I’ve been trying to come up with the words to describe this for months; though come to think of it, it’s probably more like a year. This inexplicable thing has been bouncing around my head, periodically coming together to make a sentence and then falling back into individual words that I can’t remember or feelings I can’t explain. It seems fitting to have this figured out before the year’s end. (Which happens to be moments away.)

So here goes:

For me, living with MS is a fluid experience. My changing abilities wash over me like the tide and leave me disoriented. My body defines and redefines itself with the ebb and flow of my disease and my emotional response is a balance of denial and strength. The current pulls me around as I’m dodging fears and rising to the challenges to keep moving forward. I search for solid ground to find perspective. But until I get there, I forget what normal is.

Each day rolls into the next with changes that are often very subtle. And after more than two decades with MS, I have learned to accept what is for the day, the week, the month. I don’t spend a lot of time examining the specifics of how I feel. I just cope. And part of that coping is to avoid looking at the big picture. While “I’m soaking in it,” I can’t see what may be obvious to others.

See how confusing this is? I feel like I’m contradicting myself! Ok, let’s back up a bit.

My symptoms fall into two categories. There are those that I’ve dealt with on a daily basis, since I was diagnosed. Many of them are manageable with my prescriptive cocktail, others I have learned to live with.  For the sake of the metaphor, let’s call those symptoms Barnacles. The second category consists of the symptoms that come and go and come and go. Let’s call those Shells. Oh wait, did I say two? There are actually three categories. The third is the attacks. (Okay, I could go all shark metaphor here, but won’t over-do it!) The sudden onset smacks me with an unexpected wave and leaves no question about what is or isn’t usual. And while I am afraid that some of these new symptoms may go barnacle, I rarely lose sight of who I am outside of the relapse.

So, here are some examples of the parasitic barnacles I live with. Including, but not limited to: foot drop, difficulty walking, dizziness, poor balance and hmmm, what are those other ones… oh yeah, incontinence and an inability to pee. How could I forget them!?! These tenacious little buggers have been clinging to me for so long that I can’t remember a time when they weren’t a part of my everyday.

So you ask, how does this fit in to the inexplicable-thing category? It’s those elusive shells. They roll in and roll out and as I chase them up and down the beach, the water overtakes me and my defensive denial kicks in. Leaving me even more dizzy than usual. When I finally resurface, I can’t tell where I am.

I’m getting lost in metaphor. Maybe a real example will better convey what I’m trying desperately to say.

This year I noticed that I couldn’t stand for very long. The amount of time required to load the dishwasher or heat up a microwave feast eluded me. And because it came on so gradually, I barely noticed it happening. As the months went by, my standing time continued to decrease and all of a sudden I stopped and scratched my head. Have I always been this way?

From the outside this must seem ridiculous. How could I not know that this debilitating symptom is out of the ordinary? As I speculate further, I find myself standing in moving water. The next thing I know I’m submerged in a tide that was at my ankles a few moments earlier. And as the water touches my chin, I tread, trying to figure out who and where I am.

It’s usually my husband who reels me in. He helps me find perspective without lingering on the thoughts that are counter-productive in my coping. Realizing that this symptom isn’t a barnacle, set off internal fireworks over the Hudson.*

So the year is at its end. The next one is imminent and as is the case for all of us, I have no way of predicting how the tides will turn. Maybe now that I have the words all together in one place, I will be less likely to go adrift again. Though I must say, denial, when used reasonably, can be a very comfortable flotation device.

*Oh, and btw, “my long-standing-ability” has greatly improved or “How I learned to stop worrying and love the Ampyra.” Does anyone get that reference?)

16 thoughts on “Surfacing~

  1. grandintentoncommunicating says:

    Barnacles, shells and oil spills, maybe?
    (i.e. threats against well-being)?
    I add this since you’ve used the body of water I love most as your metaphor-source…

    Well-done, m’dear. and getting it said certainly makes the ongoing path (swim?) one of mindfulness, since you’re obviously aware of the denial factor.

    Speaking of denial, when we are aware of it, we keep learning how it works, in preserving our defenses (in a manner of speaking). Sometimes we need it desperately, just to get through. Meanwhile, while denying, we can reconnoiter, buying time to deal with the realities (pleasant or not).

    Like sloshing through a shoreline full of stingrays, we see the imminent danger, but know that our shuffling will help us make it. Denial? Our continuing to move without screaming — that old stiff upper lip syndrome

    HAPPY 2011

  2. molly says:

    i like your imagry…i found this blog on a google path down foot drop lane and steroid drie….the steroids familiar the foot drop only as old as the flu i had last weekend….i peralso have tides, of waning fear in times of invisibility and ebbing calms when the roof comes crashing in..youve helped me feel not so alone..anyhow, im off to imagine the doozers (of fraggle rock)building my myelin
    thank you

    • aglol says:

      Thanks for writing Molly~ It is so good to hear from people who relate in this whirlpool that is MS. It calming to know I’m not the only one with these experiences and thoughts.

      What’s also calming is t know that I’m not the only on stuck in the magic of Jim Henson. Gotta love those doozers, little workaholics they are! Great imagery!
      Fraggle Rock does in fact rule, and my 9 year old would concur. Some things never get old!

  3. glenn says:

    Amy, considering what you deal with on a daily basis from this dreaded & unpredictable disease, you handle yourself with an incredible amount of style and grace. In fact, had I not already known that you had MS I would probably have never even noticed that you’ve been suffering from all the above-mentioned symptoms all these years. I truly admire you for your incredible attitude and I hope the new year brings you some semblance of normalcy and predictability in the health department (or should I say a calm sea with smooth sailing to stick with the ocean metaphor!)

    oh, and being a fellow film buff, of course I get the Dr. Strangelove reference!


    • aglol says:

      What wonderful words with which to head in to the new year – I will reread for reinforcement… so thanks for putting them out there. You have had your share of trials, that I hope the coming year will wash out to sea. Perhaps we can both wave from the shore and then have a chaser of fries with vinegar or funnel cake. 😉
      You’re buying!

    • aglol says:

      Oh, and I forgot- thanks for “getting it”! I could have gone overboard with the “precious bodily fluids” metaphor; but i refrained~

  4. gabiopal says:

    I too love your “water-type” metephors although at the moment I am stuck in the sand the seaweed has me in a tangled mess and the tide is on it’s way in.
    My body and it’s uselessness won’t allow me even a shred of deniel because something is ALWAYS there to remind me that I am “sick” Maybe sick was the wrong word but there is something going on, either with new med or upped doses of old ones plus the fatigue, it is just allways there, can’t run away from it. too many pills to many obsticles in the house, as well as outside, It was almost 50 degrees today and how I would have LOED to just go outide sit in my chair and enjoy it but w/o a ramp of any kind, I can’t even do that. So I am not only locked in this body that is slowly falling apart but I am also suffering LOTS of cabin fever being stuck indoors and not being able to get out.

    Sad but true and thats only “part” of the story.


    • aglol says:

      Hi Gabi,
      I’m so sorry to hear that you’re struggling this way. I hope 2011 brings you relief from some of what you are admirably coping with.

  5. Nancy D says:

    Amy, your writing is always so well done. I find so many similarities in our situations and yes, that helps us not feel alone. I love the ampyra… I can’t stand for long anymore… and denial is what keeps me from heading out to sea 😉

  6. gabiopal says:

    you have both mention Ampyra… could you go into more detail on it? I also have foot drop and nasty balance issues, among other things . But it sounds to me like maybe I should go off the copaxone and try this Amprya stuff, after 5 months on copaxone I’m not doing “much” better.


    • aglol says:

      Ampyra is a drug that passed the FDA a year ago. It isn’t disease modifying – I’m on Rebif and Ampyra is one of the myriad of meds I’m on to treat the MS symptoms I live with. I started it in July and saw a change about 4 months after. You’ve probably read about it… but here is a link if you want to read more. I guess like anything else with MS, everyone responds differently. I was on Copaxone for 15 years and it helped me tons. ag

  7. Judy says:

    I found you through a link on Robert Parker’s Gifts of MS blog and am so glad I did.

  8. Ellie in WI says:

    Amy, thank you for sharing your thoughts on the long-term challenges of MS. I am a fellow traveler who has nearly spent two decades on this road and I am struck by the similarlty of our experience.

    When I got my MS diagnosis I had no idea what my path would be, but now after such a long time, it is clear that there are many years ahead.

    As a fellow traveler, I wish you all the best in 2011. May Spring bring us joy and many days of moderate temperature so we can enjoy the glorious out-of-doors.

    • aglol says:

      I’m just taking a moment to review comments and I came across yours. Thanks for taking to time to write. It’s very soothing to hear that you relate- that you find similarities. It’s good to have company on this journey we are forced to take…
      I hope you are enjoying the spring.

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