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Toast, Sweat, and Bumpah Stickahs: A Disabled Man's Quest to Find the Cure Alone, the Life He Has Led and Continues to Lead

Overview

A 45 year old man stricken by a rare disease that has taken the very spirit, the drive out of most men however Steve Brown has seen life from 'both sides ."

Memories of his past accomplishments and those of his handicapped father , brother, and sister, have lent a hand in the making of a determined spirit sought after by many.

Equipped with his guitar, a notebook, and a tank of gas, and all the peace he can ...

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Toast, Sweat, and Bumpah Stickahs: A disabled man's quest to find the cure alone, the life he has led and continues to lead

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Overview

A 45 year old man stricken by a rare disease that has taken the very spirit, the drive out of most men however Steve Brown has seen life from 'both sides ."

Memories of his past accomplishments and those of his handicapped father , brother, and sister, have lent a hand in the making of a determined spirit sought after by many.

Equipped with his guitar, a notebook, and a tank of gas, and all the peace he can muster, Steve invites all who dare to venture a slice of the fortitude he enjoys and will gladly pass on to others.

Steve's spirit, soul, and can do attitude is surely infectious and will enable any person to find peace in this topsy turvy world. Highly recommended you have a box of tissues handy.

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Product Details

  • ISBN-13: 9781449095796
  • Publisher: AuthorHouse
  • Publication date: 7/14/2010
  • Pages: 108
  • Product dimensions: 6.00 (w) x 9.00 (h) x 0.26 (d)

Table of Contents

Contents

Lay It to Rest....................xi
Live and learn....................xv
Chapter One Grammy's Tea....................1
Chapter Two Jeff....................5
Chapter Three Come On Home....................13
Chapter Four Stick with it, Queergirl....................17
Chapter Five Karma....................23
Chapter Six And the courage....................29
Chapter Seven Big Wheels and Hook....................35
Chapter Eight Bring 'Em Back....................41
Chapter Nine The Difference....................45
Chapter Ten Stop This Crazy Thing....................51
Chapter Eleven Not so different....................55
Chapter Twelve Edges....................59
Chapter Thirteen Counter Space and Strong Women....................61
Chapter Fourteen That's okay but thank you for asking....................65
Chapter Fifteen Disabled or Not-Just Push....................69
Chapter Sixteen Toast Sweat....................73
Chapter Seventeen The Answer....................75
Chapter Eighteen Just tell me ... or don't....................79
References....................83
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First Chapter

Toast, Sweat, and Bumpah Stickahs

A disabled man's quest to find the cure alone, the life he has led and continues to lead
By Steve Brown

AuthorHouse

Copyright © 2010 Steve Brown
All right reserved.

ISBN: 978-1-4490-9579-6


Chapter One

Grammy's Tea

My favorite lunch of all time has got to be peanut butter and jelly sandwiches with Ramen Instant Noodles. This is not some sort of endorsement, my palm isn't getting greased or anything. I like the creamy peanut butter versus the chunky stuff. Creamy won't tear the bread if you spread the PB first (which I do) and won't hurt your gums, which is an issue when you get slightly older (which I am). Then you apply grape jelly, Use a good amount but don't turn the white bread purple. Three sandwiches usually does the trick.

Ramen noodles, now who could forget that? Inexpensive noodles boiled in water for three minutes in two cups of water. Then you remove them from the heat and stir in the chicken flavored powder. Don't drain; the broth is the best part.

Usually I have those two items three or four times a week after my workout. It only changes slightly, like maybe instead of noodles on a chilly day, maybe some cream of broccoli or the ever popular New England clam chowder. But that's only once in a while. Chowder is expensive. Sometimes I end all with a bowl of applesauce or some yogurt. That's another reason why I like Ramen Noodles so much; the price. I'm pretty sure they were ungodly inexpensive when I was young, like 24 for $1.00 or something like that. They're first thing you purchased when taking off to the dorms or when you just get married.

I kind of feel like I live in a dorm now, disability does not pay a lot. I did move into a new place and when I started getting some groceries I spied a 12-pack of noodles. Memories started flooding my mind and that 12-pack found its way into my cart. Ramen Noodles will forever be on any and all my grocery lists for many years.

I was living with my parents and really still am. There is an apartment downstairs where my parents lived before they bought the house. After they bought the house they moved upstairs and rented the downstairs where they once lived. . Later on in life Dad didn't want to put up with the landlord stress so he made it an in-law apartment. My mothers mother lived there, rent -free of course, (God rest her soul) for 22 years, and instead of letting the pipes freeze, I moved in.

We all did some repairs (paint, new floors, and new heating system). It not bad at all. It's a small place but more than enough room for one person. Stove, refrigerator, required coffee maker, T.V, computer; I'm good to go. I'm getting to like this place more and more every day. It's almost like every piece of furniture, or anything there for that matter, has a story, a reason for being there. That's an important question for each and every disabled person or for those getting slightly older. Ask yourself this question before, during, and after you purchase an item or embark on some new adventure; Is it needed? What's the purpose? If you can't answer these questions honestly then whatever it is displays a waste of time in your life. K.I.S.S. method (keep it simple stupid), remember? Consider the following quote by Antoine de Saint-Exupery;

Perfection is achieved, not when there is nothing more to add, but when there is nothing left to take away.

Don't be adding things to your live in you yet to master what you have. I could always add to my apartment. A new desk, more lights, etc. but like everyone else I seek the perceived perfection that we were all brought up to grasp. Are we not all looking for some sort of our own perceived perfection in our own worlds? Keep it short and simple and perfection is a lot closer than you think.

Live within your means

How many times have we heard that? Maybe the question should be why haven't you? I see excess not needed everyday from so many people which tells me people have been hearing the old wives tale but not comprehending the meaning and putting the words to the test.

This financial crunch I am personally in and that of the world in general has caused me to look deep inside myself and question each and every purchase I may need to make.

Is it cheaper somewhere else? Yes and good quality as well, you just need to research. It really does not matter what it is, someone somewhere will bend over backwards to get you that product, after all are we not all salesmen looking for that big roll!

Is it necessary? Chances are it's not. An upgrade to a product you have now or a new product you may add means;

1. New problems, issues will arise.

2. Money that could easily have gone towards a bill is gone. forever

Chapter Two

Jeff

If there needs to be some sort of disability time line in your mind, the disease first started growling thru my father who crept into my brother then slithered my sisters and my way. Allow me to introduce you to my brother. He's 48 years old at this writing. His life was taken away at age 16 by a freak accident which caused a severe brain injury. His life went on physically, but he hit a speed bump.

I don't know a lot about the accident because it hurts me way to much too question my folks and my heart skips a few beats when I look into his eyes but here is what I do know. A friend and he were going swimming at a local rock quarry at age 16. It was his friend's first day with the license or some other significant time; I'm not sure what it was. They were coming home after the swim and were buzzed from some beer they had gotten. It was easy for an underage kid to get some alcohol then, just ask someone older and magically it appears. I'm older now and I think it takes almost an act of god now but I cannot be sure.

The two of them were in a blue panel van, actually more of a truck, which had large mirrors on the outside in front of the passenger and driver windows for visibility behind. Jeff's was arm resting on the passenger door with the window down when Tim either drove off the tar onto the soft shoulder or swerved to play around or miss an animal. The reason is immaterial. The mirror on the passenger side struck a telephone pole and struck Jeff in the temple.

I cannot tell you what the scene looked like but I can say Jeff was declared dead several times according to my father. I don't know if he was embellishing the facts slightly to bring the audience he was speaking to closer to the story. The number of times indicates to me the emergency medical technicians performed some type of reviving measures on him and the measures only took affect for a few minutes before he slipped back into the unknown.

I can remember seeing my Mom with my Grandmother on one side and my aunt on the other walking up the road from the mill about 1000 feet down. It was about 3:35 pm in July 1977. I remember the time because Mom got out of work at 3:30 and the last thing anyone wanted to do was to spend unneeded time in a brick building in 80 degree. I would sometimes go to the Mill steps and wait for her to come out.

My mothers' side of the family is very close. My aunt lived about 15 minutes away whereas my Grandmother lived in what is referred to as an in-law apartment just underneath our home. She lived here for about twenty two years when Grampy passed then moved in with my other aunt so care could be administered if needed. I couldn't meet my mother that day for reasons I cannot remember but I recall seeing them walking up the sidewalk and it sounded like uncontrollable laughter when it fact it was screaming and crying. I asked them what was so funny, my aunt told me the news between tears; Mom couldn't talk.

My aunts' husband worked as an EMT in the town where the accident occurred so he was first on the scene. He administered the first treatments to his nephew as he lay in a bloody mess in the passenger side of the van

Tim lived on the street we could see from our kitchen window and I can recall him running down his hill and up ours to his house. His family had recently moved from Virginia to Maine and he and Jeff became inseparable. I remember his mom walking to our house the first night they were in Maine and asking how to make peanut butter and jelly sandwiches. I even dated Tim's sister for a while and spent a good amount of time with Tim and his brothers. I never see any of the brothers anymore and wonder where they are. See Tim once in a while; he owns an ice cream store in town but never stops by and sees Jeff. One of the brothers still lives in town, owns a restaurant and recently opened up a car dealership in town, both are doing well.

My Dad used to say we paid more than enough money to buy a floor at the hospital Jeff was in, and for a while I believed him. It must cost an astronomical amount to build a wing on a hospital, and I'm sure we didn't pay that much although I'm sure it appeared that way to Dad.

Jeff was in a coma for approximately a month and I used to throw up before and after I saw him each time, which were two or three times per week. My parents were with him every day for hours on end, spending the night often. The nurses set up cots for them in the waiting room. I spent the night there a few times but not enough to count. I was only 13 years old so I really hadn't developed much of a relationship with Jeff. It was the '70s so people were trying new things out to better their own personal lives; not so much occurred in the form of relationships. People were trying to develop their own personalities for the decades to follow. Sadly, Jeff didn't have time to develop anything. So many people were caught up in that me generation thing sadly maybe myself included. Not a bad thing as you get older but it's vital to develop relationships with all you meet. I can distinctly remember Jeff lying in the hospital bed, eyes wide open, seeming like he was looking right through me. His hands were bound to the bed and wrapped in a thick mitten like material so he wouldn't pull his hoses out at night.

Remember the movie "E.T.?" I'm not saying this to be humorous so don't get me wrong; I just want you to have an accurate picture. Bones in his head were destroyed and there was a massive build-up of fluid. A shunt was placed in his head during surgery to relieve the pressure but it was continually getting clogged so with no bones in the head and excessive fluid buildup, he looked like E.T. He had to wear a batting helmet for a few years after he came out his coma and was released from the hospital. It was not one of those helmets with ear holes that you see today. John Olerud a baseball journeyman wore one when he was playing the field as well as hitting because of a brain aneurysm during his college days in Washington.

Ricky Henderson, who holds career steals record, holds the single-season record for stolen bases (130 in 1982) and is the only player in American League (AL) history to steal 100 bases in a season, having done so three times. His 1,406 career steals is 50% more than the previous record of 938 by Lou Brock; the 468-steal difference in these totals would place in the top 50 all-time. Henderson holds the all-time stolen base record for two separate franchises, the Oakland A's and New York Yankees, and was among the league's top ten base stealers in 21 different seasons. John and Ricky passed each other over the years and Ricky tells John how he played with a guy who had to wear a helmet the whole game. John simply looked him in the eye and said "That was me Ricky" Brain injury or not, helmet or not, he is still a human; he still wants and needs contacts. C'mon, Ricky!

That's kind of comical but brings up a good point. Whenever I go out or meet someone for the first time and we engage in conversation, the subject of disability rises. It does not come from my lips but from the other person's. C'mon' dudes! I'm trying to beat this and survive my way. Did you know when you talk about it you throw it back in my face? I see it every day; I really don't need to be reminded! I have never known a single person, and never will I guarantee, who could run fast enough to get away from himself. Some things, as regrettable as they can be, are part of us, our make up; we really don't need to be reminded.

Jeff ran into the same problem but slightly different. Remember he had just gotten out of the hospital and was venturing out so he was not in a wheelchair; he was walking around, interacting. People looked at him strangely and sometimes made comments from across the room, or street, never to his face. It would have made it much easier if they had come right up and asked then he could have dealt with it. It's hard to process remarks intellectually when the other party is running down the road.

During that time I could see the hurt, the anger, and resentment over his loss of youth in his eyes. It was then that I came to understand pain and suffering as a personal situation. Remember and never forget: Taking offense at a person's actions or remarks is a choice. I, for one, choose not to make that choice. Jeff was trying to be happy but disability takes many options away, and we don't have many choices as it is.

I tried to start a relationship with Jeff but it turned more into me being a guardian than anything else. I was not a guardian because I was asked or told to but because that is me. Roller-skating, soccer, movies, camping, concerts, hunting; I was beside him.

There are four things that you cannot recover in life and I have been a witness to all and still am:

1. The Stone..........after it is thrown

2. The Word..............after it's said,

3. The Occasion......after it's missed

4. The Time............after it's gone.

They all do one thing and one thing only and that's cause pain. I can't speak for you but I am tired of pain.

Build 'em always and forever

Relationships are so very important and vital at each and every level. Family or friends and if you put thought into it the friends category quickly turns into the family category so there is less to think about. Friends as family, what a concept.

It affected him so young, before we could develop a good relationship and for this I learned to react earlier. A lesson learned and one that will haunt me as unlearned at that time everyday. That is not to say we didn't have a relationship. That is to say with a little more effort and understanding it could easily have grown and grown

Each and every person in America has an obstacle, a disability. These are fine people and sometimes we do not know there is a handicap in the future. Build them soon and often.

Chapter Three

Come On Home

Initially, I was slightly anxious about being in the same apartment where my grandmother once lived. However that attitude left after a couple hours. I feel such a comfort here, such calmness, such karma-good vibes if you will. I have joked with my Gram a couple of times.

The place is decorated in a slightly older fashion and that's alright with me. There are no pinks, no roses and what not. I do have one pink item though: a high back chair with hardly any padding anywhere. It's just a pink cloth with wheat designs pulled over a wooden frame. It was my grandmothers' chair and I don't care if it's the only thing in this apartment. I would sit all day in the middle of a room as long I was in that chair. I remember when I came down stairs drunk and she was in that chair. I was about 14 and my parents went to Florida for some new Multiple Sclerosis treatments for my Dad.

The only ones home were my and my sister who was 16. She decided a party was in order and I decided it was time to start drinking. So I got up the nerve and asked my sister's boyfriend who made a beer run and scored me a six pack. I had never drank before so I thought I was the "the shit."

Well "the shit" was right on the money 'cause about 8:30 that night my stomach started doing belly flops. Somehow I ended up downstairs seeing Gram. I was sick and she made me go to bed on this tub in her kitchen, which was against the wall with pillows, blankets. It was really quite nice. She didn't use it just never got rid of it. I remember puking on her linoleum floor and she was watching our dog. She heard me puking and instead of embarrassing me she just smiled and sang;

"Oh Jedo, that Dog must have pee'd again."

(Continues...)



Excerpted from Toast, Sweat, and Bumpah Stickahs by Steve Brown Copyright © 2010 by Steve Brown. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.

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