Posts Tagged With: MS

Finding THAT Connection

Sometimes most all of us would benefit from a good whack in the head to be reminded that we need more perspective in our lives! Lazaro 8The whack that just caught me upside my head was Lazaro Arbos and his American Idol audition. Lazaro, a 21 year-old ice cream scooper from Florida, has had a stutter since age 6 that has deeply impacted his life. I cannot imagine the courage it took for this brave young man, with a pretty severe stutter, to sit in front of television cameras and share his story. By the end of the audition he had tears of joy dripping from his chin – and so did I.

What an indomitable spirit he must have! His family immigrated to Florida from Cuba when he was 10 years-old Lazaro 16and his parents still speak Spanish. This would make me guess that he learned English well after the stuttering began and is now bilingual. Reared all of my live in the United States, at 40 I immigrated to Colombia, South America, and have had GREAT difficulty learning the local language of Spanish and I do not have a stutter to overcome. This young man has whacked me in the head reminding me I have to stop making excuses and learn Spanish or this inspirational moment will have been wasted.

At one point he says – things that “normal” people would think are so easy becomes so hard for him. I do not doubt that a lot of things are more Lazaro 7difficult for him, but I hope he misspoke using the term “normal” people in a way that could exclude him from being “normal”. My brief moment of sympathy was quickly followed by shock. This guy that just inspired not only me but thousands, does he feel he is not “normal”? Watching it the first time, I just wanted to give him a big hug. Watching it again, I wanted to shake him and say, “NEVER feel you are not ‘normal’!” But the confidence, courage, strength and intelligence he must posses to be bilingual while having a stutter and giving such a heartfelt performance convinces me, and I hope, he just misspoke.

I am such an easy target for a story like his because I have a real empathy for his situation. I had hearing difficulties as a lazaro 14child and out of a necessity created my own language. It was actually the official language of the little world I lived in – within my own little head. Lazaro’s mother Gisela says she often had to speak for him. My little world also had a translator, my older sister Darlene. People would listen to me jabber on and on (one thing that has not changed about me), not understanding a word, then ask Darlene, “What did he say?” Then she would relay my message perfectly in English. She was really the only one that truly understood me, having to also translate for Mom and Dad at times! At age five, I began to learn to speak English, the language of the people in my new world. I no longer had to live in my isolated world and began to FEEL more and more connected to this much bigger world outside my little head.

My translator Darlene & Me

My translator Darlene & Me

Acting as my translator, Darlene and I built a unique bond. Now we are adults, we often argue and fight. In thinking about this I have come to a realization why – I struggle wanting her to understand me to help translate who I am to a part of the world that does not understand me – my family! Our rifts are about religion, politics, as well as lifestyle. While she and my family remain very religious, conservative, and content; I, on the other hand lost my religion, tend to be liberal (I really think I am what they now call a Progressive), I am openly gay and live what I have convinced myself is an adventurous life given the constraints of a life dealing with limitations because of Multiple Sclerosis. So I try and hope for her to understand me so that she can translate so I can feel a connection with my family again. We do make real effort, but for now… I am still jabbering on and on in my own language and feel I NEED that ONE person that understands me to help the world (outside of my little head) understand me!

Seeing this video surprised me because I felt I was witnessing Lazaro’s moment, the moment he found “MUSIC” was his translator and people beyond his Lazarofamily could understand and connect with the world he has been isolated in for so long.  He found his Darlene!  I think he FEELS he has connected; others see, feel, and understand his world a little more. Not only is music his translator – he sees that it is an APPRECIATED talent. He has found some of the respect he has craved and deserves.  Feeling this connection has to be incredible! He has been actualized as a member of the bigger world. The talent that until now has been comfort in his isolated world can now be shared – WORLD, MEET LAZARO!

http://www.huffingtonpost.com/2013/01/18/american-idol-lazaro-arbo-stutter-video_n_2501225.html?ncid=webmail19

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Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

This Guy I Know

Helping Others

There is this guy I know who I admire and respect. This guy wants and tries to help others, to do and be good. This guy feels there are valuable life lessons that can be learned through his experiences in life. Lessons that people can learn from without HAVING to experience the tough situations personally as he has. He lives with blinders and forgets all that is good about himself because he sees little change with many of the people he encounters. I should mention – this guy I know has lost his religion and he lost it because of religious people!

This guy I know has family that loves him and that he loves, but it is a conditional love. He sees a not only deeply religious people of faith, but he also sees people who are deeply helping religionmisguided. Like many “Christians”, they read the Bible to find reinforcement for their prejudices and hatred.  They NEVER see the contradictions of the Bible.  This guy I know sees them use the Bible to justify and rationalize how they can “Stand Their Ground” for their beliefs while showing contempt for others beliefs. They find it difficult to live with things it says like “love thy enemy” (because as a gay man… I AM the enemy), “turn the other cheek” or to quote Jesus, “Love the Lord your God with all your heart and with all your soul and with all your mind. 38 

I would rather be a pet if I could be happy!

I would rather be a pet if I could be happy!

This is the first  and greatest commandment. 39 And the second is like it: Love your neighbor as yourself.”  (Matthew 22:37-39). But it is often translated as, love the Lord as YOU see Him and only how He is seen through YOUR eyes and anyone that sees God differently than you is a THREAT to your faith and their lifestyle condemns not only them, but also you if you are tolerant of it and they are not worth respect and love: love your neighbor as yourself (your own children are exempt – they are not a neighbor) only if he/she believes the same as you and otherwise it is ok to dismiss them and their “sinful lifestyles” because as a Christian you have to stand for what you believe in (or you’ll fall for anything – or some other catchy country music lyric). Oh yeah, I almost forgot…  AND eat Chick-fil-a as evidence that your Christianity is real.

This guy I know WORRIES! He has never actually known hunger, but worries – will he have enough money for food to hungry-childlast the month? During the last week of the month before payday… he does have to be creative sometimes. This guy I know tells me he has never felt true hunger but one reason his money is sometimes short, on payday he shares! Each month one friends gets treated to dinner out. Each month he buys rice and beans that he gives to a lady that helps care for homeless orphans and street kids. This guy I know, he DOES more Christ-like things than most Christians. He also exercises a faith few Christians could do by hoping (having faith) that he will have enough food to eat after doing a kind deed for a friend and even some poor strangers – orphans and children! I think Jesus would like that about this guy I know.

This guy I know lives with a pain from a disability that few could endure for a one day, much-less DAILY! But this physical helpingpain is nothing compared to the pain in his soul that comes from seeing injustice and the casual acceptance of these injustices. This guy sees selfish people fight to prevent others from having health care because in someway allowing health care for the poor may slightly affect them and how can they share something like healthcare… with poor people no less? This guy, if given the magic to do so, would cure cancer, AIDS or even heart disease because as inconvenient as his Multiple Sclerosis may be, people “die WITH MS not FROM MS” and he would rather help others that more urgently NEEDS help than he does. Didn’t Jesus say something about helping healing the sick?

This guy knows that suicide is now the leading cause of death from “injury”, beating out even car crashes. But helping gays trevor projectpeople still accept their “Biblican” ways to justify a blind eye as to how their callus attitudes toward others affects others. Teen bullying is epidemic. Being different is unacceptable and frightening to many. At 45, this guy I know is often brought to tears reading about a gay teen that has taken his/her life because it is more appropriate for family and friends to stand their ground and make these people feel worthless than to show kindness or to attempt to understand. There are bigger problems in the world than does this guy’s Mom love him, but for a teenager… rejection from a parent stings more than to an adult! For both teen and adult it HURTS!

If standing up for your beliefs hurts others… I think you should question your beliefs! I think Jesus would helping conditionalhelping soldierhave peacekeepers versus soldiers. When did Jesus advocate for militarization? Would He really? The attitude of “I condemn your lifestyle not you” is simply a lie! When I say “I am gay”, I am not using gay as a verb or adjective… I use it as a noun.  I AM a GAY. If you cannot not love the gay part of me and being gay is WHO I AM… then your love is not UNconditional! This guy feels a loneliness because he now knows he has to sever ties with his family for him to feel self worth again. But this guy knows he is not alone there are thousands of others whose family cannot accept that they are gay and we do know – “it gets better”!  

Maybe this guy I know can now begin to remove the blinders and see what is admirable within himself and find respect for himself again, not letting so called Christians rob him of his integrity because they use their religion to make him feel like less of a person. Even Bible Saysthough he takes no pleasure in calling out faults of those that claim to love him. This guy’s mother feels that even meeting or being friendly with her son’s boyfriend is surrendering her faith, giving up her beliefs! She does not see the fallacy of this thought just like she can not rationally interpret scripture. Being gay is worthy of condemnation and is an abomination, but she loves shrimp, wears jeans sometimes, eats bacon enough she should have concern for he salvation and owns some poly/cotton blends, yet she fails to see those things for the abominations the Bible says they are. This guy sees it as hypocrisy – USE the Bible to justify the things in life you do not like so you can feel a just and righteous foundation for your bigotry! But most of all, this guy I know is confident that the God he believes in and even Jesus, someone he feels Christians misrepresent, would not even care that this guy I know is gay.

HelpingOthersThis guy I know uses writing as his therapy and has had over 33.000 people read his blog. Many have interacted with encouraging words but yet NONE have hit his paypal donate button.  This guy is happy others enjoy and are encouraged by his words, but he would FEEL more encouragement if ANYONE helped support his efforts financially!  😉 If you click on MY paypal link… I will be sure “this guy I know” gets the money! lol This is the only way “this guy” feels he can reach out for help!  As much as he likes to help others… he is taking a break to take care of himself for a while. I need to find this guy so I can tell him I love, admire and respect him!  

Below, Jillian Jensen sings Jessie J’s “Who You Are”… This guy asks himself often this very question and he relates to her pain!

I stare at my reflection in the mirror:
“Why am I doing this to myself?”
Losing my mind on a tiny error,
I nearly left the real me on the shelf.
No, no, no, no, no…Don’t lose who you are in the blur of the stars!
Seeing is deceiving, dreaming is believing,
It’s okay not to be okay.
Sometimes it’s hard to follow your heart.
Tears don’t mean you’re losing, everybody’s bruising,
Just be true to who you are!
(who you are [x11])
Brushing my hair, do I look perfect?
I forgot what to do to fit the mold, yeah!
The more I try the less it’s working, yeah
‘Cause everything inside me screams
No, no, no, no, no…Don’t lose who you are in the blur of the stars!
Seeing is deceiving, dreaming is believing,
It’s okay not to be okay.
Sometimes it’s hard to follow your heart.
But tears don’t mean you’re losing, everybody’s bruising,
There’s nothing wrong with who you are!Yes, no’s, egos, fake shows, like WHOA!
Just go, and leave me alone!
Real talk, real life, good love, goodnight,
With a smile, that’s my home!
That’s my home, no…No, no, no, no, no…
Don’t lose who you are in the blur of the stars!
Seeing is deceiving, dreaming is believing,
It’s okay not to be okay…
Sometimes it’s hard to follow your heart.
Tears don’t mean you’re losing, everybody’s bruising,
Just be true to who you are!
Yeah yeah yeah

 helping trevor project

helping trevor-project

helping gay teens

I could never hear this too much!  But it is too much to ask!

I could never hear this too much! But it is too much to ask!

http://www.huffingtonpost.com/2012/09/24/suicide-leading-cause-death-us_n_1909772.html

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Optimistically Pessimistic or Just a Realist?

For many, they would see that a person is either an optimist or a pessimist but in true fashion, I even complicate these descriptions when I self diagnose.  I see myself as optimistically pessimistic!  What is my rationale?  I enter sweepstakes and buy lotto thinking I have as much a chance to win as anyone else – Optimist.  But I know deep down I my chances to win are very slim – Pessimist.  But the more choice word I guess should be – Realist.  Living with Multiple Sclerosis also feeds this concept. I know I have good days – optimist, I also know that the price of realizing the good days is experiencing the bad ones – pessimist, but I know I have to make the best of THIS day – realist.

Because of my M.S. and spending so much time fatigued and stuck in the bed, I began entering online sweepstakes.  I have won a few nice items: an Apple iPad, a $300 Best Buy Gift card, a $100 Overstock.com Gift card, several iTunes gift cards and a dozen or so smaller prizes.  But as you see, I  have not won a big cash prize, a car, TV, or trip; but I continue entering the sweeps.  I enter the sweeps just to have something to do and on bad days I sometimes do not even enter one.  I win something sometimes – optimist, I do not win enough for the amount I of time I spend entering sweeps – pessimist, I have SOMETHING to do to pass some time – realist.  

My M.S. is like this also, when I have a good day, I tend to do too much and overexert myself.  The good day, I get to have SOME fun – optimist, the bad days I may be in great pain and stuck in bed – pessimist, when I AM stuck in bed I can remember the good days – realist.  A common saying in the M.S. community is, “I have M.S. but M.S. doesn’t have me” – optimistic.  Reality, there are days that my M.S. does have me – pessimistic.  Few people know truly how my M.S. complicates my life.  I try only to let people see the optimistic side, the healthy side of my life I do get to enjoy.  Since I do tend to project the image as someone healthy, I miss out on truly helping others understand the impact M.S. has on my life.

Staying in Medellin, Colombia as much as I do not only helps with my M.S., it also helps me mentally!  Medellin is known as “The City of Eternal Spring”.  The milder climate does help in that I do have fewer relapses and often when I do have a relapse, it may not be as severe.  This is a big plus!  The biggest benefit is that I am able to live independently!  Living totally on my disability income in the U.S. is impossible for me, but here in Medellin, I can afford to have my own apartment and feed myself.  There is little money left for other things, but the advantage of feeling independent out-weighs the disadvantages.  The downside of this independent life means I also have to sacrifice seeing my family because the M.S. limits my traveling and the money for flying is also VERY limiting.

Friends usually see me as complicated and difficult.  They do not realize what I have to do in order to “feel” like meeting for a dinner or beer – it takes careful planning for me!  I once wrote how I feel like Sid the Sloth from the Ice Age movies (https://thomasajohnston.com/2011/03/05/trapped-in-an-ice-age/).  I feel most of my friends simply tolerate me, but like Sid’s herd, my friends do down deep care about me.  I use the expression “Colombian time” in Medellin because Colombians just do not seem too concerned about schedules, appointments and timing.  This complicates my being part of a herd in Colombia because even when I explain how I NEED to keep schedules because of my health issues, the relaxed attitude of Colombians is more important to them than my schedule.  I rest, I medicate based on being somewhere at a certain time and then they see me as inflexible when they say we have changed the plans or times and just think I have the ability to adapt that easily.  Like Sid… I am sometimes abandoned.

Then again, I find it easy to thin my herd or “clean out the friend closet” sometimes!  Some people make it easy!  As I am sure I make it easy for some to reclassify me as a former friend.  I have become a self imposed hermit and actually find I enjoy being alone.  Limiting my time with friends helps me keep friends!  lol  I am very happy for the few friends I do have in my herd – Optimist.  I do wish making new friends was not so difficult for me – Pessimist.  This desire drives me to improve myself and educate even friends of how M.S. keeps me Optimistically Pessimistic or just a realist?

Categories: Colombia, Life, Medellin | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

The Weather Factor & Multiple Sclerosis

Sometimes I am even able to act like a tourist! 😉

I am not able to speak for everyone with Multiple Sclerosis, but in my case, weather is a major contributor to relapses with my MS.  Not that cold is better than hot or hot better than cold or even the fluctuations of the drastic changes in temperature on Spring and Autumn days in the South.  There are days we run the air-conditioner in the day and heat is on at night.  These extremes and fluctuations where brutal to my MS symptoms.  

Now I am living in Medellin, Colombia, South America.  Many ask why an American would leave the U.S. to live in Colombia?  The simple answer – weather!  The nickname for Medellin is The City of Eternal Spring.  For someone with MS like me… the climate is ideal.  With fewer days of really hot or really cold and the fluctuations of a mild Spring day back home (1.5 hours North of New Orleans), I notice fewer relapses while in Medellin.  By no means does it mean they go away, but the severity of relapses is reduced as well as the frequency.  Regardless of climate, fatigue remains my chief adversary!  Even here I fool myself into believing I am able to do more than I actually am capable of.

With a new place to live comes the obvious challenges like finding a place to live, learning a new neighborhood and making new friends.  Moving to a new country adds even more challenges like language and immigration issues.  Fortunately for me, Colombia actually has a special visa to encourage people to retire in Colombia – a pensionado visa.  This visa is granted to anyone with a pension (Social Security is considered a pension).  Any Colombian Consulate or Embassy in the U.S. can give you the step by step process for getting this visa.  The downsides are: it is a government agency so understand going into it that foreign governments are as bureaucratic as ANY government and the visa needs to be renewed annually. This process is always subject to change especially and now more so because the Colombian Free Trade Agreement is being implemented with the United States of America (which MAY even simplify thing more – cross my fingers).  I cannot (will not) discuss the political issues associated with the Free Trade Agreement until I learn and know more about it.

Making new friends in Colombia is EASY – they are a welcoming people!  But for me, there is the added obstacle to educate friends about how my MS affects me.  One main reason is because Multiple Sclerosis is much less common in South America in general versus North America.  Just as the climate seems to reduce my relapses and symptoms, it also reduces seems to reduce how the local population is affected.  The photo shows, the further south one goes, the fewer MS diagnoses.  Since there are fewer people diagnosed with MS, it is even more important to try to educate my friends how this illness affects me.  My experience has been overwhelmingly supportive!   Just like in the U.S.A., there are many misconceptions, but once I explain, most are understanding AND supportive.

Medellin may not be the best solution for ALL people with MS and I cannot even advocate

Maybe a benefit of a healthier lifestyle will be weight loss! 😀

ANY one else would find it as beneficial as I do, but it could be an option for some.  Medellin is now ranked the #1 city in Colombia (link below) “According to this year’s study, Medellin made massive improvements in several areas including environmental initiatives, where it jumped three places to rank fifth. In human capital rankings, which consider health, education and employment opportunities, Medellin came in second place, moving up one spot. “We will strengthen(…) the goal of furthering the education and training of our human talent to achieve equity and remove inequalities,” assured Medellin’s Mayor Anibal Gaviria.”  I always mention Colombia’s tourism campaign slogan Colombia: the only risk is wanting to stay and my slogan for Colombia would be: Colombia: it is not what you think… it is so much MORE (maybe I should trademark that? lol)!

*I am not a medical expert of any kind and this article only reflects my personal opinions and experiences!

http://colombiareports.com/colombia-news/news/25140-medellin-ranked-colombias-best-city.html

Categories: Colombia, Life, Medellin | Tags: , , , , , , , , , , , , , | Leave a comment

Viva Colombia

I am often asked why I like Colombia, South America so much.  My response is, “Colombia and I share something – we are both misunderstood and quite often misrepresented!”  I am quite happy when people realize that in spite of my progressive politics, unique views about religion, and gay activism – I am still quite a nice guy.  The same is true of Colombia – in spite of the exaggerations of Colombian life portrayed in Hollywood movies, Colombia is quite a nice country!  Seeing beyond stereotypes opens the mind to so many new possibilities!  Also please notice… the country Colombia is spelled with an “o” not an “u” (Columbia).

Like me, Colombia is much more progressive than many realize – sorry, I mean Colombia is more progressive… anyone that reads my blog already knows I am Progressive!    Colombia’s government is a Republic with Democratic elections and three branches of government including Executive, Legislative and Judicial (that should sound familiar to Americans).  The FARC have basically been neutered and the days of drug cartels controlling the country are now mythology.  The drug lords, guerrillas, and kidnappings are great for the movies, but not a part of the typical Colombians daily life.  

I have lived in both of Colombia’s largest cities, Bogota and Medellin.  My opinion is that Bogota is more of a

Medellin, Colombia, South America

metropolitan lifestyle similar to living in New York or San Francisco and Medellin a little more like living in Los Angeles with San Diego weather.  Bogota has the larger population with just over 8 million to Medellin’s 3.75 million.  Medellin’s climate is more ideal with a very pleasant 65 – 80 degrees Fahrenheit (18 – 27 Celsius)  year round, compared to the cooler climate of Bogota ranging from 50-75 Fahrenheit (10 – 24 Celsius).  I have great friends in both cities but I feel the weather in Medellin is more conducive for Multiple Sclerosis, so now Medellin is home!

Colombia’s tourism campaign is: “Colombia, the only risk is wanting to stay”.  This proved to be very true for me!  With an American Passport, 60 day tourist visits and there are other options for longer stays.  I wanted to stay longer and found the way for me to get a resident visa called a pensionado visa ( basically a retiree’s visa to encourage people to retire in Colombia) .  I do have to renew my visa annually, but that is ok with me.  Colombia could be an option for many more, especially for the benefits of the climate for people with illnesses like Multiple Sclerosis.  I invite people outside Colombia to come experience the reality of this beautiful country with beautiful, warm, welcoming people and forget what television and movies portray about Colombia!  This is a country you should experience for yourself!

*** I will be posting weekly (maybe more) about life in Colombia – follow this blog and let’s share the experiences of this wonderful culture!

Categories: Bogota, Colombia, Life, Medellin, Travel | Tags: , , , , , , , , , , , , , , , , , | 1 Comment

OUR President

I had to post this because I almost forgot what a REAL President and First Lady look like….

The photo to the left is a post I recently saw on facebook!  I shot off this post on facebook as my status, “I saw a post earlier today that was a photo of FORMER President George W. and Laura Bush with a caption that read, “I had to post this because I almost forgot what a REAL President and First Lady look like….”! How DISRESPECTFUL! I am sorry America… but PRESIDENT Barack Obama and FIRST LADY Michelle Obama are REAL and he is PRESIDENT! Even if you do not agree with their divisive politics that help the poor have insurance and teach children about nutrition and exercise… at least have respect that they ARE the PRESIDENT and First Lady of the United States of America!! Even when the person you did not vote for wins….he (or she) is still winner and comments like above just show you are a SORE LOSER!”  

I was ashamed and embarrassed for the person that posted it for so freely being disrespectful to OUR current President and First Lady, Barack and Michelle Obama!  True, not all Americans love the current President and some may even miss FORMER President George W. and Laura Bush.  But for someone to infer that President Obama and First Lady Michelle Obama are not REAL and deserving of our respect is a VERY SAD commentary of discourse in America.  To disagree with the politics of the President is completely normal if you have differing views, but the growing acceptance to disrespect the office of President is alarming to me.

I did not want to mention it in the very first paragraph, but now I am one sentence into my third paragraph I will say it – I think it may, in part, be because he is black!  But now I said it I will not dwell on it, but it does deserve mentioning.  I find ANY white woman pointing in the face of a black man to appear racist to me.  To see a sitting governor do it to a sitting President!  WOW!  I am not so naive as to think Obama is the first President to be disrespected, but to mention race one more time…. as a society, maybe this is a good place to start toning down the hatred, rhetoric, hyperbole – even if it is so we do not appear to be racist.  Political discourse will ALWAYS be a part of politics, but it is possible to disagree without being so blatantly RUDE!  

The following is a reply I recieved about my post, “We’ll just have to ‘Agree to Disagree’ on your post. Obama is NOT my president, and Michele will never be my ‘First Lady’. Disrespectful or not, what is disrespectful, in my opinion, is how fast Obama’s administration has managed to degrade and destroy what has taken millions of working-class families decades to accumulate. Perpetuating the ‘handout mentality’ of low and poverty-level Americans is like ‘keeping them in chains’, they might as well call it ‘Slavery’.”  All I could say to myself was WHAT THE FUCK?  I want to respect her opinion, but I am at a complete loss to know what she THINKS Obama has done?  It is rhetoric that has NO fact to support it!

Yes… we (she and I) DO have to agree to disagree! I in NO way have seen him perpetuate ANY such policy – namely because Congress has done NOTHING to support ANY of his polices since ObamaCare.  Even ObamaCare is not so much about entitlement for the poor (the poor already had Medicaid) but for people like me with pre-existing conditions like Multiple Sclerosis! I had no health insurance for 2

Our President is ALSO a loving husband and father!

years and so YES, I supported ObamaCare… because now I have insurance and I am getting treatment again. But I feel conservatives only see he is a Democrat and does not understand that ObamaCare was built on Republican Bob Dole’s health plan that was the basis for Romney as a Republican Governor to also use.  Even in an effort to gain bipartisan support, they tried to demonize the program that in Romney’s own suggested alternative (as Presidential candidate) to his own plan established in Massachusetts wants to keep the KEY provisions of ObamaCare! They FIGHT it just because it is a Democrat’s plan.  But even as a Democrat… I never said or acted as if Bush were not MY President, because at the end of the day we are all still Americans and that even includes President Obama and First Lady Michelle Obama!  As all past Presidents, I feel they have represented America with ALL the best intentions that what they did (do) was (is) good for our country!  I feel both the President and First Lady have represented America very well, with grace, poise and  dignity – they are a GREAT First Family!

Repeating LIES does not = Truth!

I have a disdain for A LOT of the Tea Party’s divisive politics and how they feel cooperation and compromise are an evil part of politics.  Even

Hyperbole is BAD for the Nation and BAD for your soul!!

as a CHILD I was taught to share and play nice with others!  A concept that escapes most Tea Party idealist.  The Tea Partiers seem to ALWAYS go back to our “Christian” fore-fathers as their point of reference.  They want to legislate their Christian beliefs in a nation founded on Christianity – NOT FREEDOM!  The founders of our nation left England because the KING was basically “legislating” his idea of Christian beliefs .  The founders intentionally left religion out of our constitution because they knew religion and government were separate entities.  As a gay man in America, I am astonished at the idea that Christians (not all… but A LOT) in some way feel that if I am given equal rights and benefits of marriage, it in some way  effects their marriage.  They feel they have a responsibility to remove freedom in our nation and enact laws based on their beliefs.

MY Presidents!

Bush was MY President, Obama is MY president and even if Romney wins he will be MY President, because I am proud to be an AMERICAN more so than a Democrat (or even a Republican as I was most of my life)! People need to unite, love, support and encourage each other – not say things like Obama is NOT MY President… unless you have left the USA and surrendered  your Passport & citizenship- He is YOUR President…. just maybe not who you voted for! 

Categories: Political | Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

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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This May Be A Revolution!! Occupy Wall Street

Occupy Wall Street is becoming an international movement that for some, they will see it as a revolution.  I say, Viva la Revolución!  There are many opinions as to what the Occupy Wall Street movement actually means, but here is how I see it.  Americans are paying too much for the consequences of a corrupt Wall Street and the allegiance to the dollar that controls the elected officials in the U.S. Government.  Since Wall Street controls so much of our nations wealth, our elected officials have sold out to only representing the people with money that contribute to their campaigns.  By some reports, the top 1% wealthiest Americans control more than 42% of all assets in America and take in 1/4 of ALL income annually in the U.S.  This leaves 99% of Americans with little or no voice in how our government controls our economy, while corporate America is able is skip a lot , if not all, of their taxes and it leave 99% also paying for policies that have hurt them and continue to hurt them economically.  I am the 99% and everyone I know is the 99%.

I have tried for more than a year to get my member of the House of Representative and two Senator’s offices to listen to my issue.  The E.R.I.S.A. law (Employees Retirement Income Security Act of 1974) allows for the mistreatment of clients of insurance companies.  The insurance company I am FIGHTING with earned $1,280,000,000 for 2010.  That same year the very same insurance company I am FIGHTING to get less than $900/month in disability income insurance payments from, paid it’s retiring Chairman/CEO $110,000,000 in 2010 – plus he also gets a “healthy” pension plan.  That amount did include his $18,000,000 executive compensation package for 2009.  The ex-Chairman/CEO served those posts for 10 years;  I lived and worked with my MS for 8 years before NEEDING the benefits I PAID for then being denied …. like there had been a cure for Multiple Sclerosis and there is a simple fix MS symptoms now.  E.R.I.S.A. is a federal law and needs to be changed, but I cannot get any of my elected officials (or their staffs) to give me the time to talk about this.  But I sure bet Mr. ex-CEO with a $110 million plus 2010 income for 20o9 would get time and maybe even a personal sit-down with his elected officials!

It takes so much to get the attention of leaders in our government unless you have a fleet of lobbyist or contribute heavily to their campaigns!  So, now this movement is beginning to get the attention of many and I hope it still grows stronger. Maybe it will get the attention of the ones that can actually affect change here in the U.S. and the world and make things more fair for the less fortunate.  There comes a point when being ignored becomes more of a problem than a temporary solution, now the backlash of being ignored so long may actually make this group of 99% impossible to ignore.

I feel great now there is a movement of people that think like me that says we, the 99%, cannot be ignored.  BUT we in the United States are not alone, 951 cities in 82 countries had events planned not only to show support, but to affect change for them as well.  If the wealthy were more socially conscious, the 99% would not be so outraged.  Let’s be honest, the top 53% of the 99% does not care so much because they feel a little uncomfortable or maybe inconvenienced with this economic downturn, so it is really just us bottom 47%  that have gone form discomfort to pain – we are HURTING in this economy!  I do not even have guesses for what the numbers for the rest of the world could be, but on October 15, 2010, more than 100,000 gathered in Rome (where sadly things turned violent) and 60,000 people joined demonstrations in Madrid’s Puerta del Sol and 20,000 marched through Seville making it 80,000 (or more) total in Spain.


Billionaire George Soros says, “The rich hurt their own long term interests by their opposition to paying more taxes.” While Warren Buffett (also a billionaire) has been saying for a while that the U.S. tax structure is unfair for middle and low income taxpayers and has said he feels he and billionaires like him should pay more in taxes.  But such public figures that are also billionaires like Oprah Winfrey and Steven Spielberg have remained quite.  How much is enough for these people?  They all “give” to charities but they are their own charitable foundations that also provide BIG tax benefits to protect the obscene amounts they do keep for themselves. 

What is another reason the less fortunate are so angry?  Maybe while so many in the U.S. are losing their homes through foreclosuree we see this numbnuts billionaire, David Tepper who buys a house for $43,500,000 from former Sen./Gov. Jon Corzine.  Ok, I admit a billionaire buying an almost $50 million house may not be a big deal, but he bought it to tear it down to build what he wanted on the piece of land in Sagaponack, Long Island, New York.  This is why we have little sympathy for their having to tighten their belts to pay more in taxes.  Then there is this bonehead that is actually IN Congress, Rep. John Fleming (R) (I do not think I needed to identify him as a Republican) that complains that with $600,000 left after the expenses are paid from $6,300,000 in revenue, it is tough to get by and that after feeding his family he only has $400,000 left!!  LOL (I know it is poor taste to add a “LOL” in an article, but I do laugh out loud every time I watch that video of this man that is IN Congress and has this kind of attitude.  I will go volunteer for ANYONE that runs against him for re-election!  Video is posted below).  By this statement he spends $200,000 a year “feeding his family”…. so I would say his family is eating VERY good!

But just as the Occupy Wall Street movement has now expanded so has the reasons.  Just as we have arrogant billionaires that say and do stupid things, this is the most extravagant, asininething I have seen.  In India, yes the same India as from the movie Slumdog Millionaire comes Mukesh Ambani, India’s richest man.  He builds a $1,000,000,000 (no I did not add too many zeros…it is 1 billion) high-rise home that is 27 floors tall, over 400,000 square feet, a 168 space parking garage, pools, health club, private movie theater, 3 helipads, and what every home needs – an ice room to escape the heat (infused with man-made snow flurries) and all of this is for his family of 6!  To make matters even worse – it is ugly!  “None of the top 10 super-rich billionaires of India have given any substantial amount toward any charity or for human welfare the way (Warren) Buffett or (Bill and Melinda) Gates has,” said a recent article in the Hindu newspaper.  He better run to one of his helipads if this movement comes to Mumbia, because he lives in a big target for the 99% of India to find him.

Uncle Ben told Peter Parker/Spiderman, “With great power comes great responsibility”.  I feel the only responsibility most wealthy today feel is protecting and growing their wealth; where as for the less fortunate are growing tired of protecting their little bit of money and assets FROM being taken by the wealthy.  It is going to be interesting to see who proves to use their great power to take responsibility and improve more than their OWN lives with this Occupy Wall Street momentum and improve the world for EVERYONE!!



Reference articles and some related articles:

http://www.huffingtonpost.com/2010/03/20/cigna-gives-1109-million_n_506974.html

http://www.dailymail.co.uk/news/article-2049466/Occupy-Wall-Street-protests-New-Yorks-Times-Square-global-day-revolution.html#ixzz1avKurMjt

http://www.newser.com/story/130613/8-out-of-400-billionaires-say-yes-to-higher-taxes.html

http://realestate.aol.com/blog/2011/06/02/now-you-see-it-now-you-dont-the-43-5-million-teardown/

http://www.angryblacklady.com/2011/09/19/shorter-john-fleming-r-whiner-how-do-i-live-on-400k-a-year-its-class-warfare-waaaah/

http://www.newser.com/story/115778/dear-top-1-payback-is-a.html

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You Won’t Win If You Don’t Play

You won’t win if you don’t play, is an expression I have heard a good bit from people that play the Lotto.  While I do admit to being an occasional Lotto player myself, I am not counting on the Lotto to fund my retirement.  But what I enjoy most most is the time between buying my tickets and checking my numbers…. until those numbers are checked…. it still could be me with the winning number combination!  This possibility of hope is founded as long as I played!

Since I have been on disability, I do not have a lot to hope for day to day other than hoping for a good day, a break from disabling Multiple Sclerosis, or do I?  I have discovered online sweepstakes.  I enter as many as I can.  There are some that require help from friends.  There was one for me to win a new shed, friends could vote that the shed we did have was original and creative – it is a 18-wheeler trailer that Dad took the wheels off of and added a storm door! lol  Instant shed.  At the end of the contest, our shed had the most votes, but we will have to see if the judges agree!  I should know soon if I won.  But like the time between buying a ticket and checking the numbers, so was the anticipation to check each day to see if my vote count had increased, had my friends and family taken the time to “help” me possibly win.

The new sweeps I am asking help with is “about.me”. It is a site that for me is like an online directory. This one site has quick links to all of the other places I “am” on the web – including this blog. It also links my facebook and twitter. As my presence online grows, I will include them on my about.me page (www.about.me/thomasjohnston).  In the about.me contest, the winner will receive a trip to New York City and be featured on a billboard in Times Square. Not since my early 1980s modeling days with Nunnery’s and Our Gang or being photographed by Barry Boyd and Tuminello’s Photography have I been a possible model on a Times Square billboard!! lol (long ago days at that).

After 24 hours in the about.me sweeps, I was in the top 10%…. then 48 hours I was in the top 5%, but now I have stalled in the top 5%.  I have 245 friends on facebook and yet when I post to go vote for me on facebook … I am lucky if 5 go to actually vote. 😦  I have received a few compliments on my writing, but to date – NO ONE has felt the need to used the paypal button to donate and encourage my efforts financially! lol  So I need to find a way to be more persuasive with my writing. I am finding it difficult to get friends to simply click one link then click vote (it does not even require anyone to enter an e-mail lol).  I have had over 8,500 people view my blog in the last year, but only 9 have been persuaded to subscribe to my blog.  So now I will ask the few that read this post to this point to maybe comment on how I may persuade friends to vote, subscribe or possibly even donate.  I NEED a NYC Times Square billboard appearance!  lol  😉

I will anxiously check each day to see how many hits I get for this post, how many votes I get in the sweeps and enjoy the moments of hope that comes with each.  Although it can be discouraging at times it is what keeps me aspiring to be more.  With feedback, help and encouragement from my readers…. I’ll find winning numbers one day!  But it can’t be said I won’t win if I don’t play – I am PLAYING!!

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The nonSocial Network

MySpace blazed a trail that Facebook paved over with a massive Interstate, iTunes has pretty much killed retail music stores, Amazon is now beginning to conquer book stores and Hulu and NetFlix are biting away at traditional TV and video stores like Blockbuster.  Our lives are moving more and more online, but calling it social media does not make being online social.  But there are some that just cannot keep up – rural America.  Believe it or not, there are areas of the United States that has no dsl service.  Poor souls like me are limited to satellite internet services like HughesNet or Wild Blue.

What few gather from the advertisements for HughesNet is that they limit the amount of information that can be downloaded in a 24 hour period.  So, one is able to feel they have something similar to dsl until they try joining the social network of life online.  The download limits prevent enjoying youtube, hulu or or even network tv streaming services.  To aggravate these customers with limited internet access even more, NetFlix changes its plans to a streaming service for all (even the ones that cannot take advantage of it) and eliminates the multiple dvd plans for only a singular dvd plan.  This results in even less movies per month on dvd for these rural customers with satellite internet.


I live with debilitating Multiple Sclerosis and the Internet is the main way I can keep connected to a world I am not always able to take part in fully.  NetFlix was a salvation for entertainment since this little rural area has no movie theater and my limited driving even negates the local Blockbuster as an option to be my movie source.  Congress feels no need to discuss issues of accessibility.  Actually the US has now fallen to 27th  in the world for household usage, broadband penetration and 22nd place in broadband use by population. As progress is made, the US is not only NOT the leader, the US is falling behind the rest of the world.

So many think of rural areas as redneck, backwards and a little lost in time, what does this say of us as a nation that it acceptable to leave so many behind when as a nation, the US is falling behind on many of what used to be its leadership.  Americans will be seen as the world’s rednecks – not that there is anything wrong with being redneck (speaking of being dated, let me see who got that Sienfeld reference lol). 

I have limits because of my MS, I am limited for social opportunities being gay in a small town, I have limited entertainment options and even have limited download capacity to interact and be social with the world.  Not that it matters, someone recently said to me, “I did not know you were back home.”  I replied, “I told everyone, I posted it on facebook.”  How social am I being to not even call, text, or e-mail anymore that I let a facebook post be my social interaction with friends and family?  How nonsocial am I becoming?  Where will this lead us as a nation to become so socially – nonsocial where we are already behind the rest of the world with the application of this technology?

Recently I have been trying to win a trip to New York City and I invite friends and family to “vote” for my about.me page.  I have about 250 friends on facebook, but only have 45 votes after 2 days of requests for friends and family to vote (some of those votes are people who vote each day).  Socially I am striking out in my social network because I cannot even get friends and family to clink one link to help me win a trip! lol  It is prom and I am campaigning to be King in a school where few even want me to have a ticket! lol  But so few even care if I have a ticket! 😦  It is like the paypal button that NO ONE has used in the year and a half since I added it!  lol

1 http://www.prweb.com/releases/2011/8/prweb8748530.htm

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