A Love Story: Stronger Together

Waking up this morning with pain, I cried. Pure frustration. My poor husband asks, "What do you want for me to do?" At first, I asked for a massage.  When he asked where,  I just whimpered, "Nevermind."  Reality is, he can't possibly help.  The pain seems to have no spot to massage. It's just everywhere.

So, I ask for my Yoga Tune Up Therapy ball, hot pad, and water, and meds.  That helped me to calm down.  Then, he drew me a hot bath with Epsom salts. And, as I soaked, he brought me some tea. 

This is love. 

 Our Love Story

Our first summer together 1983
in Chelsea, MI at Camp MUCC.

I met Kelley when I was 19. He was 22. I was the waterfront director at a fairly unusual summer camp for kids. Camp MUCC, Michigan United Conservation Club, which for those of you who might not know, is a hunting club. Being I had never even thought about hunting before, this was an odd place for me to land a job. But I was there for the water.  Kelley, on-the-other-hand, having studied Wildlife Management at MSU, was hired as a riflery and hunting instructor.


This was to be my home for the summer before going off to college. I had just left my foster family's home never to be a dependent again. I knew I was now on my own. Kelley was on his own, too.  Everything he owned was in two luggage boxes.  This was to be his home before he ventured out to find his "real" job.

The week of training, before campers arrived, we hit it off right away. And from there, on the weekends, once the campers had left after breakfast on Saturday, we often were the only ones left at camp.  Being we were poor as college-students, but we had food and shelter on a small lake in the quaint town of Chelsea, MI. Life was good. 

Kelley was from Manton, MI,
  so he brought me to meet his family before our week's journey.
 His older sister was shocked
when he showed up at her door with a girl!

At the end of the summer, before I headed to college and Kelley off to Arizona to try to get a ranger job at any national park, we went on a week-long canoe trip, just us two, down the beautiful Manistee River.  It was probably the most wonderful week of my life.  At the beginning of the trip, Kelley asked, "What if I asked you to marry me?"  I snorted, "I'm too young for marriage. I'd say no." Nothing more was said about that all week.  However, at the end of the week, as Kelley was taking me back home to Grand Rapids, his car broke down near the Cedar Springs exit.  

We stayed the night at the campground just off from 131, Kelley covered in grease as he worked on the car to get it going. I remember him looking up from the engine as I stood there talking to him and handing him tools as he requested.  And that was when he decided it was the perfect time to ask, "Will you marry me?"  I didn't hesitate, didn't even recall what I had said one week earlier, "Yes, I will."  


We were engaged, no ring or anything at that point.  We didn't tell anyone we were for at least half a year.  Kelley was leaving for AZ in the coming week, and I would be at UofM forging a new life.  Not sure we knew how things would work out, but I know for sure we both knew we were going to be together through it.

This was before the Internet and email was a thing in your average person's life. Kelley and I were poor.  I was living off my savings from the $1000 I had made over the summer, Pell Grants, and student loans.  Kel was living with his mom and step-dad (both very supportive of him finding a National Park job) and odd jobs he found in Phoenix. We could not afford long-distance calls and so we wrote. 

I've kept these in a binder from that time.
There are over 100 letters, notes, and cards.

Kelley was and is a guy who shows his love through what he does and generally doesn't say lovey-dovey stuff.  Surprisingly, when given a pen and paper and no way else for us to connect, and he poured everything out.  I, too, found that writing allowed me to fully express my thoughts and emotions, much more so than when we were goose-bumped, love-struck-dumb in the presence of each other. (Ah, new love!) And so the letters (long, long letters) flowed.  

After six-months apart, Kel not finding a park job and me really struggling at school, he decided to drive back to Michigan.  The red Pacer he was driving was glued and tied together for the most part.  But he was determined to get back to me.  He drove straight through on what would be the equivalent of several Monster caffeinated drinks (but his was black caffeinated capsules).  By the time he got to Ann Arbor, his eyes were buggy and bloodshot and his hair a greasy mess.  He called me at the dorm room letting me know that his car had conked-out on the highway.  

Being I didn't have a car, my good friend, Mindy drove me to get him.  She was ever so kind to let this wild-eyed, unsavory looking man into her car.  She had really only heard my stories, saw me writing him letters, and making him mixed-tapes of love songs, but she really had no idea who he was at this time. 

We laugh now (she and her husband have been good friends all these years later) at how she out of pure love and concern said, "Katie, are you sure you want to marry this guy?"  I was sure.  I loved that scruffy, red-bearded man, and I knew he loved me. 

Now, that's some car!

It was that February (Groundhog's day) that we bought my engagement ring and our wedding rings. That next summer, we did one more stint as camp counselors at Camp MUCC and then the next spring, 5/25/1985, we were married, surrounded by our family and friends. 

We've been married 34 years. Down days like the past few, make me appreciate the love we share.  We've had so many twists, turns, ups, and downs on this journey together.  We've grown so much from those homeless babies back when we first met.  The life that we've built together gives me strength, courage, and purpose.  

Being parents to two amazing children,
and then being blessed to bring in
our daughter-in-law and now our grand-daughter,
makes everything make sense, you know?

Kel this morning at his desk of our shared office.

We continue to journey together. This year finds us with more twists and turns.  Ever stronger together, we will find our way.

I almost didn't write a post this week.
The first two paragraphs were written on Monday.
I was too out-of-it and down to write after that.
Until today.  The direction of the post took
a totally different turn as I thought about
how much my guy means to me
and just how much he supports me and has
from the very beginning.

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays. 
However, as you know, my new normal means that some times,
I have to listen to my body and am not able to follow through as planned.
Thank you for your understanding.

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Those Are Fighting Words! Metaphors Make Meaning

I'm a lover and a learner, not a fighter.  After doing some reflection on a poll asked to those dealing with fibromyalgia for what name we would choose to call those with the diagnosis, I realized that I bristle to the appellation of Fibro Warriors, Fibro Fighters, and the like.  The war metaphors just don't sit well with me.

While I understand that viewing oneself as a warrior is empowering (and if it resonates with you then use it), but for me, I feel in control and strong and courageous by learning about how my mind and bodywork. Due to this outlook, I have found avenues that are working for me so that I feel like I'm able to live my life fully.

Just Words

Some will say that these labels are just words.  But as I am doing a lot more reflection through meditation, counseling, and writing, I have come to realize that the words I say out loud and in my head end up defining me.  

The fibromyalgia that is within me is not my enemy.  I have come to believe that my nervous system has been on overdrive all of my life, right from in the womb due to my own mom coping with schizophrenia and bipolar (unknown to her until I was 16 or so). Her unstable mental health was the vibrant and awful hearth that lit my understanding of the world. 

After my six weeks of intensive therapy through Mary Free Bed's Pain Program (my blog explaining this), I came to understand and believe that the pain that endlessly roves around my body, the brain fog that weighs heavy in my head, the extreme exhaustion that forces me to lay down comes from a friend of sorts-my nervous system.  My nervous system kept me on alert as a child.  It was protecting me from the random emotional and physical attacks my mom would have without any warning. As I've explained in past posts, I learned to live on that adrenalin right up until I couldn't function any longer last year. I actually thrived in some respects. 

And so, I've chosen to view my nervous system as an overly protective friend who needs now to be assured that I am in fact safe and well. When I first listened to Dr. Daniel Clauw, the Director of the Chronic Pain; Fatigue Research Center at the University of Michigan, describe central sensitization/central pain disorder, I felt his metaphor for an amplifier turned on high really explained the reason for the fibromyalgia and interstitial cystitis pain I have.

Certainly, the way is not clearly marked.

These metaphors create images in our minds; connecting what we know to better understand those things that aren't as understood to us. So, for me to understand this part of my life living with fibromyalgia, I have used the term journey. For the most part, I feel it fits the mentality I've taken.  It allows for discovery, going into unknown territory, taking chances, having companions with me along the way, allowing guides to show me the way, figuring out what works best for me in this new situation or place that I'm in at this moment, etc. Journey to me involves work, courage, perseverance, hardships, discoveries, and so much more.  

I will admit, there are times where I feel like I'm going through more of an odyssey-full of hardships and trials. Sometimes moving forward in a positive way.  Other times stymied by a flare that brings my progress to a standstill or even pushing me back to take shelter.   Often, it's felt like more of a quest -constantly searching to learn and to accomplish my goal of living as fully as possible.  

Humorous image here, but when I'm down and out,
it's not funny in the least.

The other day, when talking to my daughter, she reminded me after a time of doubt and discouragement, that this journey isn't going to always go on the route I've chosen.  Unexpected exhaustion hits in the middle of me having a great time. The fog rolls in, and I can't see or think clearly.  Pain has led me into a dark alley and left me whimpering and doubting that I can continue. This too is all a part of my unchartered journey. 

Metaphors Steer Our Thinking

For each of us facing a chronic illness of any type, taking time to really think about the metaphors we use is important.  Also, that what we use needs to connect to who we are and want to be.  In the medical research article, "Metaphors We Think With: The Role of Metaphor in Reasoning" published in Public Library of Science Journal, researchers Paul H. Thibodeau and Lera Boroditsky state that through the five experiments they performed, analyzing the role of metaphor and mindset, they found, "...that metaphors can have a powerful influence over how people attempt to solve complex problems and how they gather more information to make "well-informed" decisions."

In addition, they discovered that "...the influence of the metaphorical framing is covert: people do not recognize metaphors as an influential aspect in their decisions." And so, it is essential that we think about the words we use to describe our illness and our relationship to it. Those words impact not only how we view our situation but also influence how we chose to react to it. 

Other Possible Metaphors

In the article "From Battles to Journeys: Changing How We Talk About Illness and Cancer" by Vanessa Milne, Jeremy Petch & Maureen Taylor, the list a few different ways we can think a disease. In the article, they talk about a woman who referred to cancer in her body as cells that were out of tune with the rest of her body's cells. This got me thinking.

Needing to be Tuned-This week, I started taking ukulele lessons.  Awkwardly, I tried to get my fingers not only pushing the string down fully but on the correct fret and not lazily touching the other strings. I have not yet gotten this to happen, so when I strummed the four strings in tandem with my teacher's notes, mine sounded sour and totally out of tune.  It seems like that's much like my body and mind, currently.  It's awkwardly trying to strum a tune, but it's really out of tune.  To my surprise, I've been relishing my time in meditation more and more. I feel like it's bringing my mind and body back in harmony with one another. 

In the article, they explain that often the metaphors come from a personal connection.  Which makes sense, metaphors compare two unlike things-usually something one is really familiar with to something that is difficult to explain. So, your own life experiences could bring you a meaningful metaphor that helps you to explain and cope with illness.

Here is a list from their article (linked here):

• Dancing
• Thriver (vs survivor)
• Playing a chess match
• Running a marathon
• Weeding a garden
• A persona (the illness becomes a character to interact with)

And a few more I found:

• A building project 
• A bike race (Lance Armstrong used this)
• A mental or physical match (similar to war phrasing but less violent)
• An unwelcome lodger
• An alien invasion

Further Food for Thought: 

• Dr. Elena Semlow's talk on her research concerning metaphor use influence on people with serious illness
• Metaphor Menu

What is/are the metaphor(s) you use when thinking or talking about illness? Is it serving you well? Does it fortify you? Have you ever thought of the language you and your health advisors use? 

Thank you for visiting my blog today. 

I am committing to posting once a week on Fridays.  However, as you know, my new normal means that some times I have to listen to my body and am not able to follow through as planned. Thank you for your understanding.

Click link Subscribe to Pain FULLY Living Weekly Posts by Email