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.

 

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.

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.

SOCIAL CONVERSATION

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?”

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.

Alone

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.

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.

Remission — A Constant Carrot

I’ve started painting again.  I still have my downstairs studio, but I’ve moved an easel upstairs where the light is more true.  I load my brush with reds and yellows and layer the canvas, creating ridges. There is some blending, some melding of hues, but it’s mostly edges, lines keeping the colors separate as if any bleeding, any joining would only invite chaos.  This clarity stills me, quiets my heart, helps me believe in the possibility of suspension where something as fluid as paint can be stopped, held back. Relapse.  Remission. Relapse. Remission. Hoping the ridges always hold.

Is There Ever A Day Without Exhaustion? Ever?

I remember being energetic.  I remember accomplishing many things daily and the subsequent feeling of satisfaction in a day’s work or in a day’s play.  I remember thinking that  ‘being tired’ meant being lazy or uninspired or bored or, worst of all, boring.  That all a ‘tired’ person needed to do was pull up those bootstraps and see what a fine world was in front of them!  These thoughts have marched alongside me these many years with MS.  They became an entity on their own; a persistent voice that continually pushed, convincing me that attending to the fatigue would spell failure.  Failure  to ‘rise above’.  Failure to beat something as simple and basic as fatigue.

I am now retired; my time is no longer mandated by work obligations. I eagerly anticipated an increase in energy once the workload decreased. This has not happened. So, at my last neurology appointment, feeling a profound sense of defeat, I asked my neurologist to explain — really explain  –  why my body is draped in this most weary part of MS.   So here, paraphrased, is my Doc’s explanation:

‘When you see someone just finishing a marathon, do you expect them to be fatigued, exhausted, tired?  Do you expect them to perhaps even collapse?  Do you accept the fact that they have pushed their body tremendously and need to recoup?  Of course you do.  We would all expect that person to need some downtime before they had their energy back.  Well, your brain is that athlete.  Actually, it is a super-athlete.  It is never at complete rest, some part of it is always working.  It masterminds every other part of the body.  And with MS the brain is always working overtime.  When neural connections are diminished or compromised, or even completely malfunctioning, the brain has to work so much harder. When it bumps up against a faulty neural connection, it tries to construct a new working connection.  And if that doesn’t work, it will take another route and try to set up another connection.  The brain will go on and on, trying to make new pathways that will successfully function.’ 

He continued, ‘And even with all this effort, there is not always success.  But the effort is exhausting.  It is like running a marathon over and over again with no rest. And the  energy that the brain needs to do all this extra work is taken away from other body functions.  If the body is not allowed to rest and replenish, then the exhaustion just builds and builds until there is  a consistent overload which results in utter exhaustion.   The brain is no different than any other body part that is overworked or stressed. Rest your body (and, therefore, your brain) on a  regular basis. Understand that you cannot do what you used to do. There is no point in working against your own brain. Manage your MS by understanding the parameters that fatigue places on your lifestyle.  Be creative and work with the fatigue.  Understand it.  And each and every day, prioritize.  You cannot do it all, so do what is most important to you.  That is not failure.  It is wisdom.’ 

This explanation stayed with me.  After all these years, something clicked. I left that appointment with a perspective which I am trying to incorporate into my daily life.  And it is surprisingly difficult, but I’m trying. 

I have always been an overachiever in terms of effort.  But never an athlete.  I now visualize a marathon runner in my brain and feel quite smug.  A little out of breath, but smug.

It’s like an unwanted house guest who just will not leave

I have a friend who is a psychologist.  She specializes in issues around loss and acceptance.  As a friend, she has always advised me to make friends with my MS.  She suggests that there will be a constant internal conflict if I see the disease only as an antagonist.  I suggest that there will be conflict if I accept it as a friend.

As my disease moves from its pattern of stability toward one of progression, I often think back to my friend’s advice.  I am aware of the relationship between stress and illness and understand the importance of inner peace; that the conversations between mind and soul need to find stasis, need to find a quiet meeting place.  That in order to move forward, or even to move at all, we need to still any internal battles; need to negotiate some kind of settlement between opposing forces: friend or foe.  Gift or unwanted visitor.

This MS is not new to me.  It’s been with me exactly half my life.  So, one would think that we had a strong bond by now, it and I; perhaps a mediated truce.  If so, it has been decidedly one-sided.  During the first 25 years of my disease, I was consistently grateful.  Grateful that I healed after each exacerbation: grateful that my vision returned; grateful that my drop foot corrected; grateful that my flesh stopped burning; grateful that my chest spasms stopped ripping through my torso.  So, yes, I did have a relationship with my MS.  I saw us as a kind of partnership; kind of like ‘good cop, bad cop’.  I understood the reality of housing this unwanted visitor, understood our roles.  It ravaged and then repented, and my job was to be appreciative and grateful at the repentance.

And now, this visitor has taken taken over other rooms in my house, uninvited. Rearranged stuff and shifted things around. No discussion, no negotiation, nothing. A GPS gone awry.  And I’m not feeling friendly.  Not overtly rude or obnoxious, but definitely wary.  Very wary.