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INTRACTABLE PAIN & INTRACTABLE LOVE: PAIN AND INTIMATE RELATIONSHIPS

(This is a modified version of my piece published in the December 2020 rsds.org newsletter)

What Does Grief Have to Do with It?
 
It’s that time of year, when we tend to make more space in our lives for gratitude, giving, and even miracles. And considering the unique challenges of this particular holiday season, perhaps we’re turning toward these notions even more.
 
Yet even in non-pandemic times, the holidays can be difficult, especially for those dealing with loss of any kind. Feelings of longing or loneliness are especially highlighted in contrast to seemingly unending snapshots of togetherness on social media and television’s portrayal of the ideal. 

If you visited this page because you have a medical condition causing chronic pain, you've undoubtedly confronted inherent (and unwanted) changes in your day to day life. During that early stage after diagnosis, we see ourselves through the lens of what we did, and who we were prior to a life impacted by intractable pain. In other words, people with chronic pain often become involved in an intimate relationship with grief.

When we ask for help it can remind us (consciously or not) that we’re no longer able to do things we could do pre-diagnosis days, at least not in the same way. On a deeper level, needing help can remind us that we’ve lost a part of ourselves. No wonder the topic of asking for help is so weighted. Who wants to open up to feel that sense of loss? Who wants to be reminded about something that’s so hard to accept?
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A Foundation of Self-Acceptance
 
A friend of mine who, gratefully, does not live with a pain condition, recently lost one of the most important people in her life, her precious aunt. Not knowing how I could possibly help (do we really ever know what to do or say when somebody dies?), I reached out to express my condolences, and asked if there was any way I could support her in this time of grief. She responded by saying she finds poetry to be of comfort and asked if we could read some poems together over the phone (if not for the pandemic, I imagine we would have met in-person, somewhere in nature).
 
As much as I love poetry (and all things related to the written word), it wouldn’t have occurred to me to offer to help her in this way, and hearing her request gave me a surprising sense of relief. I couldn’t bring back my friend’s loved one, or take away that gut-wrenching sorrow, but I could - in a clear and concrete way – give her something she needed.

​I also felt a sense of admiration. I don’t know if she would have directly asked me for these poetry sessions if I hadn’t reached out, but she responded, and did so with clarity and a quality that should always be a priority for people with high-impact pain - self-care. Ultimately, my friend’s ability to make this request came from a place of self-awareness, as if to say, “I need the comfort of poetry right now” and self-acceptance, which might sound like this: “I’m in a lot of emotional pain… I lost somebody I love dearly” or, “As hard as it is, I will feel these feelings of grief”, or “I don’t need to go through this alone”.
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Challenges to Asking for Help

Most people have at least some skills to communicate their need for help. So, what gets in the way?
 
My friend had clarity about what she needed, but her response, and why it was so striking to me, was not the norm. Most people have difficulty identifying what they need from a loved one in the first place (which of course makes asking for help impossible).

Another barrier to asking for help has to do with feelings of vulnerability. As children, we didn’t learn how to express our vulnerabilities (much less how to grieve, or how to ask for help).  Underneath that vulnerability usually lies a sense of fear, so it’s helpful to ask ourselves, “What am I afraid of”? For some, the fear is about appearing weak; others fear rejection or even abandonment. All of these feelings are amplified by the magnitude of physical pain and other symptoms secondary to an incurable medical condition.
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We must also acknowledge our societal value of independence (and our hard-wired propensity toward it) and look to our family upbringing and cultural beliefs to understand our feelings and behaviors about asking for – and receiving – help. From that point, we can move to a place of self-acceptance and make choices that are in our best interest. Easy-peasy? Nope, it’s a psychological process made more doable by – you guessed it, getting some help!
 
Chronic pain also tends to evoke feelings of guilt. If you feel guilty about asking for “too much” from people, consider one of the greatest antidotes to pain and suffering: being of service. Contributing to the world, even in small ways, connects us to humanity and gives us a role in repairing society. When we ask ourselves, “How can I be of service to others?” we show up more presently in all of our relationships and worry less about asking for help.
 
Like my friend did, we should allow ourselves to grieve and become open to self-acceptance. Only from that place can we become curious about what we need and ask for it, and we can best learn this through mindfulness practices (e.g., meditation, journaling, yoga). Mindfulness practices should be part of our daily lives, as they are the entrances to self-acceptance.

Asking for Help and Needing Help
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Ask yourself if one of these statements resonates more:
“I don’t know how to ask for help” or
“Asking for help feels awful because I don’t want to accept that I need the help?

​​However related, distinguishing between these two issues is the place to start. Here are some tips for both that I hope you find helpful.

• Clear communication (begin from a place of “I…”)
• Specificity (ask – in simple terms – for exactly what you need)
• Express gratitude (versus apologizing for needing help)
• Use your resourcefulness (access various means of support so you’re not relying on only one person)
• When it feels particularly hard, shift to asking for help from a place outside of yourself. This, of course, is different for each of us, depending on our beliefs. We might ask:

 

• Please help me accept my pain levels today
• Please help me find self-compassion in this moment
• Please help me be okay with asking for help

 
Where we might seek help for deeper inner-wisdom:

• prayer
• poetry
• angels
• nature
• journal writing
• G-d or a higher power
• a loved one who has passed
• the animal world (oh, the wisdom animals have to offer!)
• photographs
• the Universe
• the dream world

 
People who care about us want nothing more than to take away our pain. So, until a day comes when they can hand us the key to a cure, why not find ways to let our loved ones experience what my friend gave me – the chance to help in a concrete, doable way. These opportunities are sacred gifts, and who doesn’t want an unexpected gift – especially this time of year.

It was an honor and a joy to write this uplifting piece, originally published in the National Pain Report. Enjoy!

People frequently ask me how I'm able to smile so much when I have such intense pain. The answer resides on my bookshelf. 
 
She's a glittery pink ampersand, the symbol of one of my most central values. We've had an intimate relationship for decades and, without her, it's possible I might not even be here today. Amps is surrounded by books on meditation, writing, health, poetry, psychology, and religion. There's some fiction in the mix too, but Amps is in true company with the stuff of real life. She's a spiritual guide within her own right.
 
When I was a teenager going through one of those calamities of adolescence, my dad would sometimes remark on how cool it was that I could still laugh in the midst of struggle. That stuck with me; it taught me that even when things seemed unsurvivable, there was always an "and." Later in life, within the context of my work as a psychotherapist, I noticed many people didn't grow up learning (either directly or incidentally) that two seemingly divergent realities - such as pain and joy - can co-exist.
 
In the throes of intense physical pain, the ampersand can help us have a better quality of life. We can become so focused on wanting to come down a few notches on the pain scale (you all know...that obnoxious tool that boils the complicated ordeal of chronic pain down to a number) that we forget what exists outside of our bodily suffering. We yearn to move away from "9," in hopes of landing somewhere in the middle of that extreme and an unrealistic "1." In the process, we can forget there's more to our story. 

This piece was first published in the Mail Tribune.

Shortly after settling in to watch OSF's production of Hairspray, I fell madly in love with teen dance sensation, Tracy Turnblad. Exuding an explosive passion for life, she's uncontainable in all the best ways. Tracy has a voice that needs to be heard, and she uses it to question the absurd notion that size, race, physical ability or gender has anything to do with how, when, where or with whom we interact. And don't you ​dare tell her she can't dance.

"My mind tells me no but my feet tell me go!'" 

Tracy's words have been echoing in my brain since I saw the play. She speaks to a discrepancy between her mind's guidance ("I'm not supposed to do this....") and her profound need to boogie her voluptuous self right into that audition. She's frustrated and indignant; caught between the reality of what is, and what should be. 
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I get it, Tracy Turnblad; I am you--with a little twist. Edit that quote of yours a bit to read, "My mind tells me go but my feet tell me no!" and it's my story, one I share with brothers and sisters all over the world. It's the story of disability secondary to intractable pain (a constant state of severe physical pain which has no known cure, and is not easily managed). 

Along with the hits we get from societal stigma, it's difficult when our own bodies impose limitations on our lives, and the struggle goes deeper than the mind. The real emotional impact is born from incongruence of spirit and body. Our spirits are life-sustaining; they inform us we must create, write, connect, sing, snuggle our dogs, or dance.​

Hey everybody! No writing here today...but I have a five minute video for you!

This video (along with thirty others from around the country) was selected by the U.S. Pain Foundation as part of a national campaign, September Pain Awareness Month.

As you know, awareness leads to better research, education and support. This positively impacts not only persons in pain, but loved ones and professionals as well.

Please click here to see me speak candidly about how chronic pain affects my life, and some of the ways I cope with it. As always, feel free to share. 

Until next time! 💜

Recently, during a dinner outing with my wife and another couple, I mentioned my plan to try driving again (it's been several years since disabling neck pain and other medical problems made driving a thing of the past). One friend responded, "Great! You can finally be independent!" There was no ill-intention in her comment. Still, it felt like an eyelash jabbing my cornea. At the time, I just nodded. My "response" came later that evening when I was alone in my head:

So, let me get this straight: Out of the four adults sitting in this restaurant booth, only three are independent? The three who drive?

I don't think so.

"I did it myself!" It's ingrained in us. Just look at a baby waddling toward her parent on her own for the first time. She responds to excitable feedback, and the prideful scene is juicier than those yummy fat rolls on her delicious baby legs. As adults, we still feel joy from solo accomplishments (even more so when we've fallen on our tush a few times en route).

But what happens when we can no longer do things on our own and our Western value of independence is threatened? How do we contend with the psychological problems that arise from valuing ourselves (and others) based on our learned ideal of self-reliance?

In adulthood, our struggle with autonomy often begins with aging. Hearing, vision, or mobility changes can disrupt daily activities; sometimes to the extent that we question our own identity.

For me, grappling with independence began earlier, smack in the middle of my forties. Pain from failed spine surgeries and the subsequent onset of CRPS became disabling and, sadly, I needed to put my busy psychotherapy practice on hold. I spent days and nights struggling in pain, trying to figure out how to do simple tasks. Helping adults and children had been the focus of my entire career; now I couldn't even help myself. If I couldn't cut my own food at dinner; if I no longer had my work and I wasn't able to drive, what did that mean for me?

It meant I was no longer the independent person I had been all my life. At least that's what I thought in the beginning when grief adhered to me like sap on a pine tree. This grief was dripping with that pin-sharp word my friend mentioned. Independence and I have been intertwined for as long as I can remember. I dug up this poem I wrote when I was eight years old:

Once there was an elf
She climbed upon a shelf
She did it by herself!
She helped another elf!

This early exercise in self-expression communicates that Little Elf's mind wasn't really on the goods awaiting her atop that mountainous piece of furniture. No, she was all about determined self-reliance. It made her feel like she could do anything those characters in storybooks could do; even make her way up a lofty shelf full of books! This desire never changed; neither did her value of helping others. Some elves just know they're meant to become therapists and help people get perspective on their inner-s(elves).

Disability prompted my own quest to re-evaluate life, from both an internal and societal stance. I developed a closer relationship to interdependence, but also stayed true to independence. I was able to embrace both by redefining what the latter truly means--and what it doesn't. I realized independence isn't driving to an appointment. That's convenience. It's not lifting a bag or walking. That's mobility. It isn't hearing, or talking. Those are communication modalities.

​Independence is about personal agency. When we make choices and take action from a place of confidence and intention, we're in control of our lives. Independent minds assume responsibility and exercise resilience amidst difficult circumstances.

So, as it turns out, I never actually lost my independence. What I lost was a life of relative ease...something we can all relate to (or will relate to in the future, merely as a result of the aging process). Grief from this will creep up and jab us all in the eye sometimes, so we must acknowledge it and respond with self-compassion. Only then, can we befriend that elf within us who finds creative ways to keep climbing--always lending a helping hand along the way.

Talk about the 1990 Americans with Disabilities Act (ADA) has surfaced since the recent death of President Bush who, despite opposition from his staff, signed the ADA into legislation. The civil rights law, prohibiting discrimination against persons with disabilities, moved forward because of the disability advocates who marched, sat, spoke and fought for it in the first place. Still, nearly three decades later, people living with disabilities know the struggle still exists. 

I recently caught up via email with a local friend I hadn't seen in weeks. "I assume you're doing well, since you're going to Arizona this weekend," she wrote. A reasonable assumption, but not quite on point. Things have been hard--really hard--since a recent RSD/CRPS spread which, for now, I'll sum up with own my initial response: Are you kidding me?!! Despite my body's turmoil, I wanted to attend to a part of my life separate from the pain, so I made the choice to travel. 

We find the cheapest flight available, which means changing planes in LA and no checked luggage, but it's doable. We head down south to visit family in Arizona, family that is unable to come our way due to their own medical issues. After the first of two short flights, we de-board (my wife, of course, carrying the physical load). Just outside the terminal gate we learn where to go for our transfer, down the short walkway and to the shuttle, easy peasy. Upon arrival, we breathe easy knowing our second plane gate is just ahead. 

We walk through the doorway to…what?!! A sense of confusion; imprisonment. Nothing but a huge flight of stairs leading up to our gate; no elevator or escalator in this closed-off space. Just a ridiculous amount of stairs, loads of people who seem to be skipping upward, and our own dropped jaws. Still, I keep looking ahead like it's an open fridge and I'm waiting for something other than yogurt and condiments to appear.

Whoa, I took what I thought would be a brief hiatus to focus on our move to Oregon earlier this year and—poof!—became a blogger-with-neglected-blog cliche. But, I’m here now on this crisp, clear morning and so are you, so…welcome, and thank you!

We’re here in the midst of holiday season. Gathering with loved ones, whether joyful or stressful (or a likely combination of both), can lead to an increase in pain. Inability to participate because of pain, as we all know, can be distressing and sometimes heartbreaking. So, it’s time more than ever to step up the self-care and attune to our bodies and our minds.

I’ve done an ultra-modified yoga-pilates-physical therapy fusion at home for years. My practice, born of necessity and desperation, is partly comprised of various techniques I’ve picked up over the years. The rest of it consists of a bunch of things my body just wants to do.

Lately, my body has been telling me to switch it up and—wouldn’t you know it?— I saw a flyer for an adaptive yoga class. My first class led to a flare-up, a painful “Told you so!” echoing from my limbs, reminding me to be more aware. Clearly, I would require adaptive adaptations, but with the thoughtful help of my two new teachers, I’d make it work.

When we got to a pose that was too painful to do in any form, one of the teachers suggested I imagine myself doing it. She explained to the class that we can benefit from simply preparing our bodies for the positions and visualizing them. So, I engaged my core, focused on my breath, and did the pose in mind only. In other words, I acted as if I was physically moving my body.
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The suggested modification reminded me of the impact visualization has had in my life for so many years, especially since pain from CRPS and a complex spine condition progressed. Those of us in pain act "as if...” for the benefit of others all the time (behaving as if we’re not in pain, for example). So, think of visualizing as a way to project an “as if...” image solely for yourself. If your leg is cold and hurting, imagine it’s swaddled in a soft, warm blanket. If a venue (or a person) is overly stimulating, take slow breaths and gaze at the ocean in your mind.

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