Love in the Time of Chronic Illness

I wanted to let you know about the reissue of my book under the new title: Love in the Time of Chronic Illness: How to Fight the Sickness Not Each Other. 

The book is a deep and practical guide that helps couples, and any patient/caregiver partners, stay connected and grow even stronger as they cope with the powerful effects of illness or trauma.

If this experience touches you or someone you know, I encourage you to pre-order this book on Amazon, in either Kindle or print versions.  While the book will officially be available on June 12, pre-ordering now will help boost the book's visibility.

Love in the Time of Chronic Illness has many stories from couples who share the lessons they learned about living with illness or trauma:

• Frank and Linda, whose stroke caused them to rebalance their relationship in new ways
• Abe who, after being Betty's primary caregiver for 30 years as multiple sclerosis stole more and more of her abilities, decided that he had to bring joy back into his life
• Francis and Ted, who discovered levels of intimacy and authentic communication they believe would not have been possible without the intrusion of her chronic pain condition
• Robin and Chuck, who used "active coping" to stay as close to "normal" as possible during his battle with cancer 

You'll also read the advice of a range of experts who offer many strategies for coping - emotionally and practically.  This new edition has an additional chapter for health care providers and health care organizations. Finally, strangely, for a book about such a serious subject, it's a good read.

So, if you know anyone going through this experience, or if you just want to help launch this important book, please pre-order the book on Amazon. If you like the book, I would greatly appreciate your writing a positive Amazon review. Here are some reviews that were written about the earlier version of this book.

Thank you for for anything you can do to help get the word out about Love in the Time of Chronic Illness.  The experience touches so many of us, and this book can really help.  If you can, please forward this email, and post on Facebook and Twitter. 

Does Illness Make You Wiser?

Does suffering make you wise, or just cranky? Does illness teach you to be more compassionate, or impatient?

I'd like to believe that one of the lessons my pain gave me is to appreciate the small things that are exquisite and to let the big things that are really small just flow over me, like a passing shadow.

And I'd especially like to believe that the love and care Richard showed me as he helped me every day is a gift I treasure and return every day.

The truth is a bit of everything, as it often is.

I am wiser for having suffered. I learned about what was hidden in the inner recesses, and I learned not to be afraid of that or of anything, except more pain. I learned to accept unconditional love and unselfish caretaking -- a harder task than I imagined it would be. And, most days, I do remember that nothing is life or death, except, well, life or death.

But I do sweat the small stuff. The neighbor's car parked too close to the driveway. The colleague who oversteps his bounds and acts like a jerk while thinking he is being magnanimous. Even the remote control that's out of synch with the TV and will change the channel or adjust the volume, but not do both.

And I get cranky and impatient with Richard when he steps around the bin of recycles instead of taking it out to the curb. Or when he reads a piece of my writing and corrects the grammar instead of telling me how elegant the concepts are. I do love and appreciate him even day - just not to the exclusion of getting annoyed at the small stuff.

I wish I were wiser and more compassionate. I keep trying. I guess illness gave me potential, and the rest is up to me now.

What have you learned from your illness?

Mothers and Pain

Richard and I have been visiting my mother in her assisted living community where she decided to move to six months after my father died.

The closer I am to her, physically and emotionally, the shorter is the fuse that leads to my pain. Propinquity = pain.

I have always been her reservoir, the pool into which her more sinister emotions drain. I am also her mirror -- having to reflect back to her what an excellent mother she is. Without the reservoir and the mirror, she tends to crumble and become either immobilized by inertia or explosive with rage.

I understand these dynamics. I try to hover above them, even as I act the part of good daughter. That distance, between the self I play and the self I am, becomes the fire that ignites the fuse that leads to my pain.

She is in pain, herself. She is also at a time of life when she is losing control over what used to be her privileges -- driving, taking medication, smoking. So now she experiences everything as a control issue -- our encouraging her to drink more than 4 ounces of fluid a day, to get out of bed at least by 3:00pm, to not screech at service people who are not giving her what she wants when she wants it. Her pain has also become her instrument for coercing others into giving her some control back. She throws her pain on the receptionist's counter at the doctor's office to have her appointment bumped ahead of others who are waiting. Her pain invites her to sleep until noon and take three naps during the day. Her pain gets her all the medication she wants, which along with Ensure, is her main sustenance.

What I am writing about her may come across as harsh. I don't mean it to be. I mean it to be a pretty accurate representation. And I no longer feel harsh as I describe her in this way. I feel great sadness and compassion. I appreciate that she is who she is, that we have an umbilical connection, that I react as I do and then need some time to recover.

Luckily Richard was with me on this visit. He was my anchor point and at times my protector. Looking at him while holding her hand helped me appreciate that I have a love she has never known, and am very grateful for that.

Now, back home, Richard and I once again accompany each other. And once again, he offers me sweet, real empathy as I do what I do to get my pain level back down. It really does make things better. It allows me to leave her in her life and cherish that mine is very different, better - and that's OK.

In what situations does your partner serve as your anchor point?

Not a Holiday Stress Article

I really don't like articles about dealing with holiday stress. You know them. The lists of: Top 10 Things You Can Do to Get Through the Holidays without Stress; Banish Holiday Stress Forever; and even the hyperbolically punctuated Holiday Stress!!!!!

Some advisers recommend the "be kind to yourself" approach. You know -- the 3M's: massage, meditation, and mood elevators (of the non-pharmaceutical kind, like music and pleasant aromas). A lot of the advice has to do with avoiding family confrontations while consuming excessive amounts of alcohol and sugar,which will not only create irreparable breaches, but leave you feeling like a lonely, bloated, self-loathing toad. Not bad advice -- but family breaches and that toad-like feeling can creep in no matter how hard you try. Holidays can be lightening rods for attracting old wounds, losses, grievances, and shame. And no "10 Tips" can prevent some debacles from happening.

Now, I acknowledge that there are probably many people who can get through the holidays without having to watch endless episodes of South Park or The Twilight Zone. There are probably many for whom the holidays are truly joyous and a time of family, friend, and neighbor good will. There are many principled people who get happiness from serving others during the holidays. I applaud all of you.

This year I really stepped into it. Not only do we have an endless stream of high calorie social engagements, but we are starting on some long overdue (by 30 years) home renovation. We are in the purging stage -- trying to recycle almost all our possessions: furniture, kitchenware, and all manner of assorted items that just fall into the stuff category.

The scenario is complicated by the fact that I'm a tosser and Richard is a keeper. I'm ready to heave into a dumpster unopened boxes that have been taking up prime basement real estate for decades. Richard needs to go through each box and resort items that either have sentimental value or some possible future use. I don't blame him....but it does make me a little crazy (and probably vice versa).

This year, I should have read a few of those holiday stress advice articles. I had a bit of a pain relapse; and I am annoyed with myself for not taking preventative measure (the 3 Ms) and for not being hardy enough to resist the firing up of those beastly pain neurons. So there's that nasty self-censuring voice working hard to get my attention, in competition with my attempts to get ahead of the pain curve before it really accelerates.

Richard can't go against his nature and purge faster. Nor can I totally extricate myself from holiday activities. But what Richard (my sweetie) does is remind me that this pain blip is not forever, and that it will never be as bad as it was before we had tools to control it. And he empathizes. He gives me love and compassion and rooibos tea.

That's the holiday spirit I want to receive and to give.

What are your holiday challenges and joys? And what does holiday spirit mean to you and your partner?

A Pain Flare Up

This week I had what many pain communities call a "flare up." My father is very ill and that tipped me over the line.

But that phrase, flare up, is too polite for me. I think a spike in pain deserves a more militant, aggressive, even violent nom de guerre. Because it is a guerre (French for war), after all. A fight in which pain plays dirty.

This enemy, pain, sneaks across my threshold, disguised at first as a wee bit of pressure. Then once it has positioned itself deep inside my core, it digs in and brings out its weapons.

It has long spears and axes, clubs and tiny daggers. It pounds and stabs in an irregular beat, which makes it unpredictable and dangerous. Soon the intervals between beatings diminishes. The pain becomes constant. Nowhere to hide.

Pain's most foul weapon is fear. Fear is the guerrilla warrior. It hides inside the pain, like a stealth poison, and then slowly infiltrates. It fills all the spaces pain does not reach. It latches onto the breath and grows with each inhalation. It squeezes the heart into a tight ball and fills the minds with images of a dark, bleak forever.

I despise pain; yet it is part of me. I want to wake up one day and find a note on my pillow from pain. The note says, "So long and thanks for the ride." Then I get to go back to a life of blissful ignorance where pain is a dying dream that some alternate version of me once had.

Well Spouse Caregivers: Do You Ever Say, "Enough!"

The piece below is one reader's comments to my blog post about back pain. I post it here because I think she not only raises a crucial question about the caregiver's responsibility, but she does so with great awareness, openness, and articulateness. And she is asking for support and advice. So please, if this piece speaks to you, help her out by sharing your experiences and ideas. (btw - she gave me permission to repost her comments here)


------------------------------------------------------------------------------
My husband and I have been married 18 years. He was in a car accident 12 years ago that left him with chronic back pain. After several surgeries he was left with a failed fusion. We seemed to muddle through our new life ok for a while. But as of late I see him diminishing so much mentally.

We have two children that he simply does not have the "energy to parent" and my emotional needs were put on the back burner many years ago. I have voiced all of this to him repeatedly over the last three years but nothing seems to have the status that his pain has in his life.

I am 38 and he has basically turned our bedroom into the extent of his accessible world. Recently he went past my limit and I had to ask him to leave. He has been living at another house for over a month. I just feel so empty of patience for him. I feel so uncomfortable about making him get out of his comfort zone. But at what point do you just give up when your partner can not or will not see past their own nose?

He is seeing a counselor and is on antidepressants since he left. He has always suffered from some level of depression but of course it is very severe at this time. He is upset with me that I am calling all the shots.

However when someone withdraws form life like he has, they force you into that position. You become the only one that is able to fill the car up with gas or make appointments or pay bills. Every aspect of life outside the house becomes your area.

I am wondering if between the medication, depression and pain (his counselor tells me that over time chronic pain patients brains can actually atrophy?) that he is just not capable of any husband responsibilities. And if that is the case what do you do with a man that is mobile but completely stagnant?

Is there anyone else out there on my side of the situation that has been married a long while still loves their spouse but is past lonely, past hurt, past frustrated? How are you dealing with it?

Relapse & Rebound

Well...I had to go way up on my meds. This recent pain relapse wasn't going to disappear with each out-breath of meditation or by visioning a river of healing blue water flowing through my body. I haven't been at this level of meds since I first developed my pain syndrome. Even though I feel grateful and lucky that the meds do work for me - I have to say, in all honesty, each step up, each time I spilled one more pill onto the pile, I felt a sense of defeat. I really don't want to be a person who is dependent on pills.

Richard is happy to have me back as a whole person rather than the whipped and broken puddle of a person I am when the pain takes over. He is glad for the gift of medication. I pinball from glad to mad to sad, and eventually let the medication ball drop into the gutter and get on with daily activities.

There is, I admit, a unique joy I feel when the pain recedes but is still close in memory; and the charm of daily routines is not yet faded by complacency and habit. In these moments I can feel delight in the mundane, and I can lean into that "glad to be alive" sense that only comes from having survived something terrible.

So I pour the pills onto my open hand, count each one, notice its size and color, toss them into my mouth, and send them on their journey with a big gulp of water and a sense of gratitude,... and resentment.

The Pill Game

Damn. Damn. Damn.

I had tapered down to a twice daily dose of smaller amounts of meds and was doing just fine. The kind of fine where I could start to take things for granted again. Things like looking at my watch to see if it's time to take afternoon meds. Like going out into the world without bringing a water bottle so that I would have something to help wash down my meds. Like eating spicy food and tomato sauce, and other trigger foods. Like paying attention to the explosion of wildflowers instead of signals of impending pain bursts.

Then the ripples began. Little spikey fish swimming around my insides. Then glass shards. Then water balloons filled to bursting. Nothing can be taken for granted in this state.

I tell Richard what's going on. Not that I need to. He can see the signs for himself. They're not subtle. I disappear, leaving a trail of pain crumbs for him to follow.

So I follow the instructions I have been given dozens of times. Don't play around with meds. Don't try to take one more blue pill for a few days and then stop to see if it worked. Then add the yellow pill and sprinkle a couple of brown ones here and there, for extra conrol, and color contrast. Then stop, start, stop, start. Don't do any of that.

Go back up to the pill regimen under which I last had the best pain control. And stay there. For at least a month, maybe longer.

So this time I remember the advice. I follow instructions. The pain recedes. I am filled with gratitude and resentment.

That's the way it goes.

When Pain Goes Away

For the past three days, Richard has had a smirk on his face. In general, he is a gentle soul, compassionate beyond the point where most people would be showing impatience, usually able to leap over fear and ego in a single bound. He does show moderate smugness -- especially when he is proven right about the time it takes to get to the airport during rush hour. But he rarely smirks.

This current smirk, is a combination of "I told you so" and "I am happy for you, and us." It's a smirk that follows the ending of a pain episode.

He knew, based on many similar episodes of past pain experiences, that getting to the right medication titration would eliminate the pain. I only knew the anxiety of all the untested "what ifs." What if this time is different? What if something else is wrong? What if it takes months or years, again? What if I can't work or write? What if we run out of rice cakes and almond butter (funnily the only thing I can eat when I have pain)?

He goes to Whole Foods and comes back with shopping bags overflowing with rice cakes and almond butter and reminds me, again, that this pain will stop. And it does.

The smirk of love.

Making Pain Go Away

Here's a word I never used in the before time -- titration. I knew its meaning, but it had no function in my pre-illness life. I didn't titrate how many eggs to put in a cheese omlette or how many gallons of gas I needed to make the drive from San Francisco to Mt. View. I just broke eggs and filled the tank.

For the past three weeks my attention has been riveted on titration. Determining how much to go up on which meds at what time intervals to get my pain back in control has been my mission. In the ole days, my mission might have included helping others. But pain makes its own decisions, and I become its loyal soldier. I follow where it leads, head down, tail tucked.

So I make an adjustment to the medication regimen and like a hawk scanning for prey, I scrutinize the meridians of my body for any evidence that this new combination of meds is reducing the ripples of pain. The outside world ceases to exist.

My pain specialist does guide me. But she also reminds me that pain is individual, and I just have to keep titrating until the cocktail works.

There's that word again. Titration. It has come to have a mythic quality about it.

I just want a recipe.

Richard, my voice of reason, reminds me that I will keep trying and I will get better - in a few days, maybe weeks - but not years, not like before. I try to hear him, but often I just can't. Pain is louder.

But I keep titrating. Two pills twice a day. Then three pills two times a day. Scan for a reduction in pain blips. No. OK then. Three pills three times a day. That's my limit. Not because I get impaired by side effects. Luckliy, I have none. But more meds than that and I cross some arbitrary line that exists only in my mind. The too-many-pills line.

Pain and I eventually come to an agreement. This level of medication for my life back.

I take the deal. Gratefully

When Pain Returns

These have been rough times. For the past six weeks, I've been feeling ripples of the old pain coming back. They usually slide around at a level 3 or 4, which means I can still follow a conversation and drive by myself. On some days they crescendo to a 7 or 8, which means I lay very still and try to make myself as small as possible, as if by doing so I can corral the pain into a narrower orbit.

Each day I wake up with the fervent belief that today will be the turning point. By late afternoon, I'm looking at my array of medications and debating whether I should take them in order of potency or just chug them down like a drunk doing shots. Pain will do that to you.

Richard so easily slips back into sage caretaker mode. We have been on this ride so many times that he automatically knows how to balance intrusion and distance. He also know how to ask to be invited to enter my orbit of pain, rather than clumsily assault me with volleys of helpfulness.

He will say, "Can I sit with you now or do you want to be alone?" "Do you want my help to problem solve about medication or do you want me to stay out of it?" "How do you want me to tell you if I think you are making a mistake?" And most of all, "How can I help you, my love?"

His presence, his questions anchor me to possibility, to choices that point to a realm beyond the pain. He can't actively stop me, but his steadfastness deters me from plunging into the vortex, which is always a pain spike away.

These have been rough times. But at least I am measuring this experience by time and not by eternity. I do now know that I will be helped, and I will, thankfully, find the next path out of pain.

The Pain-Panic Syndrome

The combination of pain medication, energy work, yoga, emotional renovation, and HBO has helped me to manage my pain so that, most days, I act and feel like a normal.

But some days, the pain resurrects. What starts as a slow ache in my lower abdomen in the morning can escalate into a of herd of wild stallions stampeding through my body by mid-afternoon. This explosion of pain can be catalyzed by an argument with my sweetie, worry about my parents' health, a change in the weather, a freak anomaly in the space-time continuum, a butterfly flapping its wings in China -- in other words, "Who knows?"

Because I, gratefully, have so many good days now, the first signals of a pain spike are enough to launch me into panic mode. I forget how many years I have dedicated to learning how to move beyond pain, to attach my consciousness to something bigger than my own measly ego, to use my mind to meditate the pain into a blue wave that flows out of my body with each breath. I forget that I have an arsenal of medications I can combine into a giant hammer that can slam any pain spike into oblivion. I forget that the pain comes, and it goes, and that it will never be as wild and uncontrolled as it was in the first years of hell.

Of course, panicking over pain only feeds it. When I panic, I constrict my muscles and my mind so the space I create around the pain is tight and tiny; and therefore every thrust of the pain is that much sharper and always hits its target.

Here's what helps when the reminder of pain starts to set off a full blown panic-pain attack.

I try to breathe consciously. To follow the path of my breath as it swells and ebbs instead of focusing on the ripples of pain. I move my breath to those places where pain grips, and I watch as each breath pries pain's fingers looser and looser.

I remind myself that -- "This is now and then was then." That this pain episode may last hours, all day, even a couple of days -- but not years. There will never again be years of relentless suffering. I am better now. And I have tools now that I could not have imagined then.

And I ask for help. I ask my sweetie to remind me of the truth I try to hold onto -- the truth that the panic makes me forget. He tells me, "This will pass. Don't worry. You know it will. Now, let's see what's on HBO."

Chronic Pain & Couples: Learning to Find Each Other in the Shadows

coryphella on flickr

For couples, when illness lingers and turns our path towards a dark unknown, we start to become shadows to each other.

The present is too often a fragmented reflection of what used to be. The invitations we can't accept, the activities we can't do, the conversations we don't want to be part of are reminders of a brighter time in our life that now stands in the shadow of illness. When I was living with uncontrolled pain, my days were consumed in attempts to stay just a few inches ahead of the next spike. A sunny morning, the aroma of coffee, or a good book, had no meaning. Cheery news from a friend was almost unbearable.

As I moved farther away from life, into the shadows of illness, I drifted to a realm where Richard could not follow. He could watch and reach out towards me, but he could not enter. He didn't have the right ticket, and I had no return.

We started becoming shadows to each other, our vitality dimmed by all those sweet things we could no longer hold onto. When he looked at my face he saw the gray mask of illness. My eyes no longer focused on the world and only offered him flashes of someone he once knew. Every time he left the house to go to work or the gym or have dinner with a friend, I felt relief at his remaining connected to normalcy; but each venture broadened the shadowland that was growing between us.

I think had we not had such a long history together, and had we not already learned to face one another and speak the hardest truths, we would have lost each other. The shadows would have eventually rendered us unrecognizable.

How did we learn to keep finding each other?

We never learned to dispel the shadows, but we found ways of creating new venues where we could see each other more clearly. Places that had no ties to our earlier times and were therefore immune to a gathering of shadows.

We learned to sit in silence together. Our old life was one of activity. Now, in silence, we could slow down enough to feel something essential for each other, something that endured.

We discovered the small things that gave us comfort. Our old life was about big things -- vacations, climbing mountains, work achievements. Now Richard stroked my hair and read aloud Jane Austin or Tolkien. When I prepared the colorless, bland foods I could eat, I offered him some. When he was at work, he texted me to let me know he was thinking of me and hoping I was having an ok day. I texted him to let him know when I had good moments. On Sunday nights at 9:00pm, no matter how uncomfortable I was, we watched the Sopranos.

We spoke about our fears of losing each other. And each time we did, naming the fear diminshed it.

We learned to build bridges to each other, above the shadows.

The Two Sides of Back Pain

I did too ambitious a plow pose in yoga class today, and heard my back make a suspicious popping sound. When I rolled out of the position, I couldn't sit up straight. Bent over like a crone with a cane, I inched my way to my car and made it home. I have been icing my back and crunching Advil for the last few hours.

My reaction to my body failing in any way is so convoluted since the peak days of suffering with a pain condition. On the one hand, I want to shout, "I've paid my dues. I earned a lifetime get-out-of-pain card. Pass me by and give that 20 year old in purple spandex a broken finger nail instead.

On the other hand, it's a bit delicious to have a normal person's ailment. Something with a known cause, a clear treatment, and most importantly, an end date. I'm seeing my chiropractor tomorrow and expect to be down-dogging again by the weekend.

Pain as Art

I stumbled upon an article in the Health section of today's New York Times that described a unique, online art exhibit.

Mark Collen, 47, is a former insurance salesman who suffers from chronic back pain. San Francisco college student James Gregory, 21, suffers from chronic pain as the result of a car accident. The two created the Pain Exhibit, an online gallery of art from pain sufferers.


The categories pain art falls into include Torture, Imprisonment, Loss of Faith, Fear, Hope, Love, Transformation, and Acceptance. That about covers the spectrum. Each image is comes along with an artist statement that describes his or her pain condition and the personal meaning of the image.

As you might expect, many of the images are hard to look at and evoke in the viewer a shiver of mortality and fear. It is too horrible and too intimate to get this close to another's pain, even if you're suffering with your own.

Eye of the Storm portrays the both the agony and the terrible loneliness of a migraine sufferer. Do You See What I Feel? shows that for many, pain doesn't show on the outside. So sufferers may appear normal, and be treated as normal, while experiencing a steady pounding of pain internally. Trapped in Hell is very hard to look at. It captures the desperation of a sufferer who can't bear the pain one more second, yet can never escape from his own body.

There are people who are forced to endure terrible conditions -- torture, from within and from the outside, inflicted by biology, by government, by neighbor. Those of us who have found some pathways out of this hell, and those of us who are lucky enough to have never visited there yet must bear witness.

That's the least we can do.

A Chronic Pain Game

When I was a child, my girl-friends and I would play a game we called "Senses." We each had to pick one of the five senses we thought we could live without.

Most often, smell was the sense that we decided could be disappeared with little consequence. It was unthinkable to lose sight. Without hearing we wouldn't be able to listen to the Beatles. Without taste, we wouldn't be able to enjoy ice cream. Losing touch was incomprehensible. So we usually opted for smell.

Not a particularly compelling game, I admit. No prizes or victories involved. Just a familiar conversation that rolled over the same terrain and landed at the same finish line each time.

I think we used it as a way of lightly touching something truly alarming without risking serious consequences. Like passing your finger quickly though the flame of a burning candle. We converted something horrible into a game we could control, and thereby magically turned what might be fate into a free choice.

Fast forward four decades.

When I finally realized that my chronic pain was not casual and would not go away despite my doctors' best efforts and my many prayers and tears, I panicked. Richard (my sweetie) and I began hunting down medical specialists and alternative practitioners. Sometimes I had 4 or 5 appointments a week.

It was during this period of frenzied activity that I began to resurrect the Senses game, but with a twist. This time instead of asking, "What sense could I live without?" I asked myself, "Which would I rather have -- this physical pain or severe depression?" "Pain or lung cancer?" "Pain or dementia?" "Pain or macular degeneration?"

More often than not, especially if I was in the thick of a hammering pain episode, I preferred to be stricken with the other disease. But the important thing this game offered me was a way to insert a mental space between me and the pain. This game, like Senses, positioned pain as a choice, not a fate.

Not that I could just choose to not be in pain. I tried that..... a lot. It never worked. But, if I could place pain in a context of choice , I was moving pain outside of my body, for just a moment. I was contemplating pain rather than being pain.

I know this is getting kind of existential - the difference between being pain and having pain. But pain had taken over not just my body, but my every thought and breath. When I wasn't in pain, I anticipated being in pain. This game placed pain and me in a different kind of relationship. I was apart from pain, making judgments about it.

To drive this tiny, imaginary, even foolish wedge between me and pain was a start. From there, over time, I began to imagine even greater distances between us. I began to meditate and focused on condensing pain into a smaller and smaller ball. I concentrated on my feet or hands, places pain never reached. I imagined healing waves of blue water flowing though my body, carry bits of pain away with each new surge.

The more distance I could put between me and pain, the more I felt that my life was returning to me.

A Patient's Perspective on a First Visit with a New Doctor

Some doctors know how to connect with a patient right from the start. They not only offer excellent care, but also hope. And, unfortunately, some don't........

The first pain management clinic I went to, in June 2000, in a major urban university affiliated teaching hospital, was overcrowded and dingy. The olive walls of the waiting area contrasted harshly with the orange plastic chairs that circled the room. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. The crescendo of pain in that room was still rising as I was called in to see my specialist.

Dr. S. was a small woman, dressed in a lab coat that reached below her knees. She radiated a harried efficiency. She acknowledged me with a brief flash of eye contact and an accompanying head nod and then asked her resident to describe my symptoms. As he spoke the words I had given him fifteen minutes earlier, she poked at me like a fish monger checking the freshness of a slab of salmon. All the while she concentrated more on instructing her resident than on connecting with me.

She was soon ready to declare that I had a neuropathic pain syndrome and to prescribe more medication. For me, calling my pain “neuropathic” was like my dermatologist naming a rash I once had on my arm “dermatitis.” She didn’t provide any real illumination; she merely described what was, in medical language.

I had many more questions to ask her, but she kept looking at her watch and telling me we could discuss them at the follow up appointment when we would be able to discern if the medications were helping. She kept edging toward the door. I tried to lasso her in place by tossing out more questions. With a final flourish of her watch she bolted through the exit. As a parting gesture, she explained that the department administration only allotted her fifteen minutes per patient, and she had already used up her quota and any reserve minutes.

For her, I was a petri dish to which she was adding some mold to see what might grow.

An Essential Question

I recently read a study about the "widow effect," a curious but very real phenomenon that doctors have long been aware of. When a husband or wife dies, there's a greater likelihood that the surviving spouse will pass away soon afterward. It is not hard to imagine that when two lives have been intertwined for a long time, the surviving partner loses not only the emotional will to live, but also the daily habits of self care. For some, grief trumps survival.

However, my thoughts turned in another direction after reading this study. I thought about the "death in life" that some caretakers of partners with long term debilitating illness speak about as their world slowly shrinks to fit within the dimensions of the sick room. Caretakers I have talked to poignantly describe the impact it has when partner turns into patient and caresses get exchanged for sponge baths, lively conversation for medical updates, and future dreams for waking nightmares.

How does the caretaker not only juggle daily practicalities -- shopping, chauffeuring, working, finances, child care -- but also deal with the snarl of conflicting emotions? Cherishing the memory, hating the reality; yearning for release, fearing further deterioration; love and obligation; commitment and escape; loneliness and guilt.

When I was at my worst, housebound with my daily battle with pain, Richard (my partner and caretaker) and I, both exhausted from the struggle to carry on, would sometimes just sit together in silence . There was nothing more we could do and nothing left to be said. In silence, when the words we hurled at our fears ran dry, we could feel a connection, one that survived in a calmer universe where pain had lesser authority. For a moment, my caretaker could suspend his vigilance, and I could feel whole.

We ricocheted between this silence and frenzied, fear-saturated conversations that consisted of endless questions we kept firing into the unknown in the hope that one would reveal a promising direction. What medication should I try? What specialist should I see next - an orthopedist, an immunologist, another neurologist, a gynecologist, a uro-gynecologist? Should I try acupuncture again, or maybe massage?

One day, following one of these silent respites, we stumbled upon an essential question. We asked, "What is the most important thing we can do for each other?"

Our answers rose to the top of the emotional heap in an instant. I wanted Richard to tell me that he had faith that I would recover. He wanted me to let him know whenever I felt even the slightest relief from the pain.

This was a way to swaddle our terrible fear in love and reassurance, and quiet it, for a while. So much was beyond our control, but this we could do for each other, happily, easily. This was a new beginning for us. It made the load we each carried a little bit lighter.

February Pain-Blog Carnival is Up at How to Cope With Pain

This is a fairly new blog carnival that focuses on pieces about pain, illness, and strategies for coping. Have a look at this month's posts (including one of mine).

What do Presidents' Day Weekend and Science Fiction Films Have in Common?

When Richard and I first started dating, he forewarned me that he would never be available on Presidents' Day weekend. That is his one inviolate, sacred holiday. Not because he honors those particular presidents, but because that is when the annual twenty-four hour science fiction film festival takes place - from Sunday noon to Monday noon. Yes 24 hours in a dark theater watching sci-fi films from silent 1920's movies like the Russian film Aelita: Queen of Mars, to 1950's Red Menace sub-plot movies like Invasion of the Body Snatchers, to 1960's trippy movies like 2001; A Space Odyssey, to 1970's favorites like Close Encounters of the Third Kind and Star Wars; to new releases like Cloverfield.

For several years I wheedled and enticed and whined to try to shift Richard towards abandoning this silly practice and to spending a three day weekend with me in some quaint Vermont inn. He was immovable. I finally decided that the only way I could understand his devotion was to experience it for myself. That way I would be able to mock it more knowledgeably.

I got hooked. For the next fifteen years, I sat by his side amidst a crowd of antennae wearing, ray gun zapping humanoids sitting in the dark for 24 hours as the films rolled on and on. And while I don't love sci-fi films, I do enjoy the view they offer into an era's perspective on the future, on values, relationships, politics, and the enemy. And I do love the ritual of it all.

I stopped going to the festival ten years ago when I first got whacked with a chronic pain condition. This was one of many losses that stood as a marker for how much pain was taking from my life.

This year, on President's Day weekend, I went to the sci-fi film marathon and stayed for the entire twenty-four hours. In fact, I am writing this posting in the immediate dazed, achy, sleep deprived afterglow. I did have some ripples of pain during the marathon, but more importantly, I was back in the saddle (or the very uncomfortable theater seat), next to my sweetie, holding his hand, munching on carrot sticks, and happily traveling to a "galaxy far, far away."