riding the dragon …

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?