A Miracle by Any Other Name

Admittedly this is not about the trip to Thailand or China….It is not even especially about Multiple Sclerosis, but every now and then I am reminded by the gloriousness and beauty of simple faith.  And so for my share this week I want to retell a story that happened to me many years ago.

 

 

A Miracle By Any Other Name

As a young girl, I adored St. Bernadette. I watched the movie The Song of Bernadette so many times I could recite dialog with Jennifer Jones. Naturally, I had always wanted to visit Lourdes, and on one trip to France I made it to the town, and I saw the house where Bernadette had lived. Plaques covered the walls dedicated to her miracles. Surprisingly only 66 have been verified.

The previous seven years of my life I had gone from doctor to doctor. My symptoms were mysterious, causing speculation that I suffered from some unknown autoimmune disease. Anything from Scleroderma to Chronic Fatigue Syndrome. After one appointment I went home in tears after being told I might not live much longer than 5 years.

But now I was at Lourdes. I approached the grotto and waited to go to the waters for a cure. With candle in hand, I stood in line. I neared the clearing where Bernadette saw Mother Mary and was overcome with emotion. When my hand touched the water that trickled down, tears fell silently as I prepared to go in and bathe. I felt a bit nervous and somewhat foolish, but I didn’t feel especially hopeful.

Then…one by one they came. Old people in wheelchairs, small children on stretchers with IV’s and nurses by their sides. Sickness, more than I could imagine, more than I could understand. No matter how many there were, I knew more would come. The realization of how many sick and dying people there were on Earth on just this one-day stopped me. I couldn’t walk another step.

A thought raced through my mind:  What if, there were a limited number of miracles to go around? What if there are say, 1,000,000 miracles that will happen at Lourdes? Not one more, or one less. What if I took one that could go to a dying child? What if someone didn’t live because I got her miracle? All logic aside, those were my thoughts. So I shook my head and wept. Out loud for over an hour, inconsolably, I wept. I slowly walked away from the Grotto clutching a picture of Bernadette and a bottle of water from the fountain. I never did bathe in the waters; I knew they weren’t meant for me.

Twenty-four hours later I woke up in a hotel in Barcelona, with no pain. The same thing happened the next day and the day after.  They called it remission.  You can call it a healing if you like, or you can call it a coincidence. Whatever word you use, will not diminish the unexplained power that took away a life of pain and suffering and gave me one of freedom and contentment. Call it what you want. The truth is, that to me, a miracle by any other name is still the same thing.

Epilogue

15 years forward – I am still free of the same Fibromyalgia pain that I experienced before that trip. Of course, in fairness, I guess I did trade the Fibro for the MS, but I am very grateful for the day I went to Lourdes.

A couple of years ago I returned to France on another pilgrimage to visit Bernardette Soubirous.  This time I took a long walk from the train station in Nevers to her resting place, a little chapel at the top of a winding road.  Her body is encased in glass and very visible to the naked eye.

Stay Awake on Your Journey!

Awaken To The Inner Journey

Being awake for the journey doesn’t always mean travel. Sometimes it means being awake to the little miracles life has to offer. I was reminded of that awhile back, when out of the blue I was offered the job of my dreams.

One night I was cleaning out my emails, removing and sorting what needed to be filed and as I hit the delete I took a pause – one of those emails said something about wanting to talk to me about a job.

My dream job is not an easy one to find. There are very few companies and even fewer openings. But sure enough, the email I had almost ditched was an invitation to meet with a prestigious firm about the perfect position for me. In less than a week I had been offered the job and a new career. Actually, it was the career I had given up years ago, and one I had missed every day for two decades.

Sometimes when something great happens we get that dreaded feeling that the bottom will drop out because things are going too well. There must be a little demon around the corner ready to ruin it all. I admit to having those thoughts and I know how hard it is to break that feeling of unworthiness. But this time, with this bit of good fortune, I decided to change those mental tapes and start with acceptance and gratitude.

For anyone one who has lived a lifetime thinking luck only happens to other people, accepting the fact that you are deserving is a struggle. But by accepting our gifts from the universe with gratitude we are acknowledging our worthiness, knowing that what comes to us in the way of positive, life-changing events, is more than just dumb luck. Waking up each morning and uttering the words “Thank you” has become my new mantra.

As I took the time to reflect, I began to understand what had really happened and how much more was involved. Now I know that my thoughts, conscious or not, played a huge part in me being able to once again step into the career I love so much.

You see consciously, even though I didn’t really think I would work in this area again, I never lost focus of my love for the business. I wrote about it, I taught about it, I even counseled others on it. The only thing I had not done was admit to myself that I still had one true desire, and that was to find myself back in the flow of my old career.

I remember reading that the Buddha said: “You are what you think”. And even though obviously the Buddha needs no help from me, I would add that you are what you think, whether you consciously think it or not.

Don’t Leave Yet!!!

So you have chosen your destination.  It is hopefully accessibility friendly.  You have your tickets, and you have also chosen your seat, notified the airline you have MS and you think you are ready to go….

Well not quite. Whether you are traveling alone or with someone else, you have a few steps to take before you can take off.

  • Contact your Doctor  – I would never advise you to travel without medical approval, but you do know your body best.  So take all advice from those other than the doctor with a grain of salt. People can be helpful and hurtful at the same time.  Friends who are well-meaning may try to keep you from going certain places or want you only to travel in a designated way. Keep in mind that they are not living in your body with your symptoms or your feelings.

 

  • Make sure you have enough medication.  I failed to order my injections within time for them to arrive before one of my trips. They arrived a day after I traveled, so I was without them for over two weeks. Not a great start to any holiday.  Injectables and other medications are necessary to help keep your condition stable so go to the pharmacy and ask for a vacation exemption if you are going to be traveling for a long period of time.  That way they can fill your prescriptions up to three months in advance. Unfortunately, this is not the case if you need opioid or similar medication.  I wish I had a better answer for this, as I for one have had to suffer for days because of it. 

 

  • Keep a copy of a letter with your diagnosis, and all medications handy in your carry-on bags.  I have had my luggage and even a WHEELCHAIR  lost on a plane…so never ever trust that what you need will get to your destination when you do. Something as vital as your medication should not leave your sight. 

  • Find a good way to keep injections refrigerated if that is what yours need. Flight attendants are not allowed to store your injections in the refrigerators of the airplane, so a small ice pack is usually good enough. My injections come with a travel pack. It has a place for the injector as well as extra injections, and a cold pack comes with it.  If you are traveling without refrigeration for so long that you are afraid your injections won’t be fridge temperature, then contact the manufacturer or your MS nurse. They know just how long the injectables can actually go without refrigeration.

 

  • If you will have traveling companions, please make them aware of the limitations that come with traveling with someone who has a chronic illness.  Even if you have an ‘invisible’ form of MS you are still living with a serious disease. It is important to have your companions know that you may have to stop for rest, or you may have to alter plans because you are not physically able to do as much as they can.  Above all though, before you leave, vow to be your own advocate, know your limits and don’t be afraid to voice them. Since you have warned your fellow travelers that you are not like they are and that you will need to follow your own internal rhythm, then they should be able to understand when you put your foot down and at some point refuse to go on an excursion or outing. Don’t be shy about your needs.  You must let people know how you feel. They cannot see inside your body.

  • And lastly, but so so important, PLEASE do not overexert yourself. People always tell us to ‘pace yourself’ and if you are like me, you probably never listen.  But this time I am begging you to do just that. When you are away from home, eating strange foods, drinking the water, adjusting to different altitudes, you are more susceptible to having little problems show up. On this past trip, I actually had one incident of temporary blindness in one eye. Quite scary, and probably avoidable.  I had been running on a schedule that would challenge anyone in the best of health. Why? Because I am human and out to prove that I can do anything with MS. And the truth is I can, I just don’t have to do it all in a week! So take it from me, this is not the time to show everyone what a superwoman or man you are. If you take it easy and do it in baby steps you will be able to enjoy any vacation without letting your illness take over. I publish my mistakes in hope that you will learn from them without having to experience the same things. So get out there and have a great holiday.  The time to travel is now, not later. 

 

PS – Make a list of important number for people who are responsible for your healthcare – Neurologist, MS Nurse, Primary Care Physician, etc. and it is a good idea to have a Medic Alert Bracelet, especially if you are currently on steroids or Methotrexate.

Traveling by Golf Cart or The perils of having an invisible disease

Yesterday I went on an excursion to help a friend of mine look for an apartment.  We saw beautifully manicured lawns, lovely swimming pools, Jacuzzis, and hiking trails galore.  Plenty of parking areas, and family-friendly play sections.  This beautiful complex had everything an able-bodied person would want.  We traveled around on a golf cart since moving about on foot would have taken forever, but I have a secret.  Traveling on foot would not have been just an inconvenience, it would have been impossible.

I am one of millions who has an invisible disease. It is not usually obvious to those who see me walk from my car to the supermarket, or even as I take the dog for a midday stroll, but I am technically classified as disabled with a condition expected to last long term or end in death.  You, my public, would never guess it as I greet you on the street corner.  If you are the observant type, you might notice the handicapped placard in the rear-view mirror of the car, or if you aren’t into placards you may just think I have been rude enough to take up one of those handicap spaces that someone else should use, because after all, there couldn’t possibly be anything wrong with me.

I constantly hear something that goes something like – I can’t believe how well you look. You must really take care of yourself.

 

No, unfortunately, I don’t take great care of myself, but I guess I do look pretty good.  Especially to those who have known about my disease for over 15 years now, and expect to see me on death’s door at any moment.  But, I am not the face of Cancer or ALS, I am the face of an invisible chronic illness. I live with debilitating pain, and yet I keep on plugging away at life.

Sometimes I even live with the real fear that I will wake up and this will be the day that it all falls apart. At times I have limited mobility, limited eyesight, limited strength, and limited ability to focus.  I also have unlimited ability to create, imagine and inspire.

That is why, when you see the next person walk away from that car parked in a handicapped spot, allow him or her that little bit of dignity and don’t question.  She may be in considerable more pain than you can imagine, yet at the same time, she may be dreaming about how to create the next new clothing line.  Don’t assume. Cheer.  The person who you just saw walk unassisted into that shop is a person with courage.  She is outside in the world, living daily, functioning, and more importantly, she is NOT giving up. She is creating a life and committing to a dream.   And while you are at it, please, try to remember that looking good does not always equal feeling good – there are plenty of days I have looked great and felt like crap…How about you?

:)

Before You Take Off!!!

Last month I embarked on a trip to Asia to learn (and subsequently teach) how to have Multiple Sclerosis and stil be able to travel well. Even though I am not new to traveling, as I have been to over 50 countries now and I plan to continue to move through as many of the rest of them as possible during my life, I have done most of it since I was diagnosed with MS and much of it with obvious limitations of the disease.  

 

That is why I decided that other people with MS and other chronic illnesses could travel too.  It takes a bit of planning, but it is definitely doable.

My good friend (and videographer) Jude traveled with me so that she could help record the journey. From Los Angeles, Ca we headed first for China, and then on to Thailand. But let’s start at the beginning.

Booking The Trip.

 

Where you decide to go is certainly up to you. Nothing about MS should hold you back from going to the places you most desire.  While it is true that we have to be careful in the heat, (and for some of us, even the extremes of cold can pose an issue)..you can still arrange it so that you are able to visit the places on your bucket list, or get to that family reunion regardless of the challenges of MS. But if you are planning a trip for fun and you have the liberty of choosing when you go, remember to check the weather in the location where you are planning to travel and go during the times of the year that makes the most sense.  

 

For example….Dubai is on many a bucket list, but traveling to Dubai in August is like signing up for extreme torture.  The weather is HOT, no I mean it. HOT!!! It easily can get up to 125 F on a bright August day. But, Dubai in the winter is almost always between 55 and 75. So why not make that a Winter holiday destination instead of a summer one?

 

THE KEY IS PLANNING

Before heading off on the big trip I just completed, one of the first things I did was to book my seats carefully.  Here are a few tricks to help with getting the best seat on an airplane if you have mobility or other problems.

Pick your seat ahead of time.  No that doesn’t mean I want you to spend the extra money for the preferred seat, but there are some tips that make flying more comfortable.  I have a lot of spasticity in the left leg. This makes sitting in the cramped airplane especially uncomfortable. Therefore I always ask for a seat that allows my left side to be in the aisle.  I can move my leg better and stretch it down the aisle when no one is walking through. You know your body and limitations better than anyone else so please be your own advocate.

Bulkhead seats are great for people with limited mobility and unless there are babies flying that need the bassinet you should be able to grab one of those easily because in general, people don’t like the tray that goes in the seat and the close proximity to the bathrooms.  I on the other hand and many MSers, love having the bathroom just a few steps away.

Always contact the airline, tell them that you have MS and make your needs known.  There is no reason to suffer a bad seat (especially on a long distance flight) when you have a condition like ours.  The airlines are extremely accommodating if you approach it in a genuinely nice way. Remember, I have flown hundreds of times and I have never had a seat request denied. The airline personnel may even change your seat to a preferred seat without you paying for it or move you right to the front of the plane, I have had that happen a few times.

Also, it never hurts once you are at the airport, to ask for an upgrade to first or business class. Seats in those classes are not always filled and letting someone with a disability have the empty seat doesn’t cost the airline a thing. In fact, it sometimes creates goodwill. So dress nicely, but comfortable, look sharp and ask for that upgrade. They won’t offer it unless you ask.

Then again, If you have someone in your family who travels a lot, using their miles to get upgrades is a very smart move.  Some airlines do allow members to ‘gift’ miles to others in their immediate family, so don’t be shy. ASK anyone who might have those accumulated miles sitting around to let you in on a few of them!

And Always Always Always ask for a wheelchair!  

Airlines will provide wheelchairs for you to get through security (TSA) and to your gate. Please take advantage of that service.  I do well walking, but I don’t do well standing for long periods of time in one place. The pressure of standing in long lines puts weight on my back and legs, and they become weak after even a short wait. As we all know TSA lines can get long and cumbersome so the wheelchair and attendant will zoom you right past that chaos and straight to where you need to go without all the hassle.

Plus you never know exactly how far that gate is from the check-in point. Why tire yourself out BEFORE you even take off? That is no way to start a trip. Yes, it is tempting to show everyone just how well you can do without help, but trust me, it isn’t worth it.  If you want to enjoy your trip and be rested once you get there, airport marathons are not worth what it can do to you later. Get the wheelchair! There is no shame in using it. (Remember you do have MS)         

P.S. If you don’t have frequent flyer miles….sign up! Even if you only take one trip a year.  Otherwise, it is like letting free money float away into the clouds.

 

Random Thoughts on the Here and Now

Someone once told me there is no better time than now to do what you love.  I think I was about 21 and had no idea how fast the years would go and how many obstacles would get in my way.  There was always the chance to do it later.  But you and I know that later is a figment of our imaginations and we really don’t have a later.  Did you know that?  All we have is now.  So no matter what your love is today, go out and get it done. It may not be the thing you love next week or the week after, but let’s evaluate in the scheme of life.  Is this thing you love something you will get to the end of your days and regret not doing? 

Then, in that case, I suggest you get to it.  Who wants to be full of regrets and sadness.  Go out and be full of life and be joyful.  I have to take injections and pain medicine to function fully. Others of you have lots of challenges as well.  So what?  We are full in heart even if not in perfect health and we can make each individual day count.  Set your goals for the day early. You don’t need to climb Mt Everest each day, just a little step in any direction is a step in the right direction.

You have got to have that never give up attitude so that you never give in to your disease.

 

For Your Sake, Travel.

 

 

The thing about traveling is that it takes you out of your normal life and opens up the world in front of you. On a catamaran or a longboat down the Mekong River, all the limitations of the small lives we lead at home are oceans away.  The colors of life along a new stretch of highway in China, are thicker, fuller than the dull grey of the 405 freeway you travel to and from work.  On a windy day in the Rioja of Spain, you are a child again. Reborn, refreshed and remembering all of the dreams and desires that only the wild awakening of a new place can offer.  

Truth is it matters not much whether you have traveled thousands of miles or the 35 that it takes to make the familiar scenery of your daily existance change.  All travel infuses us with an energy that only it can create.

Do you think we travel for fun and adventure? For the thrill of spending a night in a hotel, hostel or camp ground?  I don’t know about you, but I don’t believe that for one minute, because I know that deep down even if we never recognize or acknowledge it, the real reason we travel is because it allows us to feel invincible again.  How else can an adult, laden with car payments and morgages have a chance to experience the pure bliss of being away from all the mundane ne’er to end onslaught of adulthood?

We don’t have the luxury of building mud castles, and pretending we are the princess or knight who graces the clumpy walls.  We have to be practical, because afterall we are adults and as adults we know that all that make believe stuff is for kids.  So what do we have instead….we have dreams of far off, or near off,  places. We pour over brochures, scour the internet, plan, plan and plan until that day FINALLY arrives when we pack our suitcases,  load up the van, put Fido in Doggy Daycare and hike, swim, float, fly, or choochoo our way to two weeks of freedom and fantasy.  

 

Ahhh, adulthood.  We so longed for it at 13….not quite what it was cracked up to be is it now?

Somewhere along the way we have lost the childlike wonder and belief in ourselves that we had at 6.  We could do anything then. If you were to tell my grandson he could not grow up to be Superman right now, it would not only crush his little spirit, but I doubt that he would believe you.

 

But a few years from now he not only will insist that such a desire is insane, he will probably adamently announce that he NEVER said anything so ridiculous.  What happened to the dreams you had as a child?  Were you determined to be a dancer, an artist,  astronaut, movie star, the first female president, or a clown in a circus?  I am only guessing here, but unless you said with conviction from your soul that you wanted nothing more than to be a trial attorney or a neurosurgeon, you hear how ‘impractical’ it was for you to attain your desired profession.  More than like your were then encouraged to do something more…practical.  Something where you could be guaranteed to make money.  A banker, accountant, engineer, teacher. Perhaps?  Hey there is nothing at all wrong with any of those jobs IF the reason you are in that profession is because you really truly want that for your life’s path.  But life should never be created out of ‘something to fall back on’.  

 

“So what is your point?” you ask.   I will tell you exactly what it is….it is that we travel to bring us back to that place.  For a few short days or weeks we get to imagine that we have no limits, nothing pressing down like a vice around our shoulders, we can even dream about what we might STILL like to be when we grow up.

 

I am an avid traveler.  I will travel anywhere anytime anyplace.  No place is too far, or close, too hot or cold (yeah the heat – well, I will get back to you on that on later) and I feel a sense of wonder every single time I am on the road.

Travel forces us to slow down be in the moment, be at one with our new environment and also at one with ourselves.  Maybe even a long lost dream or two will surface during a nice road trip.

When you do travel, take the time to soak up the place you are in, the smells of fresh baguettes, the sounds of the bells that clang against the donkey cart in the morning as he makes his way to the market with olives in tow. Those are the anchors that will bring you back on a lonely cold night after a harder day at work.

We relive our childhood wonder through seeing the rest of the world.  We see the differences in others and the striking similarities as well.  

Please….if you have never done it before…..make it a priority.  Travel somewhere.

Why I am Traveling and Making MS the Cause!!!

 

 

 

What is this ‘thing’ I am doing with travel? How does it relate to MS?

Why is it important?

1. I am going to travel across continents, because I love to travel first of all, and I refuse to let MS stop me from doing what I love.  But I also realize that traveling as an MSer is ripe with challenges that a non-MS person doesn’t have to deal with.  So why am I vlogging my way in China and Thailand?  I want to give all of you a first-hand account of what it is really like to travel when you have physical limitations.  And I want you to find out that you CAN still do what you love, even if you have to modify it a bit.

2. Whether it is art, singing, swimming, rock climbing, writing, cooking or yes, even dancing, I believe that our dreams don’t die just because we have an extra box to tick on our medical forms.   Yes, the dreams may have to change or be altered in some way to accommodate our new energy levels or physical abilities, but they never need to DIE!  This journey is the journey of keeping your dreams alive and moving forward one step, (or plane ride) at a time.

3. So let us think about the challenges.  There are injections in my case that need to be refrigerated, I need a wheelchair to move easily through the airport and especially to bypass standing for a long time in line, which is worse than walking.

As a person with Chronic Illness, I need to think about medicines to pack, the type of bag to bring, the location of the hotels from major transportation, the accessibility in hotels.  Do you need to pack disposable panties? Do you need to bring cooling packs? Am I going to have to adapt that sightseeing trip to visit the Pandas because I can’t walk the 2.5 kilometers it takes to see them all? And on top of it all I need to schedule in rest time because as you know we only have so many spoons!

These are things that might stop some people from even bothering to travel across the world.  (Most of the time I do it alone) But I don’t think any of these little blips should be the cause of not experiencing everything life has to offer.

4.  Okay, you are not a travel buff.  I get it.  But the point is not to only show you how to travel but how to overcome your fear that MS or any other Chronic Illness will stop you from living your best life.  You can do whatever you want to do….regardless of whether you can walk or not, see or not, work or not.  Everything in life is negotiable so if you have to negotiate with the universe to make it happen..do it!  I have always wanted to be on The Amazing Race, but I realize with MS there are plenty of challenges they do, that I cannot.  But I had to back up and think carefully…..why am I so obsessed with The Amazing Race?  Is it because I love the idea of taking a car engine apart to find a clue? NO WAY!  Is it the million dollar prize?  Yeah, that would be very very nice, but again, no.    It is simply the travel.  The idea of getting on a plane with little money and navigating through the next country. And I can do that!  (when it comes to the money part, I HAVE to do that!

You can do your dream too.  It may not be in its original form. But if you can find the essence of the dream, you can feel just as fulfilled.

Now you know why I am doing this thing.  And why I want you along for the ride. The most important part is getting people with Multiple Sclerosis to come along with me and be a part of the journey so that they can know not only how to travel with physical challenges, but how to challenge themselves to live their dreams!

 

 

Another Year

Well it is almost 2018.  Have you reevaluated what you have done with 2017?  Have you been able to accomplish what you wanted to accomplish this year?  As I age I realize more and more how fast time flies by, and how little time there is in this incarnation to be who ever it is we are meant to be.  Your life is being created as you read this.  Every action, or sometimes inaction, is fodder for your eulogy. Your memorial. Maybe it is time to take steps to create that you that wanted to come forth in your teens but you never had the chance or never took the reigns to make it happen.   You only have now and you only have yourself to blame if you don’t do the work.

She says to herself.   Another year. Another bit of time wasted. 

It’s Been Awhile

Yep, yep, I have been off the grid for a bit here.  But now I have something that I just have to share. Today I received my advert that will be in Sybil Magazine next to my column for the ENTIRE year of 2016!

It also previews what I will be doing for the next year….I just read it – whew, that is a lot of stuff!

Tell me what you think:   Like it? Hate it? Love it? Neutral?   I still have time to make changes..

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So with writing the articles and getting ready to kick off this major BANNER YEAR!!!! – I am a bit invisible at the moment!

But OH BOY wait until you see what is about to happen!!!!

Taking a Break from MS Talk!

I think it’s time for me to take a break from focusing on MS.  I say that because even though I am all about not letting it stop me, it actually does when I think about it too much..  Remember those sayings like:

 You become what you think about.  

Whatever the mind can conceive and believe, it can achieve,” Napoleon Hill once said.

“The mind is everything. What you think, you become,” Buddha taught,

Well I don’t want to become Multiple Sclerosis or any disease for that matter.  I have no intention of doing that, so what if, just maybe, I spent the next month focusing on something other than MS – not writing about it – or complaining about it – or letting it get me down in the dumps.?

I wonder if I go on an MS fast, what will I feel like at the end of the month.

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True it is November 2nd,  so I missed a day, but I am going to give it a go.  29 days without the letters coming out of my mouth, pen or keyboard!  I am going to be MS free.

So here is the question, without my faithful companion to talk about, what will I focus on this month?  The world is so big and colorful and bright, the air is feeling balmy and clear, the people on the street all offer different types of expressions,  what have I been missing?

And now that I am replacing two letters in my brain, I need to think of something, one thing that I will work on this entire month and give it as much attention as I do the disease.  I will look at groups to join about it, people to engage with that are involved in it, and find a whole new tribe of folks who know nothing about what it is to live with the Monster.

Yes that is what I am going to do all month.  I haven’t decided on what that focus will be just yet,  after all it is NANOWRIMO so I could use it to write a novel, but I am just not ready for that this year, I could work on my spiritual evolution, that always needs some attention, or I could concentrate on a way to make a difference in this world. Even with my limitations, even though I am only a regular woman, I can focus on something that will help others and help create positive change.

Okay, the wheels are a turning.  I will go and sit under the banyan tree and do a bit of soul searching.download (4)

When I get back to you I will tell you what my focus for the month will be.

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An Angel in the Subway

This morning I was in a particularly vile mood. The reason is part of a long drawn out story and one I am sure you won’t want to hear. But, there I was, not so happy, not so Zen as I wanted to be, and I decided to go my neighborhood Subway (yes we have them in Bahrain) to get a Veggie Delight.

 


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To be fair I am known there. I usually pop in for the same thing after I teach my courses on base, so the workers greeted me with their typical smiles and hellos. But I was still fuming over the perceived injustice I had to endure, and I just wanted to get my sub and go home. That is when the manager, a sweet looking young man from Nepal, came up and shook my hand. “I haven’t seen you for a good time” he said. I told him I had been home to the USA to visit. Then he excitedly shared with me his visit to India. He was so thrilled to be talking about it. His face was glowing. He wanted to tell me that he went to the Prabhupada temple in Mayapur, and his experiences being there.

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He talked about how beautiful it was, and how peaceful. “Even if you go there and you are speaking loudly or angrily you will immediately calm down and the voice will get quieter.” “Yes” I agreed. Not having ever been to that particular temple, I remembered my experience at a spiritual place I had just visited in California. I noticed my own volume was lowering and my body had calmed just thinking about the vibration it held. He talked on and on about how many people visited, and that he himself went eight times on this one trip. He played a short musical piece for me that he heard there.

 

And all the while I felt I was being transformed in a very small but real way. From anger to acceptance and from angst to peace. As he continued, I found myself becoming more mentally attuned with the Lake Shrine in Pacific Palisades, Ca where I had walked around the water, fed the fish and the turtles, and marveled at the gracefulness of the swans who called it their home.

 

cc4af10c1380f5004715147619ced934The feeling of time standing still, the air softening, it was what I needed in that moment. My breath eased, and the fever in my brain cooled. Then the young man said, “When I first met you, I saw you wore an AUM symbol, and other things like that around your neck, and I felt you had the look of someone who is understanding of these things.” I explained to him that I very much enjoyed talking about and reading about spiritual beliefs and traditions. And then I realized what a gift this short encounter was, so I told him about how I had walked into the Subway angry and how meeting him, and him telling me of his journey to the temple, had changed my day.

Before saying good bye we both had tears beginning to form in our eyes. I thanked him, and he thanked me as well. I walked out of the building smiling and happy to continue my day with newfound positivity and strength. Today I learned that angels come in all shapes and sizes, and they can be found in the most unusual places…even in a Subway restaurant.

I Challenge You to: PERSEVERE!

 

 

PERSEVERANCE.

Oh yeah, the big P word.

I have to admit it can be my kryptonite so I know what I am talking about here.

The very worst thing you can do – whether it is MS related, life related, and love related is to stop.

Stop moving

Stop talking

Stop enjoying

Life happens to us, or with us.  MS is going to be there regardless of what we do, or don’t do, and it is easy to throw our arms up and just say it’s too hard now.

I went through a spell not long ago, when the weather where I am, was over 110 F/42C and I literally couldn’t go outside.  The pain was intolerable, the fatigue was horrible. I was losing eyesight, and patience, and I am not going to tell you that I just breezed right through it.  It is very depressing to have to be a prisoner to an AC unit…but that is how I was living.  So yes, I felt like, “this is too much, I can’t take it” I will just sleep my life away.

And guess what?  I DID!!!

Ooh ooh that isn’t supposed to be the moral of this story!

 

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The point was, that I was actually missing out on so much during that time and I am sure there were things I could have done.  I could have painted, or written or crafted.  I could have read inspiring books. But I didn’t.

There is nothing wrong with vegging out in front of the TV from time to time…we all need that.  I think people with chronic illness sometimes have to have it when the pain is insurmountable. But if it become our life, then I think we are heading down a dangerous road.

I had a friend who committed suicide because of the pain of MS.  She felt like she couldn’t go on.  I understand. But the world, and her friends and family, lost a beautiful soul with much to give, because she gave up.

So how do we combat this little problem?

 We PERSEVERE.

I am so serious about the word I had it tattooed in white ink on my wrist so I could see it everyday.

We keep going and we find something useful that lights us up and gives us strength to move forward.

 

What do you love?

Is it cooking, writing, listening to music?

What could you do with that?

What gifts do you have to give the world?

Oh you think you don’t have any?  Trust me we all have them.

 

Even if you have no arms or legs that work – Can you speak? Can you tell stories? Can you sing?

 

There is never, ever,  a reason to give up completely.

NEVER.

The irony is that the treasure lies just beyond the point of giving up.  Right at the place where you feel all is lost, you only have to cross the bridge and find your pot of gold.

 Haven’t you watched enough movies to know that?

 

Nobody  got anywhere by saying, I CAN’T or I WON’T !

Drop those words from your vocabulary because I guarantee you, they are not doing you any good.

And while you are dropping, you can erase…………….

                                          BORED!

at the same time.

If you ever find yourself dealing with the dreaded B word, remember this:

That is why you came to earth with an…

 

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Turn off the TV – and IMAGINE.  You might be surprised at how fast you have created something to do that you truly enjoy.

Perseverance is the key to achieving every goal and reaching every dream.  Whether you have Multiple Sclerosis or Fibromyalgia, Lupus, or the flu, there is no reason for you to let life just fly by you as if you were it’s passenger – scoot on over and get in the driver’s seat.

You have places to go a people to meet.

Hey I rhymed!  Have a good one!

 

 

Foolish, Foolish Me!

Photo on 10-18-15 at 13.48

 

I am amazed today at how foolish we human beings can be.

Not just the folks who do those stupid tricks when they were told, “Do not attempt to do this at home.”

That’s easy. We all know how foolish they are.

I guess I am thinking more about the rest of us. Us, well meaning people who are living our lives, trying to do the right thing and at the same time often overlooking the faults in our own behavior.

I will give you an example.

A very good friend of mine has been trying to meet with me for coffee or just to talk for a LONG LONG TIME.  Now, it’s not that I don’t love her, because I do, or that I was angry, because I wasn’t. She didn’t do anything to cause me NOT to want to see her. In fact she has always been extra sweet to me.

I, on the other hand, was the one shutting the door. To her credit she never gave up and continued to wish me well on Facebook.

But this year on my birthday I promised myself I would  take a good long look at my ‘ugly side’.  So here is what happened.

We went for coffee and what do you know…….

Both of us had been going through things that were trying and difficult. Both of us could have used some support.  Both of us needed a friend. And the sad thing is , we were both going through it, blocks from each other, and alone.

What did I learn from that?

I admit it.  I was foolish.  

What ever it was that kept me from picking up the phone or sending that text, was not only foolish it was just plain WRONG.  I can’t use depression or insecurities, or “I have been busy’ or any other excuse because that is not how I should treat a good friend.

Lesson learned.
Sad for the hole it left, but happy that it has been healed.

If you have let someone slip away because of neglect, or anger or because you are just to darn busy,

Make the call, 

write the email,

go and visit. 

Don’t let special people in your life simply fade away.

Make it a point to reconnect with one  friend or loved one today.

Not only will it make you glow,

You might just be the medicine for someone else’s soul.

 

 

 

 

 

It’s My Birthday, but I got no cake.

No Birthday Cake!

bday cake

It’s my birthday and there are no calls, or gifts, no party or even, my nemesis, that big beautiful sugary-icing birthday cake.

But whooow there, cowboy, calm down!

Don’t feel bad for me just yet.

It is not because everyone on Earth forgot my birthday, it’s because early yesterday morning I sent out this message to all of my family and friends

To everyone:

I will be unplugging and going into solitude all day tomorrow for a full day of regrouping, refocusing and renewal. The phone will be turned off as well. Thanks for understanding.

 

A full day of The 3 Rs

 

Every now and then I feel the need to use the day of my birth as a way to commune with my spirit and this year I am in big time need. The past few months have tested my strength, I have felt lost at times, sad at others. My search for meaning and a new purpose had me promising to create courses that would impact people’s lives and help them build a better tomorrow.  But, in the process my purpose became dim.

I have two goals – First, I want to help people with Multiple Sclerosis have a positive, can do attitude, I want to introduce Art as a healing method…and Second, I want to reach young teens, mostly girls, who are still trying to figure out who they are and how to listen to their inner voices and follow their dreams.

 

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These are my peeps… the ones that keep me up at night wondering how HOW, HOW to make a difference for them?

After writing the note, I had a full day of teaching to do. One of the joys of my life is to sit in front of a class of smart, curious, charged up students who really want to learn. I was teaching a university class called, “Myth in the World.”  Lots of introspection, self analysis and discussion involved. And sadly, yesterday was our last class.

After most of the students had gone, a young woman walked up to me and told me I was her hero. (we had talked about The Hero’s Journey by Joseph Campbell) She said, “I want to be you.” (I took that to mean later on in life when she finishes her degree. Etc.)

But wow! I was floored!  What a heavy responsibility there. 

In all modesty and fairness, I have to admit, it is not the first time I have heard that or some variation of it, from students, both young and old. Each time I mentally give the same response.

“You do NOT want to be like me!”  

But her saying that confirmed one thing; how much I really needed this 3R day.  The words smacked me upside the head, and I had to face the fact that something I was doing or saying, or the way I was doing or saying it, resonates with people who find it inspiring.

I get the jitters just typing the word inspiring, because I so WANT to be inspiring, I WANT to be relevant, and I want to be useful.

But I also want to know what it is that they are connecting to, because you see, if I can figure out that missing piece, then I can finally create what I have been wanting to start… an offering that motivates my peeps.

And so today I have been sitting.  Meditating. Being alone with myself, listening to my inner voices, and as the day grows long I am still here, waiting for answers.

I told my sister last night about the student, and she gave me a sweet, but definitely biased speech about how I AM inspiring and how I have done so much with my life, etc.  (My sister, bless her heart, is my #1 fan!)

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She said, “It’s because you are FEARLESS!”  And I knew she had that all wrong, because truthfully I am scared of well, a lot.

“Okay then, that means you’re courageous” She answered.  “You go ahead and do things even though you feel that fear.”

“Yes, I do”, I thought, but I would call it more fool hardy than courageous. Save that badge of courage for the guy who rescues children from burning buildings.  I am no lioness.

I am the other big cat.

Tigers go on the hunt alone, they are determined and stubborn, and even though they love solitude they are not unsociable. They are playful and self-sufficient at the same time              .

tigger

 

Sadly, though, my Tigger spirit has been waning recently.  Not much bouncy fun happening here.

The Question is: What took the tiger out of my tank?

 

So I continued to sit.

Late in the afternoon I started thinking about my first attempt to create one of those courses online…and, what a dismal failure it was.  Not that people didn’t sign up for it, or even begin to work at the modules. They did. No, I have no one to blame but myself for this one. The Apothecary Cards

 

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The concept was good, people with MS could creative their own affirmation or positive message cards to put on their table or fridge. To inspire (that word again) and encourage them to keep pushing even though life with chronic illness is difficult.

 

For sure, I was really on to something cool.

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But all the way through the stages of Week One and Week Two there was an annoying little niggle that kept me from even completing what I had offered.

How sad. How tremendously sad.

And, what a lost opportunity for everyone.  I said I wanted to help and instead I came off like a flake.

I thought about that class a lot, and in a moment, I realized what went wrong.  I was not being AUTHENTIC!  I was not doing ME. I was copying the style of a mentor, using her directions and style. Her delivery was seamless, and she had it so polished, (which I guess, is why I was stealing it…instead of trusting in my own gift.)  I figured hers was better.

So in essence, The Apothecary Cards, BECAME her course, and I wasn’t invested in it at all.

I may be different, unique, eccentric, etc.  (Words people use to describe me) but dang it, that is who I am. Too late to be a different version now. That train left the station ages ago.

And if I can’t be true to myself, then I am not really sharing anything of meaning, am I?

DRUMROLL~~~~~~~~

Wait for it~~~~~

 

My AHAAA moment had arrived!!!!!

After that little revelation I started envisioning my courses as MY offerings. Giving me the chance to do the things I do best, like listening, supporting and encouraging.  Oh naturally there is art involved, there is ALWAYS art involved…and deep digging spiritually too,  but I knew my task was to save the courses to save the courses with a hefty dose of Gypsyfay!

Obviously, this means I am back at square one: 

  • Start over
  • Figure out what my PEEPS want from me,
  • Why they would take classes from me, and
  • What is important for them to learn.

Now I feel better.

 

Photo on 8-26-15 at 4.00 PM

Still no cake.

Oh well, there’s always next year.

 

 

Did My Time in Solumedrol Land!

hospital roomAnd I have been unplugged!  So it’s day three and I have to say that this round is not as bad as the ones I remembered from before. In fact, if I could bottle the feeling right now, and of course administer it without any other side effects, this would be a permanent good thing!

Came home and worked on my art, non-stop, drew and drew and couldn’t stop!  did a little sketch for my sister, did about 5 for my business.  I organized files, ate minimally, not because of nausea, or vomiting but because I haven’t been hungry…what is going on?  I have never had such a pleasant trip to Solumedrol-Land before.

Usually the S word sends me into a spiral of fear and remembering how horrible it makes me feel…like I was at death’s door at times.

But wowza if this is the new generation of the drug..I have nothing to fear anymore.  It’s like a creative high that I imagine all the wonder artists, writers, etc have when they are what you call ‘prolific’

I want to be prolific too.  Having this reaction to Solumedrol makes me wonder if this is how my brain is supposed to be working on a normal day…where I have energy, and I am clear headed and I have ideas that I can actually organize in a planner.

Is that what MS has taken away?  Everyone is telling me to hold on cause the crash is coming, and I probably felt this way before while I was having the IVs.  I don’t know, maybe I don’t remember, but I do remember the ‘hell daaaays’ – if I can avoid those and continue at this pace for another week…I can probably write the great novel, clean the disaster in the living room, illustrate a kids book, and have beautiful online courses up and running.

Don’t tell me its not true. I want to stay in my bubble for just a little while longer!

But seriously – if anyone knows of something that can be prescribed for foggy MS brain that will allow me to be this productive please leave a comment! Or if you have had this experience and no crash afterwards I would like to know how you did it.

What did You Want to Be When You Were A cHiLd?

images (3)Last night I was reading an article by the wonderfully awesome Leonie Dawson www.leoniedawson.com and she had asked the question,

What did you want to be when you were a Child?

 

Well the answer for me was a lot of things!

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An artist was on the top of my list, along with a writer, a traveler, a famous rock singer ( I will explain) an actress and a nun. Never mind that I was the most timid pup in the litter…those were my dreams for my future.

 

She challenged me to do some serious thinking about what I have achieved….and the funny thing is even though I took a lot of twists and turns and even some detours…I ended up doing just about what I always said I wanted to do.

 

When I was a small girl I knew three people who would change the path of my life forever.   One was the son of a woman who lived next door. He had some type of job in Japan…Now I have no idea what it was, it was that he was living in Japan that fired me up. Then, I went to school and met a girl named Susan Shelton, her dad was in the military and she had been born in….you guessed it JAPAN!   I think that sent me off on a quest to do, and be, and live, everything Japanese. I ABSOLUTELY had to get to Japan.

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But more than them, was my Aunt Ada who lived next door. I had no idea at the time how similar our lives would turn out to be. This was the 1950’s and 60’s and women who were divorced….OH MY GOD! That was a deep, deep, dark secret to be hidden in the crevasses of a deeper darker canyon somewhere.

“Dear we don’t ask about things like that”

But my Aunt Ada was a trailblazer…I have no idea how she had money, yet she did, and I have no idea how she traveled so much, but she did. Belgium, Paris, London, Rome.

 

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And for each place she visited she would come back with a souvenirfor me and an incredible story to go along with it. The blue cashmere sweater from Ireland was at the top of my list. My favorite hours were spent with her playing Parcheesi and looking at all of her gorgeous plants.

images (4)She loved art, and nature, and maybe not so much kids, but she was truly my heroine and I wanted to be Just like her when I grew up.So I can mark the spots where the travel bug started to nip and my heels. But what about art, and writing, the convent, and being a famous rock star?

Like other children who just seem to come into the world with certain gifts, or desires, I am pretty sure these were hardwired into my being. Maybe I was like a lot of other teenaged girls who looked at the movie star pictures and thought ‘I want to be a part of that world’ or maybe not…truth is I have never asked anyone.

 

But here is the thing I know. Despite all of my sidetracks, and u-turns, and hopelessly lost moments, I ended up doing many of the things that I wanted to do when I was a little tyke.

 

Has it made for a magically successful life? Not in the terms of how a lot of folks would measure that. But has it led to a full and adventurous life? You bet! No grass has grown tall amongst my toes.

 

I have hit almost every one of those targets – save the rock star. Probably because of dogged stubbornness. Sometimes dogged determination played a part too, but mostly I just don’t know why.

I realized someplace along the way that you cannot take the child out of the adult and live a happy life. You cannot un-program what was added in the creation of the spirit. No need trying. That child, (even if it is you) will be who she knew she was here to become. There is no stopping it.

I may not have done the things I wanted to do at eight as I had imagined them then. But I somehow managed to work most of them in.     I still have a few things on that list that I have not achieved. In my heart and soul I am pretty confident they will happen too, because, that childish spirit still remains, albeit coupled with a salty serving of reality.

And now for the bit about me becoming a rock star.

Yes, that has not happened. I would venture to say that it probably never will. You see the one thing I recognized as I was growing up was that I was missing a vital ingredient for ‘rock star’ status.

I couldn’t sing worth a lick.   Not all dreams are literal. It could be there is an essence in that dream that wished to be expressed. So when your son says he wants to be Superman when he grows up…he might be on to something.

Provided he knows how to fly!

 

P.S. I am currently working on the aspiration to become a nun….

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I will get back to you on that one.

 

 

Time to Talk about Time

IMG_4477Or…..you could call this time to confess.

I made the cards a year ago for The Color Of Woman Teacher Training by Shiloh Sophia http://www.colorofwomanschool.com

 and at the time they were absolutely spot on about where I was in my life and what I had planned to do.  Nice stuff, just read them….

FAST FORWARD – 1 year and 5 months

Yeah you guessed it, none of these lofty goals have been acheived.  I’d start and stop and start again and then finally I gave up!

Yes I said gave up….so life has been passing by, another candle coming up on my cake and Lord knows I am not getting any younger or more intelligent.   Which means every bit of the brain that I still have working really needs to do just that, start working.  I mean it is my legacy I am talking about here.


IMG_4476
  IMG_4479 IMG_4480Have you ever really given thought to what legacy you will leave in this world?  If you are reading this and you are in your twenties, or thirties, or even forties you probably have better things to do ….yep that’s what YOU THINK.

If you have past the 50 yard line, then hmmm, wanna take some advice from someone who doesn’t do what she knows she should?

YOU BETTER GET CRACKIN’!!

I have no idea how many days I have on this earth to do what I feel i need to do, but no one does.  No matter how young or old.  And time sneaks up on us like a villian in a B movie…first you think you are perfectly safe and cozy, then BAM there it is ready to take you out.

So I am writing this advice to me, and you, and our future selves.  IMG_4482

Do the thing you think you want to leave as your legacy.  Do it now if you can.  And if you can’t do it now, then at least start making steps towards it, cause that clock is ticking and if you don’t work on it you will be the same you  10, 20, 30, 40 years later sitting in a dirty, old rocking chair having that regret that every sad, miserable, dying person has –

It’s not the things  they did they regret,  it’s what they didn’t do.

Enough…I have to get to work.

Feel The Fear And Do It Anyway – AND DO IT NOW!

I have no intention of debating the appropriateness of the word God in this quote. I am just going to say you can substitute whatever word you need to use that makes the same point. Universal force, Allah, Jehovah, etc.

COHELO

The reason the I grabbed this quote by one of my very favorite authors (you know THE ALCHEMIST)  is to clarify the feeling I have been feeling recently. Dissatisfaction with – hmm- just about everything. I have to admit, this is a familiar place for me. As a writer and an artist and self-identified outsider, it just seems I was cursed/blessed with this little niggling urge for change that won’t go away.

I have waited ever so impatiently for years to have a sense of satisfaction that other people seem to feel with life. But this thing persists in me and from time to time it stirs up and causes a heaviness in my body, that descends  like the air before a Midwestern storm.

It has often been the thing that fueled my insatiable wanderlust. Or my penchant for changing careers…(although a lot of the job-hopping had to do with the fact that I wasn’t supposed to be doing what I was doing with my life.)

And now it is banging at my door again. Something is trying to tell me I need to make changes. Drastic, irrevocable changes. Not in a year or two but NOW. I need to move forward, change everything, step out in courage and go full force into the unknown like I always have.

“Okay so what? Stop blabbering about it and just do it”, you say.   And so I will,-  But:

  1. I am getting older
  2. I have Multiple Sclerosis
  3. My energy is not what it used to be
  4. I need more money
  5. It’s too hot
  6. I’m not quite ready
  7. It is still too hot

 

 

Oh, I could go on. But the truth is. little old intrepid me has started to feel FEAR.

Fear of moving forward.    In fact, fear of moving at all.

And that reminds me as much as anything that it is time to pull up my big girl pants and do something extraordinary, something completely, mind-blowingly  FEARLESS.

Because if I start giving in to the fear of not being worthy, healthy, strong, or adaptable, I will become the embodiment of all of those quicker than you can say Howdy Doody!

I know as well as anyone it doesn’t take much to squeeze the life and energy out of a person. We do it to ourselves all the time. I have seen it happen to many in my MS community, and I have seen it happen to many friends my age who are not facing chronic illness.

I can sense it happening to me.

Which  is why I realize I am in a fight for survival. Not the survival of a terminal illness, but the survival of my will, character, and spirit.

Yep, you are darned right I am dissatisfied with the way things are in my life right now.

I have become too comfortable, it has gotten too easy to just let time go by without really trying to do something meaningful, adventurous and fulfilling.

It is so temping to let the clock tick unchallenged. In my world, TV, movies, and the Internet are mortal enemies. I have to slash them before they conquer me.

You bet that dissatisfaction is persisting, and it is telling me it’s time to make changes and move forward.

Do I know exactly WHAT changes I need to make?

I have some ideas, some BIG ideas.

But what needs to happen here is movement towards making those ideas become reality. They cannot just remain BIG ideas or they will forever be lost…and one day, they will be on that list of the things I REGRET not having done with my life.

Where is this all going to lead? Hopefully towards a few moments of satisfaction when I don’t have constantly feel that urge to move on, and blow up everything in reach, simply for the sake of massive change.

Then again, I have a suspicion that no matter what I path I forge, no matter how I decide to shake things up and cause a stir, as long as I am breathing, I will always have a bit of Kali, the destroyer, Yemaya the Yoruban goddess of the sea, and the independence of Artemis running through  my blood.

To Be Continued…………

 

The Challenge: Self-Like vs. Would Change!

So the challenge for today is to answer the following:

  1. What do you especially like about yourself?
  2. What would you change if you could?

Let’s start on the positive…

What I like about myself.

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I like that I am 62 years old and can still rock weird glasses, tattoos, dreadlocks, and Dr. Martens. I like that I don’t do it to be young or trendy, I do it because it is who I am.

I like that I wear 13 silver bracelets on one arm EVERYDAY, and a silver cuff given to me by a Long Neck Karen girl named Moo-chi on the other. I like the fact that I really hate gold and diamonds, but I love silver and semi-precious stones. Which means I like that I am not pretentious. Not that everyone who likes diamonds and gold would be.  But if I said I did, I would be lying.

I like that I really don’t know anyone like me. I am an endangered species, a one of a kind. A precious treasure.

I like that when I truly, and I do mean truly, set out to do something, I do it. Law of attraction, stubbornness, obsessive? I don’t know which of those is the reason, but it works for me – when I TRULY work it.

I like that I just got my DNA done and I am an incredible mix of people from all over the world. The Baltic, The Mediterranean, Northern Europe, West Africa, North Africa, Great Britain, India, and the Western Semite countries.   All wrapped up in one 5’1 ½” person.

I like the fact that I never want to stop learning, or teaching, that I am an incurable researcher, and student of life.

I like it that I love animals, and they love me.   Sometimes, I think I like them best of all.

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I like my face, my brain (not so sure about the MS part of it) and my ability to keep going when I know I could have, and maybe should have stopped long ago.

I like my continual search for spiritual self-awareness. I like that it defines a large part of who I am. And I like knowing that I was probably meant to be a nun or some type of monastic…even though my marriage record belies that fact!

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I like that when I go to the D’Orsay Museum in Paris, I can stand in front of a Van Gogh and unashamedly cry real tears.

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I like my temperament, not my temper, which I must say has mellowed with age to almost non-existent…

Except when someone cuts me off in traffic

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I like that I have been blessed enough to have such a wonderful supportive family, who I feel love from everyday.

 

And, I really truly like knowing that I have so many things to list in the like column. There were times in my life when the LIKE list would have been a couple of sentences.

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NOW, for the “What would you change?”

 

Okay… first of all I would get rid of this nasty little thing called ADD. I have the dreamy non-hyperactive kind. The kind that makes me less organized that I would like. (Oh, who am I kidding? A desk with more than two papers on it throws me into a panic!) b0eb834f19deadcdec4d065d4ac0c5d3

I would have a place for everything and everything in its place. (I do try, I really, really do!)

I would not procrastinate. Or have twenty projects going at the same time.

I would be a whiz at self-promotion.

I would know how to sing without gathering all the dogs to my front door!

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I would be more thoughtful of other people.

Less focused on pain.

More forgiving over long gone hurts.

More in touch with my heart chakra.

I would work harder.

Sleep better.

Eat better.

Exercise more.

I would keep my mind on the infinite power of creation, and I would give thanks everyday without fail.

There you have it. My two lists.

 NOW IT’S YOUR TURN !

I don’t like feeling all alone out here!!

If Money Were No Object?

Someone asked me what I would do if money were no object…and I love this question.

It is probably not what you would think at all.

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First thing I would do is put on a backpack and travel to every country in the world. First just to set foot on the ground and next I would travel to all of the spiritually significant places I have not visited so far. I would somehow spread awareness about Multiple Sclerosis and  be an international  spokesperson for the cause!

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I would buy a two bedroom cottage somewhere in Mexico, Spain or a South American country….(because of the Spanish) a place where it never gets too hot or too cold, and an Old English Sheepdog. I am pretty sure I would have a live in maid., as I really am not good at cooking and cleaning.

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She could take care of my dog, when I am away. A macaw, an African gray, probably a couple of cats..

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I would bring home my treasures, and then I would probably spend some time teaching teen aged girls art, or life lessons.

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I would donate money to MS research of course and animal welfare…I might even start a shelter for animals

I would spend my days without TV – I would write, sit in the shade, paint and meditate.

If money were no object I would hop back and forth from the USA to Bahrain so that I could visit my daughters and their families a lot.

That’s it. No my ambitions are not lofty, but they are mine.  And that’s all they need to be.

If money were no object what would YOU do?

“I have always imagined that Paradise will be some kind of library.” — Jorge Luis Borges

To be fair, I am trying something new because left on my own I sometimes just don’t have a clue of what to write.  So I stumbled upon this site by    Marelisa Fabrega

http://daringtolivefully.com/journal-prompts

I love that it offers  119 journal prompts and I decided to randomly pick a number between 1 – 119 and then write about whatever that prompt says.  And…drumroll please…I got;  “I have always imagined that Paradise will be some kind of library.” — Jorge Luis Borges

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Considering that I don’t think much about ‘paradise’  since it is in CAPS then I am assuming it is the BIG PARADISE in the sky type he is talking about, which means I am really going to have to stretch my imagination about this one.

Does anyone really think about what it is like on the other side?

I honestly haven’t been concerned with the other side because it seems like an exercise in futility.  Everyone ends up there, or not, and we don’t really have a choice of what it is going to be like, or do we?

So just for the sake of the blog, I will play the game.  I imagine it to be an art store with all the supplies you can take anytime you want, in a little town with lots of charm and walking streets, no cars.  I suppose it can have a coffee house too, cause I kinda like my coffee.

No MALLS….antique stores – yes.

No grocery stores, no office buildings, no government – lots of peace and quiet….no one is allowed to talk!

Okay, I’m done…looks like my paradise is more about NOs than Yeses.

But I do have to agree with Jorge…a library of unlimited books would be AMAZING!

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!!!

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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!

 

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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

 

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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)

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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!

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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.

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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?