I am falling more. Wanting to go out less. Every public fall seems to isolate me just a little more. And though the actual fall is bleak and demoralizing and creates a gut-wrenching fear of the future, it is the aftermath of the fall that distresses me at least as much, and possibly more. Falling is actually do-able. As long as nothing is broken and no head injury occurs, a fall is actually manageable. It’s a physiological thing that I fully understand: my walking is compromised by the MS.  I get that.  I understand the ‘mechanics’ of the fall. But I’m having a harder time getting a handle on the helping part; the chaos of the after-fall and the helping hands and the worried faces. And me looking up at them. And them looking down at me. That moment is excruciating.

At our home the fall is rarely inside the house, is almost always outside. We live on eleven acres in the country and share our lives with many animals.  Being outside with them, feeding, brushing, mucking, watching, visiting, is the best part of my day. And while it seems that the price tag for active living in this glorious lifestyle is the possibility of a fall, it’s a price I’m willing to pay.

Don’t get me wrong. I am not careless. I am acutely aware of my pathways, am in constant negotiation with my feet and the ground beneath them. My walking stick is my unwanted but respected companion.

A fall goes something like this: It happens in the space of about four heartbeats. I am up and then I am down and I experience the fall as if I and the falling are quite separate. I am keenly present with the very moment when balance is lost. Always there is surprise and then one heartbeat and a frantic mental grasping for a saving, a respite from the inevitable.  A second heartbeat and a plan for landing. A third heartbeat and impact. A  fourth heartbeat and then stillness. And, always, a quiet.

When I am alone there is the stillness and a peace after a fall. A kind of momentary thought that this is the safest place to be: prone on the ground where further falling is an impossibility. In a strange way it’s as if the ground is my friend, calling me to its face as if to protect me, saying ‘stay here. You’re safe here.’  I like it best when I fall alone. I no longer rush to get up. I lay still after the shock subsides and if there is any pain, I no longer panic with it. A bit of time goes by and I figure out how to get up. I crawl to a place where I can hold onto something to aid in the pulling up. It can be simple or it can be complicated, depending on the location of the fall and the nearness or faraway-ness of helpful holding places. When standing again, there is almost a feeling of accomplishment, an ‘I can do this’ kind of feeling. A sense of self.

But when my fall is not alone, when others are around, it’s quite a different experience. People rush to my aid and there is a flurry of activity and lifting. I feel profoundly awkward. I see their distress. I hear their distress. And I fully understand that gratitude is called for and I do feel grateful. I would, of course, feel very badly if people just passed on by. But the fact remains that the post-fall rescue leaves me feeling impotent and less-than-able.

My husband recounts a fall.  He was walking behind me along our porch as we headed to the car. I lost balance just before the stairs and literally flew through the air sailing overtop the two stairs. I remember consciously thinking that I needed to protect my arms, to not stop the fall with my hands. One, two, three, four.  I landed on my side with my arms folded at my chest.  My cousin was sitting in the car, ready for our outing and I remember his wide-eyed horror as I landed at the ground by the car door. My husband tells me that I looked like a professional linebacker hugging the football, sliding under the goalpoast. Plenty of bruising but no lasting injury.

I fell on the ferry last week. Walked along perfectly flat flooring to the gift shop. Purchased a book and headed back, cane in hand, to where my husband sat. I can still see the faces of all the people in the chairs facing me as I walked down the aisle. This time there were only three beats as I lurched forward out of balance, losing my bag and my cane. I reached for the chairs to my side and managed to stay upright. No fourth beat, no fall. A man literally ejected off his chair to grab me, but there was no need as I grabbed the chair first. He handed me all of my accoutrements and I thanked him. I walked on forcing a calmness that I most certainly did not feel. I am sure that people looked away as I walked by them seated in their chairs, the way we so often do when we are uncomfortable for someone’s situation; I cannot be sure, but I imagine they did. I turned the corner to where my husband sat reading and joined him.

I go out now always with some trepidation, never really sure. Never really feeling whole in my own skin. And it’s not even the falling I fear; it’s the aftermath. The unavoidable aftermath. Because people are kind and caring. And how can that not be a good thing?

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Dancing In The Kitchen

My husband is a good dancer, a really good dancer.  We have danced in the driveway, danced in the barn, danced in the laundry room and, many times, danced in the kitchen. If there is music playing that gets his body moving, he will take my hand and we will dance anywhere. He has danced me through joy, danced me through tears and danced me through darkness. His hand on the small of my back, small pressures moving me left or right, faster or slower, into twirls and out of twirls, away and then close. And always the rhythm, that singular translation of sound into movement and the ease and comfort of that knowing.

We now move differently together, in a new way. ‘New way’ is his description.  My description, ‘awkward and tenuous’, is less kind but likely more realistic. He whispers small steps, small circles when I lose my balance, reminding me to trust that we can move together in this new way, in this different-than-before way.  In that moment, I urge my body to remember, to remember how it moved before.  I beg the cellular memory to pay attention. But it does not hear me.

I’m happy that we still dance. Even though each step shouts out to me see this loss, see this one more thing disappearing I am still happy that we dance.  Glad that his hand still rests on the small of my back, reminding me to quiet the fear, to simply feel the music in the soles of my feet and to just move, however that may be.

But, oh, how I miss the old way.

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I’m a definite failure as a blogger. The whole idea of blogging is to connect consistently, to offer a continuous flow of communication or thought or observation. I have spent the months since my last posting thinking about how I should be posting. Thinking that I should be writing about the new difficulties I’m facing and the new fears. And I’ve successfully resisted, convincing myself that blogging about my MS makes me think about the MS all the time. That if I stopped blogging, I would think less about MS.  That  ‘If I don’t write about it, then I won’t think about it’. Well…..guess what.  I think about it all the time. It’s never away from me, not ever. Nothing shakes it loose or moves it away from me. It’s just there like a heavy, unmoveable boulder.

So I’ll write when I can. When I’m needing to move some of the thoughts out of my head and onto the blank white of a new document; that crisp, orderly and oh so perfect white screen.

Definitely not an A+ grading for this semi-blogger.



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Renewal Or New Loss?

It’s been four months since I’ve posted.  An absence, as if a silence is the same as a forgetting. But it never is.  Through these four months, winter moved in and out.  Here, that winter gave both rain and wind; it never offered the kind of cold that cleanses and lays the ground bare in preparation for a kind of spring renewal. Through these months a friend died and with her passing, I lost a particular history, a particular part of my own life. There is a vacancy without her, a terrible and concrete missing; a yearning for something unreachable.  My heritage birches survived the winter. My gardening skills are of the lowest order and any plantings renew themselves of their own accord for which I am always grateful.  I suspect there is pity involved; I am sure they sense my earnestness, my focused intention at the time of planting. They are very forgiving.  There was a hint of lilac and wisteria yesterday morning on my way to the barn. Pure pleasure.

But this spring renewal is making me uneasy. I’m feeling unprepared, unsure of newness.  Almost tricked. These past 27 years I have worked with my remission-relapse MS.  I have understood the game: I have an attack, a relapse, I work with it, I wait it out, I soldier on. Very little complaining, almost none, in fact. And then the remission. Always the remission. Well, the rules of the game seem to have changed.  I have been waiting patiently these past three years for a sign of remission from the last attack and there has been none.  In fact, there are now signs of progression. And I’m struggling. I have been engaged with an enemy my entire adult life. It has inhabited every nook and cranny of my life. There has never been a moment that we haven’t stared each other in the face. And despite that constant, unrelenting invasion, I have felt lucky. Lucky for my disease status: relapse/remission. It has always given me some peace, knowing that after the bad time would come the better time.

I don’t know how to dance this new dance.  And sometimes I don’t know if I have the energy to learn. I’m 27 years older now and I don’t feel quite as invincible. If this is the beginning of the downhill slide, I’m not sure if I have the chutzpah to slide with grace. I’m afraid I will only bump along with the wide-eyed disbelief of someone watching a slow motion train wreck.

Perhaps this is just a bad day. Perhaps tomorrow I will feel a renewed strength that will buoy me up for the fight. Perhaps the birches, the lilac, the wisteria will remind me that I can do it.


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The Mirror Is A Stranger

How to keep fit.  How to keep fit when just putting on shoes becomes a creative intervention?  When pulling on the left pantleg becomes an exercise in contortion and, at times, comedy?  I have never been an athlete, but walking and swimming have always been two things that I love to do.  The swimming is still possible and I do swim in the summer months in an outdoor pool.  It is heated by the sunlight, so that option disappears once the summer is over.  I can no  longer walk in any way that could be construed as ‘cardiovascularly challenging’.  So…….what’s the exercise regime?

I have one side that is fully functional; the other side has a leg that can only lift 1-2 inches off the ground and an arm that cannot fully extend upward and, when stretched, goes into spasm and becomes almost unruly.  I have purchased some arm weights and will begin that process.  I have a stationary bike that I will truly try to spend more time with; it’s a job just keeping my left foot on the pedal.  My Dr. pointed out that riding a bike is actually strengthening the very muscles that spasm and advised that I pedal backwards in order to strengthen the appropriate muscles. Not a problem, I can pedal backwards!  But my bicycle does not allow a rider to pedal in the ‘wrong direction’.  It’s been a long time since I’ve had my heart up to a taxing rate.  So now I wonder if my arteries are clogging up with a sedentary flow of sluggish blood just waiting to zoom around once again.  Will I ever zoom again?

I live in a remote area without gyms or body-attending services. My exercise regime will be self-motivated and self-functioning. That motivation has, so far, been non-existent in reality though very strong in intention.

I’ll let you know how it goes.

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Progession Brings Fear, Of Course

It’s been awhile since I’ve written a post.  I’ll tell you why later. 

I’ve been thinking about skipping.  You know the way someone skips up a flight of stairs; not shallow, steep stairs, but deep ones that stretch out long to each side.  Maybe eight, or perhaps, ten stairs.  Like the kind that lead up to a large building; a courthouse or maybe a museum.  I passed such a building a few weeks ago and watched as a woman, obviously in a rush, moved up those stairs with such a lightness that I caught my breath.  Her legs moved in easy, snappy rhythm and each foot lifted in precise measure, finding its place back on the stair with quick sureness.  She had a bag slung over one shoulder and carried another bag loosely in one hand.  She never seemed to look down, her eyes focused on her destination at the top of the stairs.  I moved on, gripping my cane, struck with a longing, remembering when I, too, moved through my world with ease and grace.

And then I waited at the next corner for the traffic light to turn green.  A man rolled up beside me, his wheelchair grazing my leg.  We waited together, he and I, separating when the green moved us along. 

So this is my struggle:  I feel a sense of shame when I dwell on what I can no longer do instead of celebrating what I still can do.  I long for my body to be well, allowing me to live as freely as I did before.  And then, when I see someone who moves with less ease than myself, I am grateful to be as well as I am. I know how bad MS can get.  I know that my RRMS affords me freedoms that PPMS does not.   How do fear and gratefulness cohabit?  How does one find peace with these two powerful  realities standing side by side?

Since progression began in my RRMS, a dreadful fear seems to permeate everything. Even if a plateau occurs, a bargaining process begins:  “OK, I can live with this.  If it gets no worse than this, I’ll be just fine.  This I can deal with.”  I’m not sure who I’m bargaining with, but I feel compelled to put the words out there.  I just want to find some stillness.  A way to ease the fear.

I think that I haven’t written lately because I felt consumed by MS-thinking that goes along with writing the blog.  I didn’t want to think about the disease all the time.  And then…..I realized that I am thinking about it most of the time anyway.  So, here I am again.  Thinking and writing.

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Last evening, someone asked “How are you ?  What have you been up to?”  I look healthy and well; the only sign of change is my cane and difficulty with balance.  It was a very normal question and not necessarily referring to my health.  It was, simply, a conversational question in a social situation.  If I had answered honestly, this is what it would have sounded like:

At times, a sadness grips my chest and wrestles me to the ground.  Other times, fear stills me in a paralytic hold. And still other times, there is a calm understanding that this is all life; for everyone there is compromise, accommodation, shifting and loss.  That some move through times of quiet waters while others face ripping tides and ferocious storms.  That, somehow, everyone struggles.  And then, if I had completely let my guard down, I would have called out to you in hoarse  agony.  I would have offered things in urgent trade to take this slow disintegration away; would have made impossible promises if only my body would awaken to its own self, remember its own way. And then I would have stood before you in silent despair.  

I say, “I’m good.  Busy, but enjoying some quiet time.  How about you?”

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A Primal Memory

It’s when the water laps against my skin that I remember my body’s rhythm.  Arms wide, pushing away, pulling in, legs pleating, pacing and the slow, slow glide. Breaststroke. Breathe in, breathe out. Breathe in.  Breathe out.  I luxuriate in this buoyant movement, expansive and broad.  Turning on my back, I see myself mirrored in the sky, an arabesque or, perhaps, a waltz. 

Climbing out of the water my legs hold me unsteadily, spasms jerking my steps.  A turtle wishing for gills.

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Sometimes I find myself thinking about being alone. At times, I watch myself from afar and see how slow I am, how much energy it takes to do so little. And I watch my husband, busy with so many things that have always been on ‘my list’; things that I have always done with both pleasure and competence.  And I wonder at times if being alone would be easier.  For both of us.

My husband is the best.  He has boundless energy — if you need someone to get a project going or get-something-done, he’s your guy.  He can figure out a solution to almost any practical problem. We met in the middle of both our lives, 11 years ago.  I was actively involved in my business and, though he knew I had MS, there were no overtly obvious symptoms.  I suspect that, to him, MS must have seemed like just a word.  I was active and busy and our life together was full.  We were equal partners in every way. 

Things changed 2 years ago when the MS hit with a bang — and I cannot shake the feeling that he got a bum deal.  I know that doesn’t make sense on so many levels, but it’s there in my head.  He would be the first to disagree with this perception, would cite a long list of reasons why our life together is still balanced in great partnership.  And I would hear his words and know that he speaks a truth. And I would love him all the more for his dear heart and his endless optimism.

And then I wonder if my thoughts of being alone are more for my sake than for his.  I spend most of my day’s energy trying to keep up with my life and all its happenings. Life is always standing right there in front of me saying ‘Look, there is this and this and that to be done. Get busy’.  If I was alone I imagine that I woud make my life smaller, creating more manageable parameters; that life would be simpler because there would only be me.  And… there would be no one to disappoint.  I would not be looking at someone looking at me as I slowly wilt.  And I imagine I would be gentler on myself without that reflection.  But, oh, how I would miss him.

Tomorrow is another day.  I will read this post and shudder at my use of the word ‘wilt’; will chastise myself for such circular retrospection. Will be thankful for love and its boundless generosities.

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Loss Talk

Truthfully unraveling this MS journey involves talking about loss, about what can no longer be done.  My pattern these many years has been to ‘focus on the positive’, to ‘just put one foot in front of the other and march forward’.  I am one of those lucky people who had a truly wonderful childhood and have continued to have a wonderful life.  As well, I am constantly aware of the many people who are experiencing much more severe levels of MS than I am.  The word ‘grateful’ is always in my mind’s forefront.

But today, for this day, I am staring loss in the face and am not going to turn away from it.  For today, I am giving it a voice.

This slow degeneration of bodily functions is horrifying to me.  It blankets everything, every single thing, with its heavy, heavy weight.  Each day becomes a gauging of changes; is it worse today or better?  Does that spasticity in my hand mean that my left-sided leg immobility is now moving upwards? Does that slight greying of vision mean the optic neuritis has returned? Should I continue my learning of braille which I began 25 years ago when it seemed my vision would remain compromised? (I thought learning braille was a very creative and proactive solution to my dilemna. My vision returned and the braille was set aside.)  Walking to the barn yesterday went smoothly; a new drug for bladder control seems to be working.  I am heading out soon to a local community event, fingers crossed for the same success today.

Is this like aging?  Is this an experience similar to that of the elderly?  I imagine the sorrow of the aged as they live with bodies that are quitting; bodies that are no longer obeying the rules of the past 70, 80 or 90 years.  Such treason.  A gangplank with boards of varying lengths.

Is there a greater sorrow with this degeneration at a young age or is it all the same?  Is this loss more difficult because I am only in the middle of my life, at a stage where, finally, so many things make sense and the future looks wide and inviting? Or are we never prepared for this slow, slow disappearance, young or old?

It is the physical grace I am missing with a tangible longing. I have always been comfortable in my own physical presence, secure in my physical space. But today I leave the house with a cane and a wish.  And, yes, I know I am still ‘me’.  I know my soul is still my own  strong soul. I know that I still breathe in this summer air and am still thrilled by what I see and hear; the eagles and the ravens, the blue wisteria swollen with scent, my dogs running, playing, wrestling.  Joyful things that fill me to bursting, still.  But with a new sense of being alone.  Not alone as in lonely – my life is filled with love.  But alone in the constant goodbyes to bits of me. And within that aloneness is fear.  Will I summon the grace that will be needed in the face of physical dependence on others?  Will I offer the grace that allows others into this experience with me or will I hold them apart, not wanting them to witness the deterioration?

Today is only one day.  And tomorrow is another.  Looking ahead is only guesswork. The sun is bright, my dogs are at my feet and I’m heading out to an event filled with music and camraderie. And that is all good.

I take a deep breath and I’m out the door. Taking all of me with me.  Joy, fear, trepidation, wariness, weariness.  The whole ball of wax.

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