Thursday, February 26, 2015

When Patient Becomes Caregiver

It was bound to happen at some point. You don’t prepare for it—you never do. But when my wife Laura was told the newly discovered lump in her breast was growing quickly and needed to be removed immediately, our roles as patient and caregiver were violently upended. Funny, I recently was featured on WebMD talking about, of all things, the importance of caregivers. Now, without warning, I was forced to become one. Gulp.

Breast cancer runs in Laura’s family. Her grandmother was diagnosed with it in her 40s. Her wonderful mother tragically passed away from it at the age of 66. This was no joke. And that was a problem. As I mentally cataloged all of my potential skills as a caregiver, which took all of a few seconds, I concluded that my greatest caregiving asset was… humor. Jeezo.

I wasn’t going to relieve the stress of her lumpectomy surgery with lame bosom jokes (What did one boob say to the other boob? You are my breast friend. Groan.) Physical humor was out, too, because if I accidentally hurt myself joking around—something I am quite capable of—Laura surely would assign me the task of purchasing a doghouse… when we don’t have a dog. (At which point, I probably would have brought up some silly trivia about the phrase “in the doghouse” and how it was a type of sleeping shelter on an old sailing ship that was notoriously uncomfortable. And then I’d pick out sheets that matched the living room couch and make myself comfortable.)

Fortunately I discovered my caregiving skillset was deeper than I anticipated. Maybe not so much in the physical sense—other than rewrapping her dressings and getting the occasional glass of water—but I could support her in so many other ways. And yes, I did manage to make her smile without getting into too much trouble, although getting her to agree to be photographed prior to surgery was a bit of a stretch.

How did it all go? Swimmingly. My biggest challenge as caregiver was making sure I didn’t fall onto her needle-prepped chest kissing her good luck before the surgery. From there things just got easier. Her recovery was swift and she was a perfect patient. Ah, but of course—she must have learned from the best! Please note that previous sentence drips of sarcasm.

And the tumor? Benign. It feels so good to breathe again.

Thursday, February 12, 2015

Perils of Furniture Surfing

If you’ve ever had walking issues due to multiple sclerosis, you are bound to have experience in the sport of surfing, specifically furniture/wall/appliance surfing. One engages in said sport by eschewing practical walking aids—a cane, a walker, forearm crutches, etc.—in favor ricocheting off of solid objects in one’s home.

Here’s how it works. Say you decide you want another beer … yet you find yourself sitting on the couch eating Cheetos while cursing your wonky legs. “I hate you, wonky legs,” you mutter (with or without expletives). Then for reasons unknown, you opt to step over your cane—conveniently resting aside the couch—to channel legendary surfer Kelly Slater. Off to the kitchen you go! Couch armrest to end table to wingback chair to family room wall to fireplace mantle to dining room wall to dining room chair to dining room table to kitchen wall to pantry doorknob to countertop to sink (nice hand holds!) back to countertop, and then finally to refrigerator handles. Cowabunga! You just rode that barrel and exited the green room unscathed! Now simply open the fridge, get your beer, and resurf your steps, which is cake since there is now a fresh smear of Cheeto orange all over your house.

But, as veterans know, shooting the tube can be gnarly if surfing is not done smartly and safely. To avoid being a Barney, aka a lame surfer, you have to keep your eyes peeled for potential perils, like men in gray suits—in other words: sharks. House sharks are things you should not grab for support. Floor lamps. Recliners that rock. Christmas trees. Lightweight tri-fold Shoji screen room dividers made primarily of paper. The horns of poorly mounted faux animal heads. Yes, the list of “sharks” is practically endless.

Alas I discovered after a recent mishap, there also are degrees of Barneyism, from mildly dorky to full-on moron. For example, after you cook a slab of bacon and move the hot pan off the even hotter stove, DO NOT UNDER ANY CIRCUMSTANCES then use the convenient cast iron grate of said hot stove for support. This dawned on me as rather obvious while I was running my left hand under cold water for 15 minutes as Laura fetched my cane while trying not to injure her neck due to repeatedly shaking her head in exasperation.

Yes, even though I typically avoid furniture surfing (and even warn against it due to potential mishaps), I went full Barney. No, I’m not proud of singeing my palm or freaking out my wife. But it could have been worse. I could have pulled a Barney while hanging eleven (uh, Google at your own risk). The lesson here: wade carefully into such waters and always use your walking aids. Or just blindly ignore my advice. Surf’s up!

Wednesday, January 14, 2015

Preparing the Comeback

When you use walking aids—and are under the age of 70—you are going to get questions. It doesn't matter if you are using a cane, trekking poles, forearms crutches, walker, or pogo stick (not recommended, by the way). People are curious and have an unquenchable desire to eat one's own foot. This is particularly true when using said walking aids in an unfamiliar way, say trekking poleswith rubber tipsaway from the trailEven I'll admit it does look a bit strange to be walking around Costco with gear more suited to scale Kilimanjaro (although granted the store is large enough to nearly qualify as a leg on the Appalachian Trail if one walks the entire length of each aisle). Of course you expect to get the occasional quizzical look or two. Perhaps the head-snapping double-take. Maybe a question about your disability or a misguided "get well soon." But the snarky, “I don’t see any snow” comments sort of piss me off. Not enough to make me want to clunk these jerks in the head with my Black Diamonds, but enough for me to stew about it. 

My stew reached a rolling boil when, while exploring an historic Bhutanese temple back in 2008some dude (presumably British, not that there is anything wrong with being British) said to me, “Chap, it’s not snowing.” I paused. At the time, I responded with only a smile. But for the next hour I decided to prepare a list of comebacks to make these idiots question their idiotic statements. Option one: a full frontal assault. "In my world where my body is being ravaged by multiple sclerosis, it’s a blizzard every single day." Bam! Okay, that might be a touch harsh. Option two: “I’m training to climb Mount Everest, and nothing interrupts my training schedule, not even a trip to the grocery store. I see you are not in training by your lack of poles and that Haagen Daz in your cart.” Option three made me smile widest"You don’t see any snow? Well… I don’t see any assholes. Oh, wait. Yes I do.”  

Alas, I always just smirk and nod, but it is cathartic coming up with snappy returns that will forever stay in my back pocket. Probably.  

Portions originally published June 26, 2008. Edited and expanded. 

Tuesday, October 28, 2014

Running with the Bulls

We were woefully early for dinner. The hotel’s restaurant opened early to cater to tourists and when we sat down to dine at 8:45 p.m., not a single table was taken. See, dinner in most of Spain doesn’t really start until 9:30, maybe 10 at night. For a pair from Albuquerque, where the evening “rush” happens as early as 5:30, eating at our typical bedtime took some getting used to. Back home, the last time we saw midnight might have been New Year ’s Eve. Uh, New Year’s Eve, 2008. Now we were lucky to get the check before the next day arrived.

As an MSer, staying up late typically holds about as much appeal as sunbathing midafternoon in the parking lot of a Walmart on a sweltering, humid summer day in Houston. But after living with this disease for nearly a decade, I’ve learned that if I don’t adapt and adjust, I’ll face unkind consequences. In this case, starvation and a hungry, grumpy wife.

Travel always tosses curveballs into your daily routine, just like MS does. Fatigue can trample you like a wayward bull terrorizing the streets of Pamplona (I survived). Some hills are just too steep to safely navigate. Sandy beaches slowed my already slow walk to a crawl. Cobblestones meant I had to pick a very careful path. And at times, stairs were simply unavoidable if I wanted to see some sites, like the otherworldly rooftops of famed architect Antoni Gaudi.

 Even so, travel with MS can lead to special opportunities. Heck, I went into the back rooms of Gaudi’s masterpieces—people gaped at me behind glass doors as I enjoyed unprecedented access. I rode the King of Spain’s elevator at his Royal Palace in Madrid. (Given that there are 3,418 rooms, our paths sadly never crossed.) At an 11th century monastery I enjoyed a private concert, complete with soaring arias, as the rest of the tourists on my tour of the World Heritage Site trundled upstairs. (The organist and singer conveniently were practicing for an upcoming wedding, and I was happy to chill in the ground-floor chapel.)

 Of course there were the misadventures that somehow follow me around whenever I step foot outside my front door. Like the time I locked myself into a handicapped bathroom so securely it took nearly 15 minutes, a credit card, and a bit of prayer to jigger the stuck lock open. Visions of Spanish firefighters sawing through the door as a flotilla of television news cameras captured the extraction on national TV were thankfully not realized. And then there was the time we somehow, unbelievably, ended up at the finish line of a road race exactly where runners were sprinting for the ribbon. There apparently was a good reason such an appealing gap existed in the sea of euphoric pink-shirted sweaty people. “Hombre with Esclerosis Multiple Causa 27-Persona Accidente“ the headline was certain to scream before Laura pushed my wheelchair at a clip that I swore broke the sound barrier.

Ah, life with multiple sclerosis. Homer (the Greek poet, not the Simpson) once wrote “the journey is the thing.” Indeed it is. In his tale The Odyssey, it took Odysseus ten perilous years to return home to Ithaca after the fall of Troy. Meh, whatev. I’m already in my 10th year of my personal MS odyssey, and I intend to press on as long as the heart beats, forever adapting to my ever-changing world. I have to. All of us with this disease have to.

Now of course Homer prophetically also wrote that “even a fool learns something once it hits him.” Like a pack of runners barreling into you while unwisely crossing the finish line of a road race that is at its conclusion. Touché, Mr. Homer, touché.

Tuesday, September 16, 2014

On Your Left

This past weekend for the first time in more than half a decade, I was spending the afternoon on the bike trail. And admittedly it was thrilling to take in all the scenery that was passing me by… uh, quite literally passing me by. I was passed by teams of spandex-clad cyclists with matching road bikes. I was passed by friends out for a leisurely Saturday ride. I was passed by an overweight dad on his son’s too-small squeaky mountain bike. (Admittedly, at this this point I started looking over my shoulder for grandmothers riding fixies festooned with baskets and bells.) “On your left” was the repeated refrain. And I did not care. I finally was cycling again… with my wife, outside, on a brilliant day.
Sure I was traveling at a speed more accustomed to joggers. I pedaled up tiny hills at such a lazy pace that the sun’s position in the sky visibly changed before summiting. Heck, to keep pace with me when she wasn’t sprinting ahead to get a little exercise, Laura nearly had to pull trick-riding moves to balance on her two-wheeler. In the past, this might have frustrated me immensely. After all I used to be a regular cyclist, even organizing special event rides on this very trail (e.g., Bike for a Burrito, slogan “it’s a gas”).
Over time, though, I’ve learned that when you have multiple sclerosis, there is little to be gained by bundling valuable energies into mourning the body of your past. Savor the present instead, and turn shortcomings into opportunities.
On this afternoon I was going so slowly, I could stare down animals along the trail that in the past would have skittered for shelter as I romped by. I could overhear curious kids squeal to their parents to look, loook, LOOOOK at that cool bike and how badly they wanted one. I could daydream to the hypnotic fishing-reel tck-tck-tck of the rear hubs when I coasted on the flats. And I could marvel as future Olympians steamrolled down the trail directly toward me. Egad, daydream over!
Seriously. Long-distance runners from the women’s 2016 Japanese team were training that day, taking advantage of Albuquerque’s mile-high altitude and perfect 70-degree weather. Coaches, each laden with a half dozen stopwatches, monitored their every step. Members of the squad kindly nodded my direction as our paths crossed. Perhaps one day I’ll have to learn how to say “左手に” to pass these marathoners while speeding along on my trike, but for now I’m quite content to be the slow dude on the right.

Monday, July 28, 2014

A Person Just Like You

I cry at sad movies. I need two cups of coffee in the morning. I sleep naked. I believe curiosity doesn’t kill the cat, stupidity does. I like kids who are curious. I scratch if I itch. I know that if you hold down that little lever in the fridge the light goes off. I vote my conscience. I get mildly upset—no, pissed—when someone takes my parking space. I inhaled. I believe no one should salt their food before tasting it. I sew. I think super-heroes don’t exist, but heroes are all around us. I eat leftover pizza for breakfast and enjoy it. I wait until April 14th to do my taxes just for a challenge. I count fat grams. I like a hot kiss on a warm night in a cool part of town. I ate glue in 2nd grade. I like verbs. I always reach around the first milk in the dairy section and grab the one behind it. I wear my emotions on my sleeve…sometimes. I dream big dreams in color.
Being disabled doesn’t mean being different.
I’m a person just like you. With feelings, opinions and convictions. Do your part. Help eliminate the barriers facing persons with disabilities. Encourage and invite disabled individuals to your parties and playgrounds. Choose places that are accessible. Let kids ask questions—it’s okay. And please, watch where you park your car.
You can make a difference.
I originally wrote this in 1997, 10 years before being diagnosed with multiple sclerosis. A woman, a talented abstract artist, needed help expressing herself—and conveying her experience of using a wheelchair—in print. As an able-bodied 27-year-old writer, I found it empowering and enlightening to approach the challenges of being disabled from such a perspective. For this 2014 edition, only one change was made (for somewhat obvious reasons): I removed the line “I check the pay phone coin return slot even though I know I won’t find a quarter.” Was I destined to be a voice in this community I’ve come to embrace and champion? Signs point to yes.

Wednesday, June 25, 2014

Falling for MS

Let’s cut right to the chase. If the nursery rhyme “Ring Around the Rosie” were to ever become an Olympic sport, folks with multiple sclerosis would be destined for glory. Not only do we “all fall down,” we fall down with such regularity that people might mistake us for soccer players. How to tell the difference? When we are writhing in pain, we’re typically not feigning injury (unless the cooler full of beer is just too long of a walk and you are trying to enlist spousal sympathy—a tactic that rarely works and I speak from experience).

It might seem obvious that researchers, in a large meta-analysis of nearly 600 MSers in four countries, concluded that folks with this disease are at a “high risk of falls and there are important associations between falls and MS-associated disability, gender and age.” Duh. Numb feet, wonky balance, rubber legs, bad eyesight, and a bumbly brain tend to influence such things. But if you read the full study, a more interesting picture appears. Permit me not to mince words: we largely are a stubborn group, with easily bruised egos, intent on not looking disabled.

Looking through the data, researchers zeroed in on one group in particular: the tweeners, those who are starting to need walking assistance but technically can go without. "It suggests that fall risk peaks at an EDSS score of 4.0 (when quantifiable mobility limitations are first acknowledged) and 6.0 (when a walking aid is required)." Do you wall and furniture surf, smudging up the house like a three-year-old? You are a tweener. Do you avoid taking a cane to work to so you won’t be known as the token disabled person? Yup, you are a tweener. Does the thought of using a walker mortify you, yet deep down you know it would probably help? Bingo: tweener.

And parsing the data further only reinforces what we already know. Ego plays a large role in our will to appear healthy and able-bodied. It's not the old geezers who are concerned about how they look in public (most already crossed that hurdle when they started wearing black socks with shorts), it’s the youngins. "Sustaining multiple falls was associated with younger age and the relative rate of falls was higher for younger participants." Predictably, gender matters, too. Who traditionally has the most easily bruised ego? Dudes. "In our sample the men had a significantly higher fall rate than the women, suggesting that men with MS who fall are at risk for frequent falls."

These days I rarely fall. After breaking my leg while trying to show off, ripping off a toenail days before an international trip, and clutching mostly naked men to stay upright, I’ve learned my lesson. It’s just not worth it. I use every available walking aid: canes, forearm crutches, walkers, trekking poles, grocery carts, you name it. And I’m not shy about my disability. Hell, these days I make restaurant reservations under the name Gimpy Dave. (“Did you say your first name is Gimpy? Or is that your last name?”) I always get a great seat and a big smile. Yeah, I may be gimpy. But nothing trips me up.