Posts Tagged With: University of Mississippi

MS Monday

I will die WITH Multiple Sclerosis, not FROM Multiple Sclerosis!  This has been an epigram by which I have lived since being diagnosed with Relapsing Remitting Multiple Sclerosis in March 2000.  There are very few people in my life that KNOW the true effect this illness has had on my life and how I am able to live it.  I was a double major at Ole Miss (The University of Mississippi for international readers) studying Marketing and Real Estate.  I took the Brokers exam immediately after graduating, but not one day did my Real Estate Brokers License get put to use.  But the aspects of Marketing have followed me in every area of my life – and life with MS being one.

How do I use Marketing in relation to my MS you may ask?  Mainly, I TRY to present the best face!  Most people, other than my family have never seen the amount of TRUE down-time I have as a result of my MS.  They only see me when I am feeling good or decent anyway.  With Relapsing Remitting Multiple Sclerosis what happens is just as it sounds.  I have relapses and I have remissions.  This is not completely true in that one symptom has been CONSTANT for me for more than 5 years now.  The numbness someone feels in their leg when it goes to sleep, I have had the nonstop for more than 5 years In all of my right leg and from the knee down in my left leg.  This symptom sometimes becomes more severe and causes me to fall, trip, and limp.  These are the days few people see me.

My legs show the constant battle scares with the wars of the simple effort of walking.  MS also sometimes causes me dizziness, so add that to numb legs and sometimes just getting from the bed to the bathroom without falling takes effort!  Another of the most common symptoms is fatigue.  Fatigued, dizzy, combined with numb legs can create DAYS of anti-social behavior and hours of sleep even most teenagers fail to accomplish on any give free weekend.  The use of a cane is sometimes needed even inside the house, so when this trifecta of symptoms hits, I become a hermit.  When traveling, I general need the use of my cane just because the act of keeping a schedule, carrying luggage and the stress related to travel (thanks TSA – it is very easy for me to take off my shoes and but them back on with a line of people breathing heavy and muttering “HURRY UP!)  The photos represent marks from just the last month of “walking” or attempting to walk!

Also as the name implies, there are MULTIPLE symptoms during relapses usually.  I am familiar with most of the symptoms listed on the photo above at one point or another.  When one symptom passes another comes it seems.  But the beauty is I can market the pain as less painful than the reality or I smile even when it takes all I have to just not scream!  Since the relapses change and each person with the disease have different symptoms, MS is frequently called a designer disease.  This makes marketing my illness easy because as in this blog, I can only speak for myself and how MS affects my life!  Anyone that knows me knows I am a shameless self promoter! lol

There are few photos (if any) of me with or using my cane.  The one I use is kind of a combination of a crutch with a cane. It is not that I am ashamed of NEEDING walking assistance, but I am able to “market” myself as healthy and happy like most people like and want to see.  Simple activities take more from me and takes me more time to recoup from doing them.  Friends know I do not go out much any more because not only do I have to have the energy and ability to go, I pay for it usually having fatigue from a night out – even if I do not drink a thing!  Any friend that has had a “night out” with me… please see that as evidence you are worth the extra effort.  For those I have said no to, understand it is not you… most times it is just my body does not cooperate.  Most likely I used a different excuse than my MS, because actually – I like when people FORGET I have it… I WOULD LIKE To FORGET MYSELF!  But my body reminds me too often!

Facebook is a haven for me to post photos from times I am feeling good and that I actually do get out and do something fun.  I even at times market

Car shopping in Medellin

myself too well, with people thinking my MS presents little or few challenges in my life.  My idea is I better do it (whatever it may be) while I am feeling ok because the moment I am ABLE to do “it” may pass.  There are things I am willing to share in my blog that I do not share with REAL people in my life, because the people “in” my life, I am afraid of them feeling pity, sympathy or sorry for me.  Breaking precedence, look here…a photo of me WITH my cane (I have named it Pablo and the story why will come later)! If you are someone “in” my life and this blog reveals new information to you… you have fallen victim to my marketing and as I have learned from experience – I am damn good at marketing, especially marketing myself!  

I will post about my life with MS weekly (I hope)… follow my blog and feel free to donate! 😉


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It Is Cold In His Shadow

Glen Thomas Johnston

September 21, 1932 – March 22, 2011

I have learned that life in the shadow of my father after his death is even more difficult than when he was living.  Most people have idealized their father to the point of being an unrealistic character.  In my case it was real!  My Dad was a character but it the best way – everyone loved him.  I have NEVER heard anyone say ANYTHING bad about my father, where as I do not have to leave the house to find people that will speak ill of me.  My father was not perfect, and even people that did not agree with him still  respected him.  The year since his death, I have learned it will be impossible for me to have a fraction of the respect from family, friends, and community that he had – this frustrates me.

Next week I will begin therapy (AGAIN)!  Even before his death I had issues.  The more I am living at home and in this community, the more I see things I had felt were big accomplishments in my life have been undermined by some.  I miss Dad because he was proud of me and he let me know it.  Our family did not make a big deal about birthdays, they were usually a simple family meal but never a real party.  Now when I graduated from Ole Miss (University of Mississippi), he and Mom threw me a party!  I was the youngest child, but the first to graduate from college.  When I bought my Toyota 4-Runner, he would not have been happier for me if it were a Land Rover.  When I went to work for Sony, most people would, by his account, think I was hired as the President/CEO instead of lowly marketing guy.  When I bought my BMW convertible while living in Las Vegas, I hoped he would be impressed.  Even though he liked the car, what impressed him was the deal I got on it.  His disappointment was that I had bought a BMW that was 2 years old instead of the brand new Toyota Tacoma I had originally planned to buy.  When I moved to Colombia, an Ambassador’s welcome would have been too little in his eyes.  I was the first in the family to have a Passport and to get a stamp in it.  Now all of my family has Passports and stamps – other than Mom and I hope to change that soon.

The last few years have been very tough for me.  I finally had to surrender to my Multiple Sclerosis by taking disability.  This meant I had to say goodbye to Sony, goodbye to my BMW convertible, goodbye to my Las Vegas life and even pretty much all of my independence.  He had been diagnosed with Dementia. I had just moved from Bogota to Medellin, Colombia, when I got a phone call,

“If you want to see your Dad alive again you better get home as fast as you can.” my Mom said.  My sister’s were in Brazil.  We all rushed home as soon as we could.  

I walk in the hospital room where he was setting up, smiling as if nothing had happened and he said, “What are you doing here?  I thought you were in another country.”  

I replied jokingly, “I came home because I thought you were dying!”  

He said with a smile, “Not today!”

What I learned later was that the night I was flying home, he walked out of the hospital and security found him in his pajamas trying to get into his car.  Mom asked him where  was he trying to go.  He said, “To get Tommy.” (Tommy was my childhood nickname).  Even supposedly dying, he was thinking he needed to come get me.

My Dad not only loved me, he respected me.  He knew how much I struggled to get through college.  He occasionally would help me out with some money, but he knew how I worked to support myself and pay for my education.  I told him years later that I did not want him to leave me anything in his will because of all the help he gave me in college.  But even what I consider to be a grand gesture has been reduced to, “Thomas don’t want anything because his Dad paid for him to party at Ole Miss all those years.”  He is not here to set the record straight and stand up for me and say Thomas deserves respect because his finishing college was quite an accomplishment.  Even though he would have loved for me to have lived closer, he encouraged my dreams that required I live away.

I have given up any hope that people will have the same respect for me that my father had.  My own family can’t even muster simple respect for me and it hurts me, makes me angry, and helps fuel my desire to live away from here.  It is easier to leave and just start somewhere fresh.  People I worked with and customers at Sony had a great deal of respect for me (other that a bitch – I’ll just use her first name – Renee).  Friends that are from all over the world encourage me with my writing – even though it makes me no money, it makes me happy – and my family knows little or nothing of my writing.  My life of wanting and trying to have my family respect me fatigues me more than my MS.  I have severed my relationship with one of my nieces because of her blatant  DISrespect.

A year ago I had to say good bye to my father – and the to the respect he so easily gave me.  I miss my father!  He was ALWAYS in my corner.  Now I just find I am fighting with myself – and I am losing!  He and I did not agree on politics or religion, but he still respect me even though I aggravated him with discussion of these topics.   Maybe the therapist will help me get on a more positive path even with myself.  As RuPaul says, “If you don’t love yourself, how in the hell you gonna love somebody else?”  Maybe I have to learn to love myself in spite of how family and friend view me.  I will always be in his shadow and it disappoints me that I will never be half the man he was – even through my own eyes.

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