Golden

On a warm, sunny spring day when I was maybe 7 years old my Dad took me fishing. He took me fishing once, and only once.

The fish were running so thick on the Potomac River you could just about scoop them out of the water with a net if you wanted. We loaded up our gray Rambler with fishing gear and the night crawlers I had dug out of the soft brown soil in the flower bed. We drove to a stretch of river access with easy parking against a grass lined paved walkway dotted with benches. A railing separated the walkway from the water. We set ourselves up on a bench and I was given a pole and directed to bait the hook. I spent several minutes fumbling with the hook and out of concern for the safety of my fingers Dad took over and skewered a large earthworm for me.

I was more interested in skipping back and forth along the railing, looking at the fish teeming just below the water’s surface.   When our lines were ready I was given a casting lesson and standing patiently along the railed walkway I waited for the action to begin. When it seemed the waiting was unproductive given the obvious presence of plenty of fish in the water, Dad had me jerk on the line as I walked along the edge of the railing which resulted pretty quickly in a snagged fish! I squealed with glee with each catch and it took little time for me to fill our bucket.

I had no idea this bucket full of wriggly fish was intended to be the evening’s fish fry. So, I gave them away. Dad reacted visibly but did not overrule my gift giving. I offered them to the folks that were fishing next to us when they admired our catch and they were happy to receive them. Indicative of my parents’ approach to child rearing it was assumed that I knew what was going on and that we were going to eat the fish Dad and I caught. In all likelihood there most certainly there had been some conversation to this effect that I had tuned out. The white noise of parental pontification was often the background noise upon which I staged my juvenile thought life. They must have questioned my sensibilities often.

Dad was quiet on the drive home.  I’d had a great time, and I suggested that a hamburger and fries from that snappy new McDonald’s drive-in would be a fitting end to the day. When we stepped through the front door Dad’s proclamation regarding my generosity betrayed his real feelings. I didn’t see the problem, but like I said, he only took me fishing once.

Fish fry? Not for me - but thanks anyway.

Empty The Boat

Change.  Impermanence.  Everything changes.  What kind of cosmic joke is that?  Change is a universal experience for everything and everyone and I am just as subject to change as the rest of creation.  The changes brought on by Multiple Sclerosis are my personal object lesson in physical impermanence.  But even the sadness and discontent I experience at times as I grapple with physical limitations can dissipate completely given the right stimulus.  And to top it all off, MS limitations themselves also change and give me no certainty from day to day that any of my well laid plans will come to be. 

Life is like a river full of events, flowing constantly.  Where there is life there is change.  A simple concept with profound implications.  The very ground I try to plant myself upon and affix my world to is simply unreliable.  How do we get through life with so much turbulence?  Are we kind of numb to it?  Do we tune in to a different channel to obscure the facts?  Are we zoned out much of the time to escape?  How am I supposed to  cope with so much serendipity?

There is a way.

I do not remember when I first began to think that I was separate from the whirling storm of feelings and ideas that crowded my thoughts.  Was it as a little girl who grew up in a home characterized by chaos and uncertainty?  Was it there that I took a step back to observe without internalizing the relationships and situations?  Or did I just block out the dissonance and wait for the liberation of young adulthood?  If I could have said  anything to the teenage me those many years ago, it would have been, “... you are really close, but let me tell you about compassion, self care and love.”

Mindfulness meditation is about embracing life as it is and myself as I am.  With the awareness that change is inevitable comes the understanding that everyone experiences change.  We are all connected to one another by the ways in which life impacts us.

As I steer my vessel across the river of this life I will encounter other vessels and will likely bump into one or two.  When that happens I may find myself at odds with the pilot of the impeding craft.  Once I begin to see that the occupant and I are one, the opposition vanishes, whether the pilot is a face with a name or a disease I attempt to  hold at arms length.

Dreams

Where do I go to hide from MS?  Is there a place I can just hang out for a day or two and not be reminded that I have this spectre of physical impairment following me around?

Lately I feel drained and really tired towards the end of a day.  In the morning I have a decent energy level and breakfast is generally very satisfying.  Lunch is my biggest meal of the day and I’m still moving along at a good pace.  But after work I’ve got very little left in me and if I have dinner, it had better be early so that I don’t end up going to bed on an empty stomach.  Not much else happens after I get home at the end of the day.   

Today is Saturday and I have been busy doing laundry, and helping organize my son and daughter-in-law’s things as they settle in here for a while.  I even washed walls in hopes of doing some painting this weekend.

I could feel the strength leaving my legs and arms by about 4:00 and after a shower I could barely move.  It frightens me to not be able to function.  My vision is blurry.  It takes a lot of effort to move my legs.  My arms seem really tired.  All of this is frustrating because I feel inadequate, weak and unable to cope with a "normal" activity level.

I spent two weeks in Austria earlier this month, visiting my daughter and son-in-law who have a new baby girl.  I didn’t have to cook, drive or even do my own laundry.  And although I was tired after we had been out sight seeing, I wasn’t terribly fatigued or weak.  It has been a revealing comparison of activity level and energy.  

I will spend the rest of the afternoon and evening resting, reading as long as my eyes cooperate and working at being gentle with myself.  Pacing myself will help me manage my days.  MS will decide how much mobility I have and I will need to adapt and adjust.  

Last night I had a dream that I was in a wheelchair.  I was passing through a hospital setting and when questioned I said I was not a patient; just visiting.  Leaving, I took an elevator and went alone into the street on my way to a better destination.

Gracefully, gratefully...

...aging.  A process I hope will be characterized by gradual decline and not a poorly timed free-fall.  I liken the process of aging to parenthood.  There is no written guidance, and no certain outcome aside from the inevitable taxable event.  Searching for the shaman of my golden years, I look with some reassurance at the paths of those who walk a bit ahead of me.  

Speaking of walking, I have been doing so every morning, very early.  The new light of day sweeps away the cobwebs clinging to my eyelids and once I get the motor started the body starts to move along fairly smoothly.  

Earlier this week while on the homeward end of my normal route, I had taken my glasses off because they darken, almost too much, in the sun.  As I walked I saw a medium sized white metal cage sitting beneath a tree about 5 or 6 feet off the road in an empty lot.  Inside was a smallish, dusky brown object with a pale stripe around its middle.  It was very still.  It seemed to be sitting, nose against the corner of the cage,  legs and feet tucked beneath its body.  

I was appalled, disturbed and dismayed that someone would be so cruel as to abandon their guinea pig on the side of the road.  I stopped and stared not knowing if I should call animal control or take the poor creature home with me.  I looked both ways up and down the street and saw no one of course.  This damnable act had been done under cover of darkness no doubt!  No water bottle, no food; was the poor thing even still alive?

With my heart pounding in my chest, I stepped a little closer.  I hate coming upon dead things.  Especially when they were once pets and deserving of decency of care.  Tentatively, I leaned closer to the cage, still standing in the street, toes braced against the curb.  

I had been standing here for several minutes at this point.  So far I had taken in some very concerning bits of information and I was faced with a decision I did not want to make.  So, leaning in, I put on my glasses.  After taking a closer look, I turned away quietly and walked the rest of the way home in the bright glow of the morning sunlight.

I like to think I have a reasonable grasp of reality, that I am fully cognizant of things as they are.  I like to feel as though I understand my limitations and have clarity around my strengths and capabilities.  It is beyond me what the child (presumably) had in mind, putting a plush football in a cage, and leaving it beside the road.  But I hope the parents take that as a sign that this youngster is not ready to assume responsibility for the care of a small caged animal.  And let me assure you that I never leave the house without my glasses.

Joy

"But, Mousie, thou art no thy lane [you aren't alone]

In proving foresight may be vain:
The best laid schemes o' mice an' men
Gang aft a-gley, [often go awry]
An' lea'e us nought but grief an' pain,

For promised joy. "  --Robert Burns


Who planned for their life to this point in time?  If you had asked me when I was about to graduate from high school where I would be in 30-plus years the answer would have been - not here.

I might have agreed upon family, career and a comfortable life.  I may have pictured myself as I am, on the west coast rather than hunkered down amidst my east coast origins.  But nearly everything else has been a best laid scheme.

The human mind likes a plan.  Thoughts revolve around what we want to have, where we want to go and what we want to do next weekend.  Is foresight really vain?  Like the mousie of Mr. Burns' poem, I set about to build my nest without a thought of it being unearthed by anything.

And yet I have to tell you I am more than happy, more than blessed, more than fortunate.  Why you ask?  Why and how could you be considering, well, so many things you have been through?

I have literally had people look me in the eye and say, "I thought I had a rough life until I heard about what you go through."  And so, it is best not to rely on others' for uplifting sentiments.

I my friend have everything I need.  Even in moments that are less than glorious, I have wealth at hand that never fades and will not pale against a stormy day.  I cannot point to a book, or a person, or a solitary concept without embracing the entirety of creation in my riches.

Needless to say that grief and pain are painted into the artist's work, but so is promised joy.

Perspective. Potential. Hope.

Spring in the Sierra foothills brings a freshness to life that is exhilarating.

Open skies are fresh from drenching rains.

There is still snow visible on distant mountains.

Birds are busy in their courting.

All this and more remind me that hope is alive.

What I can change I will.  What I cannot change will not be a burden I carry.

The Future

Drama, mystery and intrigue.  I am not really a fan of TV or movies with significant suspense, anticipation of catastrophe or extreme dramatic tension.  The last film I saw in the theater with these characteristics found me literally trembling uncontrollably in my seat, my eyes glued to the screen.  

I am not ashamed of this bit of self-knowledge.  I sleep well most nights without such sensory overload being incorporated into my evenings.  It is a simple thing to change the channel or mute the sound or turn the set off when you own the venue.  I honestly find it empowering to release myself from the mind meld that seems to occur when I watch TV.

My life has been full of drama, mystery and intrigue and I have many, many questions that do not have answers.  I like to "know" and understand "why" things are as they are.  Unfortunately that is not always possible and I have decided to accept that.  

It has only taken me my entire life to come to this point.  I am glad I made it because now I can relax and enjoy what is left.  I know there will be times when events will unfold before my eyes that will leave me trembling in my seat.  I can choose to bolt for the door and hope I make it without falling or decide to wait until the lights come back up and calmly make my way home again. 

Diagnoses

Multiples.  There will be more than one you know, as time goes by.

Whatever.

I think what matters most is what I think about who I am at any given point in time.  Am I a person living with MS?  Am I a person living with..... arthritis ..... or ABC disease, or just some odd malady the doctors cannot figure out?

What really matters?

To you.

And me.

Well let's explore this question together for a few minutes.

Do you like baseball?  I do.  I spend entirely too much time on the couch watching my favorite team and commiserating with the community at large about their future.  It becomes obsessive if they happen to be having a good season.  Everyone wants to be a winner.  Even if it is vicariously experienced.

I have children.  A lot of people have them.  Some people are without and I have mixed feelings about that.  Like, people without kids seem to have money to buy whatever they want.  Even though my kids are all grown, I'm still "recovering" from years of making sure we had toilet paper in the house and keeping the refrigerator full.  I no longer need to grace the doors of the local big box store, but nonetheless, years have been spent there.  Years.  And a lot of money.

So now, as I rapidly approach my 60th birthday I think about multiple diagnoses as part of the landscape and I am tempted to say, "I told you so."  Eventually everyone has at least one and chances are there will be multiple diagnoses that will need to be contended with.  Each one will demand its share of my attention.  What is really at stake here?

The challenge is to find the center of everything.  The goal is to be balanced, grateful and at peace.  Really.  It is no secret that I will rise to a pinnacle of life at its prime and then begin a (hopefully) gradual drift into my "golden years."  I would like to arrive with a smile on my face, or at least a grin of satisfaction that I am enough.  I have done enough.  I am whole and mostly ok where it really matters most.

If I have eyes to see it, my will path converge upon a green, verdant forest, that echoes the timelessness of life.

What really matters?

Marathon

I have been a runner in my lifetime.  Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion.  In 1999 a friend talked me into doing a "fun run" with her.  She had just had her third child and wanted to get back in shape.  She had been very involved in track during her college days and was really quite good, and fast.

I said yes, and over the next five years I ran in several events including four marathons and three triathlons.  In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease.  My next marathon had begun.  It took another six years of head scratching before the diagnosis came.  Oddly welcome.  Nice to know the reason why, right?

Some questions though, do not have answers that feel satisfactory.  And then there is the whole thing about not knowing what the future holds.  All there really is to plant my feet on is what is in front of me right now.  I am more than ok with that.  Distance running is kind of the same.  Being in the moment, being with myself is a big part of what I would try to do during a long run.  

Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care.  Running shoes are optional.