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.
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!
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?
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.
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…………….
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…
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.
Hey I rhymed! Have a good one!
No Birthday 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
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.
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!)
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 .
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
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.
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?
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.
Still no cake.
Oh well, there’s always next year.
And 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.
Who Gets MS?
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.
Indian from India
“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.
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.
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:
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.
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. :/
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.
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!
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!
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?