September 1, 2015

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Ten years ago
From today
A simple roll
In bed that day
Popped a disc
Out of its place
Brought on the pain
And then the race
To stop the pain
And heal this bod
To finally find
I’d been a fraud
I lived my happy
Little life
Free from nearly
Any strife
Until my neck
It just gave way
I learned I had
A price to pay
Long lost pain
Deep and dark
Came to me
Like a shark
Stealthily cruising
Through the sea
It took a bite
Right out of me
The pain, so sharp
It would not stop
Until I faced
The dreadful part
Of my life
That scared me so
The truth can be
So hard, you know
And here I am
Ten years gone by
With all the work I’ve done
I cry
The tears still come
They say let go
I try and try
But somehow, no
The pain, though less
It won’t give up
It still resides inside; no rest.

Ten years ago
From today
The journey started
Now I say
Oh please, oh please, oh please
Let go
I’ve done my time
Don’t you know
I’ve done the work
I’ve paid my dues
It’s time to end
This lengthy ruse
The power sits in me
I know
So come on baby
Let it go!

 

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Wake Up!

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It’s that time of year again. School starts in two weeks. My older daughter is already away at college and my younger daughter is starting high school this year. I’ve been at this getting-the-kids-ready-for-the-first-day-of-school routine for 15 years. You’d think I’d have figured it out by now. But I stand in my daughter’s bedroom doorway struggling with what to do: wake her up or let her sleep.

In the past, I’ve tried starting two weeks before school begins to slowly ease into earlier wake-up times. Yet that’s simply two torturous weeks of me pleading, yelling, screaming, or nearly crying in defeat everyday while my kids grumpily growl at the egregious affront of my waking them up. The pain and suffering that go along with this method—for them and for me—hardly seem worth it.

I’ve also tried the cold turkey method. I let them sleep as long as they want. It’s still summer vacation after all. Soon enough they’ll have to wake up at an ungodly hour. Why torture them sooner than necessary? But their exhaustion, sometimes followed by afternoons of tears, makes the sleep-deprived beginning of school a nightmare.

It would seem there is a simple remedy: go to bed earlier. Easier said than done in a family of night owls. Waking up early is unnatural. Going to bed before 11:00 is unnatural, too.

Since my kids turned two, bedtime has been an elusive concept saved for those with more strength than I have. Going to bed early for us is the proverbial square peg in a round hole. Oil and vinegar.

When my kids were young, I read all about how to put your kids to bed. I was determined to get my two-year-old to bed and to sleep at a decent hour. I followed the professional advice I had read: a warm soothing bath, a story in bed, a calming lullaby. In our house, this was translated as splashing in the tub, being actively engrossed in a story, and singing along to the music. There was no lulling going on in my house.

Reading the story did in fact have a narcoleptic effect on one of us. My daughter would have to poke me to wake me up to finish reading the story.

When the soothing bedtime routine didn’t work, I tried wearing her out during the day. I’d leave work and meet her at her daycare during their sanctioned naptime. I’d take her out to the playground while her toddler-mates slept. She tells me now how tired she used to be. But darn if I wasn’t going to get my child to sleep at a reasonable hour. She was going to be asleep before 10 pm if it killed me. After all, I needed sleep!

The daycare naps I could control by taking her out of the classroom or by asking the workers to keep her quietly busy while the others slept. The tougher challenge was avoiding the dreaded late afternoon or early evening car ride nap. The steady hum of the car lulled my little angel into an un-rousable state. A nap in the late afternoon was merely the winding of the crank on the back of my Energizer Bunny that would let loose as evening fell when the other 2-year-olds in the world were winding down to bed.

Determined to get her to bed like all the other two-year-olds I’d heard about, I’d start the bedtime routine at 8:00 pm, praying my Bunny would wind down quickly with the bath, the reading, the music. At 8:15, 8:30, 8:45, 9:00 she was still going, going, going. I begged for gravity to tug on her eyelids, heavy with the day’s activities, to gently close them and send her to a dream-filled slumber. As my eyes were closing in mid-sentence, I drew open my stinging eyes, willing wakefulness upon myself to finish the book: 9:15, 9:30, 10:00.

Finally, finally, finally, I saw signs of fatigue in my Bunny. I still never actually saw her fall asleep night after night, but at least she was tired enough to let me leave her so she could eventually welcome a night full of sleep.

It took me a while of dutifully trying the soothing bedtime routine before I finally realized that no matter what I did, she wasn’t going to fall asleep until her body was ready. I finally abandoned the two-hour “soothing” bedtime routine. I couldn’t keep it up. Whether I started the routine at 8:00 or 9:45, she was never ready to forsake the day until 10:00. I gave up trying to be like other families who put their kids down at 8:00 and had a few hours of adult time in the evening. The futile attempts were killing me. Realizing my kids just naturally go to bed late saved my sanity.

Before I came to this realization, we were visiting a friend with kids the same age. We were invited for dinner and their two toddlers were still awake when we arrived. Dinner was to be served soon and my friend said she would put the kids to bed before the adults would eat dinner.

Good luck with that, I mused, silently resolving that dinner wouldn’t be for another two hours.

Ten minutes later my friend calmly sauntered down the stairs ready for dinner.

My husband and I looked at each other in incredulous confusion. “They’re asleep?!? Both of them??? How did you do that??”

I saw no signs of a haggard mom sucked of all her energy in a desperate and vain attempt to witness the heavy breathing and muscular abandonment of genuine sleep.

I now understand that my kids are innately different.

When my teenagers sleep until 2 or 3 pm, I don’t worry that their friends only sleep until 10 or 11 am. I regularly slept past noon as a teenager, too.

I’ve learned for myself over the years how important sleep is. After having baby #2, and finally heeding the advice I’d been given: sleep when baby sleeps, I learned first hand the value of sleep. Once I allowed myself adequate sleep, my tolerance levels went up. That is, I yelled at my kids less. Years later, after developing a chronic pain condition, I was reminded again of the importance of sleep. It’s a vital part of my pain management plan because lack of sleep exacerbates my pain.

So I let my kids’ bodies dictate when and how much they need to sleep. But when societal constructs, like school, interfere, the challenge begins again.

I open the door to my 14-year-old’s room. I see her mouth gaped open in the rapture of deep sleep. Do I let her body catch up on what it needs or do I try to train it to wake up earlier when she’s going to need to wake up for school soon, and when she’s going to need to be alert and ready to learn?

I stand in the doorway of her room unable to deny her what her body craves. I know I’ll regret it when I have to help her wake up for the first day of school, but just look at her blissfully sleeping now!

Hopefully she can adjust quickly during the first week of school, I muse in naïve optimism.

My First Ironman

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I packed my gear and nutrition. I was ready for a long day. For me, the race—2.4-mile swim, 112-mile bike ride, and 26.2-mile run—could last anywhere from 12 to 16 hours. It all depended on whether the run would devolve into a walk.

The 2011 Louisville Kentucky Ironman was the culmination of a year of waking up to the beeping of a menacing alarm clock at 4:20 every morning. It was a year of morning, evening, and weekend trainings.

This was it.

My husband and I were there together. The night before the race, we set the alarm for 3:30 AM and went to bed before 9:00 PM. Pre-race jitters woke us both up less than two hours later. I peered at the clock, wondering if it was almost morning and whether “the” day was almost here.

No, not yet. It was 10:30 PM. There were still five hours left to sleep. No need to panic yet; five hours is adequate, I prayed.

Luckily I quickly fell back to sleep. Not long after, my eyes re-opened. The greenish-yellow glow of the numbers on the digital clock near my head mocked me: 12:30 AM.

Only three more hours before the alarm goes off! I need a good night’s sleep to make it through tomorrow… or is it “today” by now?!

After a trip to the bathroom, I was back in bed.

Oh no, I have to get back to sleep! My mind raced for a while and I was afraid to peer back at the nightstand. How long have I been awake? I need to get back to sleep!

12:50 AM.

I’ve been awake for 20 minutes! The run. I’m worried about the run. The last race—a half-Ironman distance triathlon—ended in the emergency room. Heat exhaustion. It’s going to be between 81o and 86oF tomorrow… today! Do I dare look at the time again?

1:10 AM!

I only know I fell back to sleep because the next awakening was at 2:35 AM.

No!!?! Less than an hour until the alarm! This is not good!

The bathroom beckoned again. Sleep finally overtook me, but only until 3:20 AM, when I woke up with a paltry 10 minutes remaining before the alarm would be sounding.

No point in trying to sleep now. Will 5½ hours of badly interrupted sleep sustain me through the upcoming challenge?

I consumed a bagel and orange juice and carried a banana and some trail mix with me for the long wait I’d have before the 7:00 AM swim start. Departing the hotel while passing some late night revelers who were on their way to bed, we walked a mile to the starting line. Amid the 2,500 competitors that morning, the end of the start line was another 15-minute hike past the snake of eager athletes who had arrived even earlier than we had. Having been up for two hours by then, the pain was present, but hadn’t started in earnest yet.

By 5:30 AM we were in line: athletes on one side, loved ones on the other. Many of us lay down on the wet grass hoping to recover some of those moments of sleep that had eluded us during the night. I stared at the stars, still crystal clear in the pre-dawn sky until I closed my eyes for a brief moment. The hush of voices was present: “Is this your first?” one athlete would ask of another.

Anxious energy filled the air. Yet my overriding sensation was hunger. It had been almost two hours since we had eaten breakfast at 4:00 AM. It’s not uncommon for me to have to eat every two hours or so, before the cloud of pain settles over me.

As long as the pain doesn’t start soon, I’ll be okay. 

I had put on a heat patch during breakfast hopeful to postpone, or alleviate, some of the inevitable pain.

Once the swim started, so did my pain. It’s neck pain. Six years earlier I ruptured a disc in my neck. I had disc replacement surgery to regain neurological function of my arm and was left with daily chronic debilitating pain (only to be intensified by a subsequent car accident). As the swim race continued, my neck pain assumed its typical route of moving farther up my neck to eventually engulf my head.

Suddenly I began to feel blisters form on my feet. I had walked the one mile to the swim start, and I now had to walk all the way back to the hotel—I was an Ironman spectator there to support my husband in his inaugural Ironman attempt.

But this was my Ironman, too. When living with debilitating chronic myofascial neck pain, being vertical—standing, sitting, walking—for more than an hour is often difficult. My husband and the other athletes weren’t the only ones testing their limits.

Back at the hotel, while the racers were still swimming, I only had about a half hour to rest and rejuvenate my neck before looking for my brave swimmer to emerge from the Ohio River. Worrying about being late to the swim finish, I walked briskly, as running was no longer within this pain-infused, former gymnast’s repertoire.

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Wishing to document my husband’s virgin Ironman race, I waited behind the thick pack of spectators with my neck painfully craned and my camera poised for 20 minutes to see the swimmers surface from the river. I had missed him; he had finished sooner than he thought he would.

9:00 AM: I chose to forego the hundred’s-of-people-long shuttle bus line, the 25-minute bus ride to view a portion of the bike course, and the standing around straining my neck to look along the bike route for a chance of seeing my man whiz by me. I needed to pace myself. Surviving the whole Ironman was the goal. How many times did I coach my husband not to push it? I needed to heed my own advice. 

“Don’t overdo the bike at the expense of the run,” I’d tell him.

I had about six hours to lay low until he came in on the bike. I rested, snacked, showered, and watched (from the hotel bed) the news reports of Hurricane Irene striking the east coast while the hours passed quickly.

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2:45 PM: I was rested and ready to view the bike-to-run transition. Figuring the walk to and from the hotel, plus the wait to see my dedicated athlete might take no more than one hour, I’d be okay, especially knowing I would be back at the hotel for a minimum of five hours while my Ironman-to-be ran the marathon portion of the race.

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Not wanting to miss him, I arrived 20 minutes before his red helmet and black bike whirred by me into the transition area at 3:15 PM. Through my own increasing pain, I cheered him on and watched him dismount from the bike. He looked haggard as he disappeared into the transition tent where he would change into his running gear.

3:30 PM: It’s been 15 minutes, where is he? How long does it take to change clothes? 

3:45 PM: Hopefully he’s drinking and maybe resting before he embarks on the marathon portion of the race. 

4:00 PM: He’s been in the transition tent for 45 minutes. I hope he’s okay.

Fifty-four-pain-surging minutes later he walked out of transition to begin the “run.” He didn’t look great; he said he was going to give it a try. He upped his walk to a shuffle and disappeared out of sight. Fearing another trip to the emergency room, as happened at his last half-Ironman race, I crisscrossed the route and caught sight of him somewhere before Mile 2.

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He was doubled over with severe stomach pains: 4:30 PM.

My hoped-for one hour of being vertical and five hours of rest in the hotel, turned into over five hours of being vertical, three of which were in the temporary medical facility on the course route. The nurses pumped three liters of fluid into my poor husband’s badly dehydrated body. I was glad to be by his side, but as the hours of vertical time added up, so did my pain. The smoldering soldering irons being jammed into my back, up my neck, and through my head were unrelenting.

5:00 PM … 5:30 PM …

I began salivating over the empty cots in the temporary medical tent. Only a portion of the 100 or so cots was filled with pained triathletes. All I wanted to do was lay myself down, but the cots weren’t for spectators. They were for the brave athletes who were testing their physical limits. I was just the athlete’s wife. Did I deserve a cot? I desperately wanted to lie down to relieve my neck pain, but how would that look?

6:00 PM … 6:30 PM …

The smell of pizza—for the hard-working medical staff—wafted through the air. Volunteers offered the competitors cookies, fruit, and soda to revive their weary bodies. Having only anticipated a one-hour outing, I hadn’t brought my usual stash of sustenance. Lack of food exacerbates my pain, just as lack of sleep and excess vertical time do. I had originally planned to eat back at the hotel during the run.

7:00 PM

It had been over four painstaking hours since I had left the hotel room where my stockpile of emergency food resided. Longing for a cot and drooling over what might have been delectable pain-reducing pizza, I didn’t dare ask to take food away from the on-duty doctors and nurses. Instead, I quietly prayed for the moment they would release my re-hydrated partner so I could be reunited with my own food and lie down on the hotel bed.

Once Hubby was out of harm’s way, we were finally in the hotel room by 8:00 PM—16½ hours since we had started this adventure. He collapsed onto the bed from exhaustion and I collapsed from the burning pain in my neck, upper back, and head.

When I was at long last horizontal with the pain slowly retreating, I drifted off to sleep thinking about my fellow chronic pain sufferers. I wondered what Ironman they may have silently endured that day. I dreamed about a place where there is a support team of family, volunteers, and medical staff at our beck and call, offering a mobile medical unit when we need assistance to make it through the challenges of mere mundane daily activities.

Living in chronic pain is often an endurance sport without a constant safety net and friendly support system. It’s sometimes doctors and even loved ones who don’t believe you, or at least can’t understand your pain; it’s insurance companies who deny you your benefits; it’s your own self-criticism questioning why you’re not healing.

I slept a solid nine hours that night—with no interruptions. Hopefully that would prepare me for the next day’s inevitable challenges.

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Twitch

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There is a gremlin hiding in my shoulder that keeps gnawing at me. In fact it’s a twitch that speaks in muted tones. It’s as if I’m sitting in a New York City subway car with screeching sounds penetrating my eardrums while a soft-spoken child is whispering next to me. I struggle to hear what she’s saying. I can’t make out her words, but I can tell by the look on her face she’s disturbed. If only I could hear her, maybe I could help her.

I’ve had small and subtle muscle twitches before, from what I presumed were fatigued muscles. Now I have the twitch of a madwoman who is tapping on my right shoulder like a doctor with a rubber mallet. She is knocking at the door of my subconscious, stirring up a reaction.

In my daily life, I carry on like a “normal” person, but behind closed doors my shoulder convulses without my conscious consent. Often I wake up in the morning and my shoulder is tight and stiff, as if it’s been twitching all night while I slept. When I go to the doctor to have my myofascial pain syndrome evaluated every few months and the doctor touches a painful trigger point in my neck, my shoulder twitches for a second or two.

My shoulder twitches every time I lie down on the physical therapist’s treatment table to have my myofascial pain relieved. Before the therapist even touches me, my shoulder flutters in anticipation. The twitching, which frequently escalates to a full-arm flail, carries on its dance while the therapist presses on the muscles throughout my body. I wonder what this twitch—my body—has to say. Only my subconscious mind really knows.

One time I was in a hospital waiting for a friend. When I saw a doctor in surgical garb walk by, my shoulder twitched half a dozen times. I wasn’t consciously thinking of the affront that neck surgery was to my body and psyche five years earlier, but maybe my shoulder was. Being left to suffer daily chronic pain for years to follow must have made an impression on the little gremlin inside me.

I was alone in a dark movie theater watching the film The King’s Speech during a two-week stint of intensive outpatient myofascial release treatment. When the film revealed that the King’s stuttering was likely related to his difficult childhood, my shoulder twitched several times. When I was seeing a psychologist and digging up my own past trauma, my shoulder twitched frequently.

During a food poisoning episode, I went to the hospital with severe abdominal pain and my shoulder was blatantly and uncontrollably jerking.

The nurse confronted me, “Why is your shoulder twitching?”

I considered mentioning how the twitching is tied to associations with pain, including a traumatic event in my past, but that could have taken a while to explain. Instead I said, “I don’t know.”

“You don’t know?” she retorted in a half accusatory, half incredulous tone.

Why did she say that? Did she think I should know? Did she know? Did she know that I really did know?  

I’m a living caricature of a disturbed mental health patient. While I live my daily life caring for my kids and trying to heal my chronic pain, my shoulder silently but sternly speaks to me. Yet I’m just still not exactly sure what it’s trying to say.

Am I struggling to get away from something scary, as my shoulder pulls forward toward my chest during a violent twitch? Am I trying to fight when my shoulder twitches so hard that my arm swings across my body in a virtual upper jab?

When the twitch pulls my right shoulder upward, am I shrugging my shoulders? I sense confusion and uncertainty from another time. Sometimes the twitch is so strong that my right arm crosses over my chest and takes hold of my left arm. Am I trying to hug myself in comfort?

Once the twitch caused my arm to swing up in the air like a bird flapping its wing. Am I attempting to fly to that nebulous place called freedom? In an exercise of self-acceptance, I try to give my shoulder—myself—permission to run away, to fight, to be confused, to be comforted, and eventually to be free.

The twitching started three and a half years after my pain started and a year and a half after I remembered about my childhood trauma from three decades earlier. Maybe my shoulder will quiet down when I’ve understood its message, when I’ve listened to what it’s trying to say, when that frightened little girl has said her piece, and when she no longer feels the need to protect herself.

Until then, I watch in awe of what’s hidden in my body and wonder how many others out there are silently hiding their emotions or unknowingly expressing them in unexpected or uncontrolled ways. I’m surely not the only one, am I?

 

A Fresh Landscape

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Over decades, lush grasses, flowering bushes, and steadfast trees flourish.  A girl becomes a woman.  The landscape starts out pristine; fertile land possesses unending potential.  The sodden soil nourishes the budding vegetation.

Under the radar, one bad seed is allowed to grow.  A stem sprouts up and a labyrinth of roots digs in.  The prolific undergrowth outgrows the visibly emerging seedling.  The meager stem and its carbon-dioxide-sucking leaves are likewise overshadowed by the dense forest above.  And the insidious roots expand and intertwine among the other roots, slowly choking them.

The “bad seed” was hidden in the underground of my subconscious mind.  It lay there frozen for 32 years—my own personal glacier.

Oblivious.  Life went on.   Until my body was besieged.

In September 2005, I rolled over in my sleep and ruptured a disc in my neck.  Now my body no longer functions normally.  Even after surgery, for years to follow, I could hardly walk, sit, or stand for more than 15 minutes without burning, searing pain overtaking me.  Debilitating, chronic myofascial pain was strangling me.

“They” say it’s unhealthy to hold things in.  But how do you stop something you don’t know you’re doing?  I buried a secret so deeply that I hadn’t even remembered it myself.

But then, the stealthy weed finally burst through the forest canopy, wreaking havoc on a body that tried to cover it up.

It took unrelenting excruciating pain to wake me up and tell me there was a problem, and it took specialized physical therapy (intensive myofascial release bodywork) to help me slowly unearth the secret I’d been hiding.  After two years of stark physical limitations, I only truly began to heal as I slowly let the secret out.  It was like pinching apart the neck of an air-filled balloon while hearing the piercing sound of air screeching out of the not-yet-tied-off swollen rubber orb; or like digging up a mandrake root and hearing its legendary cry.  The process isn’t pretty.  It has taken years.  It has meant confronting a past nightmare that oozes out of me in session after session of physical and talk therapy.

What is the connection between holding in a secret and rupturing a disc?  Was my neck injury fed by the secret?  Was my body holding in a firestorm for so long that it finally caused an eruption in my neck?  Seems inconceivable.  But my chronic neck condition that ensued only truly diminished as the secret bled out.

Soon I could stand for longer.  Soon I could tolerate walking for longer.  Soon I was boarding a plane!  I went from not being able to hold my head up for 15 minutes to glacier trekking in Alaska!

I stood atop the vast frozen terrain with crampons securely fastened to my feet knowing I’d been in my own ice age for over 30 years.  But the glacier was finally melting.  My pain had razed the landscape and forced me to clear out the destructive forces—the bad seed—by tediously tugging at the entangled roots.

A new landscape is forming.  There was an illness buried inside me that needed expression—a secret I couldn’t hold any longer.  As I continue to explore my past, out goes the pain, and back comes a life to be revered.

Welcome!

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First post is forthcoming.

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