The Rocking Horse

Looming more than ten feet in the air, the perfect storybook rocking horse dominated the space.  People climbed the open stairs that leaned against the horse's body just so that they could sit in the large saddle.  

Cradled in her mother's arms, little, two year old Rosie was intrigued, but she did not want to venture up those stairs that loomed in front of her.  As I watched my granddaughter and the horse, I wanted to get out of my wheelchair and climb those stairs.  The desire to wave to her as I sat on the horse whelmed up in me.  "What would she think?",  I wondered.  Carefully, I considered the height of the stairs, the open treads, and the length from the top stair to the saddle.  If I did manage it, how would I get down?  Desperately, I wanted to freely enjoy the moment of childhood abandon.

Reality punched me in the heart as I knew that desire could not be realized.  The stairs were too steep; the saddle too high; the climb too precarious.  Brushing away the hope and tears, I turned and smiled at sweet Rosie.

Yesterday, I had the delight of spending the day at Navy Pier's Winter Wonder Fest with my family.

The Gift

Think back to a time when you opened a gift and thought, "What were they thinking? Why would they give this to me?"  How did you feel? How did you respond?  What did you do with the gift afterwards?

Now, think back to another time when someone opened your gift and it was not well received. For some reason, you knew that they did not like the present. How did you feel?  How did you respond?

The event of receiving entails two components; the act of giving and the act of receiving.   Both are receivers and both are givers. Everyone involved has an emotional connection in the moment.     When receiving a gift, the receiver has in their control to also give a gift to the giver.  When giving a gift, the giver receives something in return.  When a gift is poorly received, an opportunity is lost. 

Facing chronic illness helps me to focus on what matters the most. It may sound trite; but, love for the giver is far more important than love of the gift. 

In this season of the overburdened pursuit of finding the right gift, I implore you to turn your thoughts outward. You might be surprised when you discover that you find more joy in the pursuit of learning the right response. 

When you open your gift this Christmas, look up from the present and thank the giver for the gift of their love.  

"For God so loved the world that he gave His only begotten son"

Predestined

Predestination: my American spirit bristles at the confinement this word conveys to me.  The idea that my life's path was somehow predetermined by some greater power sets my nerves on fire.  Still, let us take the idea a little further.

What if the interpretation is a little broader.  Rather than being locked into course of events, it could mean that we were predestined to have certain physical characteristics, to possess a particular personality, and to meet certain people along the way.  Surely, you will agree that you did not choose your looks.  Maybe, you will agree that your basic personality was formed before you had any input.  Lastly, although, you can regulate who are your friends, you did not determine your relatives and cannot control all the people with whom you interact.

These three components (physical characteristics, personality, and relationships) are major building blocks of our lives.  So, we were predestined to live as we were formed in the womb.  We were created.

If you are willing to embrace the idea of predestination, you may find freedom instead of restriction.  To live your life with a purpose can give you peace in the midst of the most madding situations.  When I focus on what I can do or with whom I consociate, then everything becomes calmer.

Whether I like it or not, I was predestined in my mother's womb to have muscular dystrophy.  A simple fact.  Period.  Now, what?  Strive for excellence?  No.  Strive to live out my life as I was predestined.  Predestined to have muscular dystrophy, a strong personality, and a relationship with people and God.

Pushing On

A life dedicated to pushing forward at at times. Impossible. That is what it amounts to being: fighting a useless battle. To what end?  

I know the outcome of the war. The disease will slowly erode my muscles. Month by month, mobility will decrease; energy will dissipate; functionality will lose its meaning. 

Already, sometimes, I feel incapable of even wanting to do anything.  Other wheelchair-bound souls find meaning: Joy in the moment or anger in the day.  

The black letters taunt me. The dark lines contrast with their bright background. The two opposites work in conjunction to bring meaning.  Is this the lesson for today?  The positive and negative need each other to produce a life-altering purpose. 

Does my decreasing health bring a clarity of which I would not possess otherwise? Knowing that we all leave a legacy would not shine so glaringly in my life. There is nothing that remains for eternity as the relationship between people. These relationships are the real gift that keeps giving forward. 

So, I must push on. 

How Do I Begin?

Sojourners from the first painful contraction that impels us forward.  We are forced into a bright, dry land in which we need to gasp the inert gases around us.  Our bodies knowing how to separate the oxygen molecules and expel the carbon dioxide, we are born.

From that first moment, our path is determined for us for the next decade or two.  We are powerless in a world of giants.  Everything needs to be interpreted, broken down into small components of digestible information.

Over time, we learn and adapt.  At first, what we do and how we do it is determined by others.  Then, the days slowly evolve and the power shifts to us.  Eventually, we are the author of our days and behaviors.  How and what and when are all answered by us.  We start to ask ourselves, "How do I begin?" Year after year, we form a basis of understanding and solidify our philosophy of life.

For the last several years, I have had to find new answers to the how, what, why, when and where questions.  My independent mind needs to submit to my dependent body.  New problems crop up and the questions are not quickly answered.

The process repeats itself, and I am still a sojourner being impeded forward by painful contractions.  My body still craves the inert gas around me.  About 10 days ago, I had a couple of episodes of shortness of breath, chest pain, blah blah blah.  A new problem that needed a new answer.  Since my tendency is to underplay events, I just waited for the episodes to pass.

Again, everything needs to be reinterpreted, broken down into small components of digestible information.  So, I called the cardiologist to find out what should be my behavior in the future.  Another beginning; a new basis of understanding life.

I am still waiting for the results of the tests; but, it will probably bear out that I had an unpleasant reaction to a new medication.

The question still remains: how do I begin?  Although, now, there is another question:  how do I end?

Unfettered Ground

There are no weeds, no plants, no encumbrances.  The past is gone.  All bondages have been removed.  Freedom reigns; the land has been restored to its virgin birth.

As soon as he enters the Garden of Rebirth, the young boy squats and looks down.  He has something in his hands, a drop of water or a seed. I cannot tell which one.  Or, is it something entirely different?  I am intrigued.  What is he doing, I wonder?

Suddenly, I realize: it is neither water nor seed.  The boy has received a gift from the land.  He has gathered a microcosm of the future.

The unfettered ground waits for the boy to act. His vision is yet to be expressed.

"Unfettered Ground"
Oil Painting by Rose Wolfe

YESTERDAY, TODAY, TOMORROW

Now that I am in the autumn of my life, I find it one of the most colorful and favorite times of my life.  The angst of the teenage years and the stress of the working, parent years have passed.  Time is now in abundance and the joy of the moment I had as a child has returned. Always having been contemplative, I have the pleasure of spending time reflecting, especially on the passage of my life.  And, I find those thoughts begin with my mother. 

As a child and young adult, I spent little time thinking about my mother as a person independent of my relationship with her.  She was nothing more than my mother.  Someone who was just "there for me."  Her role was relegated to a side player in the scenes of my life.

One of my strongest memories is how our house was the daily gathering place.  For many years, my mother was a "social being."  Because she was an extrovert extraordinaire, she had many friends.  People would call her on the telephone, come to visit, and invite her out to functions.  She laughed often and talked much.

As a teenager, I was embarrassed to be in her company.  Often, I would cringe because she had a strongly stated opinion about most things that were contrary to general public opinion.  For example, she held the opinion that the war in Vietnam was over oil rights. Despite this tendency of hers to voice her views, she truly was loved and respected.  I was amazed.

When she reached the autumn years of her life, I noticed a dramatic change in her behavior. My mother started to turn inward. The extravert became an introvert seemingly overnight.  As time progressed, she continued to withdraw from interacting with friends, family and neighbors.  It was a startling change.  For years, I could not figure out the reason.  Then one day, she was diagnosed with dementia.  Everything started to fall into place for me.  I watched as she become quieter and less verbal.

Finally, the mother I knew disappeared.  She lost her voice.  There was no yesterday, today, or tomorrow.

My Story Continues

Another birthday has passed and here I am.  The story of my life continues.   

I am my father's and my mother's child; however, I am my own child, too.  It could almost be said that my life is a casserole of the past, present, and future. Although many of the "ingredients" of my being were contributed by nurture and nature, I am the author of how the story gets told. 

One of the interesting nuggets of this truth is that every day I get to write another paragraph or chapter of my story. In fact, the authorship has always been mine to control and manipulate into a happy story or a sad story or victim story or a victor story. 

Another nugget is the realization the line between fact and fiction can be as blurry as a rain-drenched window. My mind obsessively compels me to make sense out of the world around me and my experience within that world. As I interpret my experiences, I write another line in my story book. 

So, today I write the following:  I have a good life.  I have good family and friends.  I had a good day and I will have a good tomorrow. 

Tired of Being Me

It is true. I confess that lately I have been so very tired of being me. If only this were a nightmare that could end with the morning light, but there is no promise of relief on the horizon.  Now, I know that there are many people who are facing serious health issues. However, living with a chronic illness takes its toll on one's psyche. 

Struggling to keep a positive momentum, I have often forced myself to find a way to enjoy the moment.  Although, sometime I just get tired of the "handicapped" limitations of my life. Every, and I do mean literally every, physical activity requires thought.  A year ago, I referenced the "Spoon Theory."  Essentially, the theory is an attempt to illustrate the concept of how the day's finite energy is consumed differently for those with physical limitations.  The Spoon Theory postulates that we have approximately the same amount of spoons (energy) to spend in a day.  The caveat: handicapped people use more spoons on small tasks (getting dressed, taking a shower, eating a meal) than someone who is not handicapped.  For example, going out for a meal.  Take a moment to reflect on what your experience would entail. Before I can grab my coat and go, I need to be consider:

1. Is my electric scooter in the car?

2. Is the scooter battery charged?

3. Is the restaurant handicap friendly?  (Not accessible, friendly.)  For example: Are there stairs? Chairs not stools or couches? Can it accommodate my scooter or do we need to bring the manual wheelchair?

4. How much walking will be required?

5. Do I have someone to help me.  (Yes; I was one of those people that liked going out by myself.) 

6. Does the restaurant offer foods that are safe for me to eat?

7. Is there handicap parking near the entryway?

All this beforehand.  At first, you may think that all places meet some of the above requirements.  I can assure you, they do not. Many adhere to the laws, but the results are not handicap friendly at all.  Even using the restroom can be an overwhelming and exhausting experience. 

The end result?  I have just been tired of being me. 

The Tolling Bell

Every six months, the bell tolls a little louder.  A warning alarm urgency calling out. 

The subtle changes accumulate until they start to make themselves known: lifting my leg is slightly harder, walking has become more exhausting, choking more common. Little signs that the disease has encroached into my body a smidge further.  I am losing the "Battle of Possessiom." 

Although, I am weakening, I still have time to act. No longer can I hold back. The following words must be said:

1)  if I have ever hurt you, I am sorry. Sometimes, I have behaved selfishly and childishly. 

2)  I believe that Jesus is the son of God. This belief was a turning point in my life when I was 28 years old. 

3)  At times, the darkness comes to me. My faith in God is, was, and will be the reason I continue to fight against despair. 

4)  I am very proud of my daughter and her husband.  They are kind and loving people. I have not always appreciated them.

5)  I am grateful for my friends. They are not my friends because I deserve them, rather they are friends because of who they are. 

6)  My husband is an attentive and caring person because of his faith in God.  

7)  Even though I am older, I continue to experience the joy of found treasures. My sister is one of those new, found treasures. 

8)  Lasty, thank you for reading this blog. It helps me to feel connected as I write, thinking that someone is on the other end of this communication. 

One Person, One Moment

We were all there: both sets of grandparents anxiously awaiting the arrival of the expectant parents.  It was a small room on the first floor of Women's Prentice Hospital.  Just days before, the doctor had determined that an emergency cesarian was necessary.  Already, the pregnancy had been worrisome and now the baby needed to be delivered a month early.

With helplessness looming over us, we watch as the two were escorted into a room down a hallway behind locked doors.  Now, we were left to wait.

With the grandparents was the soon-to-be brother.  Gramps was the designated babysitter for the day. So, knowing that the dimly lit, cold and quiet room was not the place for a five year old, the two left the hospital to spend time in the sun.  The rest of us had no such distraction.  Honestly, I know I did not want the distraction anyway.  My thoughts were only on my daughter and new grandchild.  There were dangers involved.  It was a scary time.

Feeling alone and wishing that somehow Gramps could have been with me instead, it was with surprised delight when in walked my nephew, Don!

I had know him for more than thirty years and always had a love and fondness for his gentle spirit and intelligent soul.  But, I would never have predicted that he would make the trek to the hospital.  His presence was comforting.  Don is the kind of man that knows when to talk and when to be quiet.  With that knowledge, he astutely knew how to just be there for me.

The day was long and the procedure was twice as long as we had anticipated.  At one point, the two grandmothers checked with the front desk regarding any news.  The receptionist made a very vague response which was misinterpreted.  Therefore, I became very concerned that daughter and baby had not survived.  I was terrified.

Don helped me through the valley that day.  All the times that I had been the adult in his childhood were nothing in comparison with the adult that he was to my frayed emotions that day.

Almost two years ago, I not only met my new granddaughter, I also met someone I had known for more than thirty years.

The Value of Friends

Finally!  Warm weather has arrived; snow covered paths are now brimming with vegetation and bone-freezing, muscle-aching winds are now an unpleasant memory.  Breaking from my self-preserving hibernation, I happily traverse my way to the room above the garage, fondly known as "my studio."

During the "winter incubation," painting projects floated through my mind, filling my spirit.  I anxiously waited for the moment that I could open tubes of paint.  Now, each color beckons me.  Slowly, the choices are made, the paint is squirted on the palette, the medium readied, and I pick up the brush.  Once more, I am free to explore the world beyond the physical.

This year has been unique.  Rather than delving right into the plans that have slowly formed over the long winter, I wrested with new challenges.  For the past two months, I spent my time paintings for others. A much more daunting task.

The first challenge: A friend asked me if I could paint a particular scene for her.  During her stay in Lake Geneva, a photograph had been taken of her and her husband.  It was a special time as they celebrated another year of a long and happy marriage.  The photograph depicted them sitting together on a bench looking out over a lake.  Special time, special meaning, special photo.  Now, she had faith that I could take the photograph and translate it into a painting.  

I felt unequal to the task.  My hands are getting weaker and the amount of time I can spend painting has decreased to only 1 1/2 hours per day.  However, I was determined to try.  The process was slow and difficult.  Painting is a series of problem-solving tasks.  Often, finding frustration instead of satisfaction, I would scrape down the day's work to start all over again the next day.  Always, nap time followed painting time.  Regeneration and incubation.

Finally, a few days before we were to see my friend, I finished the painting.  My loving husband varnished and framed the painting.  When we met, I was too nervous to give her the painting myself.  While I waited, my husband took my friend to our car to give her the painting.  Honestly, I did not think it would live up to her expectations.  You can imagine my humble surprise when she said to me, "I love it.  It is even better than I thought it would be."  Better?  How can that be?  Words of love. Words that give strength. 

The second challenge:  Another friend asked me to paint a scene for her.  Sounds pretty open-ended, right?  The constraint: For Christmas, I had given her a painting of a river in the woods.  The style was more fantasy than realistic because the colors were vivid and there was an abundance of flowers in the woods.  I titled it, "Living Waters."  She loved it.  (She loves me and is very kind-hearted.)  But, in the gift-giving, I had created a dilemma for her.  She and her husband could not agree on where the painting should be hung.  Her solution: commission me to paint a companion piece.

After some serious pondering on what scene would be a good complement, I decided on another scene set in the woods.  Only this time, the central image would a cottage.  It was fun finding a way to use similar techniques and colors without replicating the first painting.  The painting is finished.  The first coat of varnish had been applied.  Soon, I will be giving her the companion piece.  Because it is for her and she is a gentle spirit, I have titled it, "Grandma's Place." To me, it is a loving, safe, cozy haven. 

The unexpected reward has been the joy I encountered in the doing and the giving. The discovery: I may be handicapped physically, but I am not handicapped relationally.  It is life-affirming to have loving friends.

Can It Be?

I am not given to dreams and visions.  No, I am fundamentally a realist.  Although, I do believe that there is more to life than what I can touch.  Our beings are only part physical; the other part is spiritual.

Recently, a friend wrote to me that she believes we have a subconscious internal memory.  It was her way of explaining her recent behavior.  Even though she did not wake up remembering that the day marked another anniversary of her young daughter's passing, she was "cranky" not only all that day but also for a few days before.  Finally, at the end of the day, it occurred to her and, at that moment, she understood.

Although I had never talked to her about this very subject, I knew the truth of her words.  For years, I found myself anxious and moody for days leading up to the anniversary of my young husband's death.  Relief only came after the day had passed.  It is uncanny how we know without knowing.

So, this past Sunday, as I was sitting in church, I felt a sudden deep sadness and tenacity.  It was perplexing.  This feeling did not belong to me; I did not own it, but I knew it.  This feeling was so familiar.  With a slight jolt, I knew where I had encountered it before.  It was my mother.  She had come to visit me on the eve of the anniversary of her death.

Let me be clear.  We were never close.  It was not a longing that made this encounter.  She came to me and I understood her in a way not possible during her years on earth.

The gap between us was closed.  Before, it was easy for me to judge her for what she did not do.  Now, it was with shame that I came to see all that she did do and why she could not do more.

Can it be that we use one standard for ourselves and another for others?

It is time to forgive.

String Theory

We have all heard of the String Theory in physics. Well, I have a string theory, too: The String Theory of Memories. 

From the moment we are born, I believe that our brains begin to store memories. These images form the framework in which we function. How we choose to string these memories together and interpret them with our unique meaning defines us and, consequently, the world around us.   At any point in time, we can change the meaning and, consequently, change our outlook and ourselves.   Think of the power within our grasp!

If I let myself be quiet and relax, images will flow in and out of my mind's eye. At first blush, these images may appear to be random.  However, if we meditate on them, their randomness disappears and an order becomes apparent.  What we find at the foundation of these memories is a feeling. It is this feeling that reveals the connection between the images. And, it is this feeling connection that is the string that not only threads one image to another, but it is the string that connects one image cluster to another image cluster. 

Think of someone you like. Right away, a smile comes to your face and images of them flood your mind. Now, you and I know they do not do everything you like. Although there are plenty of memories that you could string together that would focus on the unpleasant memories, somewhere along the line you made a decision, albeit an unconscious one, to interpret their actions as positive. 

Now, do the opposite. Think of someone you do not like.  Almost immediately, you frown. Images that flood your mind have been interpreted as negative by you. Truly, they have done some unpleasant or unkind things, but they have also acted in positive ways, too. 

Of course, we do not live in a world where everything can be simplified and designated to a "like cluster" or a "do not like cluster." There are more complex image clusters that form the framework in which we function. Not only do we carry image clusters of people we like or do not like, we string memories together that define our life. Do we tell ourselves that we have a good life or a bad life?  Do we enumerate all the terrible things that have happened to us?  Or, do we focus on all the good experiences?

Even as I now live a life of disabilities and frustrations, I have a good life. And, my memories of you make it so. 

Rejoice

Ah, Spring.  Finally, the trees show the promise of tomorrow. Slowly, after the slumber beneath their white blanket, the gray trunk's sap starts to flow more quickly as it sends the message, "Wake up.  It is time!"  Reaching toward the sky, the branches sing songs of joy.  Hope is alive. 

As I look over the fields of sienna brown or alizarin crimson, I notice a hue of greens. Just barely there, the buds are getting ready to burst forth with the sap green of new growth. The skirmish between the will to thrive will overtake the need to keep safe against the harsh elements. For Winter has lost another battle and will make a full retreat once again. 

The azure blue sky a perfect backdrop to the life playing out at its feet.

Rejoice!  Again, I say, "Rejoice!"

How's It Going For You?

Yesterday, today, tomorrow: all melt together as if they were a Salvador Dali painting.  Our memories fade. Yet, vignettes remain and we form our own blanket of reality from these patchwork images. So, the questions become: What do we remember? What do we create?

The options are seemingly endless. Every memory can be tweaked in any direction. Life is not just a series of events. Rather, we truly are authors of our own stories. Do we choose to become embittered or emdued with joy?  Do we choose to forgive others and ourselves?  Do we choose to focus on what others have not done for us or on what others they done for us?

Remarkable - isn't it?  Small choices making a big difference. I am not advocating we repress, deny, ignore the ugly events. Rather, I am advocating that we turn our minds to love and tolerance. True tolerance, true forgiveness, true love. 

Is your blanket keeping you warm and cozy or is it leaving you cold and raw?

COEXIST

Melancholy.  A friend just sent me a text today saying that she was coexisting with melancholy today.

She is a great friend and has helped me delve into my emotional abyss.  Our recent sojourn was spent on exploring how to express the idea of being of two minds at the same moment in time, e.g., how I could feel happy and depressed simultaneously.  So, we decided that it was really a matter of coexisting with two emotions.  Both emotions have a place within in my being - but, in fact, I should type “BUT,” I am determined not to let the sad emotion take reign.  It can hang out and move through the necessary process - as it must - in order to find resolution.  

Some of you know that this photo was captured when Julie and I spent our last moments together.  Shortly afterwards, Julie passed away.  Both of knew that it would probably be so, but we had hope that the story of her life would end differently.  We were coexisting with hope and sadness.

Often, people will talk about how wonderful someone was - even if we know it is the not truth.  This is not the case with Julie.  She was a living example of true Christianity to those who met her.  Imperfect?  Yes.  Saintly?  Yes.  She left us behind - unwillingly.  She passed away - peacefully.

If we spend our time hating and causing discord, then we learned nothing from her example.  Stop the madness.  Be determined to let love reign.  Coexist with melancholy and joy.  

Simple Truth

There is a hope that almost everyone lives with in their soul: it is the hope that we can experience mutual love.  Mankind has spent great energy towards this end. Think of all of the songs that have been sung, poems that have been penned, and books that have been written about love.  To this end, the fact that we have expended so much energy in this endeavor is evidence that we were created to be loved and to love.  Most of us understand the phrase, "a mother's love," as the  depiction of a tender, unconditional affection. 

One of my greatest loves is the love I have for my daughter, her husband, and their two children: my grandchildren. This ever changing, ever deepening, ever evolving love is a wonder to behold. 

An important component to showing love is the physical action involved in that expression. My myotonic dystrophy limits the physical interactions I can have with my grandchildren. The adults understand when I am limited in my abilities.  But, how can children understand?  It breaks my heart.  And in the breaking, a new love is released: a love of encouragement and facilitation. 

Without the necessary sadness and pain, my evolution may not have occurred.  Think about it: love of another can be the catalyst to new discoveries. In the sacrifice of self, you find yourself. 

SOLID GROUND

The struggle to remain connected is a familiar battle. At these times, I feel as if I am an alien visitor to this planet. Despair clouds my vision and I find myself in a swampy land. My feet are covered with muck and with every step I hear,  "SLOOP," as my feet squish through the mud. My forward motion is stymied by the dirty water. Peering through the fog and keeping my eye on the dim light before, me I hope that my next step finds dry land.

I wonder, "Will I survive today?  Can I find my footing?"

Then, I feel tender arms surround me and I am lifted up.  The light is blinding, I close my eyes. Feeling the gentle carpet of grass under my feet, I open my eyes. Looking around, I see that You have, once again, saved me from myself. I am back in the Garden. 

JUST WHEN I NEEDED YOU MOST

Through the lonely times, when evening comes, and all my dreams seem to fade, there you are.  Standing in the shadow, your presence surrounds me.  The darkness dims as your light shines through.  Just when I needed you most, your love sustained me.

You were there, unexpectedly.  My eyes were cloudy and my heart was weak, but your arms enclosed me and I felt safe, again.  There are so many of you.  It is astonishing to me.  Unmerited gifts of souls who are unafraid to love.  Just when I needed you most, your love sustained me.

From near and far, your love pierces my heart and feeds my spirit.  My road is rocky and treacherous.  Often, I stand at the precipice feeling dizzy with desire, longing with hope to walk, run, or fly.  Your love keeps me grounded, helping me to bridge the gap from today to tomorrow.  You help me avoid the pit of despair.   Just when I need you most, your love sustains me.




   "Requiem for a Soul"
oil painting by Rose Wolfe

REMNANTS

The snow is falling, again, fine, tiny crystals.  At first, I thought that a fog had rolled in, but then I noticed how the wind caught them up into eddys - swirling in the air.  How lovely, even more so because I had nothing urging me outdoors. No appointments to keep; no commitments to honor.

Trying to catch the beauty of the moment, I quickly snapped a few shots of the view from my back entry which overlooks the woods from the porch.  Instead, I notice that there sits a good friend, my rocking chair, waiting for me to return as if it were not the kind of cold that makes your fingers hurt and your nose stings.  A remnant of warmer days, the rocking chair mocked the snow and cold.

ORDINARY DEEDS

Do you think of yourself as ordinary?  Are you "just a run-of-the mill kinda person?" If so, then I applaud you and thank you for making an extraordinary difference.

Yesterday, I ventured outside to get a massage.  I know, pretty cool, huh?  Would you believe me if I told you it was necessary?  It was, honest.  It was therapeutic.  Here's my excuse:  myotonic dystrophy hates the cold.  Once my muscles contract, they do not relax; they tense up into tight, little knots.  Heat helps, sometimes.  This time, the heat was not doing the trick.  I had been in such pain for the last week that I was forced to go get a massage.

Anyway, once I arrived at the spa, I encountered ordinary people doing ordinary jobs.  Here are the applause-producing events:  one woman helped me get set up in the locker room (even putting my belongings in the locker for me), my masseuse gave me a little extra time because my muscles were in such knots, another woman helped me into the steam room for a little extra heat therapy, and a fourth woman found a stool and made the shower handicap-friendly.  All initiated these actions with smiles, kindness, and on their own.  Because of these ordinary people, I was "accommodated" without feeling as if I were being accommodated.  An ordinary massage became an extraordinary day.

Ordinary people doing ordinary things make an extraordinary difference.

ÉTOUFFÉE

Étouffée: the French word for “to smother.”  Recently, I learned the underlying meaning for the cooking process to make the Cajun stew, It is interesting to me to consider how words can elicit different visceral responses.  Somehow, to smother me using the French word sounds pleasant and soft (and maybe even tasty), but to smother me using the English word is distasteful and anxiety producing.

Several year ago, I was diagnosed with myotonic dystrophy.  At first, I needed to use a cane to get around.  It was easy.  I could go anywhere and do anything.  The options were endless: taking walks or a workshop were easy; restaurant choices were based on interest; spending time with friends was just a matter of scheduling.  Freedom and independence were my two mantras.  Bit by bit, life changed.  Now, if I want to go anywhere, I need help.  Stores and restaurant choices are limited to those that can accommodate a wheelchair.  I can no longer take workshops at the Palette and Chisel in Chicago because their entrance has stairs and their classes are held on the third floor.  Gradually, I am being confined to a life of “cannots.”  I am being smothered.

What do I do now?  Find a way to turn smother into étouffée; make my life tasty.  I am convinced that our choice of what “thinking paths” we employ will determine our emotional health.  It is a struggle to free myself from depression and sadness.  I fight not to be angry.  My time is limited.  I refuse to give in to living at the bottom.

Everyone of us has a choice every day of what we think, how we think, and what we think about.  I implore you; think on whatsoever things are true, honorable, just, pure, lovely, and of good report.  (Philippians 4:8)

Keep fighting the darkness. You are not alone. 

The Whale's Belly

Sitting in the dark, listening to small sounds:  the house contracting from the cold; the wind rattling the windows; the furnace clicking on, I feel the stillness - alone - unafraid.  Hopeful. 

In the middle of the woods stands a tree - hunkered down - asleep for the season. Yet, its leaves cling to the branches. A memory of past glory and a promise of the future.   It, too, sits in the stillness - alone - unafraid.  Hopeful. 

There will always be seasons where we sit in the whale's belly - not in control of our destination.  Alone. I pray that you will be unafraid. Have hope in tomorrow.  

My Crazy Love Nugget

Living with a debilitating disease is an overwhelming, a time-consuming, and an attitude-challenging existence.  You have heard of active listening.  Well, I need to actively think about what choices I am making about each day’s activities; otherwise, the day slips away.  

So much of my energy is spent on what you might term the “little” things, i.e., getting dressed, brushing my hair, brushing my teeth, moving from bedroom to bathroom to living room.  Most mornings, I am weary by the time I am ready to eat breakfast.  So, it becomes easy to just sit and maybe read a book or power up the iMac.

If I were to allow myself to slip into a life of doing nothing, what could be said at the end of my life?  This is the question I have begun to ask myself all the time.  Knowing that I am living on the edge of time propels me into action.  It is this knowledge that gives me energy when I have none.  Facing each day with determination to live, pushing forward to leave a legacy of love.  

I have this crazy notion that if I spend time trying to impart to people how much they mean to me, they will carry this love nugget with them after I am no longer here.  For a long time, I was more concerned about doing the “morally just” thing and being a good person.  Oh, I was a complete failure.  My strong independent spirit would rear up and demand respect.  I lived in a confused state of what to do next.  Finally, I started to understand that my true desire was to let others know how much they meant to me.  I started to see that I did not need to take care of myself.  Nothing horrible would happen if I just relaxed.

My independent spirit stills serve a purpose: it gives me the ability to fight to live every day; to power through the dark moments; and to see all the good right in front of me.  My determination to love is rewarding.  The more that I love each person for who they are, the more that I can see the depth of their beauty.

It is an awesome experience.