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.