Alzheimer's, awareness, beloved, blessings, body, burdens, comedy, disease, dream, embrace, fall, frozen, gravity, grief, hero, hug, loss, Michael J Fox, Millie Kondracke, miscarriage, Mort Kondracke, MS, music, Oprah, Parkinson's, poetry, romance, song
To understand why this grail—a bike I could ride—was sacred to me, I should explain a bit about what life is like when your mobility, your safety, your independence and freedom are compromised by a lack of balance and coordination, by the addition of constant fatigue and pain. All of which was much worse before 2007.
Actually the MS symptoms themselves were not worse before, but I had no mediator, no relief from them. Since May—Mother’s Day in fact—of 2007, my life is very different. On that day I was given an incredible gift: 65 pounds of four-footed wiggly alchemy, wrapped up in a fluffy, adorable, wise and witty companion.
I’m fortunate enough to be partnered with a mobility assistance service dog, Luke, who changed my life dramatically. (And has since grown to a robust 75 lbs, thanks to my gratitude in the form of too-many-treats.)
(But, seriously, who could resist that face–right???)
Luke helps steady my wonky balance, lends me his momentum over curbs & up stairs, keeps me from bumping into things & people, eases my physical pain, reminds me to laugh and stretch past perceived limits, take time out to play
and to take a nap,
and so much more.
Having Luke has enabled me to travel independently for work, play and learning. He’s given me back a great deal of freedom that the symptoms of MS (and some of its treatments) took away. He makes the world a far less dangerous place for me to navigate; he’s the best co-pilot one could ever hope for.
Once I had Luke I was able to engage more fully in my own life, become physically active again, a real part of my community. Without him I would not have been able to finish my graduate degree and become a teacher,
I would not have had the privilege of spending as much time as I did caring for my mother in her last years suffering from Alzheimer’s and colon cancer.
And because of this newfound ability to get out more, to not have to worry all the time about falling and hurting myself or falling and not being able to get up, because of the energy conserved and pain eased through Luke’s assistance, because of the self confidence he lends me (because I’m no longer a constantly bumbling creature), I’ve had the opportunity to manifest a long-held dream: creating a poetry in the schools project.
That experience—in which Luke was integral—transformed the direction of my post-graduate career. Unquestionably, Luke has done more for me in terms of living life with MS than any doctor or medication ever has. If you’re so inclined, you can read about that journey on my other blog: WordPlay.
Still, this body remains tired and uncooperative and hurting. It makes for long days and even longer nights. It’s a struggle to stay fit with a body that doesn’t respond to exercise the way a normal, healthy body does. And it’s overwhelming many days to find the energy to devote to working out and doing physical therapy when I often don’t have enough to get the basic To Do list of each day accomplished. Living in a home without a yard, for example, is not an option anymore because too often I cannot even take Luke for a walk. On those days it’s all I can do to make it to the back door to let him out for pottying purposes.
After 12 years you’d think I’d be used to this limited mobility and energy, the amount and duration of pain, the constant risks to safety, the bumps and trips and falls and injuries. But the truth is that sometimes this body doesn’t feel like mine; this life doesn’t feel like mine. I wonder if what I experience in this regard is similar to someone who loses a limb and still feels as if it’s there, gets surprised anew when they reach to scratch and find only the memory of that arm or leg. Maybe it’s like the woman I met in a writing workshop, a burn victim who forgets now and again that one side of her face is no longer smooth and unharmed until her son’s infant hand rests against her cheek. She cannot feel his fingers because the scarred ridges of skin have been numb since before he was born. When she knows he’s touching her but she cannot feel it, that’s when she remembers what everybody sees.
I know my father and mother are gone. I know my beloved Aunt Helen who did most of my raising is gone. But every couple years I look at the calendar in the month of June and wonder what to get my father for his birthday. I used to call my mother right before bedtime, and there are still evenings when I notice the time and think Oh, it’s getting late, I need to call Mom! My Aunt Helen grew in me a love of books and reading, and now and then in the middle of a really great book I still say to myself, Aunt Helen is going to love this.
And sometimes at night when a cat steps across me, in my half-awake state I identify its inky, sleek form and familiar weight as Farley—a cat who’s been dead for a long time.
In a manner of speaking my life before MS, for sure my body before MS, is dead.
My former life and body are kind of like loved ones I sometimes forget have been gone for a long time.
My cousin’s laugh sounds so much like my father’s that I both look forward to and dread it. When I hear the echo of my father’s almost-laugh come out of my cousin’s throat, for a moment I’m suspended in my father’s love again, but then the sound stops and the reverie evaporates, leaving me missing him more than I did when the nature of time and memory had allowed me to forget his laugh.
Once I went shopping for a birthday gift for my goddaughter who wanted a baby doll. “One that’s like real,” she said. On a recommendation I went to a specialty doll shop where the owner directed me to a particular line of dolls hailed as being lifelike. She walked me over to the shelf, picked a strawberry blonde baby doll out of its display cradle and placed it in my arms. In fact it looked so real that I received it in the way one would an actual infant out of instinct. I was not prepared for what I felt. The head and bottom were weighted—with sand or grain, I think—exactly like a child’s. The limbs lay like arms and legs of flesh and bone; the rubberized plastic felt like brand new skin; the doll was even wearing a diaper that crinkled. One minute I was “test driving” a doll for my goddaughter, the next moment I was full of the effervescent joy and unbounded hope I had felt when I was pregnant with the seed of new life, the shiny promise of all that love, the anticipation of that singular miracle of connection—mother to child—growing inside of my womb.
In the next moment, I was awash in serrated, razored grief for the baby girl I had lost during the second trimester of that pregnancy.
I guess what I’m trying to say is that loss is loss, grief will always be grief, and there are times when the mind and heart—or body—will twist a slip-knot in time and take you back. Sometimes you get to hear your father cracking up at Benny Hill again, sometimes you feel like you’ve just been told by the ultrasound tech that she can’t find the heartbeat and the cold of the remembered table underneath you starts a shiver that leads to shaking and hyperventilating that leads to vomiting which won’t stop.
Another time your body feels like its former MS-less self for a flash and without thinking you launch into a game of chase with the dog meaning to run across the yard. You couldn’t be more surprised when you do what you always—since MS introduced itself—do: you fall. And then it’s as if you’ve taken a fall from the height of every previous fall put together. Your body absorbs the hard truth of gravity for all the years of falling combined. Your spirit descends past the heap of your crumpled body, to some subterranean out-of-sight out-of-reach out-of-hearing place.
What I learned, in part, from my journaling, is that the annual MS 150 was serving as both the birthday and the anniversary of death for a loved one. It brought mourning for what I’d lost, it brought back bright moments of things I’d accomplished in spite of MS, it brought reminders of those who have provided inspiration that buoyed me, it was an indicator of so many people giving their time and energy to raise funds and awareness for the very thing that provided many of my emotional, physical and spiritual burdens.
To appreciate a piece of music, you have to listen to each note, absorb it, explore it, take its hand and dance with it. You have to pay attention to—and delight in—the way one note connects to the next, how groups of notes transition and whether they bridge directly or indirectly, discretely or boldly. Think about your favorite song. You probably know all the words. You might even press “replay” and listen to it over and over again. Sometimes we keep going back to the same song for the joy of it, for how good it makes us feel, for someone or some place, a special occasion it causes us to remember. Other times we keep going back to a particular song to make room for the truths we find, for memories that stir melancholy or outright misery. I think listening to music—especially songs we already know well—is like a form of worship, celebration, prayer or mourning. I believe we use music to establish and to reestablish connection, to visit and revisit, to validate love and ideas and memories and good times, even bad times—to honor them. Songs are stories, after all, even the ones without lyrics. Every year I listen to the “song” of MS 150 preparation and take it all in. Some years I listen closer than others. Some years I hit the replay button once or twice, other years more. This year, I couldn’t seem to stop going back for another listen, over and over again. I almost broke the button from overuse. I actually heard things I hadn’t before, which is remarkable, because it’s the same old song, right?
I like lists. (Have I mentioned I’m a Virgo?) I especially like Pro & Con lists. That line going all the way down the middle, separating cleanly the good from the bad, lends a kind of simple clarity that’s rarely found off the page, outside of the list. I focus on the Pro side whenever possible. Foremost in that line-up go the names of people who make a real difference in my life. I list people I see all the time, those I’ve not seen in ages, and many I’ve never met at all.
The MS 150 time of year generates lists. The MS 150 is a symbol of heroes for me. The MS 150 always reminds me of when I met one of my personal heroes, the person most responsible for turning my head around in regard to how I perceived life with MS—how I was enabled to envision a future I really wanted to live in. I had the privilege of meeting Michael J Fox when I was invited on Oprah to tell why he was my hero.
But first he spoke of a woman who was his hero, Millie Kondracke, and now I’ve co-opted her as someone from whom I draw inspiration as well. Before the taping of the show was over that day, Michael got up from his seat and came to the front row where I was sitting to give me a hug. The crew cut to a commercial because he held me in his firm embrace for a long while. It meant so much to me, not just the hug, but also the way he kept holding on—as if to acknowledge whatever small piece of the burdens-turned-into-blessings journeying that we shared.
Later, years later, I remembered that my grandfather would often get frozen in a position because of his Parkinson’s and it struck me that most likely Michael J Fox didn’t intend to give me that protracted hug, he just couldn’t let go! I was embarrassed and sad for a while, with that disappointing—but much more realistic—assessment of the hugging situation. And then it was just funny. Funny that I thought it meant so much to him that he would hug me for so long, funny that it meant so much to me to believe it, funny that I’d had a relative with Parkinson’s and many times been “stuck” in one of his hugs and yet didn’t recognize the same disease-related gesture in Michael J Fox.
It’s also funny—more than okay—that I’ll never really know which version, if either, is true.
Michael J Fox is a hero from whom I keep drawing inspiration, from whom I keep learning. It’s not having Parkinson’s that makes him brave to me; his choices are what I find courageous. Witnessing his courage gave me the desire to emulate him to the best of my ability, in terms of how he moves forward with a life suddenly intersected with a debilitating disease. Witnessing his choices gave me the belief that I could make similar choices. And in my own way, I think have. I certainly mean to.
So when the annual MS 150 comes around I am grateful for so many people doing so much, exerting such tremendous effort, to make a difference. I’m grateful for my heroes—and I have many of them—who give me examples of taking a lousy situation and finding a way to transform it for good. Each of them manages to take what could be a tragic story and makes of it a romance and comedy combined. A big part of romance is finding new and better ways to fall in love as we grow and change, as life changes our loved ones and us. Some life changes ask us to fall in love with a different, altered body—our beloved’s, or our own beloved body.
It sounds obvious, that if our bodies are significantly changed, so will our lives be. And yet nobody really tells you how to go about that, how to rework your life to accommodate a changed body. There’s not much to go on for all the alterations made to your inner life, either, and the work that still waits to be done. Which is why, for me anyway, I look to others who have endured similar disease, trauma, and loss—so that I might follow, matching my feet to the impressions their footsteps left behind in the pathway. It’s the good kind of stalking! The kind where you track someone’s successful navigation out of the dense heat-and-predator-infested forest, trailing her movements away from peril to survival.
I’m grateful for the inspiration of my heroes and my “on the ground” team—my every day, up close and personal loved ones (including Luke!) who fuel and champion and facilitate and cheer many of the changes that I’ve made in my life. I’m willing to own that I’m proud of myself for accomplishing things I never thought I would, especially those things I thought wouldn’t be at all possible once I was diagnosed with MS.
Still, in order to acknowledge all I have done in spite of MS, I have to look at the wreckage it has caused—kind of rewind the tape and force myself to sit in the chair, nails dug into the armrests, head aching and stomach churning, and watch. I have to bear witness to my old self, remember what and who I was before. I have to be honest about what I’ve lost, which is to say, again, that I have to grieve.
Why was the grief so much greater this year? Well, to be honest, I’m still not sure I know the answer to that. I have a lot more writing to do. Which is part of why I created this blog. I feel confident in offering this much: I think the reason my response to the MS 150 this year was heightened has to do with geography. I was diagnosed in 1998, and in 1999 Gary and I moved to New Hampshire for his new job, then in 2001 we moved to Florida for another job, where we lived until March of this year. We moved back to our hometown of Houston, Texas so that Gary could take a position at a credit union in Lake Jackson. This is the first year in a decade that I’ve been in the place where my old pre-MS body and life existed.
Could that be the reason? Could that be all of it? I let you know—I’m working on it. The hard way; the good way.
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Denise — what an eloquent post, and one that I will bookmark and re-read from time to time. I found your blog through the ICE UK site. I, too, live in a changed body and in a life that changes moment by moment. I’m the friend who constantly cancels at the very last minute, or who doesn’t make long range plans, because I barely know from one moment to the next what my pain level will be, or what my mobility level might be.
Am so thrilled because under my Christmas tree this year will be a brand new, shiny, fire engine red ICE Sprint 3fs!!! You can imagine my excitement — I can barely contain myself and have not told another soul yet other than you. I was able to test drive one this past weekend and for the first time in 20 years, I was F L Y I N G.
While I don’t have MS — I have another disability that invites itself into my life with constant, unrelenting pain — and that continually robs me of my mobility. This particular post of yours, summed up in a way so beautifully what so many of us are challenged with daily — and what is so hard to put into words for family, friends, co-workers, and acquaintances. In future, I think I’ll just send them this link.
Ride like an Egyptian,
Thanks so much for your response. It’s very gratifying to know that my words about living with MS and the experiences of riding a recumbent trike have meant something to you.
Please keep in touch and let me know how it goes with your new ICE Sprint. I’m hoping to “graduate” to a new one someday. I love the QNT, but it doesn’t have the flat twist fold of the newer models, which means I cannot transport it myself (I have a VW Beetle). This limits most of my longer rides to the weekends when my husband and his SUV can help me out. So I’ve not had this trike but a few months and I’m already wanting to upgrade!
Oh, and I’m eager to hear how you like the full suspension. I think that would really ease my joint pain/fatigue even more than just the rear suspended QNT.
Here’s to F L Y I N G ~
It’s always so validating when discovering another who shares our different way of living — and who also works toward moving forward rather than remaining stuck.
Just test driving the 3fs was outstanding. I test drove several trikes that day without knowing anything about any of them — and out of the pack, chose the 3fs. Imagine my dismay at the sticker shock!! Yikes! But my Beloved, like yours, is so supportive of anything that will keep me mobile and active as possible. So he reworked his spreadsheet.
This Saturday, I’m taking the same one out as a loaner, and riding one of the dirt trails here (I’m in Colorado) — and will let you know how it feels then. We want to put me under some stress with it, to see for sure that I can tolerate the vibration — or if I will need to stay on more paved areas. If it’s a GO after that, then we’ll put in the order and wait for Santa to drop it down the chimney.
Loved your tip on the compression tights. When things become a GO (because I’m refusing to believe on any level that this is not going to work!!) they are on the top of my list of things to invest in.
My own big goal is to complete a Century ride here in the Rockies. I have an indoor recumbent training bike that I’ve used for two years and love — and every day dreamed of hitting the open road. Can’t believe it’s finally going to happen.
BTW — we *love* Dennis Leary at our house, and Rescue Me is one of our all time favorites. So cool that you have chosen the charity that you have.
Just let me know any time you want to pack up your ICE and do some cruising in Colorado – we’ve got plenty of room!!
Definitely here’s to F L Y I N G —
(I see yours is named Starbuck. Coffee or Gallactica? Mine will be named Serenity after the ship in Firefly)
Hi again, Jane,
Starbuck is in honor of Kara Thrace from Gallactica. I figured I could use all of her uber-pilot kick-ass skills for good mojo & “flight” karma =) Wow, you’re already planning a century ride? You’re immensely braver than I am, that’s for darn sure, girlfriend!
As for Rescue Me, Gary & I are already in mourning that the series is coming to an end. Riding together in Colorado sounds heavenly – be careful what you offer ~
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