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.