riding the dragon …

this image was created by Kevin, age 10 ~ THANKS, Kevin!Twenty years ago today, a brilliant neurologist told me I had multiple sclerosis(MS).  It was a Monday.  Not the best Monday I’ve ever had.

Over the years, I’ve figured out that the doc was wrong.

I don’t have MS.

My body might – I don’t.

Some days  MS is the best thing that ever happened to me.      Some days it’s not.

For those who aren’t familiar with MS, (according to the National Multiple Sclerosis Society)  it’s a “chronic, often disabling disease that attacks the central nervous system, which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. Today, new treatments and advances in research are giving new hope to people affected by the disease.”

There are three kinds of MS: relapsing/remitting; secondary progressive and primary progressive.  My body has secondary progressive.

As mentioned above, if you brought 20 people who have MS in their bodies into a room, you’d probably witness at least 20 different manifestations of it.  MS seems to like being different in each person it chooses as its host.

In my case it looks like this:

  • The skin from my waist down is numb – which means I can’t feel water or my razor.  It also means I have to send very deliberate requests to my legs when I want them to move, hence the cane;
  • I get tired very quickly – and since I don’t have a  battery meter like my IPod,  I don’t always know when it’s close to running out.  So when my battery goes out – it’s out and I have to stop what I’m doing;
  • my cognitive skills are less than what they once were – which shows up as mixing up numbers/words and don’t even get me started on the time I wrapped my remote control in foil & put it in the freezer (STILL haven’t found that salmon!);
  • my peripheral vision is shot;
  • I get to use a catheter every time I … well, I hope I don’t need to go into too much detail on this one;
  • when I get too tired or overheated I lose the bottom half of my vision (this is called Utoff’s Syndrome);
  • and several times a week I’m completely paralyzed from the waist down.

Those are the less-than-preferred parts of my MS experience.

Some of the gifts from the MS in my body have been:

  • I’ve learned to ask for help AND accept it as given;
  • I make healthier choices about how to use my finite energy;
  • I get to park closer to the door at stores (and have gotten some awesome concert seats!);
  • and I’m always ready for Plan B (or C or Z).

Even if it doesn’t look like it on paper,  the gifts of MS outweigh the inconveniences – for me.   So this day is a celebration for me.  I plan to practice my yoga, pray, play with my dog & her visiting canine cousins, make some art, nap a lot and go out to hear some dear friends make music tonight – or not :).

MS is a dragon I can’t slay.  I sure can ride it though.

We’ve all got our own dragons.

How do you ride the ones you can’t slay?

16 thoughts on “riding the dragon …

  1. This is a hard one to reply to, because I am in such awe of your strength and grace as you ride, that I am left ALMOST without words. I suppose the thought that I am left with, in answer to your question, is that my dragon plays with my mind rather than my body; toying with me, telling me that I COULD slide right off and end this ride, if only I were a better person, making better choices, using my energy better, etc. etc. etc. So, knowing I will probably never really slay it (as I know I can NEVER reach its desired state of perfection) I just keep trying to make friends with it, offering nibbles of legal medication & reading soothing stories to it, to at least settle it down a bit!

  2. I for one am honored to call one of the most amazing women I know, my soul sis and friend!! I continue to be in awe of your strength and your gratefuless. I choose not to slay my dragon, but to be present with it everyday, honor it and thank God for allowing me to be present with whatever it is I need to learn and be aware of everyday of my life!!

  3. I really love this. I want to send it to all my fellow Southeast PBC support Group members who ride a slightly different dragon.

  4. ML, love love love your tips for making friends with your dragon. am gonna borrow that, k?

    Robin, thanks for the reminder for Presence and honoring dragons. YES!

    Glenn, thanks! am sure you and your fellow PBC dragon riders ca share many riding tips/tricks! looking forward to them…

    let’s all keep on riding!

  5. I am so thankful our paths crossed on those Holy Grounds of Trinity Center. Do you have any idea the difference you have made in my life… your faith and sense of humor are inspiring. As you know…I’ve had my share of dragons nipping at my heels. I am ready to quit fighting and running from my dragons….I think I’ll hop right on and enjoy the ride myself. Thanks Lisa. I’m sending this link to my special friend Mike who is alwo riding the MS dragon.

  6. You never cease to amaze and inspire me and “I thank my God upon every remembrance of you.” I am sending this to my son Nathan, who as you know, rides the dragon of Type 1 diabetes–his 11-year anniversary of diagnosis is Feb. 24. My own dragon is the fear of what Nathan’s dragon might do to him. Occasionally it turns around and breathes fire on me; I try to remember to throw up the shield of faith, and though I sometimes get blistered, I have not yet been incinerated and plan to ride on. Thanks for the reminders on how that’s done.

  7. I wanted you to know how inspiring this is for all of us, but especially for those whose bodies have MS. My sister has been ” riding the dragon” of MS now for 14 years, and reading your words will certainly give her a new perspective on living with the disease. Thanks for all you give to others. You are truly a remarkable person. Anne Williamson

    Thanks Wanda for sending this to me

  8. Lee, i join you in gratitude for our meeting and sharing. and AMEN to OUR stopping the running & hiding from those dragons. they do seem better at that game than us. blessings on you and Mike…

    Wanda (and Nathan), i have Feb 24 on my anniversary calendar and will celebrate it BOLDLY! ps… i find MK extra emollient night cream helps with those random dragon breath singes. 😉

    Anne, i send you & your sis loud cheers as dragon riders ~ have a feeling you BOTH ride yours in glorious sass & style.

    thanks to all who have commented… as we all know, dragon riding is best done together.

  9. My dear friend Lisa,
    It’s a privilege and a pleasure to know you!! Thanks for being my friend; I am the winner in this association. We learn to live by the examples of others; and while I have had many good teachers, your life and it’s journey to achieve homeostasis while fighting your battle with MS has added another dynamic dimension to my education. Your faith in God and your loving kindness to all who know you is a balm to the soul.

    As I have read the comments placed by others, I realize I don’t really have any dragons to fight; however, if and when I do, I will be so thankful to know there are so many patterns to follow.

    Love and bye, Janice

  10. You are wrong about slaying your dragon called MS…it is obvious you have “slain” it…your positive attitude and outlook on life during your “dragon ride” are representative of human traits we all need to emulate when we are about to get thrown off whatever dragon we may be riding at the time.

  11. Sometimes, if we’re profoundly lucky in life, we find a true friend that helps us be more and be better than we would be if we were left to our own thoughts and actions. Lisa, that’s what you’ve given to me….the inspiration to be a better person. What an incredible gift. And you’ve given it not just through the way you’ve dealt with MS, but the way you’ve chosen to live your life….MS and all. Thanks for all you’ve given me. I am blessed by your friendship.

  12. I hope you had a wonderful day celebrating !!!
    I echo Tom’s words, (above). He says all that’s in my heart too.
    I’m so glad we are friends.

  13. Janice, Rick, Tom & Jan ~ knowing you all as i do, i’m beyond humbled by your kind words. you have all taught me much about dragon riding in your lives.
    you’ve all faced down some pretty big dragons in your lives. sure would love to know how you did it ;).

    in the meantime, may we all keep on riding!

  14. My dragon seems a bit insignificant when I read about everyone else’s dragons….. BUT…. as I have learned, I can’t compare my dragon to anyone else’s. To me, my dragon is huge just as to others their dragons are huge.

    I am just so very thankful that I have found an online group of friends who understand dragons and slaying them…. or better yet being kind to them and making them friends or at least “grateful awareness guides”.

    Lisa, I pray your day of celebration was wonderful and all it could be for you!!!! Thanks so much for sharing a part of this special day with all of us.

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