Who Gets MS?

Who Gets MS?

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I was sitting in a doctor’s office about 8 years ago and he was going over my MRI. He asked me a question that I have been used to hearing at least monthly throughout my life.
“What is your ethnic background?”

Well in my case that requires a full hour’s worth of time listing one by one the nationalities and races of my ancestors. So I began.
Native American
French African,
Indian from India
Scottish

“Ahhh, that’s the one” He stopped me. “Who was Scottish?”
I told him it was my great –grandfather on my mother’s side, and he exclaimed.
“Well you can thank your great-grandfather on your mother’s side for the MS.”

Okay I know there is supposed to be evidence that Scotland has one of the highest rates of MS in the world. The highest is evidently Canada. But I am confused. It’s not necessarily hereditary, but there is a genetic connection. Is that a bit of a catch 22 in anyone else’s book?

And then on top of that Native American, African, and Asians all have ‘supposedly’ very low incidences of MS. Of course that makes up the majority of my ethnic background. Oh what a conundrum.

But I did grow up in Ohio. Ding, ding, ding! Again a red flag. Grow up somewhere it snows, where winters are truly winters, and you guessed it, you too have a better chance of having MS than anyone else.

I take umbrage to all of this. Currently I am living in Bahrain, that for those of you who don’t know (trust me I didn’t know either until I was about to move here) is in the middle of the Arabian Gulf…between Saudi Arabia and Iran. When I arrived here about 10 years ago Multiple Sclerosis was one of the rarer diseases in the region. There was one neurologist on the island who specialized in MS and diseases like it, but for the most part, you had to go somewhere else to get anyone who really understood the disease. .

So a decade later, and we have an MS Society, an awareness group – in Arabic, so it doesn’t do me much good…and people I meet are starting to not only recognize what the disease is, but most know of someone who has it.

In fact, I want YOU to do the experiment. Tell people who you meet that you have MS and see just what the percentage is of people who say their, mother, uncle, cousin, best friend, etc. has Multiple Sclerosis.

Recently I have noticed that more and more people seem to have MS. Or is it just that I am dealing with the Green Car Syndrome. You know, you buy a green car because it is unusual and you want to be a bit different, and then as soon as you have it in your possession every other car it seems is green.

Anyway, that is the way it worked for me. So is it that I am just thinking so many people are getting MS, or is it really true? It feels like it is hitting epidemic proportions…

We do have better diagnostic tools,
We do live longer,
We talk about diseases more openly now

I don’t know. Since we are not really sure yet what causes this little MONSTER to take up residence, it is hard to say who actually gets it and who doesn’t.

You can go with the scientific facts, and there is no reason not to, but it sure seems to me that a lot of folks who don’t fit the profile end up with the disease.

Seniors diagnosed
Men
African, Asian, Latinos
People in HOT climates

I know there is an exception to every rule, it just seems that with Multiple Sclerosis the rules are so flexible that there aren’t any rules at all.

Stop the Presses – THE CURE FOR MS HAS BEEN FOUND!!!

snake oil

I was talking to a friend of mine yesterday, a very spiritually inclined person, who believes that all of our problems are due to faults in our character. You know the type,. YOU ARE RESPONSIBLE FOR YOUR DISEASE – YOU CREATED IT. That type.

Now look, that may all be true, but honestly, it is the last thing I want to hear. Okay I created my Multiple Sclerosis because I didn’t know how to deal with some trauma or another.   Fine. I will even accept that. But my question for all of those people who are so quick to give advice and opinions on the origins of my disease, is this:

SO WHAT?

I mean now I have it, and let’s move on.

The main thing now is how I live with it. And oh yeah, while we are at it: No, I am not going to take your snake oil, pompom juice, googoo berries or eat only foods originating from below the 42nd parallel.  I didn’t ask you to cure me or to psychoanalyze my pathology. I don’t need an extra dose of hemlock or what ever else you think is the answer to all my problems.

It always amazes me how perfectly reasonable people, who are wonderful in every other way, seem to have the mistaken belief that they hold the answer to my MS.

If that were true, then why waste time with doctors or any medicine. Just call up a friend and she will tell you that two pounds of flaxseed a day will fix you right up…

There you are, good to go. CURED!

I know this is all done with the best intentions. I know there is a part of the friend that is really trying to be helpful. But friends, please listen carefully to me right now.

We (those of us with incurable,, chronic illness) are not asking, nor do we expect you or anyone else to have the magic wand to wave over our heads that will erase the pain.

I know about my disease better than you do, thank you very much. I have read every article, every website, and on top of that I live with it everyday. Don’t insist to me that MS is typically for people over 50, when I know the opposite is true. Don’t tell me if I THINK I am cured I will be.

I am a pretty positive person when it comes to living with MS. There is nothing wrong with thinking you can be better. It helps. But sometimes the implication from people like this is that we aren’t doing a good enough job. We aren’t thinking positive ENOUGH – because if we did – again, we would be CURED!

And, above all PLEASE, do not tell me about that other friend who was miraculously healed – Hallelujah!

Because I know something you don’t about MS. That is the way it behaves. It wasn’t the stupid bee pollen or the rice water, it was a relapse! The relapse worked its way through her body, and then it remitted.

HINT HINT: Relapsing Remitting Multiple Sclerosis.

Do I sound a little tiny bit bitter? I’m not.

I’m just tired of hearing the same thing from people who think for some unknown reason that they have the cure for MS.

I say this to them:

If you do, PLEASE TELL THE MEDICAL PROFESSION SO WE CAN ALL GET RID OF IT!

And please don’t ever get a disease that is either incurable or chronic, because if you do I want to know just how many of those googoo berries it will take to cure you.

Happy MS Awareness Week!

 

MS_ribbon

Okay maybe happy is stretching it…but I actually do feel good that we have a whole week, and month, to spread the word about MS Awareness.

Today I was thinking about ways I could help the cause.  Sometimes I have great ideas and then they fizzle.  Or, should I say I fizzle them.  Because I get tired all the time and have a lot of work to do, or the nausea kicks in and nothing ever goes well with nausea!

And so the lightbulb went on again this morning.

I want to create an online quilt for MS AWARENESS.   It is a simple idea….everyone takes a piece of something that is square and using the prompt.

_______________________________ is my medicine.   The idea is to show what you do to make yourself feel better when MS is kicking your butt!

For example mine would be:   ART IS MY MEDICINE….

Anyway I am making a sample and posting it so you can really see what I mean.

It’s a unique way can share with other MS friends, and show each other how we cope with our disease.

What do you think?

Then when you are done you can post it on MS Ribbon page on Facebook…and I will put the whole thing together in a graphic!

Do you love the idea?

Those are the basics…tomorrow I will sit  down and plan the whole shabang! But for now, I really ought to get some sleep.  :/

Toodles!

Notes from a Spoon Theory Latecomer

 

spoons

November 2, 2014 fayguilian 1 Comment

Must belong to a ‘Spoonie’Today I found out about the Spoon Theory. I kept seeing people on my Twitter account saying that they were ‘spoonies’, or ‘spoon collectors’ and as embarrassed as I am to say it now, I really thought they were talking about belonging to one of those clubs that collects decorative spoons from all the states or countries where they have traveled.

Yeah I know, I’m not the sharpest nail on the bed, but that is honestly what I thought. Then I submitted one of my articles to an MS group and people started talking about the ‘spoon theory’ as if it belonged to our disease for some reason. I finally realized that spoon collecting didn’t have anything to do with those commemorative spoons and I was evidently missing the whole idea of what it meant. So I decided to Google it…okay in my case …I Yahooed it but, the point is still the same.

That is when I found Christine Miserandino’s video on YouTube. She told the story of how she and her good friend had a dinner conversation about her ‘invisible illness‘ – In Christine’s case that is Lupus. As a person with Multiple Sclerosis I have had plenty of practice hearing the well meaning friends who tell me ‘You don’t look sick!” Or “You look great even if you feel bad”

That is all well and good except that when people don’t see what is wrong they have no way of knowing what it feels like to be someone with chronic pain and chronic illness.

Enter SPOON THEORY! Christine Miserandino has a brilliant way of making it absolutely clear just how we function from day to day with something like MS, Fibromyalgia or Lupus.

I could try to tell you the story of the Spoon Theory…but why not let Ms. Miserandino herself tell you…she can do it so much better than I could.

After you see the video if you want to find out more about the Spoon Theory pop on over to www.butyoudontlooksick.com

The Fast and The Furious (another MS tale)

thth

November 1, 2014 fayguilian Leave a comment

Want to know what a good day feels like when you have MS?

You spend days dragging yourself out of bed, and if you are unfortunate enough to have a 9-to-5 job, that means that most mornings you struggle to shower (or not), dress, do the other necessities, and finally get out the door.

Of course by the time you get out that door you have pretty much spent all the energy reserved for that day, so the rest of the morning and afternoon you are running on afterburn.

But, then one day, who knows why, who knows when, you wake up and Bingo Bango, you have mega-energy! You not only feel good, you feel SUPERHUMAN!

What happens next?

You jump out of bed run to the car, (do stop to get dressed first!) go everywhere you can possibly go, and you just keep moving like that little Energizer Bunny.

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Until, you fall flat on your face.

There you are living the fast and furious life – all in one good day, because you know as well as I do, that good day may not come around for a long, long time,  and who can blame you for wanting to make the most of it?

Now if you have a family anything like mine, you will hear cries of. “Take it easy, you’ll make yourself sick!” ‘You know you have to PACE YOURSELF!”

Phooey I say —-When I feel good, I have to take advantage of the moment…Carpe Diem! Live for the moment! Move fast and then faster.

Actually, I would love to learn to pace myself but that would require more good days and less rotten ones.  But until that happens I have to move when I can move, it makes me feel normal. It makes me have hope. It makes me remember what it was like before MS took over and forced me to slow way, way, down.

So when a good day comes round…watch out everyone! I will be spinning like the white tornado and nobody can tell me not to feel on top of the world! Because, to me, normal  is just  FABULOUS!

thgg

Why Are You Always Talking About MS?

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July 12, 2014 fayguilian 1 Comment

Although nobody actually has the nerve to say it to me, I am sure there are plenty of folks who are wondering why I always have to be talking about MS. So I figured it was time to make things crystal clear…about the whys, and the what fors.

Slide1

This beautiful piece is dedicated to MS awareness. Created by one of my former art students, Noor Al-Tajer.

I have been dealing with some type of chronic illness since about 1993. First it was UNKNOWN. Then it was Fibromyalgia. And then finally in 2004, it became apparent that the probable cause of all the strange symptomatic periods were related to the neurological disease Multiple Sclerosis.

There were years, between 1999 and 2004 when I really didn’t have any problems at all. I thought I had been cured…I can recall the day the change took place…It was in Barcelona, just after visiting Lourdes France. (another story)

But like many people with the beginning stages of a chronic illness I was probably having relapses and remissions.

Which meant that for 5 solid years I was able to live my life without the worry of fatigue, pain, or that incredible ‘weird’ feeling that accompanies this disease. And for those of you who don’t have chronic disease…don’t just gloss over the words PAIN-FATIGUE-WEIRD and say to yourselves, “But everyone has pain and fatigue, in fact I am very tired right now!”

Trust me, and I really do mean I hope you will have to trust me for the rest of your lives, I have had YOUR fatigue and pain, and I have had the new fatigue and pain that comes with chronic illness. THEY DO NOT DESERVE TO BE THE SAME WORDS.

THEY ARE NOT THE SAME THING.   They are as related as a dog is to a canary.

Just keep that image in mind the next time someone with MS tells you she is fatigued.

Anyway, that is the background – the chronology. And though it doesn’t sound so terrible, it adds up to more than 25 years of my life. More than a quarter of a century has been involved with either trying to get a diagnosis, or living WITH the diagnosis I have.

So what, you say? There are people with Cancer, way worse than me, right? And some people were born with disability, right? Yes …all true.

And I only have an invisible, inconvenient disease.

Which is one reason WHY I talk about it.

 

HERE YOUR EYE

You can’t pick me out of a crowd most of the time and say…”oh poor thing she has MS.” You can’t do that with the majority of people with this disease…in the beginning.

What we have is insidious. It slithers in silently, without fanfare and it runs through our bodies from the moment it starts until the day we die.   There are medicines to help us from hurting to some degree, and medicines to slow the progression to some degree, but we go to bed every night and wake up every morning knowing that nothing about our future is certain. MS can strike us down from running 10 miles a day to sitting in a wheelchair all within 24 hours. It can come with a vengeance and go into hiding just as rapidly or, it can come and not go away at all.

I travel. And I travel alone. Each time I do that it is a test of faith. Because I know that I can be somewhere, in some foreign country all by myself, and BAMM! An MS flare will start. I could be in real trouble. We all live our lives in faith that we will be here tomorrow, for nothing is certain, it is true. But I make every plan, every dream, every decision, with not just the knowledge that I am a mortal being, but with the reality that I am a mortal who has a time bomb ticking, and there is no time stamp detonator. I could go off at any moment.

I talk about MS because it is a HUGE part of my life. It has brought me challenges, and it has brought me blessings.

Yes, I said that.

I have met the most wonderful people in the world because I have Multiple Sclerosis. I have found out first hand about the caring and concern that others show to those in need. I have become more resilient, stronger, and more in touch with the realities and immediacy of life.

Most of you go along like you have all the time in the world to do whatever it is you are thinking about doing. “Oh I’ll just do it , TOMORROW.”

I know something very important that you don’t. Tomorrow ain’t always what it is cracked up to be.

Tomorrow is a very dangerous concept. Sure the world could implode tomorrow, or you could get hit by the proverbial truck, but not likely, so for the most of you, you are safe.

Me? Not so much. My tomorrow statistically has a GOOD chance of knocking me flat. I might not be as strong, or able to walk or speak clearly, or I might just be in too much pain to deal with anything tomorrow.

So if I have a dream, which I do, (many of them to be exact) I had better get on them TODAY!

Because if I wake up TODAY and it is a good day (all you MSers know exactly what I’m talking about) that means it is potentially a day for me to follow my heart and make my dreams come true.

I can spend that good day watching 12 hours of ‘Snapped’, but why not save that for a BAD day, when Snapped is more about a feeling, and less about the television show!

So you still don’t know why I talk about MS?

 

Because unless I talk about it, you will forget it exists, until you see me or someone you love in a wheelchair, with a walker, or using a cane.

Because you will not fight for me, if I don’t fight for myself.

Because, I can’t be a silent victim of a disease.

Because I am not held hostage to denial.

Because even though I have Multiple Sclerosis, I walk proud,

and I am thankful for the days I can walk.

A Bit of Retro Thinking – It Still Applies

 

July 11, 2014 fayguilian Leave a comment

Digging back into the archives of papers, (ok, computer files) from the past couple of decades, I ran across a piece I had written in 2007.  I was surprised at how little had changed in the way I view my life.

What have you written in those  antique journals and how do the words translate to your present world?

Creating requires us to make choices. Even the act of not choosing choice in itself. If I make no decision, then the decision is by default,and the result of that decision is also by default.

I realize that I do not want my work, my art, my creative statement to be default. Therefore I had to go into an almost meditative place to define what my process is about. I feel that it is a getting in touch with my inner self. If I can go back to the beginning of this paper asan example, I stated that as a child I used art as a safe place. A place where I could go to be in touch with something that is in the core of me. I am driven by that need to create. Whenever I begin to work either on a painting, an illustration or a piece of creative writing, I essentially have a small out of body experience. In the best of times, when I am making art of any kind, I almost have no thought as to how it is being achieved. When a painting or illustration is really working for me, it is effortless. It is in that place some call ‘the zone’ where something is coming through me and taking form. When I stand back from a work that is created this way, I often find it difficult to recognize the brush strokes it took to make it something concrete. When it is a piece of writing, it flows from me with a certain flair that makes me marvel at the words I have chosen or the phrases I have spun together.

This is the creative process as it manifests in my life in its purest form. But there is something else that accounts for those moments of pure creative genius. And that, I find more and more, is practice. When I paint everyday, or write every day, the chances of those brilliant words and pictures coming from me are more likely to occur than when I leave it to chance.

Before I had any training, and when I was just doing the art because I had to do the art, I bought into that belief system that artists had to wait for ‘inspiration’ to be able to create. And so I waited. And waited, and waited, and noticed that other people who weren’t waiting were actually getting things done and I was still hoping for that inspiration to drop from the sky and give me the impetus to move ahead and do something masterful. It is much like the statement about the two groups of students – the one group had to create the perfect pot by trying to make as many as they could and the other group had to try to do it by just creating one….but one perfect pot. It truly is practice that makes perfect.

Now days when I think about creating I try to do something about it. Not just think about doing it. I have art journals all over the house, in the car, in the bathroom, next to the bed. Everywhere I carry some little book that I can either scribble in or write a few lines in. If I don’t do this I loose those moments of inspiration that come when I am in the midst of shopping at Safeway or watching the news. Creating has become a fulltime job now. It is what I have been trying to make happen in my life for the past fifty years.

 

I HAVE MS and I Am Declaring My Independence From Limitation

July 5, 2014 fayguilian Leave a comment

Earlier this morning my sister reminded me of something that I sometimes forget about being way over here, half around the world from the USA – today is America’s Independence Day. The 4th of July.

But to make it even more personal my sister decided that it was her Independence Day too…The what, wherefores, and whys of her personal declaration I will leave to her, but it got me thinking.

I need to make a Declaration of Independence also. I need to really jump into life, despite my recent MS flare and the activity of all the paresthesia that surrounded it, I need to declare my purpose NOW and realize that even though life is never going to go back to where it once was, it can certainly go forward and be fulfilling.

So here it is – My Declaration of Independence.

I will go forth with the knowledge that I have a purpose to fulfill on this Earth. That I am gifted with all the unique talent and ability that I need in order to complete my Earthly mission. That I am unstoppable in my resolve, not by health or any perceived lack, and that my contributions to my family, students, and community will be complete and satisfying.

I declare that I accept that I must fight for a cure for Multiple Sclerosis and that I will work actively to be a part of the positive voices who contribute to this cause. I will, in my own unique way become a face of MS who is not afraid to move, dance, crawl, scoot or fly forward.

It is my dream to be able to show others who face this disease that even through pain, and less ability, and sometimes massive inconvenience that we can still have happy, rewarding, active, daring, adventurous and truly luscious lives!

Signed,
Fay Guilian.

To me the exciting part about declaring my independence from limitation…is that it gives me freedom, and because of that I am DREAMING BIG!

I have a SECRET plan, that only one person in the world right now knows about…it is HUGE and it will be loud..and as they say over here in the Middle East, inshallah..(God willing) it will be manifested. While I work on that, in the background, there are other things cooking that are soon to appear.

Everyone latches on to that saying, I HAVE ME BUT IT DOESN’T HAVE ME and it is a good, catchy slogan…but I like to think I have MS and I have it by the throat! I need that go get’um non-stop hup two three four forward march feeling, to at times, even propel myself out of bed. But here is the truth of it. No matter how hard it might be to get around or what paraphenalia I have to take with me…cane, medicine, needles, etc. It is worth every minute of being out there in the world (hint about my HUGE project!!!)

I am not shy about my MS. I know a lot of people who don’t want to tell others about their condition. And if it is work related then I understand that, but I have run across other MSers who somehow feel ashamed to say they have a chronic illness. When I need my cane, and that isn’t all the time, I use that opportunity to tell people why I have it. Of course I am one of those people who gets into conversations with random folks at the grocery or the bus stop, but one person at a time gets to see a new face of MS.

And on the days when I look like everybody else, I still let students, and others who I interact with for a long period of time, know what I am dealing with. They might see a wobble in my walk, or a slur in my speech…They could notice the word that gets stuck in my head and the hands that tremble. It doesn’t happen everyday, but when it does, I think its is better to just tell folks what it is.

And by the way, when I do say I have MS, I am always blown away by the number of people who are related to someone who has it. But that my friends, is a subject for another day, isn’t it?

Journeying through life with my companions: Art, Travel, and Multiple Sclerosis

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