Gender Bias Downunder

By: Cynthia Toussaint, Founder, For Grace

January 29th, 2009 • 1 Comment

My partner John and I recently enjoyed a beautiful three-week getaway in New Zealand and Sydney.  Travel used to be so scary, but as I fly longer and longer distances, it’s an absolute joy and adventure discovering different lands and people.  In fact, it’s one of our top priorities.

One beautiful morning in Sydney’s Circular Quay, we boarded a ferry to see the zoo.  I immediately noticed a woman using a crutch, joining us with difficulty.  I thought “Good for you.  You’re one tough, spunky lady being a tourist with a disability.” 

In my wheelchair, I was already aware that Sydney was not nearly as accessible as New Zealand or say Europe – which came as a surprise. Then as the ferry departed and the harbour opened up to amazing views, I forgot about everything including my fellow mobility-impaired traveler.

The zoo was amazing.  You have to start at the top and work your way down, as it’s built on a breath-taking hillside – and all the while the Sydney skyline was in view. Paradise for sure.

I have to admit, I have a thing for kangaroos, and before long, I found myself amidst them in a unique exhibit that allows you to stroll – or roll – in their habitat.  Even petting them as they hop by.

There she was again!  My crutch-toting sister adventurer. We caught each other’s smiles and got into a conversation about the kangaroos and emus (her favorite).  Before long, she asked me why I was in a wheelchair. 

Not being in a spokespersons role, I made it brief (so unlike me):  “I was a ballerina and 26 years ago a ballet injury triggered a chronic pain disease in my body.”  And that, I thought, was that. 

She asked me what the disease was called.  “It used to be called Reflex Sympathetic Dystrophy.”  She responded with eyes widening, “I have CRPS!”  She then immediately shared clever anecdotes about how male physicians – and most everyone – disbelieved her due to her gender. 

John and I practically fell over into a pile of emu poop.  We were hearing first-hand the gender disparity half way across the globe. 

Due to the recent world awareness of CRPS, my new friend, Lynne, had been diagnosed and treated early.  She was going to be O-kay.  But she still wasn’t believed by most everyone.  We shared healthcare battle stories and talked much about the work at For Grace that is bringing the gender pain divide to light. 

She told me of the humor she’s armed herself with to deflect the abuse of disbelievers.  With her tight, British accent, she mocked herself, exclaiming, “You’re right!  I’m just an attention seeker.” 

That killed me.  How clever to turn the absurdity on the abuser. And she reported that no one had anything further to say after that retort.  Thinking that we Americans cornered the market on sass, it was an eye-opener to discover women all over this globe can stand up for themselves.

John and I spent two glorious hours bonding with beautiful Lynne, her 13-going-on-34 year old daughter (due to the stress of caregiving), and their Australian friend who insisted that we come back and let him tour us through the Outback.  Nice, nice people, those Aussies.

Obviously, being dismissed and discounted as a woman in pain has no borders.  At For Grace, we hear from women all over the world who make this known to us – but the global problem hit me on a profoundly personal level that beautiful day among the kangaroos.  Thank you, Lynne.

Cynthia Toussaint is the founder of For Grace, a nonprofit organization raising awareness about gender bias in treating chronic pain. As a leading advocate for health care reform in California, she has been featured in media including The New York Times, The Los Angeles Times, Public Broadcasting System (PBS), and National Public Radio (NPR). Cynthia has Reflex Sympathetic Dystrophy and fibromyalgia. Prior to her illness, she was a professional dancer, actor and singer.

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The Starting Point of Living with Chronic Pain

By: Loolwa Khazzoom, Founder, Dancing with Pain

January 29th, 2009 • Leave a Comment

I loved life.  I still love life, but I can’t physically throw myself into it the way I used to.  For now.  I do plan on returning, or rather, moving forward into that state of total engagement.  But at the moment, my spirit cannot manifest my essence through my body.  My body is a shadow of who I am.

I always talk about the car crash in October 1997 as the turning point, but who knows when it started.  Maybe the trigger point was in August 1994, when I was playing tackle frisbee with a gaggle of guys.  Okay, to be more accurate, they were playing frisbee, and I was tackling them.

I was a very physical person.  When I was a kid, I loved wrestling.  I was plenty confused and saddened when, at age 11, my mother informed me I could no longer wrestle, because I was a girl.  I made up for lost time in my adult life, however, turning pretty much any sport — even basketball, were I would lose points for it — into a tackle match.

Oh yeah.  And I was always into physically out-powering guys. You could say I was born a radical feminist on a mission to add a new dimension to the women’s movement.

So back to the frisbee game: During one tackle, I fell backwards and landed on my tailbone.  A couple of days later, I had trouble walking — I was limping.  I went to the doctor at the local clinic and was told that I had hit a nerve, but that I would be fine in a week.  I was also told to see a doctor for follow-up when I got back home.  (I had been out of town at a conference when the incident happened.)

I don’t think I ever went to the doctor.  Even back then, I thought doctors were generally useless.  And why should I follow up, being that I felt fine after a few days? Sometime after that, I think months later, I would be on a five or six mile jog, when suddenly, my leg would go out, and I would have to limp home.

It happened randomly and only occasionally.  I have a vague sense that I went to the doctor and was told that I was fine — which translates into “they couldn’t find anything.” Regardless, I do clearly remember feeling frustrated that I didn’t know what was going on.

That continued for about a year.  Then in December 1995, I woke up one day with excruciating hip pain on my right side.  I figured it was stress-related, as I was by then pretty miserable at my job.  But even after I quit, the hip pain didn’t.  If I wasn’t totally convinced by then that doctors were completely incompetent, I was about to be schooled in that train of thought.

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Telling My Story

By: Loolwa Khazzoom, Founder, Dancing with Pain

January 29th, 2009 • 1 Comment

One of the reasons I started my blog was to release to the universe the story about what happened to me — how I went from being able to bounce out of bed in the morning, backpack around the world, and engage in full-contact self defense… to being in constant pain, barely able to walk for years, and still cautious about doing so much as shaking someone’s hand.

I’ve found that I’ve been shut down around this process of writing my story, however.  For starters, I have encountered so much judgment and condemnation along the way of my healing path.  It’s the classic story of how people who encounter trauma are then somehow blamed for that trauma.  It seems easier to point a finger at one individual than to question an entire system.  I just couldn’t deal with any more of that negativity.

I also got confused about the reason for my blog. To a certain extent, I got externally focused — caught up in social networking, search engine optimization, and tracking the number of readers.  While the world of blogging is an exciting world in and of itself, I’m not engaged in it so as to have a super successful site.  I’m engaged in it because writing is catharsis, and I am on a mission to heal myself in every possible dimension.

So here I go.

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Natural Pain Relief While Traveling

By: Loolwa Khazzoom, Founder, Dancing with Pain

January 12th, 2009 • 1 Comment

Traveling can be a royal pain for those of us in, well, pain.  Here are my 10 tips on natural pain relief while traveling — based on what has helped reduce the struggle for me:

1. If you can afford it, stay at a nice hotel. I find that the money I save on cheap hotels or youth hostels is not worth the suffering I endure from the noise, the poor bedding, and the lack of amenities that make life easier. In addition, I find that the surprise factor of staying at someone’s house can end up working against my special needs, leaving me miserable.

2. Leave adventure for something other than your lodgings. Chain hotels are ideal for those of us in pain. Once you find a hotel that has a system that works for you, stick with it wherever you travel. If you stay at the same hotel every time, and/or use their credit card for your daily purchases, you can rack up points and earn free nights. Also, if you enroll in their special deals programs, you will get notice of special rates at hotel locations across the country.

3. Wherever you plan to stay, call ahead of time to make sure that the place you’re staying has a firm bed. If you find that it doesn’t, do your best to find another place to stay. I find that the Marriott has decent beds, as well as all the amenities I need, so that’s my hotel of choice. (I once stayed at the Sheraton and was delighted to discover that it had a perfect orthopedic bed that made for a delicious sleep. Unfortunately, I also discovered that it had bedbugs, and I was bitten in 48 places that took shy of three months to heal!)

4. Pack a camping mat with an egg-carton pattern. Put this mat on top of the mattress and underneath the bedding, to enhance the orthopedic support when you sleep on a less-than-perfect bed away from home.

5. Call ahead of time to arrange for a mini fridge and freezer to be put in your room. Often hotels will provide this appliance upon request, sometimes for a fee. It will enable you to store special foods and ice packs, which — if you’re like me — you use as part of your natural pain relief regiment. If the hotel will not bring a refrigerator/freezer to your room, ask if you can store your food or ice packs in theirs.

6. If you do use nutrition as a part of your natural pain relief regimen, call ahead of time to find out where there is a health food store in the area. Buy items when you arrive, instead of packing them, to keep your luggage light.

7. Call ahead of time to find out if the hotel has a gym, and if so, what equipment and weights they have available. If they do not have a gym, or if they do not have what you need to keep your pain levels down, find out where the nearest gym is. This is one reason why it’s great to belong to a gym with a chain throughout the United States: Wherever you go, you’ll have access.

8. Pack a small ice bag in your carry-on luggage. If you have a pain flareup on the flight, ask the flight attendant to fill your bag with ice. That way you won’t need to request a leaky plastic impromptu ice bag instead.

9. If you have an iPod, or if you’re bringing your computer, be sure to download guided imagery CDs, meditation CDs, audio books on self-healing, and any other tracks you can listen to while traveling — to help keep your pain levels down. Alternately, see if the place you’re staying has a CD player, and if it does, bring along these CDs.

10. As far as I know, airports do not have special assistance other than for people who need wheelchairs. So if you need help with your bags; if standing in a long line exacerbates your pain levels; or if you need help making it from one side of the airport to the other, call ahead of time to arrange for wheelchair assistance.

Just be sure to make a point of asking the wheelchair attendant to be very careful that there is always extra space around your feet, as s/he pushes the chair through the airport.  I have found that without giving a heads-up, attendants can be clumsy and bang me into people or bags — which can leave me in pain for days.  Also, if your body is hypersensitive, let the attendant know where not to touch you, so that they don’t end up giving you a friendly pat on the back or squeeze on the shoulder that puts you in agony!

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Coping with the Psychotic Side Effects of Narcotic Pain Medications

By: Loolwa Khazzoom, Founder, Dancing with Pain

January 4th, 2009 • 1 Comment

The last week has been extremely intense.  I’ve been working my ass off bringing my mother back from Crazy Land, following the psychotic side effects of her narcotic pain medications. Here’s the scoop:

My mom was doing very well for about a week.  Though she was not yet at “baseline” – i.e., her normal self – her personality was back to a certain extent; and she was able to communicate.  Then last Friday morning, she crashed.  Hard. 

It started off with her being completely out of it in the morning. When I asked the nurse about the cause, I was informed that my mother had been given double the dose of Oxi-something-or-other, a narcotic pain medication.  My mother had been complaining that the 5 mg she’d been receiving was not enough to alleviate the excruciating pain in her left leg, so they had given her 10 mg.

By the time I called my mother on Friday evening, expecting to light Hanukkah candles with her, she was crying and screaming hysterically about how, any minute now, the hospital staff was going to murder her.  She wouldn’t even let me get off the phone to call the nurse, because as soon as I would hang up the phone, they would kill her.

It was clear to me that my mother was having yet another psychotic reaction to her pain medications. I’d been through the whole they’re-going-to-kill-me-immediately episode numerous times, while my mother was on Vicodin.  In fact, that’s why, at my behest, they had switched her to this new med.

I had been planning to come up to the Bay Area on Sunday night, to stay for a week and take care of the million administrative things that needed to be done in my mother’s life. My inclination therefore was to spend the weekend at home, so that I could get all of my things done first and leave emotionally grounded. 

But my mother sounded so desperate and frightened that I decided to drop everything and race to the airport, to catch the last flight out to San Francisco.  I usually drive myself to the airport, park, and take a shuttle, but I knew there was no time. 

I called a friend and asked for a lift. Little did I know that he had been in the middle of Shabbat dinner at a friend’s house. G-d bless him, all he said to me was, “I’ll be right there.”

We tore down the freeway and made it to the airport in time for my flight.  Then, 15 minutes before boarding, when I was sitting at the gate, I realized that I had not checked whether I’d turned off my coffeemaker.  Damn thing is a cheap $15 contraption from Walgreens and doesn’t turn off automatically.

I called my mom, to gauge the situation and see if she’d calmed down. She hadn’t. She was desperate, going on and on about how she’d be dead within a few hours, but it was OK; I should go on with my life; she’s old anyhow.

Oh yeah, and how could I possibly even think about going back for the coffee maker at a time like this, but never mind. I should take good care of myself and not bother coming the next day, because she’d be dead.

I lost it. I had a total meltdown in the middle of the airport, crying hysterically. Which crisis should I avert? My mom’s paranoid delusions or my apartment building burning to the ground? Ultimately, nerves shot to hell, I chose to put my bags on hold at the San Francisco airport (they’d been sent on an earlier flight) and take a cab back home.

The coffee maker was off.

I called the hospital in the middle of the night and again at 5:00 am, to make sure my mom was OK. By 10:00 am, I was physically ill from the whole episode. When I called to speak with my mom, she was pissed about my purported neglect.

“You promised you’d come in the morning,” she accused me bitterly, then proceeded to ramble on and on and on about how I needed to come immediately; how she wasn’t eating or taking her meds; and how everyone was going to kill her.

Something deep inside me took over. “Mommy!” I commanded her. “Pull yourself together. I am coming tonight. I am physically sick from all the drama last night, and I am spending the day getting well. Period, end of issue. In the meantime, you need to get it together and take care of yourself. Eat your food, take your meds, and I will see you tonight.”

Silence. “Okay,” my mom answered.

I spent the day at the beach, pulling my own damn self together. Then I went to the gym to swim, take a dip in the jacuzzi, and relax in the steam room. At 10:30 pm, tired but grounded, I arrived in San Francisco and drove to the hospital.

When I entered my mother’s room, expecting to comfort her, my mother began screaming hysterically that I had to get out. The hospital staff was plotting to kill me, and I was in terrible danger.

“Listen lady,” I said to my mom in a playfully stern tone, “You just hauled my ass from Southern California to protect you. You’re stuck with me now, so get used to it.”

The next two days went pretty much the same: I’d get an hysterical, emergency phone call about my mother’s imminent death at the hands of the evil hospital conspiracy participants. I’d arrive at the hospital, and my mother would begin hollering at me to run for my life.

If I stayed, she was insane with anxiety. If I left, she was insane with anxiety. I felt like a rattled ping pong ball in a game from hell.

Meanwhile, I was instructing the medical staff to decrease the dose of my mom’s pain medications – thereby sending my mom into an hysterical fit about how her touchy-feely, crunchy-granola, anti-drug daughter was poisoning the minds of the nurses who already were giving her insufficient pain medication.

How could I make her suffer so much, she asked. Did I have no idea of what it was like to be in pain? Oh yes, of course I did, so even more so, how could I inflict this suffering on her?

I also was busy requesting a psychiatric evaluation and arranging a strategic discussion with the psychiatrist. When we finally spoke, the psychiatrist suggested giving my mother a psychotropic drug to stop the hallucinations. There was, however, a slight chance that the drug would give my mom a stroke.

No f***ing way. I told the psychiatrist that I wanted to leave that route as a last-ditch emergency option. Instead, I either wanted to keep my mom’s dosage of narcotic pain meds low, to switch her narcotic pain meds to a different brand, or to get her off narcotics altogether. I also wanted to implement holistic measures such as getting my mom outdoors for some fresh air and getting her involved in artwork again.

The psychiatrist agreed with my plan and promised not to prescribe any risky treatments without first consulting with me.

My mom became increasingly incensed about how I was “being so bossy” (for doing things like insisting on cleaning her poop- and piss-drenched comforter), how I wasn’t listening to her (as I was asking questions of clarification during her incoherent rants), and how I was causing her more anxiety than anything else (by being in the hospital and therefore putting myself in danger of the grand murderous plot). 

Every minute I was with her, she was cranky, anxious, bitchy, and even violent — scrunching up her face in fury and grabbing or throwing things at me. Meanwhile almost every waking hour of mine was spent in service to some aspect of my mom’s needs.

On the verge of losing it completely, I called my mom’s best friend and had a long conversation about what was going on. “You can’t let your mom make decisions about whether you’re going to visit her or not,” this friend said. “She’s out of her mind right now.  You need to be the one making decisions, whether she likes it or not.”

Right.

So I went to an art store and bought a million cognitive- and hospital-friendly art supplies (air-drying clay, glitter paint pens, beads with big fat holes…) Armed with two shopping bags and an attitude that I was taking charge of the energy field, I arrived at my mom’s side on the third day. She was sitting in her wheelchair, near the bed, her whole body sunken. “Mommy,” I announced, ”We’re going to have fun today.”

My mom agreed to let me take her outside to the patio that day, and she kept her bitching down. A little. We also spent about an hour hanging out, me playing with all her art supplies, her looking at them out of the corner of her eye.

That relaxed time was when I figured out another source of my mother’s delusions: As nurses spoke with other patients, and as the televisions in the three roommates’ areas blared, my mother mentioned how everyone was lying about and plotting against her.

The proverbial lightbulb went off. “Mommy,” I said, “You’re sharing the room with three other people. The nurses aren’t talking to you. They are talking with those patients. You’re only hearing snippets of their conversations, because the surgery messed up your hearing. Also, the television has violent dialogue going on. I think you’re putting all those things together in your mind, and you’re left thinking there is a conspiracy against you.”

After three rounds of confirming with the nurses that they were talking with someone else, and asking what they had said, my mom went, “Oh.” And that was the end of the paranoid fantasies.

It took a few more days for my mom to warm up to the idea of doing artwork, but today she let me wheel her to the room down the hall, where there is a big table. I put out all the art supplies, and my mom played with clay and paint, while I drew with colored pencils. It was the first time I had fun with her all week.

Then she kicked me out of her room in hysterics about my going outside late at night (ie, after 7 pm), but what can you do. One hurdle at a time.

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