The heightened sense of smell and taste. Try living in NY where everything already has a smell. Now, intensify that smell by a thousand. No a million. Then take that smell and give it a source. Each smell already has a source of course but this is where that source of smell becomes the taste that sticks to your mouth. It's like hairspray. Smells exactly like it tastes or should it be tastes exactly like it smells. Either way. Spot on.

This is what all of NY is like for me at the moment. I can taste everything I smell. No more words needed here just use your imagination.

I am not sure about where my life is or has taken me over the past year but hear I am.

I still feel lost as fuck. Confused as ever. And I still absolutely love this place.

But I am sick. Alone. And have to do more fucking chemo. But my Doctor might actually be the only way I can make it through this again. She is an absolute Nazi. And she is perhaps the one person who can help keep me straight.

And I could really use some straight right now. I am all over mentally, emotionally, physically.... I am every which way but straight. And now I am just tired.

So while I wait to see what this new chemical is going to do to me. I am going to the woods in New Hampshire.

I'm still here. Just don't feel like I have much to say or contribute. I have so little to give anyone.

However, I can say this. I love you. And I miss you. I wish I had a response other than, I'm ok.

But I'm ok.

And hopefully I will talk to you soon.

Did she find it already? How much is it worth?

I walked through the trees that surrounded my house only to find my ramp was gone. it was 23feet tall and and had 18 inches of vert. where could it have gone. every body hated it. in fact, so much so, that they would have rather it killed me then go through the trouble of taking it away. weeks later I saw burnt wood laying in the woods. it was the piece of wood that held up the coping. bastards.

I'm a pretty important person in my kingdom. I doubt they will ever try to over throw me. Its not like leading this place is all that hard. After all, we're heading straight for the underground. Why not just sit back and enjoy the ride. afterall, this is the captain speaking. and that's how it's going down... Is we're all goin down. And if you don't like it then - 'hey, fuck you!'

I've given you ample opportunity to jump ship. if there's something that you need, god dammit, get it your self. I'm off to find my lazy boy so I can drag it up to the front. No one's going to get to see it all. but I figure that's as good a place as any to see enough before it's my turn. fuck that guy. what a fucking waste. and that's that. now, enjoy or walk the plank.

All the things I must get done. Maybe, I should make a list....

I have no desire to sit at my desk at the moment so instead I will lay in bed typing away on my laptop contemplating all the fucking shit I HAVE to get done. I have been spending most of my days here as a retoucher.  The work has been pretty cool and my portfolio looks half way decent. I have a lot of work coming in at the moment but I just need to focus and get it done. Which is what I will be doing for the next four days.

Right now, Instead of working I think I would like to spend the next little part of my life in bed and write about writing. (*please note: I am currently on a mild amount of perspective altering medications.)

Once upon a time....

She looked at me and asked, 'Why don't you go see a therapist or something? Someone to talk to and get all of this out. There's plenty of people you could go to.'

'But I'm trying to talk to you about this... right now.' I responded. 'We are talking.... Aren't we?'

She looked puzzled and put out. At the same time. How can she be both confused and not interested in talking. This was us. This was our fucking lives. Fuck, was I that bad. Am I that much of a mess?

'That's not what I mean.', she said. 'You should go see someone who could help.'

Help. It's not help I am looking for. I'm looking for this. I already found what I was looking for. My head is racing but I can't seem to get past the fact that she missed my first point.

'Why aren't we talking, is what I should be asking.' I finally responded.

Or better yet, why are you so closed off to me, is what I wanted to say. But I know why. That wall is there because of me. Mostly. It was started way before I got here. But I finished laying those bricks. I put in most of the work on building that wall.

I didn't answer her question. She didn't answer mine. But I guess that was our answer to both.

This is my psychiatry appointment. I miss this. I miss writing openly and honestly about my fucked up life. I miss making a comparison to my own day to day with that of what I see around me. Or my interactions with the rest of the world. I miss letting everything out as I lay on the couch, or in this case my bed, and verbalize all these internal thoughts and emotions. I don't need to rationalize my life or my existence. I don't need to figure it out. I damn sure don't require anyone to hear or read or examine me as a person.

What I do need is an outlet. A way to take these things set them aside.

Putting them in plain sight has only helped keep them honest. If nothing is hidden than why try to hide it.

In this case, writing has been that outlet. And I haven't been taking advantage of it enough.

Instead I have been keeping it all in or most of it anyway and not doing anything with it. I am running out of room in there. I have to keep moving things around to make it all fit. But things are getting lost. I forget where I put it all. Currently, I can't seem to find something. I forgot what I did with it completely. It's gone.

I might have lost that one forever. I just wish I could remember it.

I don't want to forget any other thoughts. So, I am putting them down. Writing it all out. And this is my therapy.

I have found some other outlets though. I have been going to yoga as much as possible. The last two weeks have been tough with chemo and then the kid coming up. But hopefully I will have time over the next four days to do go.

Training for this Tri is a new outlet for me. Which I also need to do more of.

Fuck. And now once again I'm thinking about all of the shit I need to get done.

But this medication is making me sleepy.

The Beautiful-Chaotic Nature of Life... with a bit of bloggy style.

As I read the title back it occurred to me that it sounds a little dirty. Not my intention. But damn funny.

Tonight my daughter and I went to see FUERZABRUTA - it was absolutely fucking amazing. 

I found myself clapping, then dancing, cheering, then at one point even tearing up a little. All while standing and looking straight up.

I am not sure what every scene represented or exactly what the hidden meaning behind it all was but I found myself reflecting over the past few years, 5 to be exact, and thinking about all the times I was running against time, influence, what was 'right' or correct and at times even common sense. I can think of a thousand thoughts that, if followed through with, would have held me back. In other words.... I have wanted to give up or turn around and listen to the fear. OBEY. You know what FUCK OBEY! 

Man, RUN. Run as fast as you fucking can. Break down all the walls in your way and run some more. Don't ever stop running. 

There was a point in the production where the cast began to dance. Each one would look and scream at the crowd. The influence to follow was so fierce that at one point I yelled back. They danced as if they were saying they didn't give a shit about what the observers thought. They danced. And they would scream. They would throw boxes and confetti and would scream. AGGHGHGHGHGHGH!!!!!!!! God it made me feel like I was going to explode splattering energy and life all over those around me. Slapping the guy next to me in the face with the shrapnel of my soul. Fuck it was exciting. 

Then when I came home I received an email from a friend I met in Austin last year. Actually, I received an email from two separate friends I met in Austin last year at a retreat for young adults with cancer. 

One encouraged me to keep training for the triathlon. 

The other encouraged me to continue to be myself. 

It's great to hear that I have influence. It's just as good to know that I have found a support system in such a chaotic and violent world. But it is just as encouraging to believe that no matter how chaotic life can get I can always run. I can always dance. And I still have a voice. 

And with it I scream. 

I scream at all those who look on. 

Every observer. 

And I may not have the most eloquent of speeches or the most beautiful voice but you know....

I can still scream. And all I care to say is this:

I LOVE LIFE! 

I LOVE IT AND EVERYTHING ABOUT IT! 

EVERY DAY, 

EVERY MINUTE,

EVERY EXPERIENCE!

AGHGHGHGHGHGHGHHHH...... I LOVE MY LIFE!

And THANK YOU for living it with me.

It's hard to type with your fingers crossed.

No pictures, yet. But I have been running and riding just about everyday. Training for something - having a goal to reach is helping with the motivation. But, the amount of stress my body has been through.... well, only time will help fix that. It's very frustrating everytime I leave my house to run. I know I will only make it for a minute or so before I half to walk. Then I can start running again, then walk, then run.... fuck. I really hope I can make it. I want to at the very least get to the starting line with some hope that I can finish. Now, whether I finish or not - who cares. But I have to make it to that damn starting line.

Cady is here this week. Tonight we are going to see some crazy show. Details to follow. A friend bought us tickets to it.

Otherwise, today is just another day here in NY. Looking for a new place to live. Can't wait to get out of this one. Fingers croseed.

Though, it's hard to type with your fingers crossed.

Superfluke In Training

This year is a milestone year for me. 

Friday, March 13^th marks one year from the Allogeneic transplant that has added at least one more year to my life.

On April 2^nd 2004 I was diagnosed with Hodgkin’s lymphoma.  This year will be my fifth year of fighting for my life.

On July 26^th I will be competing in the NYC Triathlon.

I have joined Team in Training to help fight against, and find a cure for blood cancers. It is my goal to raise $2,600 for the Leukemia and Lymphoma Society. The LLS has been a beneficial resource, both financial and informational, for me since my diagnosis 5 years ago.

This year marks the Leukemia and Lymphoma Society’s 20^th year anniversary.

It is in the spirit of the 20^th anniversary that I am doing the $20 Challenge. I am asking you, my family, friends, and co-workers, to donate a minimum of $20 per person to help those affected by Leukemia, Lymphoma, and Myeloma. If you know me well enough then you, in some way, have been affected by Lymphoma.

My personal fight against cancer has been far from personal.  Many people, friends, family, co-workers and perfect strangers have supported me again and again and again. More so than a person should ever have to ask or expect. Yet, the support continues.

In the spirit of this selfless support I will be joined on July 26^th by Rebecca Black as we jump into the Hudson River on the banks of NYC to swim a mile, hop out and bike 25 miles through Manhattan and the Bronx, and finish up with a 6.2 mile run through Central Park.

I do not think I could finish this alone. So, I am including her name in this letter. She too is raising $2600 for the LLS. And helping her reaching her goal is as important as me finishing this race.

Despite the incredible coaching I will receive up until race day and the inspiration of someone racing in my honor, I, like many of my 400 fellow racers, have a personal cause to push me to the finish line. It would be my privilege to race in the honor of your friends, family, and loved ones as well. With your donation, please tell me the name of whom you would like to honor and their name will earn a place on my race jersey.

In addition to raising the $2600 for the Leukemia and Lymphoma Society I need to purchase a road bike for the race. Unfortunately, they are not cheap. Even the cheap ones are expensive.

If this was not daunting enough, I am currently going through treatment for my disease.  But I am as determined to finish this race as I am to beat this disease.

So how can you participate in the $20 Challenge? There are two ways to donate to this event.

Feel free to mail your donation directly to one of us. All checks and money orders must be made out to the Leukemia and Lymphoma Society.

JUSTIN SULLIVAN

2315 31st AVE #2

ASTORIA, NY 11106

REBECCA BLACK

82 CLINTON AVE, APT #1

BROOKLYN, NY 11205

Visit our race websites at:

Me: http://pages.teamintraining.org/nyc/nyctri09/superfluke 

Rebecca: http://pages.teamintraining.org/nyc/nyctri09/rblack1zrp

This is also a great way to keep track of our progress as it will be updated often to keep everyone up to date with how we are doing.

Your donation to LLS is 100% tax deductible!

If you are inspired to help me find a bike please send any checks to me directly. This, however, is not tax deductible. But greatly appreciated! Believe it not $5 will go a long way (if I can get enough people to donate $5 that is).

So, as I begin my training I would like to offer you a heartfelt THANK YOU for your financial and moral support for both of us.

If you’re in NYC - July 26^th is race day and your cheers at the finish line would be greatly appreciated!!!!

 

A loss is a loss. And it hurts.

Have you lost something you could not replace?

Have you ever had a day that a snow cone couldn't fix?

I've lived a lifetime filled with both.

I gave away the greatest gifts of life. I looked for things that did not exist in the most ridiculous of places. I always found good things I did not deserve. Yet, sought for something better. 

I have fought. To death I have fought. And now I am tired. The fight is not over but I am tired. 

I realize that I have missed out on all the great things life has given me. 

I have missed my daughters entire life. Every moment. 

I gave up my relationship with my fiance and for what? She was the single most amazing person I have ever met. Well, her and my daughter that is.

I threw it all away because for some reason I had convinced myself that there was something better out there. 

There isn't.

There never was. 

And now I know there never will be.

I am ok with making mistakes. It's just the loss of something I will never get back that crushes me. 

And with that crushing feeling in my heart I see how many people I have hurt with my actions. I can look back and see how many times I have caused another person to feel that crushing feeling in their heart.

This is not an apology.

This is not my final letter. (at least I hope not)

This is my confession.

I am weak.

I am tired.

And now I am alone.

My heart hurts. And there is nothing that can fix it.

I can't wait any faster.

Waiting. Lot's of stress and waiting. Waiting as fast as you can. I can't wait any faster.

Everything is moving so fast. Everything but my life. My life is in slow motion like I am floating in the ocean while the ship sinks.

The difference between drowning and staying above water is becoming unclear. I can't tell if I am going under or if this is still considered swimming. Either way there's no time to relax.

Holding on to the hope that this is going to get better wear's you thin. It makes it difficult to relax when there is so much to wait for. Not that it's coming anytime soon. But the waiting period is stressful. Why? I have no idea. But all of this waiting is killing me. Or teaching me something... hmmm, curious.

Though, this is New York Fucking City. And anything can happen.

It's been interesting so far.