Just So You Know Me...

Vision: During my chronic attack, I went through each day with eyes that did not focus, with a feeling of them being glazed with petroleum jelly. Not to mention, each eye moved in their own direction, without cooperation. Now-a-days, my eyes get tired and sometimes out of sync, but is that MS or just being 40 years old?

Movement: Oh yeah buddy, sometimes I try to move my legs to the right and they go to the left. Details with my hands are just not the same anymore. I can't chop onions as fast as I once could, and my guitar playing has become more slower and more percussive. But - MS kinda gives me my own sound.

Oh, but the most obvious issue with movement is with my legs. Goodbye electric slide.

Sensory: Damn.. spasms suck. And one of my constant reminders that I've got something going on up in here.  My spasms keep me standing, because I hate to move from seated to that very first step when you stand up.

Bladder/Bowel: I have trouble convincing people that any place is the right place to relieve yourself. Now I know where most restrooms can be found, but on more than one occasion, I have pissed on a stop sign or during a red light.

A large Mountain Dew and a long road trip is like Russian roulette and a definite gamble.

Sexual Activity: Karma Sutra, yeah right? Hell, you're lucky if I show up for the foreplay. But it's no secret, I have two kids of my own and I am positive I was there in some menial fashion.

Fatigue: There isn't a word for how tired I am, when I all I did was wake up this morning. It is an overwhelming debilitating fatigue, not known by anyone but MS patients.

Cognition/Mood: Most likely I will forget most of what you tell me, and most likely I will get very pissed because you will insist I never told you.

Just So You Know...

Multiple Sclerosis Symptoms

 

***Sources: http://www.multiplesclerosis.com/us/treatment.php 

 & 

http://www.msactivesource.com/multiple-sclerosis-symptoms.xml

Everyone is different. So although there are many common MS symptoms, every person with MS experiences them differently. This may be because the location of damage in the central nervous system varies from person to person and affects how symptoms of multiple sclerosis appear.
If you have MS, it's important to keep following your treatment plan as prescribed, even if you aren't experiencing symptoms. That's because MS could be causing damage to your central nervous system even if your symptoms are not apparent.
Whenever you feel your multiple sclerosis symptoms are worsening, or anytime you have questions or concerns, it's important to talk to your doctor.

Vision

About 66% of people with MS experience blurred vision or eye pain caused by optic neuritis. Gradual improvement often occurs over several weeks. Some people with MS may experience double vision or other visual symptoms as well.

Movement

Many people with MS lose muscular strength in the arms and legs as the disease progresses. This is because multiple sclerosis often affects the nerve fibers that control muscle movement. Damage from MS can also result in poor balance or coordination.

Sensory

People with MS may sometimes feel numbness, pain, tingling, burning, or cold in parts of the body, including the face. MS may also cause extra tightness or tension, known as "spasticity," in the back and leg muscles.

Bladder/Bowel

Many people with multiple sclerosis develop trouble controlling the urge to urinate or will be unable to completely empty their bladder. They may also experience problems with bowel control or constipation.

Sexual Activity

Having multiple sclerosis can cause some people to have problems related to sexual activity. Men with multiple sclerosis may find it difficult to achieve or maintain an erection. For some women, MS often causes a loss of sexual sensitivity, pain during intercourse, an inability to achieve an orgasm, or a reduction in naturally produced lubrication.

Fatigue

Many people with MS experience fatigue or tiredness. Since fatigue is a natural part of life, it can be difficult to connect with MS at first. However, fatigue from MS can often last for prolonged periods when even minor activities can lead to exhaustion.

Cognition and Mood

MS can trigger mental symptoms such as memory lapses, slowed thinking, and difficulty concentrating.
Some people with multiple sclerosis experience periods of depression that can be directly linked to physical changes in the brain that multiple sclerosis causes. Depression may also be an emotional reaction to having the illness and learning to cope with the symptoms of MS and the challenges they represent.
If you are experiencing feelings or symptoms of depression or hopelessness, discuss them with your doctor because treatment for depression is available.


There are 4 types of MS. They're named according to the way the disease acts on the body over time.²

The 4 Types of MS

• Relapsing-Remitting MS (RRMS). This is the most common form of multiple sclerosis. About 85% of people with MS are initially diagnosed with RRMS. People with RRMS have temporary periods called relapses, flare-ups or exacerbations, when new symptoms appear²
• Secondary-Progressive MS (SPMS). In SPMS, symptoms worsen more steadily over time, with or without the occurrence of relapses and remissions. Most people who are diagnosed with RRMS will transition to SPMS at some point³
• Primary-Progressive MS (PPMS). This type of MS is not very common, occurring in about 10% of people with MS. PPMS is characterized by slowly worsening symptoms from the beginning, with no relapses or remissions²
• Progressive-Relapsing MS (PRMS). A rare form of MS (5%), PRMS is characterized by a steadily worsening disease state from the beginning, with acute relapses but no remissions, with or without recovery 

Swagger of a Cripple

Cripple- 1. a person or animal partially or totally unable to use one or more limbs.
2. anything that is impaired or flawed.
3. a wounded animal, usually shot by a hunter.

Okay, okay, okay..

I am a cripple, but I embrace it and I have my fun with it... so much fun. This is how it all developed:
The right side of my body is the weaker half, most likely I have lesions on the left side of my brain causing this anomaly. Several ailments combined has contributed to the way I walk.

1. Spasms in my thigh and calf
2. Foot drop
3. Laziness

I doubt that my limp could have been prevented, but possibly delayed if I had only done a few, simple exercises, but you can't unscramble scrambled eggs... so I roll with it.

I was told early on in my journey with MS to stretch and this simple act alone would offer limberness to my spastic muscles. I have exercised at times, but I was never dedicated to doing it faithfully. So if you throw foot drop, where by my foot does not allow appropriate clearance of the ground during my strides, and combined atrophy of muscles, intensifying weakness of my appendage....

Guess what you get?

Well it might sound sad, but it is kinda funny to watch. The severity of my condition I take responsibility for, but hey... I get some great jokes out of it. And so do my friends and family.

It's funny how most folks assume it is a bum knee issue. Depending on my schedule, I might leave it at that, nod and carry on with what I am doing. But if I have the time, I like to have a little fun. So my lame leg might become the injury of the USC match, where I refused to tap out.  Or I might have hurt it in a bungee jumping accident where it was stretched longer than my left leg.

The reality of my condition, it makes my strides shorter, and my speed unrushed. I must constantly scan the ground searching for even the smallest items my right leg might not have the ability to clear. And let's face it - I'm way too pretty and way too cool to use a walking cane.

Now if you combine a lame leg with my balance issues consistent with MS, what do you have? Well it's a controlled fall, that most people close to me are surprised when I actually don't fall. But honestly, I'd rather have the leg - the lame leg - than to have none at all.

True, I limp. True, I have trouble with hills and stairs. True, I could never kick a field goal. But what I do have is unique. It's totally mine.

Call it what you want.. I just try to keep it simple. Yeah, I'm pretty cool.. but this is the swagger of cripple.

You're putting what where??!!

So if you have MS, you should be aware of the various bladder issues by now. There is one particular time that is branded in mind, and to this day I feel uncomfortable speaking of it. So it's like this...

Had a bladder spasm. I noticed it first thing in the morning, when I woke up. I was patient, surely I will take care of it. I was determined. I slowly dripped water from the sink, I sat on the throne praying for a few drops. But now, it just wasn't happening.

Let's fast forward a few... It's been 19 hours and I have not pissed a drop. Out of fear I refused consumption of any liquid. So I surrendered to what I knew must be done. Catherization. 

So I tenderly asked my girlfriend at the time if she could drive me to the ER. I did not let on to what I knew would happen, there was no way to drive myself... I was suffering and in pain. The little small town hospital shined as bright as a Las Vegas hotel. I think I heard the hearts of a thousand angels as we parked at the entrance. Thank God there was not a wait, cause I think I am close to passing out now. Kinda drowning from the inside out. So I walk in and jump up on the cold exam table, as a doctor, a very large Nigerian fellow, with heavy hands and a thick accent, places one finger on my bladder and pushes. Hmmmm... I think my eyeballs popped out.

To which Dr. Zulu says, with a very deep accent, "Oh boy."
He offers me the easiest/hard decision ever - He says, "Mr. Milner, we need to catheterize you immediately. Now we have two nurses available, which one would you prefer?"

"We have Tom and we have Sally. "

So without hesitation, I said, "I want Tom." Because I saw Sally as I was walking in and she was smoking hot. So the way my mind processes it is this - Tom would not be any happier to be holding my penis, as I would if he held it. And well.. you see... if Sally performed the procedure, she would no longer be a dating option for me. Either way, I'm having a tube shoved in my pee- pee.

So Tom.. you're it dude.. and these are the ground rules:
You nor I will ever speak of this.
If you pass me on the street, do not under any circumstances look me in the eye.
Don't smile. Don't make me think you just winked.

Now I have white knuckled it, and I am positive the tube was as long and big around as a gardening hose. I try not to watch in the beginning. Finally he says, "Now we got to blow it up." I don't even want to know how ... just get it over with.

In some sort of weird foreplay, he asked me, "Are you ready?" Now imagine, I have not urinated in 20+ hours and what Tom, the male nurse, did with the flip of a switch, was facilitating the most intense orgasm I ever had. Sooo.. it's either the first time I was ever catheterized.. or the last time a man ever fondles me..

But if it ever happens again, I'm going to request Sally.

Me & My Nutshell

I'm sure that most people experience peaks and valleys in their life. They lose, they gain. I firmly believe that God endows each of us with a burden to overcome. Some of us, are given a few extras for the hell of it. I guess it's his way of saying, "So what are you going to do?" His desire is for us to overcome the burdens that should ultimately bring us closer to him.

So here are my burdens.. it has taken almost a lifetime to overcome or to even understand why I have them.

I got this thing about money. I like it. I love it. I spend it until it is gone.
I have this thing about alcohol and drugs. I like them.  I love them. I did them until they were gone.
I had this thing about very pretty girls. I like them. I love them. I did them until they are gone.

I have a burden - narcissism and manipulation. I am a very confused dude. Self centered, self seeking- got it also. So why I am writing this stuff? Mainly because the only constant in my life is Multiple Sclerosis. I do not like it. I do not love it. And it will NEVER leave me.

It has stuck with me throughout... and has been a constant companion majority of my life.

Of all the crap that this companion of mine and I have been through, it's loyal. WTF? I'm starting to get the message.

So why am I writing this? It has nothing to do with MS... well.. actually it does. I've had MS for 20 years, which is half of my life... which means it was present and in active in all the days of character flaws. Oh sweet.. sweet MS.

Ok.. I get it God. You have put me through all of these things to make a point. I've survived multiple divorces and disastrous relationships, deaths, addictions, financial ruins even... and I have done it while I was carrying MS on my back. Why? There must be a reason. I am now at the low point in my life.. I have lost everything at least twice, yet my buddy is right by my side.

It's kinda like Stephen King said, "You either come out the other side, or you don't."

Well I'm through the other side.. and OOOOH... I get it. I really get it. These were my burdens. But this is my reality.

You Could've Had All Of This!

Does a handicap like MS really affect cupid's arrow? Isn't it just what is inside that counts? Isn't it for better or for worse? Sickness or health?

Well.. if there was a sure fire way to make cupid a marksman and shoot straight, I would have found it.

I need to be honest... I am a habitually amorous, chronically toxic, relationship junkie.
I've used my disease for sympathy a few times, but rarely was I aware I had. I have attracted good girls and bad girls, old fashioned, contemporary, hippie chicks, ivy league, old & young, and of many nationalities, and all of them have said, "MS isn't an issue."

I have even dated girls that swear they did not notice certain things about me. (Yet a blind man can see.) Now, I don't want to say that MS is the straw that broke the camel's back, but I believe it created concerns.

I think this is how my date/relationships/marriages go. I'm so freakin' awesome, very pretty, a little tall, and I am funnier than any guy you have ever known. ;-) Not to mention, a well traveled chef and musician, who sits down to pee (that's a entire chapter.)

I think out of the box and try to set the bar at an unattainable height. But just wait until I drop the bomb on them, and it goes like this:

Me: I gotta tell you something.
Her: **her shoulder slumps** Okay.
Me: I have a chronic progressive disease that affects my central nervous system.
Her: **as she slumps and takes a deep breath** Okay.
Me: I've been diagnosed for a very long time now.
Her: **as she shuffles in her seat** Okay.
Me: But it ain't that bad. No big deal.
Her: *sigh of relief* I was wondering about that!

Well, her response to my last statement is what really mattered the most. She takes it as, "It's not like I'm going to be dating a cripple. Because you look so good."

(Which is common in MS.)

Although her mind is racing, due to not truly understanding what MS is, or maybe their mother has a friend that has been devastated by MS. Now I go into the spin mode - rallying all the celebrities with MS, and how we are all different, and pointing out the various types.

Then I layer on my various achievements in food and music, and I talk in circles and I talk randomly and avoiding any dialogue concerning the bomb I just dropped. It usually goes so well - they are falling for me, I am falling for them... it has got to become a storybook romance. But I am waiting for that light bulb moment in her eyes, and I know exactly when it happens, and I've been in marriages and relationships with so many girls that I can set a clock by their eyes.


I have gotten very good at hiding some obvious issues. At that moment, that awakening, that potential relationship killing moment happens the moment I decide to stand up and I begin to walk.

So I guess the girl must make a decision...

Can I handle all of this guy's "amazing" traits or can I not risk my own lifestyle and what I want in my life?

I don't know why.. cupid shoots who the hell he wants to. I know who I am... and I know my limits from MS. But I know my MS will never weaken my heart.. and that's what counts right?

The Walk

Ok I have this disease, it's chronic.. it's progressive and it could care less what I would like to do. It has it's own agenda...

Or does it?

Is it possible that I can just roll with the punches?

I did my research and listened to many folks, listened to doctors and such. But beyond the initial chronic attack... MS just ain't me.

I remember that after my diagnosis the confusion and fear I carried initially. What am I supposed to do? Buy a wheelchair and break it in? Am I supposed to forget all the goals of my life? Should I forget about fun.. love... adventure?! Gradually, after my diagnosis my body healed. Or did it? Or so I think. Gradually my mind settles and an old version of me returns.

It's old that one particular moment sticks out... it's the walk.
It's the first time I said NO to MS.

I had just left the pharmacy, I had just fallen in love with a pharmacy tech Shelley. But only from a distance. Kinda funny how the world turns. Afterwards I decided I must visit the grocery store across the street. At this point, I'm still driving, just not walking well. As I did each time, I looked for the closest abandoned buggy in the parking lot. I found that I could keep up the charades of a healthy, young man, by using the buggy as a walker and it did not expose my obvious weakness by using two walking canes.

But not today.
I guess somebody was actually doing their job and there wasn't a buggy to be found! So a decision had to be made....

BTW- for 18 years, I refused a handicap sticker. Those were for sick people... I just had MS? 

Back to the decision...
Tick Tock.. you just can't wait for a buggy to roll out to you. I can't go back to the pharmacy and stand googled eyed at the pharmacy tech that surely has not noticed me.

I just can't believe.. I'm kinda pissed off that somebody did their job and kept all the buggies in the store - WTF?

Don't they know that there are more uses for a buggy? And don't they know that I have MS and an obvious entitlement? Don't they know they are going to lose me as a customer? This massive/mega grocery store clearly hates handicap people... but they really, really hate me.

The only reason I'm there anyway is because of the pharmacy I chose. I chose the pharmacy because the pharmacy tech smiled and said hello.. and did not notice my canes... my limp.. not even my slurred speech. Don't they know, really they must, most likely I will fall walking into their grandiose grocery store. Don't they know?

How their callousness is going to destroy my dignity and self esteem? Hmmm..... BAM!
It hits me like a brick.

Let me keep it real for you.

The grocery doesn't care that I am only there because of the pharmacy. The pharmacy does not care that I am only there because of the tech. The tech does not care that I am only there because of my disease. MS does NOT give a rats a$$ what I feel or what I think... now.... dignity and self esteem are not tangible.

It's an internal process... and can only be developed by ourselves and no one can give it or take it away.

I got this! I get it. My life. My choices. My MS.. my choices. My misery.. my choice. My dignity.. my choice. My self esteem.. my choice. Mine. Mine. Mine.

So if you get anything, get this - it's very empowering. From that moment on, I have yet to walk into a store with a cane or a buggy, and yes, I have fallen, but you can't hear me hit the ground because I am laughing louder.

This was my walk and it was my choice. 

My MS, Not Yours

So I’ve written about the many stages of MS exacerbation and diagnosis. All that suffer with this disease might not be a carbon copy of one another, due to such wide variations of this disease. But at the five minutes prior to the doctor’s diagnosis, each of us are the exactly same.

We are tense, confused, and expecting the worst. We white knuckle the imminent words that shall be spoken.   Kind of like a slow motion train wreck. I’m sure each doctor has their own delivery for such news. Some sympathetic, but then some maybe sterile and authoritative. The words sink into some, very fast, yet others like an escalator. But we all have the same thought when we hear multiple sclerosis.

Many patients, “oh trust me you are a patient”, we interpret as MS being a Jerry’s kid disease or another well publish Hollywood disease.

But actually none of us have a freaking clue! But our human instinct is to dwell with the bad or horrible side first. We predict canes, wheelchairs, and maybe even nursing homes or at best a good looking home healthcare nurse. We assume the worst. Our understanding can be overwhelming. We begin to search for info as well as support groups and other patients, We dwell on what will happen. In no way I’m I a neurologist, psychiatrist or a Priest.  I’m in no way comparable to many. I’m quick to my opinion and I rarely create a plan”B”. I feel that a simple statement might have set the tone of my disease. I firmly believe solidified my mental state and my direction.

Now if you disagree with me, you probably didn’t try it. Remember, this is my MS , not yours. So here’s my secret, this is what might have shocked the doctor….. I said , are you ready…. “Thank You God!”. I can handle this. How can I complain of MS when so many children will never live half my years? “Thank You God I have MS and you spared my family. I can handle it.” Just Thank You God .Thank you for my MS , it has taken me twenty years to get to this point and say “I get it” , I just plain get it. Mark Twain wrote once “There are only two days that matter in a person’s life, The day he is born, and second the day he knows why” I have MS but MS does not have me.

For Serious?

.... So I guess my response was not as the doc expected.
I assume my nervous anticipation had thwarted to some degree by the cigarette I had just smoked and the restroom down the hall.  A highly inappropriate activity, but it was cold outside, I couldn't walk, blah, blah, blah.

Bottom line.. I could care less, what is the most that can happen... I'm dying.

So imagine this, the doc has probably administered the same diagnosis to hundreds of people. I'm sure he had refined his delivery and I am positive he expected great emotional despair -tears even.
As he gave a dramatic pause, he asked me to speak.

I guess that diagnosis, being very ambiguous, allowed my arrogance to fester out of control.

I am a 22 year old male, having just been offered a diagnosis that should have been life altering at that moment, and guess what I said?

 "Is that all you've got," rolled off my tongue first. I guess because my arrogance was bigger than I was. At this point I had the golden touch: everything I cooked was a culinary masterpiece, every song a grammy winner. I traveled, I made stacks of cash. I had fed movie stars, politicians.. your basic A list. I only dated the prettiest girls and did the best drugs.

**we will discuss that in its own post later**

So I asked the second question, " Am I going to die?"

At that moment I knew he was The Devil. He said with a very confusing tone, "No, no not at all. You will not because of it.. but you will die with it." As if ripping off a bandaid, he began the MS spin on me.

"MS is a chronic progressive disease affecting the central nervous system," At that very moment I had flash backs of my youth, raising money for bike-a-thons, walk-a-thons, for MS research. This was in the early 80s, I remember seeing people in the wheels chairs, and with crutches and canes.. I witnessed their obvious physical struggles... but I had no clue, it was just MS. Even with those memories, I was not yet humbled.

So the Dr. Devil proceeds to tell me I will have to make adjustments in my life. He suggests no longer working in the food industry, and stop playing music. "You will not be able to handle the heat or stress of either career, and oh.. we don't know what caused it, and there is not much you can do it for it but grow old with it."

Now you have to understand, this is the MS culture circa 1994.  (Though he did go into his talk about certain new medicines)

So let's recap a bit: By now, my great grandmother had died, my father had died, the girl I was in love with left me, my mother had recently recovered from breast cancer, and I was severely ill with bronchitis. I couldn't walk, I couldn't talk, and I could barely see in front of my face - all within months. While earlier in the year, I was living a wild lifestyle in Hawaii, I was cooking great food, playing great music, and making great memories.

So I'm in a full blown, arrogant, asshole state of mind at this point. I say to the doc, "Not me."

So now you have heard my story.. now I'm about to get real 

"It is what it is"

So what you gonna do? 

From This Day Forward

Traffic seemed to be very slow this warm, winter morning. The day had already begun a little different. It's December and I could care less about Christmas and what tomorrow would bring... I was focused on the hospital, the exam room and the possible answer of what I did not want to hear.

As I sat and waited in that room, the old me poured out. I refused to put that damned hospital gown on. I refused to sit on that cold table. And oh.. leave the freaking door wide open... I wanted to see the Devil coming.

I have walked the Earth about 8, 215 days, and I had been very blessed. I had many great experiences and adventures by now beyond my years. I was blessed with talents such as music and food, the ability to understand, as well as communicate. With the exception of my ongoing journey in a subculture, life was grand.

I might not have played life right, but more like Sinatra, "I did it my way." The word excess had become my middle name. Humility was never in my vocabulary, but more so arrogance was the banner I draped myself with. But now I have a man to see, a man to listen to, and I must shut my mouth, my stupid mouth.

At this very moment life had caught up with me.

This man I must listen to, was an older gentleman, a very put together fellow, with advanced medical education- that I would never forget.

I watched him walk down the hall towards me, almost in slow motion. Please remember.. I wanted to see the Devil coming, but that was my choice... alone. He did something to me to that day, that no doctor had ever done.

He stepped into the examination room and closed the door behind him.
He laid his hand on my shoulder and said, "Son, I'm so sorry."

Then with some sort of dramatic pause...
He phrased the following in a very tender, and compassionate tone,

"You have Multiple Sclerosis."

One More Again...

I'm still dying. But I'm going through the motions. It's time to return to the college for my test.
I had just limped through Izzy's funeral, and didn't know it would be 19 years before I felt that hollow again.

It looks like it will be an uncomfortable battery of tests, but it must be done. On this journey, my 69 year old mama has chosen to be my chauffeur and it looks like an overnight stay. A modest hotel was chosen. I felt shame that day, as she carried the luggage by herself as people stared in disgust at a healthy looking young man that allowed her to do so. They had no idea of my boggled state of health.

There wasn't time to get settled in the room, my destiny awaited.

My first step on the curb of the hospital seemed to reach out to me in one of my most miserable falls ever. Followed by a swarm of nurses and such, "Are you okay? Don't move." I had fallen backwards on the hard sidewalk. I stared at the clear blue sky and was prepared to float up or down.. whichever was decided for me. But I was tenderly taken care of by the medical staff. I refused all attempts of emergency room treatment, because I just wanted this over with.

MRI, spinal tap, visual tests... I had no idea they were not testing but merely confirming their hunch. The tests seemed to take all day and I was physically spent and overwhelmed with fatigue.

We made it back to the hotel, but we were required a return to the hospital in the morning. I had become tired and extremely frustrated. I'm walking at this point, but only with the aid of two canes. This night was very vivid in my memory, as it was the first time I ever remember my mama crying.

I didn't see her, but I felt her sobbing, late at night. She was crying for me and I felt the sorrow fill the room. Till this day, I wish I could block that sound from my memory.

A 6 am wake up call is literally a 6am wake call - but my potential diagnosis had kept me awake the entire night. Just three more hours... let's see what they have to say.

November 3, 1994 - Noon to 3pm

.... Since I was in a medical school, I was visited by a doctor in training. He was young, eager, but awkward in his examination, offering frivolous talk. As he performed a basic test of a neurology department, I should have been tipped off that I was being examined by a Neurologist.

I was dying... so why I am sitting with a Neurologist?

The student thanked me and assured he would return with the Chief Neurologist. As I waited, I tried desperately to read from magazines and pamphlets from the room, but I was without the ability to focus my eyes on such distractions. From outside the room, I hear the student doctor describing to someone my current state of health.

"He is a 22 year old male with symptoms consistent with some sort of neurological disturbance of the central nervous system."

In walked the Chief Neurologist and after the basic formalities, followed by a repeat of the prior exams, the doctor says, "Kelly, we need to do the following tests: MRI, Spinal Tap, blah.. blah.. blah.. etc. Unfortunately, they cannot be done today."

By him saying please return another day, I rationalized it as him saying I have a few more days to live. If that is the case.. I must go home now and bury my father.

I will be back. 

November 3, 1994 - 3am to 9am

.... I slowly walked towards Izzy's room. It's dark with a November chill in the air. In my heart I know what I had missed. As usual, I was unable to walk with the gait or stride of a normal man. Instead, I brace myself walking from wall to wall, chair to chair, and counter to counter. But I make it.

I'm standing over a lifeless body of a great man. I want to touch and hold him once again, but I can't. I haven't the strength nor the balance to do so. However I do manage to lay my kiss upon his forehead. I feel his warmth quickly leaving his body, and I want to cry out to God for one more year, day, moment with him.... but I can't.

I am dying.

And we will be together soon enough.

So, I am numb at this point and unable to feel my limbs. I balance myself against the bedpost and watch as the undertaker zips him up in the "death bag." I'm sure I will be handled in the same sterile and professional manner. Yet my own prognosis is waiting on me at 9am at the Medical College in Augusta, GA.

I haven't time for the sorrow of a loved one... I must start my own march to Hell.

I felt every bump and curve on the road of my three hour journey that morning. Luckily I was not driving my own death wagon. I don't remember talking that day.. but I am sure I did.

I can't imagine talking about anything beyond the obvious.

I really don't remember my approach to the hospital. I do, however, remember the sound of the sliding glass door. As I gazed at the distance to the elevator, at this time assistance was needed to walk... in the form of a wheel chair.

The next few moments are a rushed haze... but I do recall a nurse calling my name. In the blink of an eye, all of my vitals were drawn and I was in an exam room, waiting.

I guess I expected the doctor to gaze at me and offer a definite diagnosis... and I was prepared to accept any diagnosis, but in my heart, that diagnosis was only a death sentence.

November 3rd, 1994 - Midnight - 3am.

What the hell is wrong with me? Am I dying?
Please Lord, I've only had 22 years.

I'm excelling beyond my years as a chef, and there is way too much music left to play.
Too many places to go, and many things left to conquer.

Have I had a massive stroke?
Surely it must be, words are impossible to say, and my vision has become cloudy and hazed. I drop guitar picks and cigarettes... and I face plant myself every three steps. A long yawn is followed by three hours of napping.

Surely this is what will be my end... a slow decline... a long blink... if I had only known, I would have played the song different.

But alas, death does wait. I watch it, I stare... I feel its presence in the room.

Unsure of my fears.
All that I am positive of.. is that I am watching the last moments of possibly the only man I ever loved.

Without a doubt the biggest cheerleader of my talents, without having this man in my life I doubt my culinary direction would have been the same.

Thank you Izzy, I know where you are going to be... a few days ahead of me and I know you will prepare my place.

I felt I had ample time to grab a smoke, maybe take the edge of death off my weak shoulders.
If only I had known, he was dead when I stepped upon that nasty Marlboro butt.
Izzy is gone. My father has left... so he could prepare a place.

It's now my turn to die.. and I know exactly how he felt.

 ~Midnight to 3am... November 3rd.. 1994

Okay! .... So It's A Real Long Story

One Word - Why? But I am not using this word to preface the emotional wounds of a chronic progressive disease as many have. I have not nor will I ever say, "Why me?" or any other type of questioning words spoken from despair.. not at all.. just not my style.

Instead, "Why Not?!" Is my proclamation of choice.

So please steady your gait, and surrender to your fatigue. "So Why Not?" Okay.. so it's a real long story.. might even be a Lame Changer.