CELEBRATE!

How do you celebrate the good times in your life; the smile-inducing memories?  All the years I spent doing fun-run events, marathons and triathlons, mark some of my favorite personal achievements.  Not that I ever came in first or even finished in the top ten; I certainly did not!  But I saw improvement in my abilities for a time and learned a lot about myself.  

In order to do triathlon I learned how to swim properly and ride a bike with clipless pedals.  I gained personal bests in 5K and 10K events.  And, without realizing it, I was keeping MS in check.  MS was there, lurking, during those years, showing up as a persistent lack of stamina that I could never overcome.  An MRI for a stubborn headache revealed evidence of “demyelinating disease” while I was training for my next triathlon.

I have a couple of notorious closets here at home that contain things untouched for a while; okay, years.  Maybe even a decade ... or more.  

In one of these deserted chambers dwell my treasured running memorabilia.  T-shirts, finishers' medals and swag, camel-backs and clip-on food pouches.  There’s even a foil thermal blanket handed out at a marathon finishing line.  All of them, hard won emblems of my years of fun runs and weekend warrior-ship!  I’ve even kept every bib number I’ve ever worn in a large photo album.  Priceless stuff.  

What to do with my trinkets and sentimental keepsakes?  The t-shirts in particular, are dear to me as evidenced by the pile of them that have lived in a far corner of my bedroom walk-in closet.  I decided to make them into a quilt, so that I could enjoy their colorful graphics and the achievement, fun and fitness they represent. 

The things learned during those years have remained with me long after my last event.  I may not have the same abilities I had once but I am grateful for the time spent running, swimming, biking.  No regrets, just appreciation for having taken an opportunity when it came.  Now as then, I celebrate the good stuff.  More smiles to come.

Pandemic Puzzle

I just want to say that the pandemic isn't fun anymore.  At first, like maybe two weeks in, it was kind of surreal and edgy.  Annoyingly interesting.  "What is covid-19?"  we wondered.  "A bad flu bug that's fatal to the elderly?"  No one knew what to think really.  Now we know it's no joke.

But we're all on Zoom and Webex happily chatting, thrilled with new-found techie stuff.  You can talk and laugh with your friends and it's kind of a cool thing to do.  (We're so close to being teleported ... I can feel it.)  

I'd guess that parents probably lost the fun factor before everyone else did.  Suddenly you are teaching your kids at home, trying to entertain children that one normally would not see during work hours.  An eternal weekend forced upon us.

And now, these many months later, it is probably safe to say most of the population is fed up with being told they should stay home all the time.  And so, we wait.  

I am working on my third monster puzzle in four months; 1000 pieces of blissful absorption that has the ability to keep me up way past my bedtime.  I have converted to grocery delivery.  What took me so long to embrace this I couldn't tell you.  May I never cross the threshold of my neighborhood grocery store again, unless absolutely necessary.  The money I save not having to wander through the bakery section on my way to get milk.

I have cleaned and oiled the sewing machine and made a bunch of face masks.  Started a quilt with all those running event t-shirts that have lived on a shelf in my closet for a long, long time.  Lots of little projects that were always in the to-do pile have bubbled up to the surface and keep my mind off of my aforementioned numb appendages.

And I should also mention, I have done what I can to keep GrubHub, Door Dash, Uber Eats and InstaCart solvent.  Eating out at home isn't so bad.  In fact it's awesome; you don't have to put on presentable clothing, shoes, saves gas.  I mean, I do miss eating out, but I can indulge behind closed doors and succumb to a blissful food coma afterwords.  No one need ever know that I ate dessert first or half a medium pizza.  Ah yes, the momentary pleasure of a good craving.  

Mood Changes in Multiple Sclerosis

The National MS Society in partnership with The MS Society of Canada have published a short book and accompanying video entitled, “Mood Changes in Multiple Sclerosis.”  In it, the contributors outline the mood changes common in MS and offer strategies for treatment.  The preface states, “We now understand that mood and physical functioning are intricately entwined, and treating one area often brings profound improvement in other aspects of an individual’s life—and the lives of their families.”

Specifically the book speaks about grief, depression, and anxiety, and touches on bipolar disorder and pseudobulbar affect.  There is also a section devoted to fatigue and mood.  Fatigue being one of the most common symptoms of MS it is also not just a physical symptom.  Fatigue can also be a symptom of depression and a change in mood can affect fatigue.

We talked about mood swings at my weekly wellness program recently.  Changes in mood, depression and anxiety are very common for people who live with Multiple Sclerosis.  I struggle with anxiety.  Awaking at night with fear and worries not based in any discernible or otherwise verifiable fact, my fantasies skew in the direction of the catastrophic.

Eventually I signed up for a series of mind-body-medicine-focused anxiety management classes.  In them I learned to recognize anxiety when it arose in me by learning to practice mindfulness.  The later classes in the series added the meditative movement practice of Tai Chi.  And a simple yoga regimen gave me tools to improve my state of mind and gently strengthen my body.  Mindfulness practice has been a game changer for me and I am able to cope much better with stress and anxiety.

There is only one you.  There isn't a spare in the trunk of the car, or stashed in the hall closet, waiting patiently should your current self become too tattered to function.  So, if you've been blessed with a chronic illness and the ups and downs of everyday life become a bit much, which they will, take heart, there is hope.

Life with or without a chronic illness is not easy.  Trying to sugar-coat this stuff in a way that makes it any easier to swallow isn't a very useful way to approach the challenges but neither is pulling the pillow over your head and giving up.  What I would say though, is to try not to add fuel to the fire.  The realities of physical and emotional health can be exacerbated and intensified by a toxic attitude, doomsday perspective or rampant negativity.

Granted, feelings do emerge and can run roughshod across our lives.  Feelings are valid, but they don't have to be in charge.  They can be released.  And just as mysteriously as they pop up, they also fade away.  Holding onto the saga, running the stories of sadness and despair on auto-repeat only deepens the rut they carve out in your thought life.

Resilience. My best friend.

Resilience has been a rejuvenating concept for me in recent months. When I think of resilience I think of flexibility.  Life with MS has thrown many unexpected situations into my world.  Resilience is that solid framework I build coping mechanisms upon. Being resilient allows rom for the flexibility to modulate response.

Resilience means seeing a way through difficulty, not insisting on having a specific outcome. And while I believe that even the most difficult circumstances have positive elements, I am not encouraging resilience if, emotionally, I depend on all outcomes being positive.

Resilience has kept humankind on the planet.  Despite humanity's proclivity for self-destruction, humans continue to survive.  Need I say that I hope this trend continues given that the ability to self destruct has become so readily available.

But on a more personal level, I know I must be resilient in the simple act of living day-to-day.  I never know how I may start the day when I wake up in the morning. What tools will I need from my survival kit?  And if the bottom starts to fall out, what can I do to redeem the day?  How do I manage to take care of my needs in the moment?

MS is a fickle companion. Some days it ignores me and other days it demands my full attention.  But resilience is like a best friend with no other agenda than to keep me afloat. I try to find victories in the simple things. Playing with the cat. Watching baseball (okay, no guaranteed victories there). Popcorn and a movie. Pausing to watch the sunrise.

Sunday morning, obviously

Of every other day of the week, Sunday should really smell like bacon and coffee.  Really.  About a year ago, I let go of my frantic grasping of vegetarian eating with the startling realization that even adherence to that noble gastric discipline takes lives.  This morning I stand quietly in my kitchen peeling the wrapping off a package of sulfate free strips of impending deliciousness.  And with my fill of breakfast I sit down to satiate my next appetite at the keyboard. Right now, it is time to write; now, since it has been a while. I will play some piano later on.

Back to Sunday morning and the past 5 years of living alone, this has been my day to accumulate my stuff from the week and attempt to write something that I will like reading afterwards.  The book of short essays that masquerades as a memoir is ready enough for me to make a call to an editor or two.  I almost think it would be easier not to stop writing it than to say it is “ready” because I know it will morph into something else once a more astute eye looks at it. 

So obviously, Sunday mornings will need to become Monday mornings and spill over into Tuesday and Wednesday.  Thursday has always been my favorite day of the week so I don’t want to exclude it.  Fridays I should go shopping and out to lunch or catch up with friends over good Mexican food.  Now that the inevitable has transpired I will potentially have Sunday mornings all week, sans bacon but always with coffee.  You see, my corporate gig is over, at my choosing, with some encouragement pointed towards my bank account.

All the mornings spent getting dressed for work, standing in my closet thinking, wishing, hoping, “If I get a package....” are now history.  Surreal as the day the last of my five kids packed up, took her sweet dog and moved out of the house, the package actually arrived, the eagle landed in an email.  I am ready to fly. 

With all of the joy that I feel in the closure of a fruitful 19 years with the same company, I am burdened with the realization that many other employees were not given a choice to leave.  We knew.  We waited to hear.  Some would be taking their last walk to the exits and we knew the day was coming, but for me, this foreknowledge did not dampen the shock. 

It is not the change that was shocking.  Granted, passing by cubicles with random items left behind by employees that had been let go was a downer.  Change is constant.  Even my dad, by whom one could set a watch, changed over the years and not just by aging.  What I find more disturbing is how far the human response will go to obtain a desired object.  Grasping for a desired outcome, or goal is not a bad thing unless it becomes necessary to trample others in the process. 

To be fair, a certain element of grasping is at the heart of any for-profit business venture.  Grasping in some degree is likely at the heart of just about anything initiated by a living being.  The animal kingdom is a food chain and I inhabit a link somewhere in it.  I can feel bad about that if I care to think about it much but without it would I have been born?  There is something to the whole survival of the fittest, circle of life thing, but road kill is just gross.

This might be a bit too long for a blog post.  I feel a new essay coming on.  I’ll make some more coffee, but that’s enough bacon for today.

Notes at 2:00 AM (Got Sleep?)

Drug induced sleep means I wake up in 5 hours.  I need to ask my doctor what I am supposed to be getting out of taking a muscle relaxer for spasticity.  I don’t know which is worse, being unable to fall asleep because of spasticity or taking the medication, not sleeping soundly and waking up with spasticity anyway.

Once I am awake and my brain can tell I am paying attention, whatever is really bothering me gets air time.  This particular morning work decisions are moderating the conversation.

I work for a great company that does really well by its employees.  As a single mother of five, my children and I survived their growing up years primarily on my income.  I have had great benefits and career opportunity.  Although I have not “achieved” in ways that bring accolades and notoriety, starting out as an administrative assistant and becoming an IT professional is not such a shabby accomplishment.  This will be my 19th year with the company.

I would like to wind down a bit as I head into the home stretch towards retirement.  I would love to work a shorter week.  The financial impact of doing that would reduce my ability to save aggressively these last couple of years.  The longer I can work full time the better off I will be later but lately it has become more challenging to make it through the week.  By Friday I am wiped out physically and cognitively.  

So anyway, what am I going to do right now about being awake?  Read?  Maybe I should get up and go downstairs.  Or not.  Hungry.  No eating, too early.  No backlit screens.  Book.  Sleep will come.    

two days later....

Why am I awake again at this hour?  I cannot blame it on the muscle relaxer this time.  What was the first thing I became aware of as consciousness returned?  My left foot jumping about under the covers.  Pain.  Muscle twinges in random places.  Why am I hungry?  I ate a late dinner.  At 8:00 PM I finished off two small chicken thighs and some steamed cauliflower.  Maybe I need a drink of water.  

The vertigo has been back the last several days.  It makes me feel queasy and as if I am about to fall over.  A proprioception issue?  I have been quite clumsy this week.  Banging up my hands.  Dropping things at the grocery store twice the same trip.  Luckily the one that fell to the floor was a plastic bottle.

It has been raining all night.  The sound of the water running through the gutters and tapping softly on the roof is like music.  Soothing.  Peaceful.  There are moments of beauty and spaces of gratitude in most everything.

Just Keep Swimming

How to finish the book.  It seems close to being done sometimes.  My fatigue in the evening drains me of incentive.  Weekends are my only respite since I have a day job to sustain throughout the week.  I must keep trying.  

Annie Dillard claims a book often takes years to complete.  I know there are themes everywhere, enough for more than one good story.

Writing comes from my core being which, with fragments of childhood persona lingering, is constantly changing year after year.  Reading the draft after a lengthy absence reflects evidence of the shifts in perspective that time can bring.  I wonder if painters feel the same way.  Does a painting remain a work that is satisfactory years later?  

Does the writer become the voice that endures, or is it the story that lives?  Would Maya Angelou look back at her early work and wince?  Before her death she had written so many wonderful stories that seemed to simply need telling.  It wasn’t necessary to add any moralizations or philosophical insights.  Each story told itself.

Whatever else I do, being creative satisfies a deep longing to bring a version of truth into being.  Whether or not another living being reads anything I write, although that is desirable, doesn’t really matter.  I will write anyway and trust that if I just keep swimming the next moments will be there.