Sunday, April 26, 2009

1000th Post

I've known for some time that my 1000th post was coming up and I wanted it to be something meaningful, so with that in mind, I wanted to share a story about Hope.

You see, this morning, I got up earlier than I normally do and put on this t-shirt (above) to go out to a local park and volunteer at the BC Multiple Sclerosis Society's yearly fundraiser, the MS Walk. But let me back up a little, so you'll understand why.

You see, just over a year ago, after extensive testing, I was diagnosed with Multiple Sclerosis. For those of you who don't know what MS is, the easiest way to explain it is like this: It's an incurable and life altering disease. What happens is the body's immune system somehow gets confused and thinks the body is under attack and so the immune system kicks into high gear. When this happens, the immune system eats through the protective coating (Myelin) of the nerves in the brain and spinal cord, leaving them damaged and exposed. It's like a rat chewing through a telephone wire and then trying to get a call signal to go through the wires like it normally does. It doesn't work. This means ANYTHING in the body, controlled by nerves, which essentially is EVERYTHING can be affected. Depending on how bad the damage is, the nerves can some times recover (though they'll never be as good as they once were) or they won't and the damage becomes permanent.

MS is a highly complicated and individual disease. No two people are alike and no two disease patterns are alike.This means when you ask a doctor what the prognosis is going to be, they usually said "I don't know." If you have MS, you hear it alot. It's not that the doctors are being lazy or keeping anything from you, it's just that they honestly don't know. When you have this disease, you learn to live with the certainty of uncertainty.

There are four kinds of MS and theoretically, if you had to choose which type you had, you would want to have relapsing-remitting. (RRMS) This means your MS would have times where the disease is active and times when it's in remission. If you have this kind of MS, you can take disease modifying drugs. (DMDs) These are NOT a cure, but can help reduce the frequency and length of relapses. There's no real way to know if they are working or not-it's one of those things where you just have to trust the science.

The other three types of MS mean your disease is in pretty much a constant state of doing damage and the toll on your body just mounts. If you have anything other than relapsing-remitting MS, you cannot take the disease modifying drugs-they won't help.

So...with all that said, since my diagnosis, I have been through the wringer with treatments-most of which have not helped and actually made me sicker. At one point, I actually developed aseptic meningitis as a side effect from one treatment. I walked around for 3 weeks with my head literally killing me and didn't realize that was what was wrong. (Apparently, I've got a very high pain tolerance.)

Initially, I chose to only share my diagnosis with what I think of as my sacred circle-my closest, most trusted friends and loved ones. When something this devastating invades your life, there's really no room to worry about other people's feelings about what's happened to you- it's all you can do to cope with your own. You need time to get strong emotionally before you tell more than a few people and it's essential to circle your wagons.

I was also afraid that if word got out, it might affect my professional life. Art has been a great coping mechanism for me through the worst of times and I knew that if invitations to do the work I loved stopped happening because people heard I was ill and started making decisions about what I could and couldn't do, it would absolutely break my heart and I really didn't want anyone to feel sorry for me or to start thinking about me as "that girl with MS." because I am so much more than that.

Now here's the part about hope, if you've read this far:
Everyone I told, with the exception of a single person (whom I choose not to judge) stepped up and let me know without a doubt that they had my back.

You see, when something ugly like this happens to you, the gift in it all is that you learn in the deepest and most meaningful ways who loves you. You get to really understand what you mean to the people in your life.

People in my sacred circle have come with me to appointments and sit there holding my hand while I've had painful treatments or heard difficult news from my doctors. They've called to check up on me, sent crazy emails to make me laugh or to say "That sucks!". They've filled my mailbox with thoughtful gifts, offered prayers, driven me to the hospital so I don't have to expend precious energy dealing traffic, or just simply listen when I've needed to vent. They have protected and cared for me and my family in every conceivable way.

There are two reasons that I know I can weather this storm in my life: I have all these angels around me, lifting me up and I have the BC and Canadian MS Society supporting me. The work the MS society does is vital to MS patients and their families. They offer MS education resources, a wide variety of support and advocacy services and most importantly, they work tirelessly to find a cure for this disease that irrevocably changes our lives.

This is my second year participating in the MS walk. Through the generosity of friends and family near and far who were "in the know", my team was able to raise well over $1000 this year and spent today doing the 5 km walk on my behalf. That's pretty incredible, given the state of the world economy right now. It says alot about how much my peeps and their friends (many of which don't even know me!) care.

I walk because I know how blessed I am. I feel it with every fibre of my being and it's important to give back. I walk because I know there are people out there who do not have the support system I have but I also know that no matter what, the MS Society will be there for them because no one should have to go through something like this alone.

This is the stuff that HOPE is made of. It's what keeps me strong. Michael J. Fox, a fellow Canadian, said it best when he spoke of how he thinks of his Parkenson's. He said "Everyone has their own bag of hammers." It's true, we all do. Mine just happens to be MS. I look at him and he's a shining example of how to deal with something ugly and hard with grace and class. Yes, it sucks-I'll be the first one to tell you that-but it is what it is and so there's nothing to do but move forward. I'm still working and laughing and living my life-it just involves an insane amount of visits to the hospital now and a medical team large enough that I feel the need to assign numbers and hand out hockey jerseys, but I'll deal.

So the proverbial cat is out of the bag and now you all know. The funny thing is that you would never know by looking at me, I promise you. MS is often invisible, which is both a blessing and a curse. I started chemotherapy a week and a half ago (a drastic measure to try and get my MS under control) and today, at the walk, not a single person would have guessed it.

Everyone had a story about why there were doing the walk and somehow, basking in the sunshine, in the park on a beautiful spring day, there's some comfort and healing in the sharing those of those stories.

For more information about MS, please visit the Canadian MS Society.


halowrites said...

I know I have told you this before, and I know I will tell you it again (and again)-- you are amazing. your strength, your determination, your beautiful spirit: it is such an inspiration. :)

much love to you. xoxo

sherry lee said...

Bless you Lelainia ♥
We do indeed all have our own bag of hammers (MJF said it so well). It's how we use those hammers and what we do with them that matters most.

It always saddens me that we often lose "friendships" or relationships because our lives change in a major way. And it is at times like this that we found out not simply what we are made of, where our strength and spirit carry us, but where the weaker links lie in our lives. It seems a "bad" or sad thing at the time but in fact it is a necessary re-evaluating of what and who matters most in our lives.

Sending you hugs and blessings as you traverse this journey. May the wind always be at your back.

Anonymous said...

I continue to find you particularly awesome -- never mind the stupid MS -- you put beautiful art into the world, you still do more on your bad days then most people do on their best days and you make my life better for being in it.

I need orange said...

What a rotten thing to have happen. I hope that the docs and researchers will find something that works better to help more people.

I know next to nothing ... but I have read that chemo can make a huge difference, sometimes.

Sending warm thoughts your way.

bettyann said...

Thank you for sharing with us..I worked in the past with people who had ms and no it did not define themm I was fortunate to do a work-shop with you and you helped me to begin my journey in art..peace be with you..take care

Tina said...

Yup, we've got your back! You're a fabulous strong creative beautiful woman. I'm honored to count you among my friends.

Sharrin said...

Thank you for sharing this with your blog fans. In everything you do - you are an inspiring and amazing teacher. Sharing your personal journey in this way is just another example. My very best thoughts and wishes are with you . . .


Heather said...

I hope you know that even though I am far away I do still have your back! I am sending you warm thoughts all the time, I hope you can feel them and as I told you at ArtFest, sick or not, you are and will always a member of the Portals team. I'll check in with you next week when I am back on line. Have a good weekend and think positive!! xoxo

karen said...

Thanks for sharing all your edges--tattered and smooth--and showing by example that they are all art!!
~Karen Dinino

Anonymous said...

Lelainia- In true fashion you do a wonderful job of explaining and then making everyone else feel better when we worry about are a very special soul.

Vickie said...

I've been lurking in your blog daily for a few months now. I had to finally comment. Two years ago I was diagnosed with MS. I'm glad that you have a close group of friends to support you. Stay strong.


TheFairyyellowbugQueen said...

Lelainia, I can't figure out how to do a direct email, but you know me from the atc vancouver group (I'm Jen's mom). I have had M.S. for many years. I wanted to share a couple of hints/ideas for you: l. live your life one hour at a time, not one day at a time, and 2. around the equator m.s. is unheard of so there's the idea that vitamin D plays an important role in prevention. Take a good multi-vitamin every day and add extra vitamin D. Hugs to you, Norma

kitty said...

Lelainia, I just stumbled upon your art blog and enjoying it very much when I came upon your 1000th post re:MS. I was diagnosed in March of 2007 @ 47 yrs of age...old normally for MS, but I know, with every fiber of my being I've had this since puberty probably....explains alot. I am doing fairly well. Fatigue is my biggest obstacle..are you on Rituxin? that is what I'm taking as all FDA approved meds did not work for me.....I am amazed @ all you accomplish in spite of this crappy diagnosis. I am so tired, my creativity is nil and when I'm not quite so tired, I feel the need to do for my family while I can. Keep the faith!!! Lots of good stuff in the pipeline!!