Irascible Ink

In this NPR piece, a Boston doctor discusses how an encounter with an ornery patient changed her relationship to her patients and the trajectory of her career.  As a result of her experience with a single patient, the doctor says she is no longer afraid: “to allow my patients to take me on their journey. Whatever expertise we have, the patient holds the wisdom of their life.”

Crusty Patient Helps Shape Doctor’s Career

This made me think of some lessons about being a good patient that it took me far too long to learn:

1. As a patient, be responsible for setting the tone and determining the course of your medical care;
2. Do your homework on physicians so you can choose wisely. Like the President picking a cabinet,  surround yourself with professionals who have the know-how.
3. Be willing to question and challenge your advisors, if a diagnosis or treatment suggestion seems off-base–no one knows your body like you do.

Fundamentally, you’re the one driving the bus. Get educated about your condition (or your child’s)  and the treatments available. Ask questions. If your doctor makes you feel uncomfortable or seems too harried to give you a cogent answer, find another one.

Over the years, I’ve often joked that I’m the worst medical patient in the world. I’m impatient, inquisitive, and over-educated, and I spend far too much quality time with Google. I read medical studies and pore over anatomical diagrams of the human leg before my appointments. I write down the names of the muscles and tendons I think might be the culprits. I send lengthy missives to my trainer asking about obscure body parts/ processes.

Maybe all this information gathering is an obsessive waste of time; but I feel more qualified to guide the journey if I’ve at least looked at a map.

Addendum: Don’t take my word for it, check out CNN’s tips for being an empowered patient:

Top Empowered Patient Tips for 2010

New Year’s:  The time of year when gym membership deals and good intentions abound, and the number of attendees at your 5 am spinning class grows twenty-fold for two solid weeks! Here’s an interesting, if a little obvious, article about how self-consciousness keeps overweight and obese people  from sticking with their fitness resolutions.

Top Reasons Those “Get Fit” Resolutions Don’t Stick

I spent many years feeling self-conscious about my body–first about it’s size, and then about it’s faulty, awkward mechanics–while at the gym. Then I realized something: like me, most people were too busy sweating, suffering, or feeling self-conscious themselves, to notice me.

So if you’re feeling apprehensive about getting out and sweating in public, remember that it’s ok to look like you’re working hard. And if you catch someone staring at you, they’re more than likely impressed, rather than appalled or amused. Odds are, if they’re like me, they’ve been there–and in their minds are cheering you on.

We’ll start today’s lesson with a tongue-in-cheek maxim from my Dear Ole Dad: Anything worth doing is worth over-doing. Usually he lobs this one at you when you groan that you’ve eaten too much at Thanksgiving or confess to over-indulging at the open bar at a friend’s wedding. It’s also his response when you chastise him for shrinking your favorite sweater by putting it in the dryer for 17 hours. (It’s ok, Dad. I forgive you!)

For many years this has summed up my approach to physical fitness as well: Go big or go home. Pain is merely weakness leaving the body. Anything worth doing is worth over doing. Generally, I would say that my stubbornness and tenacity have served me well in my pursuit of physical fitness. Occasionally, though, my inability to listen to my body, to cut myself some slack has sent me careening off the rails.

I once walked on a fractured leg for two weeks–2.5 miles to work/the gym  every day, plus workouts–because I failed to listen to my body. It was screaming for attention: my ankle was swollen, I had shooting pain up my left shin and down into my heel bone. Genius that I am, I bought a $10 ankle brace at Rite Aid and pressed on. I figured it was just stiffness in my ankle from the CP: Pain is weakness leaving the body. Finally, I was in so much pain during one of my workouts, I couldn’t see straight. I left mid-workout. Instead of taking a cab home like a sane person. I walked the mile, or so, home. It took nearly an hour. I nearly threw up twice. When I got home my jaw was throbbing from gritting my teeth.

When I finally conceded that something was really wrong and went to the doctor, they were appalled that I was still on my feet. The stress fracture was large enough to be seen easily on the x-ray, and went clear across my tibia, or large lower leg bone. Since I had fractured the stronger of my legs, crutches were not an option for anything more than navigating from the couch to the bathroom to the bed.

So my stubbornness earned me seven weeks of being almost entirely home-bound. I went from exercising 2-3 hours, 5-6 days a week, to being almost completely immobile. I cried for an hour before calling my trainer to cancel our workout the week after I was put in a reinforced boot. I was devastated.

Frankly, I’m shocked and gratified that my friends from that period still want to know me. I was a mess: depressed, angry, resentful. It took me nearly 6 months to get back on track, and I’m still trying to get rid of some of the weight I gained while I allowed myself to be soothed by Ben and Jerry.

So I guess the lesson here is that it’s important to workout hard and workout smart. Know your limits and understand that there’s a difference between pushing your boundaries and throwing yourself head-long against a brick wall. Sometimes pain is pain, and you’re foolish, not bad a$%, if you ignore it. Sometimes it’s ok, and even advisable to take a break, to lie on the couch, to sleep in, to <gasp> skip a workout.

I know these things intellectually, but I still struggle. When I’m feeling tired or my back is protesting, I agonize over skipping a workout. I worry about the slippery-slope of breaking the routine. When pressing on despite discomfort is your MO, sometimes it’s difficult to distinguish between discomfort you should work through and pain or exhaustion that you shouldn’t. Even if you listen to your body, you may not be sure what it’s trying to tell you. But to be successful–and injury-free–in the long-term, I need to learn to distinguish between the good fight and a fruitless skirmish.

Yesterday, after having my back rearranged and angsting about missing my first workout in four days, I sat out a skirmish. Today though, I think I am ready to get back in the fight.

As advertised, a large portion of this blog will be devoted to my quest for improved physical fitness. In fact, this journey started more than a decade ago when I graduated from college.

It’s hard to get motivated to get in and stay in shape, for anyone. There’s a lot of time, sweat, and mental fortitude that goes into it. It takes a whole lot of effort just to start to commence to begin to even think about exercise. This process is especially difficult when you’re barraged with images–very narrowly defined, specific images–of what an acceptable body size and shape is. Even now, I’m not sure how I did it. But I do recall, quite vividly, the catalyst. It was a pair of size large doctor’s scrubs that I had to squeeze into when I had my last surgery. I was 23, just graduated from college, and I was enormous: 178 pounds on a five-foot tall frame. I was tired all the time, my limp was very pronounced, I tripped over the slightest crack in the sidewalk. My back hurt just from sleeping. I remember lying on the table, the with the anesthesia mask over my face, feeling mortified as my body strained against the fabric of the scrubs. I thought to myself: I can’t possibly begin my new, adult life this way.

Four weeks after that surgery to correct strabismus, or a lazy eye–another lovely CP-related gift–I was cleared to begin exercising. I joined a gym and got started. In the beginning 20 minutes of cardio nearly killed me. I pedaled so slowly on the stationary bike that it frequently flashed “pedal faster!” indignantly. Sometimes it even switched itself off in frustration. My calves burned the entire time. I’ll be honest, it was miserable. Grueling. Occasionally, I felt completely demoralized. I watched other people, some more lithe, others my size and larger, bop along seemingly effortlessly on machines I wasn’t even sure I could climb on to. Every day, I wanted to quit.

At 23, it was vanity that kept me from quitting. I’d like to say that I’d grasped the idea exercise was the key to long-term mobility, but if I did, I’d be lying. I wanted to look better. I wanted to shop for clothes without tears and temper tantrums. I wanted to wear cute outfits, and maybe even get a date. When I started exercising, then three days a week, I gave up butter, soda, potato chips, and all but the occasional dessert. I ate more vegetables and fruits, and concentrated adding good things to my diet rather than excluding “bad” ones.  It was nothing extreme, but I began to lose weight. Two years later, I weighed 126lbs. My back no longer hurt, I rarely tripped, and could do an hour of cardio at a time.

I found a personal trainer at a local gym–I’d moved to the DC area and was on my third gym membership. He re-introduced me to the fundamentals of weight training I had learned in college, and got me on a simple program. He seemed a little afraid of me, and so I didn’t push him to push me. Mostly, I worked out on my own and read as much as I could about physical fitness and nutrition. Once or twice I looked into specific training recommendations for people with CP. All I found were a few small studies that said that weight training might be beneficial. The studies each looked at about 20-30 children with spastic diplegia–but no adults were included. So I dropped it. I knew it made the difference for me, and didn’t need anyone to prove it to me.

In the years since, I’ve been lucky enough to have two very special and committed personal trainers who’ve inspired me, driven me, and had faith in my abilities. They are vastly different people who share one thing in common: they never underestimated me. They’ve been willing to push me hard, and have taught me how to push myself. And my success, to this point, is largely thanks to them. Well, and to lots and lots of sweat.

Special thanks to my current Personal Trainer Extraordinaire (PTE), and my first fitness mentor, Mr. Bad-A%$ Trainer (BAT), without whom I would not have learned to kick my own backside.

Today’s workout was courtesy of the folks who make the Swiffer mop. After an entire day marooned in my apartment by icy sidewalks, I couldn’t take it anymore. I needed to get out, and needed to get in my workout for the day. My Austrian trekking poles have yet to arrive, so I went digging around in the hall closet for a semi-suitable proxy to get me the block and a half to the gym. After trying unsuccessfully to remove the head from a broom and getting dust bunnies all over my shirt, I found it: the Swiffer. I unscrewed the mop attachment, et voila! A trekking pole! I wouldn’t use it to climb Everest or anything, but it got me to the gym and back without injury.

My workout consisted of 3o minutes of interval training on the eliptical trainer, followed by: TRX wide-leg squat/lunge combinations (3×20); TRX push ups (3×15); TRX suspended rows (3×15); Cable squats (90 lbs, 3×15); Cable bicep curls (40 lbs, 3×15); Over-head tricep extensions (37.5 lbs, 3 x15); One armed seated rows (35 lbs, 3×15); Donkey kicks (3×20); Oblique crunches (3×20); and, the dreaded clamshell exercises (3×20).

A quick note about the tedious exercise laundry lists. I’m keeping track of these for two reasons: 1.) to hold myself accountable for my workouts and, 2.) to document exactly the kind of work I’ve done in the wake of the botox injections. As far as studies go, the jury still seems to be out as to whether weight training is beneficial for people with cerebral palsy. For myself, I know that it has made the world of difference. I hope that I can inspire other people with similar challenges to give it a try. In future, I’ll let you all know when the boring bits are coming so you can skip them.

In addition to the pursuit of the holy grail of dorsiflexion, I’m working studiously to build some of my chronically weak muscles–hamstrings, glutes, etc.–and to improve my balance. One exercise I attempted and failed at miserably were lunges with 10lb weights in each hand. My balance is just not quite there, and without the steady arm of PTE (personal trainer extraordinaire), I wiped out twice. I’ve been weight training long enough to know that I need to clear the decks of debris before I start, just in case. Eventhough I failed at the lunges, it wasn’t so bad. At least I don’t have rug burn on my forehead or anything. The only thing I hurt when I fell was my pride.

The inanities of the District’s snow removal policies drive me berserk every year. I know, I know: the city has very little in the way of a snow removal budget, it only snows 2-3 times a year, I don’t live in a high-priority area. But for a town that encourages everyone to leave their cars at home and take Metro to work, the District doesn’t make it easy for pedestrians to get around. And if you’ve got compromised balance, like I do, and newly flexible ankles, it’s downright dangerous.

I live in a residential part of the city where merchants and homeowners are required by law to clear their sidewalks of snow and ice. Most folks do a great job, and the sidewalks are somewhat navigable a day or so after the snow. However, then the plows come along and create giant snow drifts at the end of each block, which you have to wade through to cross the street. Pretty much every street. Then nothing happens for a few days, except that the piles freeze and refreeze and become gigantic icebergs. Then someone complains and the city dispatches teams of guys with ice picks to come hack at the icebergs for a while. Well, one guy hacks at it, one guy leans on his shovel and smokes a cigarette, and one guy drinks coffee/”supervises.” They chip away at it for a few hours, and then give up and go away again. Then the city waits for the snow to melt, after which the mayor goes on TV and talks about how smoothly the snow removal went. Dude, it melted. It makes me positively apoplectic.

Meanwhile, I’m stuck in my house or on my block because I can’t scramble over these things unaided. I’m afraid to walk more than a few blocks in case I get stranded mid-journey. I have, on occasion, been forced to crawl over ice or snow on my hands and knees. It pains me to admit that–that there’s something I can’t handle. It’s humiliating, my eyes are stinging  just thinking about it.  It kills me that something so small as a pile of snow can defeat me, but there it is.

Today my employer is one of the few offices open in the city. I actually wouldn’t mind going in. It’s the week before Christmas. It’ll be quiet. I like my co-workers. But I can’t take the risk. that I could fall and injure myself and derail my whole fitness plan. So I need to ask my employer to accommodate me and allow me to work from home. Most likely this won’t be a problem–I let them know that this might occasionally happen when they hired me. I hate having to ask for accommodations, even if they are completely reasonable. Somehow, I feel like it’s cheating.

I’ve had to admit that the CP changes the way I live my life, but old habits die hard. The stoicism and denial hangs on sometimes, they take a while to thaw–kind of like that iceberg at the end of the block. In the meantime, I’ve ordered a pair of Austrian Alpine walking poles. Next time I’ll be ready, and those icebergs will be just another roadblock that I’ve scrambled over, fading from view.

Those of you who live in the D.C. area know that the city is routinely paralyzed by the mere threat of snow. Six flakes and the schools let out early. Three inches? Forget it, the government closes and the stores are mobbed with folks stocking up on TP and bread. Yesterday, we got 16+ inches of snow, which brought most activities in the city to a grinding halt. On the plus side, if you live in the actual city and are brave and resourceful, you can still find some shops and bars open for business. If you’re like me, the first place you call when you get up on an snowy morning is your gym. Yesterday, I was thrilled to find mine open for business and surprisingly full of people.

I’m two weeks out from my first round of botulinum toxin A shots, so I’m trying to take advantage of the maximum effectiveness of the drug. Injected directly into overactive muscles, the toxin temporarily stops the inappropriate muscle activity that characterizes the type of cerebral palsy I have: spastic diplegia. If you want to know what I mean by overactive, clench your fist then use your other hand to feel the muscles in your forearm. They’re hard because you’re actively flexing your muscles. If you release your fist, they’ll relax. If you’ve got overactive–or spastic–muscles like I do, some of your muscles are clenched like that all the time, they can’t relax much, if at all. The involuntary contractions make it difficult to stretch the muscles, and very often lead to deformities in the joints–or anomalies in the way the joints function.

Two weeks ago doctors hit my gastrocnemius and soleus muscles to relieve the spasms or spasticity in those muscles, so the next 8-10 weeks are all about stretching them out, strengthening opposing muscle groups, and mobilizing my ankle joints. The strengthening, and some of the stretching, I have a handle on. But joint mobilization requires the help of a trained professional–so I waded out in the snow to meet my PTE (personal trainer extraordinaire) who also happens to be an extremely gifted physical therapist. After half an hour of (slightly) torturous mobilization of both tibias and fibulas, we got down to the sweaty work.

Yesterday’s roster included: lunges with 10lb dumbells , work on a stability ball for my obliques, leg presses of up to 235lbs, cable squats of 90lbs, and some ridiculous-looking clamshell exercise for my gluteus medius (I think.) Afterwards, since I was there and it was still blizzarding outside, I did an hour on the eliptical trainer. This was followed by fifteen minutes devoted strictly to my scrawny shins and the holy grail of dorsiflexion.

To have a normal gait, you need at least +10 degrees of dorsiflexion in your ankles. Dorsiflexion, by the way, is the action of bringing your toes towards your shin bone. When you take a step forward and put your heel down in front of you with your toes in the air, that’s thanks to dorsiflexion.  Before the botox, on a really good day after lots of stretching, cardio, and maybe some acupuncture, I got to neutral or zero degrees. Now it looks like I might be able to get the 10 degrees. I think I’m currently still at zero, but I’m wearing night braces and doing exercises to increase the strength in the muscles running along my shin bones and ankles that control this action. The muscles are weak, having been inactive for more than 30 years, so the movements at this stage are miniscule. So if you see someone sitting on the floor at your gym, with their legs out in front of them, staring at their toes as if they were a magician trying to bend a spoon, that’s probably me.

Yesterday was the office holiday party, an event that called for some coerced socializing and revelry. The holiday season is chock-full of this kind of carousing. Much of it with people you like a lot, and some with people you’d be horrified to find sitting next to you on a trans-Atlantic flight.

This got me thinking about social awkwardness. I don’t think anyone who has ever met me would consider me to be socially awkward. Rather, I appear to be outgoing and confident in the extreme: the consummate extrovert. When I’m in top form, I walk into a room, stick out my hand and introduce myself to everyone within spitting distance. I tell a couple stories, I ask a bunch of questions, I make it my job to make sure that the people around me have a good time. Even if it isn’t my party!

To most people I come in contact with, it probably seems really natural. But I have a secret–which some of you who’ve known me for ages might remember–I’m actually a shy, self-conscious person. Or at least, I often feel that way on the inside when I walk into a room of strangers. The extroversion, in my case, is absolutely a learned skill. This doesn’t mean that my interest in people and investment in getting to know them is somehow phony or disingenuous. It’s just that engaging with people this way takes time, effort and practice.

It’s a skill I cultivated, I think, to try to belong. I wanted to seem less foreign to people, and to feel less like an alien myself. I wanted to make other people feel welcomed and accepted by me, and hoped they would return the favor. I found that the way to ensure that you’re not excluded from the party is place yourself at the center of it. And by that I don’t mean donning a lampshade or attempting to dominate every conversation. Although, as I said, socializing when you feel awkward is a skill that takes practice. So I have been guilty of both ridiculous behavior and incessant nattering.

When you walk into a room, recognize that most people feel pretty much the same way you do. Maybe they don’t limp, but they’ve got some ketchup on their tie. Maybe they’re having a bad hair day, and are praying that no one notices that it’s is slightly green. Enter that room as if it were your job to make everyone feel at home. Every person you meet has a story to tell you, if you listen. And if you ask the right questions, you might hear a really epic one.

Many times this strategy has worked for me–I’ve made a new friend, made someone’s evening a little less stressful and a lot more fun. Many times, that someone has been me.

Happy reveling season, people! Let the wild rumpus start!

Barry

This morning I was ready. I was bundled up against the cold, a pair of black spandex shorts secreted under my jeans. My legs were limber from early morning stretching so that could show off my new moves for my doctor.  The great reveal: the follow-up appointment to my first round of Botox injections twelve days ago. Given the success I’ve had so far with my calf muscles, I was looking forward to another round of shots. They would, I hope, liberate my thighs, hips and lower back from the strangle-hold of spasticity. I was looking forward to sitting effortlessly cross-legged on the floor, to contorting myself into the lotus position, to kayaking in the spring. I was looking forward to being less knock-kneed, and to wearing shorts that don’t bunch up in the front when I walk.

Unfortunately, it wasn’t to be. At least not today. My doctor decided to exercise caution and wait for further treatments until early 2010. This wasn’t due to any adverse reaction to the drug, but rather concern that another round of injections, so soon after the first, might encourage my body to produce antibodies. These we don’t want, because they prevent the drug from working. (At least I think that’s what he was saying; I don’t speak Neurologist.)

I was disappointed, although I knew it was a distinct possibility that we’d have to delay. I felt like a little kid who finds socks and underwear under the Christmas tree. The doctor was doing his job, looking out for me, and looking at the big picture. But I was a little crushed. I was ready. I wore spandex shorts for the first time since 1989! It took all my willpower not to stamp my foot and say: “But Doc, you promised!”

On the train ride home I tried to console myself with the fact that a new date had been set, I just needed to be patient. It wasn’t really working for me. At all. I went through the rest of the day feeling like another roadblock had been thrown up in front of me, like I’d stumbled on the last hurdle. I was tempted to sit on the couch with a box of chocolates or some beer. I think what got me was the two+ month stretch of waiting, for time to pass and for the solution to land on my doorstep. It’s a helpless position to be in, waiting for something good to come to you. I’ve never been zen enough to make that work for me.

There’s nothing I can do about the delay, but that doesn’t mean I have to sit on my couch for two months. Instead of wallowing in self-pity, chocolate and beer,  I went to the gym. I knocked out 45 minutes on the eliptical–concentrating on maintaining my posture and pushing through with my heels. I lifted weights and focused on form and contracting the muscles I know are weak. My personal trainer extraordinaire (PTE) will be thrilled to know I did all the exercises I hate–including that hamstring one on the TRX.

And I felt better. I still feel better–because I have agency. I can use those two months to build muscle and strengthen my already liberated ankles. And if my doctor won’t give me the shots next time, I am pretty sure I’ll be strong enough to put him in a headlock by then.

Welcome to Irascible Ink!

This is a blog devoted to my experiences as an adult with cerebral palsy, and my year devoted to optimizing my physical fitness and living the best and most limitless life possible.

I have to admit, I’ve got some misgivings about launching this blog. I’ve spent my whole life trying–by humor, by kindness, by stubbornness, by zaniness–to get people to forget, or not to notice, that I have cerebral palsy. Not because I am particularly ashamed of it, but because I firmly believe that it is irrelevant to my essence and sovereignty as a person. Or at least, I fervently believe that it should be irrelevant–merely a biological fact, like blue eyes or brown hair, like hitchhikers’ thumb or a widow’s peak. I have lived as if the rest of the world agreed with me–as if people didn’t stare, as if the staring didn’t bother me, as if having CP didn’t impact my life in any meaningful way.

For the most part, my cunning ploy worked. Most people who have known me for any length of time will tell you that they never noticed, or quickly forgot that I have a limp at all. They were too distracted by a silly story, a big smile, or a friendly handshake. I pretty much ignored CP’s influence, and because I ignored it, most people I cared about ignored it too. It was merely a footnote in the story of my life: it’s there for reference, but no one reads it.

As an adult, I discovered the gym, and working out as a way to feel in control of my body and my life.  I felt good. Sure, I struggled in ways other people didn’t, but I was in control and beating the CP into submission.  I worked, I traveled, I made friends, I went to school, I kayaked, I boxed, and I even learned to run.  Then came a string of injuries–a tibial fracture, some SI joint debacles. Then a long struggle to find knowledgeable medical professionals willing to work with me, and to help me do more than cope with less mobility and more pain. Suddenly having cerebral palsy took up a lot of my time, my brain-power, my physical and emotional energy, and my money.The thing that I had struggled so long to keep on the periphery of my life, had suddenly become central to it.

Launching this blog means really acknowledging the fact that this biological accident matters. It means accepting that it has had weight and influence, and that the experience has shaped me as a person. It means accepting that for some people in this world, the most memorable thing about me will be the fact that I have cerebral palsy. Frankly, that’s a really scary prospect: to allow, and even encourage, people to put me in a box, categorize me, simplify me. But I’m hoping that what I have to share will be helpful to folks fighting similar battles or to parents of kids with CP who worry about how their children will fare once they age out of treatment programs. I hope too that it’ll be at least a little bit entertaining.

Please see the About section to find out about me, the mission of this blog, and the disclaimers.

Cheers!

Barry

Note: If you’ve got questions, want to register a complaint, or have suggestions for topics to be covered here, please email me at irascibleink[at]gmail.com.