Keeping My Eyes Open

 Every now and then I struggle to keep my eyes open.  MS fatigue (lassitude) is unlike normal fatigue.  It's a weariness that makes it challenging to manage daily self-care.  All that matters is that you're able to lie down, somewhere.  When I have days like this, it starts first thing in the morning, even after a decent night's sleep.  I eat breakfast, and despite having a couple of cups of coffee, my body says, "Take a nap, why don't you?"

Full disclosure:  I recently got a new puppy.  Leo.  A yellow coated, chihuahua-terrier mix.  Energy personified, but packaged in a size that accommodates rapid sprints up and down the hallway.  Whoever invented the tennis ball has another tiny canine devotee who deeply appreciates his ball.  

So, needless to say, I am getting more exercise lately.  Fortunately, Leo isn't one to cry through the night.  He tucks in at about my same bedtime and we meet up again in the morning.  He also has taken quite well to a Porch Potty.  I don't have a proper backyard, so it's awesome that he uses this.  He's already signaling his need to go out by running to the back door.  I don't sit down for long these days, but the puppy phase will eventually end. But here are my stats for our first week together:

2386 calories

27,653 steps

12.62 miles

69 flights climbed

To be fair I should also mention the cat.  She's a senior with health issues that have to be tended to.  My master bedroom has become a feline hospice, and the bathroom now houses a litter box, water fountain and food.  

So.... when I found myself with a bit of quiet time to put my feet up and read a little this morning, my eyelids would not cooperate.

I've had to learn to give myself permission to rest and give up the to-do list.  

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.

Dear Terrorist

I woke up this morning thinking of you, so I thought I would drop you a line.  I write to you not knowing who you are or where you are so how to reach you is unclear.

I imagine you are young.  I am a grandmother.  I hope this is not a deterrent to you hearing me out.  I will try to keep it brief.  Maybe you are busy, or hiding.

I know you were small once and that you have parents.  Maybe you have siblings and a grandmother like me.  It is not easy growing up and I know this because I had to grow up like you.  In a lot of ways I am still growing up.

If you are thinking that we have nothing in common, I would have to disagree.  We have everything in common that really matters.  We both have hearts that beat, we breath in and out, we seek joy, feel love, live life, desire much, experience pain, endure loneliness, and cling to hope to name just a few.  We are only human, you and I.

Which is why I am writing to you, wherever you are.  Before you take the next step into whatever terrorist thing you are planning, could you think, really think, about our common humanity?

If we sat down together in my house with whoever your youngest family member might be, my grandkids, your mom and maybe some family photos, a pot of tea or some good coffee, we could talk, about everything.  We could take turns listening.  We might be surprised to find we have a few things we could laugh about together.  Maybe you would change your mind about the suicide vest. 

We are all only human you know.  And really, what is left behind after so many die?  If you die we will be forced to go on without you.  Your dreams and hopes and ability to become great here on earth will be forgotten.  I wonder if that is what you really want?

Sincerely,
The Common Denominator

Guarantees

Startling and unconscionable.  When I think about all that has occurred in the past two days, the uncertainty of day-to-day existence is flagrantly empty of any hint of guarantees.  Which is why my dear friends, the moments we live are so very, very precious.

Wherever I am at this moment, is what unfolds for me to live.  What I want, above all else, more than long life, fame or wealth is to arrive at the end of my life with the certainty that I had in fact lived it.  And how not to come to think that years have been wasted, that I should have done better, that I was a failure, is to begin at this very instant to live with an open heart.  

There are no guarantees of anything except the inevitabilities of the human life span.  Entitlement is perhaps just a myth.  What is certain is the way I chose to live out the moments at hand.  That’s it.  That is enough.  All of the suffering in the world can be quenched.  If it is possible for one of us, I believe it is possible for all.  

Always I am looking forward

Where is my hope?

What choice do I have?

Asking questions about the past

Why was I so blind?

Where was my protector?

Anxiously waking to the sunrise

How will I survive another day?

What if all is lost?

Guarantees are written regardless of the pain

Can I rejoice amongst the deep and silent?

Is there a place free of suffering?

Love must flourish 

Here is our hope

Here is our vision

Here is our joy

Here we must be

Hokusai Says

Hokusai says look carefully.

He says pay attention, notice.

He says keep looking, stay curious. 

Hokusai says says there is no end to seeing

He says look forward to getting old. 

He says keep changing,

you just get more who you really are. 

He says get stuck, accept it, repeat 

yourself as long as it is interesting.

He says keep doing what you love.

He says keep praying.

He says every one of us is a child, 

every one of us is ancient

every one of us has a body.

He says every one of us is frightened. 

He says every one of us has to find

a way to live with fear.

He says everything is alive -- 

shells, buildings, people, fish, 

mountains, trees, wood is alive.
Water is alive.

Everything has its own life.

Everything lives inside us.

He says live with the world inside you.

He says it doesn't matter if you draw,
or write books. It doesn't matter
if you saw wood, or catch fish.
It doesn't matter if you sit at home
and stare at the ants on your veranda
or the shadows of the trees
and grasses in your garden.
It matters that you care.

It matters that you feel.

It matters that you notice.

It matters that life lives through you.

Contentment is life living through you.
Joy is life living through you.
Satisfaction and strength
is life living through you.

He says don't be afraid.
Don't be afraid.

Love, feel, let life take you by the hand.

Let life live through you.

- Roger Keyes

Transitions

The little girl never knew how small and vulnerable she was.  She lived in a world that seemed to her both vast and uncomplicated, immense in scale and minute in detail.  And all this within herself, coexisting in perfect balance.  For a long time she never saw a problem with this arrangement.  The boldness of innocence swept her along past the mirrors of social  acceptability.  

Small things were just as weighty as those considered large.  A grain of sand was a mountain waiting throughout eternity to meet her on a sunny summer day.  A small smooth stone had patiently existed through countless sunsets for a moment of marvel in the palm of her hand.

And so, without being a partner in the scheme, she seemed to be okay.  No need for raucous hilarity, pious solemnity or cataclysmic despair.  There was air to breathe and poetry to write and birds that sang every morning.  And then one unremarkable day the whispers came.

The gut level inkling that the previous rhythm had lost its place became a constant companion.  Was it when the mean girl pulled her hair and followed her after school to taunt and tease?  This mirror was, she thought, a fearful nuisance and if ignored it would surely go away.  Which it did.  The content of its incidence was so beside the point that it was hastily forgotten and never mentioned to anyone at home, shifting naturally out of the moment while in the same instant quietly present with her tormentors.  

The mystery of transition is that it is always happening.  At times rapidly, always an eternal event and sometimes difficult to perceive.

Tormentors abound obvious.  Woe to those who pause to acknowledge and collapse exhausted and sad from the din of those who pester and annoy.  Woe to those who ignore their attackers, waiting out the onslaught, all the while expecting to be jumped and beaten to the ground.  The only question really, is, “Will I, should I fight back?”  The answer will arrive when it is needed.  Meanwhile, transition happens, continues unceasing and needing no help from anyone.

Little girls transition to bigger, older little girls.  The world is still vast and minuscule, simple and complex, simultaneously filling up each living being.  Continuance requires change.  The transitory is always with us.  Ignore it and it will not go away.

Doorways and Anchors

Another experience of separation came to teach me this week disguised in the sudden death of a beloved pet.  What I took for granted, expected to exist and cared for every day, was gone in a matter of seconds.  How do we, how do I bring the truth of life's frailty into a shared space with the pain of separation?  Acceptance and helplessness seem joined at the hip in some circumstances.

The Buddha taught that impermanence will cause separation from everything and everyone I care for.  Pain will occur in some shape or form, in every living being.  Suffering, however, arises from grasping for what cannot be, and also for what can be.  We do not have to suffer.

These teachings are beautiful, simple truths.  As I live out my days in these latter years of my existence my feelings seem more intense than ever.  And as I make a space for my experiences to dwell, I am learning to hold them and regard them with loving compassion.

Without judgement, I look at them all; the anxious thought, worry, sadness, peacefulness, joy and acceptance as they appear.  No longer do I entertain negative self-talk as I did for so many years.  Shaming, chastising internal dialogue has been exposed and abandoned.

Where there is love, kindness and self-acceptance alive in me, all these can then be available to others, genuinely.  Life in this moment is our agent for joy, peace and hope.

Another loved one passes through the door of earthly time, and what I feel is what it takes to anchor them within my heart forever.