Tuesday, May 9, 2017

Finding April's Peaceful Moments

With all of life’s stressors these days, I set a goal for myself in April to try to deliberately find small moments of peace and beauty. Reflecting back on the month, I think I did a less-than-great job of still feeling the weight of too many things. But I think I also was successful in finding those brief moments of serenity.

I haven’t been in this spot in almost two years. But an early April day offered a chance to mountain bike, which I haven’t been able to do in forever. Sitting on this outcropping, admiring the view all the way to Boston, I was excited to ride, and everything felt right for the moment.

After picking one daughter up from dance class and grabbing a bite to eat with both, all three of us noticed what appeared to be a nice sunset. We raced to a nearby field in the hopes of capturing a better view. We were rewarded with a serene setting and great angle on the sunset. All of us were snapping pictures left and right. Stepping back, I loved watching my daughters taking the scene in and appreciating the beauty around them.

Work meetings are almost never exciting. Ones with state regulators? Even less so. For a few months, I drove to state offices amidst the grayness of winter. On this day, I left their building to find a tree in full bloom with a glorious sky as a backdrop. This was far and away my best work moment of that week!

Spring has sprung on Cape Cod. While the Cape is about a month behind the mainland for a lot of spring foliage, this was a sign of the impending color that will be all over the Cape in a few weeks. The cheery brightness of the yellow against the cold stone was particularly striking to me.

Following the adrenaline and exertion of mountain biking through the woods, burning off the stress of the workday, I stopped on the way home to sit and admire the blossoming apple trees on the slope of a hill, with just a hint of a cool, evening breeze reinforcing the tranquility of the moment.

Nantucket’s Daffodil Festival welcomes spring – and the return of the tourist economy. It’s full of energy, bustling with enthusiasm and events around the island over three days. But on the morning of the parade, I found myself alone on a bench on a side street, sipping a coffee and watching a few antique cars delicately jostle their way over the cobblestone street and into position three hours ahead of the parade. A few parents ambled past, with distracted young children or dogs in tow, sporting yellow costumes. Fog rolled in several times, with the sun repeatedly burning it off. I’d have stayed there all day if I could, but moments can’t last forever; the near-silence and solitude ebbed over time, as if an energy dial was being slowly turned up, eventually signaling the end of this moment.

I think this turned into a good challenge to continue for the moment. Spring is here, and color should explode in the month ahead, with more scenes awaiting me if I make a point of seeking them out.

Sunday, May 7, 2017

Talking To Your Kids About a Chronic Condition

It was a two-and-a-half-year odyssey from the beginning of my chronic pain to my fibromyalgia diagnosis coupled with being newly predisposed for soft tissue injuries. This leaves me more easily injured and then in a lot of pain from those injuries; all of this clarified what I’m living with. Then, it was another six months to then understand my new reality and to even begin to figure out how to work with it. Emotionally, this has been tough, but one of the most difficult parts was sitting down to talk to my kids about it.

I’ve tried hard throughout my girls’ lives to ensure that they grow up feeling safe, nurtured, loved, and free to focus on just being kids. But my diagnoses left me feeling as if I were failing them: I can’t be as strong for them as I’ve always been. I can’t give them all of the experiences and adventures that filled our past years. I’ll need more help from them, forcing them to quickly grow faster than they should. The realization of the various ways and moments that will change washed over me, and left me devastated for weeks. My inescapable conclusion was that, instead of providing them the foundation for their growth and for them to go out and achieve their dreams, I was creating a world suddenly harsher and scarier, and I’d leave them more afraid to engage with the broader world and less prepared to do so. As a parent, feeling like a failure is soul-crushing.

Still, I’d hit a point at which my new limitations were obvious, and “injuries” can’t last forever. So, it was time to sit them down and explain things. I didn’t feel prepared, so I researched how to do this. Some conditions have great literature to support conversations with kids, but fibromyalgia isn’t one of them. It isn’t a well-understood condition, and the chronic pain, and impacts to digestion, immune system, energy, and mental functioning vary significantly from person to person. A doctor and the therapist I was using for pain management support helped identify four key aspects to the discussion: first, be honest; second, talk in an age-appropriate way; third, make the diagnosis feel tangible instead of some abstract medical term; lastly, ensure their understanding through interactive discussion and letting them drive the focus.

After practicing in my head and with my wife enough to feel like I established some ways to approach this discussion, a boring Saturday lent itself to sitting down with them. It was scary and emotional, but once into the discussion, it was important to simply immerse myself in it and let the conversation develop organically.

My two daughters are 11 and 13 years old, so they’re old enough to understand a lot but not enough to possess a deep body of knowledge. I helped them actively relate to some of my issues by using certain illnesses and injuries they’ve experienced, and then explaining that my situation permanently combines those things. They also helped steer the conversation by adding other injuries or speaking to how they’d feel in certain situations, which confirmed their understanding.

When speaking to how life will change, it required candidly admitting that I’ll need their help more often, and they’ll have to take on more responsibilities because I can’t be the person I’ve been up until now. While that was heavy, there were also a couple of interesting outcomes. One was creating laughter amidst a serious and emotional situation, such as proclaiming, “Good news, girls! You know how you hate backpacking trips? Well, no need to worry anymore!”

Another unexpected outcome was the empowerment that this can bring. I’ve tried hard to create situations that will give the girls experiences and tools that they can build on as they grow, as they face bigger challenges, and as they have and pursue their dreams. Now that I need to approach things differently, I’m unclear how best to continue such efforts. This means we’ll all need to work together to experiment on how best to push the kids outside of their comfort zones. We’ll need to collaborate more on how best to create new experiences, and how to construct the types of adventures that they can engage in and grow from. This creates a respect and forum for their developing abilities.

The discussion went on longer than I’d planned, and it wasn’t perfect. But I chose to not beat myself up. Life is sometimes messy and is seldom perfect. It was an emotional buildup and a draining conversation. But I conveyed what I needed to, the girls understood and weren’t freaked out, and it transparently set the stage for whatever comes next. I think it’s important to acknowledge successes wherever I can, and this was an important one for me to declare.

This diagnosis drives home how much life can shift on you. It also highlights how your life is a combination of the events impacting you, your decisions about how to perceive those events, and the ways in which you choose to continue living.

I still have no idea where everything is headed, nor how much my diagnoses will ultimately impact my future. But I know it’s important to still live as vibrantly as I can. Now that my diagnosis is out in the open with my kids, I can take pride in modeling for my daughters that I will push myself, persevere, and continue to seek ways to engage with the world around me. If my girls draw anything from my example, it strikes me as a way to convert an awful situation into a point of pride.

So, for now, I’m just going to be the best dad that I can be, whatever my situation, and take things one step at a time.

Saturday, February 25, 2017

When a Doctor Says, “I Don’t Know”

“I don’t know.”  This isn’t a sentence you typically like hearing from your doctor, especially when it ties to something so significant as how your chronic condition works and how to best manage it.  In my case, it was followed by, “I could take a guess, but I’m just making up an answer. The unfortunate truth is that your situation bumps up against the limits of our current medical understanding.”

Trying to get my mind around my newfound condition is tough enough. This added challenge of telling me the problem isn’t well understood and also has no solution is an extra smackdown.

In my case, I was originally diagnosed with fibromyalgia, a condition with only a recently emerging body of knowledge that’s still woefully incomplete, and no cure. The diagnosis impacts everyone differently but still has an established pattern of ongoing pain and impacts to digestion, cognition, immunology, sleep, and energy, so it’s not a pleasant end result of my two-year medical journey. This has recently been compounded by another emerging and unclear problem. My connective tissue has become more susceptible to injury, and then resistant to healing. There’s no term for it, just a problematic pattern. Those injuries are real and they hurt, and the fibro magnifies the pain. So, this isn’t fun, to put it mildly.

When the doctor candidly acknowledges reaching the boundaries not just of his knowledge, but of medicine’s, there is the deeply emotional recoil, such as frustration, despair, and helplessness.

Stark reality emerges from this vagueness. Partly, it’s that I’m in for a rough go of it. But ironically, the lack of understanding also represents certainty. There’s a certainty in not continuing to search for the “real” diagnosis; the “true” root cause; the treatment regimen with a high degree of success as established by those vaunted multiple longitudinal, double-blind, peer-reviewed studies.

In this moment when the doctor admits his limitation, western medicine isn’t futile. It’s merely limited. Granted, that limitation has a huge impact on me. But there is still value in the conviction of the diagnosis, the scientific certainty about the current lack of cure and unlikelihood of significant pain relief from various treatment protocols. It allows me to see my situation for what it is, in all its messy glory. In a sense, I am given a huge gift: a choice; a choice between despair and comfort; ignorance and knowledge; helplessness or influence.

I can’t expect a cure, or fully resuming my prior life, or ever becoming pain free. Frankly, that sucks. I’ll acknowledge it and occasionally dwell too long on it. But, as with anyone and the various tragedies we endure over our lives, I can choose between surrendering to that grief or learning to accept it and move on.

Choosing to move on brings new challenges, but I can focus on leveraging the information that exists and then methodically experimenting to find my own ways to best manage my conditions. I’m now in charge of my attempts to be as fulfilled and happy as possible.  It doesn’t mean I now have total control over my situation. But now I can have greater influence. It means I’m driving this bus instead of being a confused passenger, blindly going from one stop to the next. It means I can explore how to maximize my situation, not wondering and worrying about the next shoe to drop.

This can sound great, and is easier said than done. But the biggest gift of being told by a doctor, “I don’t know,” turns out to be the gifts of ownership and hope.

For now, I’m just taking this life and converting my hope into action – one step at a time.

Sunday, January 8, 2017

Why Mornings Are Hard as Someone with Fibromyalgia

Sunrise often brings with it a new set of daily challenges.
The alarm clock hasn’t gone off yet, but I’m now awake, yet refusing to get up. I’m immediately thinking about the amount of effort required of the next few hours. I know exactly what to expect since it’s my routine five days each week, and I dread what’s coming.

It’s 5:30 a.m., and I’m not sad the night’s over since my fibromyalgia pain spots already created too much pain to remain asleep. But as I get out of bed and limp to the bathroom, I assess myself to see which body parts hurt more or less today – every day hurts but no two hurt in quite the same way.

In the shower, I’m slower than I used to be. I also require extra time to stretch under the spray of the hot water. Already slightly behind schedule, I begin my next stall: I lean against the side of the shower or rotate to keep my feet moving and in less pain, not wanting to shut off the water. I’m just procrastinating, with my body already fatigued and my mind racing.

Eventually, I know I’m running late and I shut off the water. I try to make up time by quickly dressing, swallowing my morning meds, and heading out. It’s simple yet challenging, so I drop into the seat of my truck with relief and head off to work.

Few morning commutes offer the entertainment that this license plate did.
My daily commute is well over an hour each way. I constantly fidget, seeking the elusive position that will bring comfort to my hips; or reduce the pain in my right heel; or keep my clothes from bunching up, which is oddly bothersome against my torso. I routinely glance in my side mirrors to reduce the need to look over my shoulders which exacerbates my neck pain. Whenever I’m stopped I bounce my legs on the balls of my feet to try to force a tiny bit of movement into them and reduce the length of time they’re stagnant. About half of this drive is in silence, leaving the radio off in an attempt to generate some amount of de-stressed calmness.

Once I finally arrive at work, I park, turn off the engine and segue into my next stall. Depending on the morning’s traffic, I’ll spend the next five to twenty minutes sitting, under the pretense of sweeping through overnight emails, Facebook posts, tweets, and the weather forecast. But I’m drained by the mere thought of the next part of my morning.

Reluctantly, I finally open the door and slide out of the truck. I shuffle around to the passenger’s side, gather my work bag and lunch, and then hobble to the stairwell. While my heels are better than they’ve been in well over a year, climbing stairs has now become particularly rough on my right leg and hip. It’s only a half-flight to ascend, but I still try to time it to neither hold anyone up nor feel obligated to keep up with someone who will politely wait while holding the door open for me.

Once on the right floor, I’m now faced with a walk the entire length of the building to get to my office. I either keep my eyes focused a few feet in front of me or look all around, avoiding the line of sight to the opposite end of the hall that tells me how far I still have to walk. Finally, I make the turn, pivot again into my office, and drop into my chair. I’m panting and it takes a minute for the pain to subside.

After allowing a moment to recover, I fire up my laptop and begin my next stall. I’ve made significant changes to my daily nutrition but still allow myself a relaxing cup of coffee with cream. I now need to retrace my steps to the nearby kitchen, and hate the thought.

When the moment feels right, I drag myself out of my chair and fight through protesting hips, balky knee, barking heels, and whatever else my body decided to throw in the way this morning, and I work my way back to the kitchen, hoping it’s empty; I’m not ready to be pulled into conversation with someone, forced to pretend I’m fine. Often, it’s barren and I move through my tasks with K-cups, napkins, creamers, and then retreat back to my office.

I finally drop into my chair again, knowing I’ve now reached halftime in my morning challenges. I’m over two hours into the morning, and I’m mentally exhausted. I’m allotted an hour or two before my meetings begin, and I can pace myself on prepping for those meetings, on creating the documents I’m responsible for, and occasionally getting up to check in with someone or to go to the bathroom, which is also a way to try to continue working out some physical kinks. It’s a chance to shift from the effort to get settled at work and instead to focus on being productive.

As my meetings start, I then mentally convert the morning’s meetings and periodic breaks into bite-sized pieces to get me to lunch. That will be a much-appreciated hour to sit in my office, eat my rigidly prepared meal that keeps my digestion in good shape, and to gear up for the afternoon. I’ll be in more of a groove at that point and the respite does a good job of making the afternoon manageable.

I used to bounce out of bed and move quickly and mindlessly in the morning, as if a well-oiled machine. It’s now mentally and physically exhausting. It’s the source of the bittersweet feeling I have when going to sleep for the night: satisfied in those final moments at making it through the day, with no obligations for the next few hours; yet depressed at knowing what lies waiting for me on the other end of the night. My silver linings are that my mornings begin in solitude, giving me cover for my struggles, and I’m afforded enough time to compose myself before I’m forced to fully engage with coworkers. I’ve also pushed through this daily grind often enough to evolve it into a routine – at least I know the progression to get me into the flow of my day.

For now, I’m just taking each morning one step at a time.

Wednesday, December 28, 2016

My 2017 New Year’s Resolutions to Better Manage My Chronic Condition

Like countless millions of others, I, too, participate in that annual rite known as New Year’s Resolutions.  As someone grappling with fibromyalgia, a chronic condition involving chemical and hormonal changes that result in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleeping, low energy, and so on, as well as not getting a definitive diagnosis until late this year, I had a mixed bag of results in 2016. But I fervently believe the diagnosis drives home the need to have resolutions for 2017, and to set them appropriately.
As we observe the end of one moment, the start of another awaits. 
I’ve found it helpful to compose less dramatic resolutions and instead use the declarations as a way to state my priorities and direction for the year. More recently, I’ve also begun shaping them to allow for different versions and degrees of success. In thinking about the upcoming year and factoring in the impacts of fibromyalgia, I believe I see several general areas around which to craft my personal 2017 goals: health, relationships, creativity, growth, and figurative or literal “housecleaning”.

I know up front that this year won't allow
for an off-the-grid family backpacking trip...
For me, health and my fibromyalgia diagnosis are completely intertwined right now. But I have to acknowledge the improbability of going from notably impaired daily functioning to returning to arduous backpacking excursions off the grid, or multi-day mountain biking road trips. I think the reality of the condition and treatments, and the newness of my diagnosis, require that my focus is on an improved understanding of how to manage my condition. By breaking it down into refining my nutritional regimen started in 2016, building on the limited exercising I could muster late in the year, and experimenting with other supports such as massage, meditation, and so on, I should be able to slog through the daily grind and end the year with improved health and better knowledge of how to manage it. This goal meets my criteria of layers of success and flexibility, and underscores that the year is just truly about effort and learning.

... But we can convert it into a goal
of finding new ways to connect.
Fibromyalgia affected not just me but those around me for nearly the past three years. As such, I think a second general goal revolves around learning my physical limits for the current ways I bond with friends and family. It also seeks new ways to connect with loved ones. Again, this will require experimenting. But the only way to discover new limits is to try and then assess; the only way to develop new avenues for creating shared memories is to risk a bad time in order to revel in a good experience. Whether we attempt some grand international vacation or merely check out a museum we’ve never visited is irrelevant. The priority is on partnering with those close to me to see how we can continue sharing our lives.

Regularly playing this beautifully-restored guitar
is  one of my goals for 2017.
I long ago learned I need creative outlets for my emotional well-being, and I chafe without those releases. The previous iteration of my life was wonderfully integrated. But, my now-chronic condition led everything to unravel and left me rudderless. This past year’s creative goal emphasized trying new creative expressions on for size. For this upcoming year, I can build upon that effort and see goals that my condition no longer disrupts. All of the experiments I’m conducting create some fertile ground to return to writing; the prior photography I’d toyed with helped me begin to see what is in front of me in a new way, and building a more diverse library of photographs to accompany my writing seems to be an easy and fulfilling add-on; resuming guitar playing after years of near-dormancy caused some elbow pain this year, but I learned ways to mitigate it. So, continuing to rediscover my love of music through some focused efforts will allow me to have a collection of creative outlets that cover the spectrum: written, visual, and auditory. In that sense, I don’t care if one of them dead-ends, just that I give each an earnest shot. If so, I believe I’ll end the year with something to show for the effort and to build upon.

A goal that dovetails with my prior ones is to push myself to evolve: to return to some of my prior activities in a way acknowledging my new limitations, and to see if such versions of those activities are fulfilling. In addition, I want to force myself to participate in completely new adventures that from the beginning appear likely to work within my constraints. Much of my reading on fibromyalgia has seemed to present a push-pull conflict between returning to your old self so that the condition doesn’t “win” and finding new ways to live positively so that you aren’t bound by your condition. I see my focus this year as going down both avenues so that neither artificially precludes the other’s chances for fulfillment. The reality is that we’re all always morphing, and the real point of this goal is spending this year seeding my life with varied opportunities, in the hopes that I yield some sort of benefit this year and position myself for better harvests in future years.

Chipping away at projects should help avoid
adding myself to the list of things needing repair.
Lastly, I have my tedious but necessary goal around “housecleaning”. No one loves updating wills, working with financial planners, mucking out gutters, cleaning out the attic, and the like. As I learned this past year, pushing hard and ignoring my body’s warning signs can lead to physically painful setbacks. Yet, these tasks are necessary evils for keeping affairs in order and avoiding more stressful alternatives that might otherwise arise. Therefore, laying out my priorities at the beginning of the year allows me to chip away at a necessary but boring goal and to avoid distractions or disregard.

I think the combination of physical and emotional well-being, staying connected with those around me, growing as a person, and tending to some loose ends constitutes a well-rounded, achievable set of goals for the new year. It addresses ways in which I experienced setbacks in preceding years due to my condition. It builds upon efforts or learnings from my current goals, now winding down. These days, I’m often easily frustrated or despairing, and sometimes pessimistic about my future. But this goal-setting is also a self-managing way to see positive outcomes. In their details, each goal also allows for degrees of success, since all-or-nothing outcomes are needlessly punitive and would only reinforce the frustrations I’m battling to overcome.  I’ll commit these goals to paper – or at least a virtual document on a laptop – and update them at least monthly. Doing so helps maintain my focus and positive outlook. It will also help me acknowledge small successes along the way.

Like everyone else, I want to live vibrantly, with great moments transitioning into wonderful memories shared with those whom I love very much. Also like everyone else, I’ve experienced the curve balls that life eventually throws at us all, each with our unique versions. So, for me, New Year’s resolutions are not about unrealistic aspirations or about lamenting what might have been. Rather, they’re about trying to attain the potential that my life offers, make some impact to the world I live in, and do my best to enjoy the ride.

For now, though, one step at a time.

Jay Bell

Monday, December 26, 2016

How Fibromyalgia Affected My New Year’s Goals

A year ago, I joined countless people in the annual rite of declaring my new year’s resolutions. However, unlike a lot of people, I had to do so in my characteristically overly-analytical way: I wrote them down, refined them, ensured they were clear and achievable, and then identified sub-goals feeding into them that were equally explicit and realistic. As a package of “resolutions”, I then validated that they were sufficiently comprehensive. Having finished that nerdy bout of planning, I committed to tracking progress over the year.  As I now watch 2016 finish its wind-down and begin thinking about 2017, it strikes me as important to review and reflect upon a tumultuous twelve months.

My goals were varied but comprehensive. In the past, I’ve thrived seeking out physically demanding adventures that create lasting memories with friends and family, which in turn scratched my creative itch by blogging about those events. At the start of the year, I believed I was enduring a series of injuries from those adventures that disrupted my whole cycle of fulfillment. As such, I sought to pursue healing. The “injuries” and my accumulating years left me wanting to get my figurative and literal house more in order. I also aspired to experiment with finding replacement creative outlets, and to seek alternate ways to bond with those around me until we were again backpacking off the grid or mountain biking all day in some other state. On the surface, my aspirations for 2016 ended with a combination of failures and mild successes. But, geek that I am, I updated that document religiously, and it now allows me to see my results as more nuanced, and as a result I choose to see a lot of successes.

The struggle to heal my injuries led to doctors who gave up on me, myopic specialists who wouldn’t look at me as a whole person or listen to me, an inability to return to my old self, and extreme frustration. But, it also led to finding a doctor who does listen, who kept working through possible diagnoses, and who established a diagnosis of fibromyalgia. As a chronic condition that is essentially established by ruling everything else out, that was not an easy feat. In actuality, it was the end result of well over two years of physical problems. This diagnosis will mean a lifetime of pain and impacts to digestion, cognition, immunology, sleep, and energy, so it’s not a pleasant end result. But my perseverance allows me to now know what I’m working with. This is no small comfort, and is a contrast to a point a little over a year ago at which I was struggling and looked despairingly at my partner, Sara, pleading futilely for her to tell me what was wrong with me.

My new eating habits led to losing more weight than intended!
The unrelated efforts to shed weight I’d accumulated from not exercising – but eating as if I still were – led me to an end result of a nutrition plan that turns out to be great for people enduring fibromyalgia. That has led me to take all of the desired weight off, along with another ten pounds to boot. This has since become packaged with a nutritional supplement regimen. An added benefit has been that as long as I stay on plan, I have no further digestive issues. Prior to fibromyalgia, I’d been someone who could practically eat gravel and wash it down with motor oil, with no ill effects. So, for all the negative aspects of this diagnosis, I’ve found one area where I can feel as if I returned to normal.

House projects never seem to go smoothly.
But, these days I really need to pace myself.
When it came to getting my figurative and literal house more in order, I can see a series of tasks that went undone. I can see rooms or a yard not as pretty as they should be. I can see paperwork that a lawyer never drew up. Instead, I choose to see someone who was dealing with a lot of challenges on a daily basis, yet still managed to chip away at everything. There are dangerous trees now removed, garage doors that work, shrubs that were transplanted, rooms that were painted, and finances put into the hands of a professional to help provide security for me and my family. Even though I didn’t finish all I sought to do, I had to persevere, such as squeezing in appointments amidst medical visits. I had to fight off the fatigue and allow for several days to complete paperwork I might have previously banged out in one late night. I had to learn to pace myself, such as after I literally almost collapsed from pushing myself painting all day without breaks. Previously, I would have expected to accomplish twice as much in half the time. But this year, the work I was able to complete took far more effort, planning, and perseverance. That hard work has already produced some results, helped me learn more about how I need to now manage myself, and provides a springboard for my 2017 focus.

Lastly, my adventures and bonding had nowhere near the volume and results I’d sought. I was never hurtling through the woods on a mountain bike, whooping excitedly alongside Sara. I never summited another mountain with my daughters. I never sat in a kayak, listening to the water lapping again it or the shore.  Lacking those adventures, I lost my creative outlet as well. But the limitations that fibromyalgia foisted upon me left me desperate to find some way to search for some sort of alternatives to still have new experiences with loved ones, as it also left me chafing at the lack of a creative outlet.

My girls rode and drove ATV's for the first
time, loving the adventures with family!
In order to not waste the year, experiments led me to help set up a wonderful family reunion filled with horses, ATVs, jamming on a porch with family members, daughters meeting far-away cousins, and countless laughs. I spent time at the beach instead of the woods, and my off-road beach permit allowed my girls an opportunity to host birthday weekends on Cape Cod that they could brag about. My family saw a wonderful play from the second row of an antique playhouse. I welcomed the holiday season with over a dozen good friends on Martha’s Vineyard. Furthermore, not all good moments were the big ones. I was driving home one day and pulled over, admiring a sun descending behind the trees, casting long shadows as a stone wall and dirt road stretched out towards it, and briefly lost myself in photographing that moment. Another time I paused in my errands and stand next to a salt marsh, capturing a sunset that was both scenic and a harbinger of the oncoming autumn. Those moments weren’t just visually serene but also mentally peaceful. Additionally, I rediscovered playing music, and sat in front of Sara on Christmas Eve, sharing a vulnerable moment as I played her some songs I’ve written but not shared.

Again, the year is now done and I can’t change the past. So, I can view the year as full of setbacks, lost opportunities, and wasted time. Conversely, I can reflect and see much effort and perseverance, dogged determination and courage. I can choose to see the progress towards managing my condition, the planning that better sets me and my family up for financial stability in coming years, the house that has a few more projects crossed off the never-ending list, the adventures that materialized, the relationships that deepened, and the experimenting with creativity that were fulfilling. I can choose to see failure or triumph. I can choose to feel frustration or pride.

As I turn my focus to 2017, I think it is important to choose the editorial that points at successes, not failures. Equally, I believe that I should leverage this as momentum for the upcoming year, to build upon these hard-won victories, and to continue converting limitations into opportunities. If I continue to work at setting realistic but aspirational goals towards becoming the best me I can be, I believe 2017 can be a year filled with promise and potential just waiting to be discovered.
The end of one moment is the start of another, so let's see what 2017 has in store.

For now, though, one step at a time.

Jay Bell

Sunday, December 18, 2016

How a Chronic Diagnosis Leads to the Deconstruction of a Life

Looking back, it seems so innocuous: I’ve put a lot of wear and tear on my feet through my outdoor adventures, and I aggravated a prior plantar fasciitis injury. Two years later, I found myself stunned as I absorbed the reality that I had a condition that would affect me and impede me for the rest of my life.

A diagnosis of a chronic condition can be traumatic. No, not one like high cholesterol that requires swallowing a statin and then diving back into the steak tips. But a big one. In my case, fibromyalgia: brain function and chemical changes lead to essentially a permanent fight-or-flight response that often results in ongoing pain, digestive issues, cognitive impairments, weaker immunity, poor sleeping, low energy, and the list goes on. But whether it’s this or others that could range from multiple sclerosis to bipolar disorder, from ankylosing spondylitis to alcoholism, from epilepsy to PTSD, there is one very stark reality that accompanies the acceptance of that diagnosis: the need to deconstruct your life in order to reassemble it in a way that addresses your new limitations. 

Drawing my blood turned out to be the easy part.
Conditions such as these aren’t cured with a pill, a pat on the head, and going on your merry way. Instead, they inflict both obvious and subtle problems long after you’ve left the doctor’s office. The obvious struggles include experimenting to discover the medicines and treatment regimens that provide clinical relief to get you through the worst moments and to stabilize you. That requires time, side effects, setbacks, failed attempts, crushed hopes, and a diminished quality of life.  Sometimes, that seems to me to be the easy part.

The harder part is accepting that you can’t live in the way you’re accustomed. For me, I’d already spent years working to be the healthiest and best me that I could be. I’d established a lifestyle and life  that I loved. I was happy, and bouncing between living in the moment and dreaming of my next immersive adventure. But now that’s all gone. The only thing I know at the moment is that I can’t really live that way anymore; living in the moment is currently a fantasy.  I need to be cognizant of my condition – all the time: I need to carefully start the day off. I need to religiously take my prescription and supplements. I need to eat militantly. I need to exercise. But I need to not exercise certain ways. I’m stressed by my need to avoid stress whenever possible. After an exhausting day, I then need to sleep delicately to try to make it through the night.  The list goes on and on, and when I deviate I pay the price.

But, in addition to all of those efforts, I also need to now examine my prior lifestyle and find all the ways I’d now exacerbate my condition. I need to recognize how certain fulfilling activities will cause flare-ups so that I can now avoid them. I need to identify how certain tendencies got me this far in life but now become liabilities. I need to assess my personality, behaviors, and attitudes and hone in on the pieces that aren’t unhealthy under other circumstances yet now create risks for me. I need to analyze my relationships and determine in partnership with those friends and family how I need to modify them in order for them to remain mutually nurturing and fulfilling.

As I've learned from time on the trail,
it helps to break up arduous efforts into smaller pieces.
That deconstruction is painful and hard. Having slogged through it once before for other reasons, I know what lies ahead. It requires an introspection that most people don’t engage in. It forces you to analyze not just how you’ve lived, but to understand why. It inevitably drags some skeletons out of the closet, because no one lives perfectly, and everyone has some blind spots. It forces you so far beyond your comfort zone that you couldn’t find it with binoculars. It leaves you questioning your perception of yourself, your world, and your place in it.  That dissection and rebuilding also takes time; time that you feel you can’t afford because you’re already chafing at the wasted time it took just to achieve a clear diagnosis. For me, I now look back at a couple of lost years. Then I look ahead to a couple more years to attain a new rhythm to life.  As a 45 year-old smack dab in “middle aged” territory, I’m very conscious that our time here is finite and I loathe wasted days, let alone months or years. But, this is my inescapable reality.

But to not face up to the task at hand is a worse fate. To merely wallow onward substitutes a ore unappealing situation than grinding out this arduous self-appraisal. It saves the mental discomfort and avoids trials and errors. But instead, it does nothing to move me forward. In fact, it adds to the physical pain and mental stress by refusing to cultivate my ability to self-manage and maximize whatever potential I have.

I'm not sure about finding a great reward at the end of this,
but I'll tryto stay positive.
I didn’t ask for a life-altering diagnosis to endure for all my remaining days; I shouldn’t be forced to break down and reassemble my life. Nor do those around me deserve to become collateral damage from my new limitations. Unfortunately, these things are not up for debate. The only choice is where I go from here. So I will doggedly labor through that deconstruction, focusing on one brick at a time in the foundation of that new life, and believe that better days lie ahead.

One step at a time,
Jay Bell, AKA Rock Hopper