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Amy F. Quincy Author/Freelance Writer

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amyfquincy

Freelance Writer

Juggling Act

Back in October, as I was striving to find balance in my life and juggling all of my time demands, I wrote about the concept of “big rocks.” The idea is to prioritize in terms of what is most important to you. These items are your big rocks. I established mine as Writing, Health and Frankie. It’s now almost six months later and after a brief interlude of sanity, I’m back to struggling. My big rocks are sinking me.

So, I’ve taken a pickaxe to them. I don’t think this is what Stephen R. Covey had in mind when he introduced the concept of big rocks in The Seven Habits of Highly Effective People. Don’t get me wrong — the exercise has been helpful. Knowing what the most important things are in the larger picture of my life is invaluable. It helps me every day when I scan the to-do list and decide what can wait. I’m just sick of the carry over. If I have to look at ~organize photos on computer~ one more day, I’m liable to lose it.

This past week, my big rocks took some major hits. After much discussion with my writing coach, it was decided that instead of the time-consuming written critiques I’d been doing on the computer, I’d provide only verbal feedback to my fellow writers. We also discussed the option of attending the group once, instead of twice a month. I don’t think I’ll do that since it would take away from my “me time.” (More on that later.)

I took a major chunk out of my Health rock when I put the gym on hold for two months. Disabled gym goers have one advantage. We may have fewer places where we can work out independently, but at least there’s no contract allowing a health club to continually suck fees from a checking account regardless of attendance.

Lastly, I asked my mom to take Frankie more. She misses him. He loves visiting her. It’s a win-win situation. In fact, as I write these words in peaceful solitude, he’s over there bugging her cat instead of mine.

After I had more manageable pebbles to deal with, I made some new rules. Rule 1 — schedule only one appointment per day. By the time you add in the time it takes me to ride the bus there and back, we’re talking about a half day anyway. Rule 2 — Keep one weekday free from appointments. I mean really free. No grocery shopping, no lunch date, nothing. I’ve realized, particularly as a writer, how wonderful a large expanse of free time feels, how ripe with possibility. Never underestimate the mental well-being gained from having nothing on the calendar. For those of you with full-time jobs five days a week — I’m sorry. What can I say? This is one of those disability perks I talked about.

Having knocked time off my big rocks, I’m focusing on taking the next several weeks to resolve some major projects. This brings me to New Rule Number 3 — Only one big project at a time. This seems obvious enough, but last month I took on getting a new power chair, physical therapy for my shoulder and updating my website. No wonder I felt stressed.

Finally, if I can leave you with just one thought. Don’t sacrifice your “me time.” This is one area I never skimp on. My me time is sitting watching the waves with Frankie, going out with friends, or enjoying a meal in front of a recorded movie (I never eat on the run.) It may be a little selfish, but this way, if everything else crumbles, one thing is sure to survive — you.

5

Tough Guys

One quadriplegic furiously chases down another as the two men move from their locked positions. Their wheelchairs race and then WHACK!  The clang of metal on metal rings out and one wheelchair crashes on its side, its occupant suspended helplessly. In any other setting, this would bring people running to assist, but here, a referee casually walks over and picks up the ball before someone rights the dangling player.

This is Quad Rugby, a.k.a. Murderball, and it’s all just part of the action. And having been to several games, I can tell you — there’s plenty of action. The rules are pretty simple. Each team tries to get the ball through the goal on their respective side of the court. The offense passes or carries the ball, while the defensive team blocks. There are fouls, rebounds and a lot of back and forth. It’s kind of like basketball, but without the hoops or dribbling. And, in my opinion, it’s more exciting. But don’t take my word for it. Check out this video of the Brooks Bandits (Brooks Adaptive Sports and Recreation Program) playing in the recent 5th Annual Southern Slam Quad Rugby Tournament.

It’s disconcerting at first, watching people in wheelchairs slam into each other. But then you realize, these guys are defying stereotypes and redefining what it means to be handicapped. While a friend and I watched an away game in Atlanta at one of the premier rehab hospitals in the country, a woman next to us had just met the parents of a 16 year-old who’d been severely injured in an accident. “Bring him down here,” she told them in the elevator that led from patient rooms to the indoor arena. “He needs to see what’s possible.”

I read a memoir by disabled cartoonist John Callahan in which he says he never forgot his first sight of wheelchair basketball players darting around and popping wheelies in the halls of his hospital. It gave him hope through the dark days to come. And the message? Life goes on. Goes on well. In fact, in the disabled world, inviting the Quad Rugby guys to your party is like inviting the football players back in high school. They’re the cool kids on the disabled schoolyard.

For those of you not in the know, quadriplegia means without good use of any of the four limbs (not to be confused with paraplegia, the loss of use of two limbs, usually by spinal cord injury.) Quadriplegics come in all shapes and sizes with greatly differing injuries and abilities. For example, I’m a quadriplegic. And I couldn’t catch or throw a ball if my life depended on it. Unless it was a beach ball. And even that’s questionable. Plus, I’m sure my double vision would get in the way if anyone was foolish enough to let me out on a court. There are quads who can walk (usually brain injured,) but many have suffered a spinal cord injury where the break was high enough to affect hand motor function or grip strength. I’ve seen double amputees playing Quad Rugby and one gentleman in Atlanta, wheeling his chair with a duct-taped elbow, making the former massage therapist in me cringe at the repetitive motion injury he was undoubtedly causing. Then I remembered — he has bigger problems to worry about.

Regardless of the difference in our abilities, we’re all disabled. We want, like anyone else, to belong somewhere, be part of something. These guys like being physical again and playing as part of a team. I enjoy the individual sports, like horseback riding or swimming, but with the camaraderie of a group of people to who, in many ways, I can relate. Everyone wants to look in the mirror of society and see themselves reflected there. And what you get from these games, or any adaptive sport, either as a participant or a spectator, is the sense that life is not over. Not by a long shot.

5

Imagination and Memory

Imagine for a moment, waking up in a hospital to find yourself paralyzed from head to toe, unable to move or even speak. That was the fate of Jean-Dominique Bauby, editor of French Elle, when he suffered a massive stroke that left him a victim of “locked-in syndrome” at the age of 42. He would never leave the hospital, never eat except by tube and never have a regular conversation again. And yet, it was during this time that he wrote his                                                                                            bestselling memoir, The Diving Bell                                                                                           and the Butterfly. 

Left with a fully functioning and brilliant mind, but able only to blink his left eyelid, he wrote and memorized entire paragraphs in his head. His speech therapist designed a system by which someone would read the alphabet and he could blink when they came to the letter he wanted. Sometimes I feel sorry for myself, pecking away with thumb and index finger at the rate of nine words a minute in the comfort of my own home. Bauby dictated an entire novel from his hospital bed, letter by painstaking letter. I think of him often.

His memoir, published in 1997, received critical acclaim and its beautiful prose is testament to the power of the human spirit. Bauby’s mind is the butterfly, taking flight from his physical body, the diving bell. A French film, directed by Julian Schnabel, followed in 2007 and was nominated for four Academy Awards in the areas of directing, cinematography, writing and editing. In the film version, the subtitled words for Bauby’s thoughts appear, “I’ve decided to stop pitying myself. Other than my eye, two things aren’t paralyzed. My imagination…and my memory. They’re the only two ways I can escape from my diving bell. I can imagine anything, anybody, anywhere.”

Bauby died of pneumonia on March 9, 1997, just two days after the publication of his memoir. This coming week, as we approach the anniversary of his death and I continue to use words to try and cultivate my own butterfly garden, I feel grateful for two things. My imagination…and my memory.

7

…Comedy Show Maybe

I’m embarrassed to call Frankie a Pekingese. Meet Malachy, winner of the 136th Annual Westminster Kennel Club’s Best in Show. And a Pekingese.

The only dogs that looked more ridiculous were a hairless Chinese Crested and a Poodle that paraded around with its’ bouffant hair-do and ballooned ankles. This mop-on-a-leash actually elicited laughs from the audience and caused one announcer to jokingly wonder if he could even make it around the ring. Large dogs ran around the arena. Most had a gait that at least required their handlers to break into a fast walk. Malachy waddled. And his handler walked like he was waiting on Grandma with her walker. Malachy was the only dog continually being fluffed and groomed on camera. But he was also the only dog I saw with such potential for a bad hair day.

After Malachy took the Toy Group, the action culminated with seven dogs, one from each division, competing for Best in Show honors. There was an interesting moment when the final judge was announced. (She’d  actually been sequestered for two days like a jury member on a celebrity murder trial.) After introducing her and her stewards (whatever they are,) a brief scuffle ensued behind them. Since the announcers didn’t miss a beat or even acknowledge it, I had to look it up. PETA protesters had turned up. Now, I happen to agree that it’s senseless that millions of unwanted animals die every year while breeders keep churning out full-breds and designer dogs, but I enjoy a good spectacle as much as the next girl.

And spectacle it was. The final seven did another lap around Madison Square Garden under dimmed lights and swirling spotlights. The grand finale had all the building tension and drama of a tightrope act at the circus. Malachy was up against some real dog’s dogs. We’re talking a German Shepherd, a Doberman and a Dalmatian. Dogs that would’ve laughed this little guy right out of the dog park.

As I watched his little pink tongue panting with the effort of his exertions, I strained to see something of Frankie in him. Maybe the large, round eyes. Thankfully, it was hard to see any resemblance whatsoever. I’m sure you’ll agree. And from now on, whenever anyone asks what kind of dog Frankie is, I’ll tell them he’s a Pekingese mix. Emphasis on the mix.

2

Belle of the Ball

Frankie has been getting entirely too much attention lately. But long before there was the constant barking, gnawed-on shoes and half-eaten garbage, there was the quiet, peaceful existence of a writer and her cat.

Bella found me (quite literally) in December of 2005. I had recently put down my cat of 14 years and I was outside raking leaves. Raking and crying. It had only been a couple of months since his passing and yard work had been our “special time.” Tears were streaming down my face when a white kitten with blue eyes jumped out of the bushes and started chasing the rake. I decided it was a sign.

We spent the better part of an afternoon getting to know each other. She dissolved into purrs beneath my hand. She was attention starved and oh-so loving. My next-door neighbor saw us outside. He didn’t know who she belonged to, but he’d seen her the night before on our street. I knew it had been close to freezing on recent nights. She had on a pink collar with rhinestones. I was falling in love with someone’s pet.

I left to run an errand. I knew she might be gone when I returned, but I secretly hoped she wouldn’t be. When I came home, there was no sign of her. I opened the door and looked up and down the street. Nothing. The third time I checked — there she was — across the street, in a driveway. She looked up at me and bounded across two yards to my front door. The same next-door neighbor laughed and hollered over to me, “She picks you!”

As it turned out, some college girls had adopted her before learning that their third roommate was allergic. They’d been keeping her outside and planned to return her to the Humane Society the next day. They’d been trying to find a home for her. At last attempt, she’d been shipped off with a boyfriend who owned two big Boxers. They were relieved to give her up to me. I’m sure she was relieved to get away from the Boxers.

She came with her name and her pink diamond collar. I took the collar off, but it was too late. Her personality was already infused with the entitled air of a princess. She’s clearly an indoor girl. She goes outside in my small yard only when I’m watching. She would never jump the fence. She doesn’t jump. Or climb. Or even relish high places. My mom says she’s the perfect cat for me cause I take so long at the door and she never runs out. My mother once accidentally left the door ajar and the wind blew it wide open. It was like that for half the day and I came home with Frankie in a panic to find her lounging on the bed.

Maybe her first few months served her well. Now she can really appreciate attention from someone who’s not allergic and treasure a warm bed on a cold night. And after holding her own against Boxers, she can certainly handle Frankie.

Frankie has made me love dogs in addition to cats and I’ll always be writing about him and his mischievous ways. But behind this adorable dog that hogs the spotlight is a sweet and unassuming kitty. When it comes to these two, it’s true what they say: you never forget your first love.

2

Happy Kind and Thoughtful Day

Being able-bodied and single for so many years, I have to say that Valentine’s Day used to cause me a lot of angst. If I didn’t have a boyfriend, that fact was made painfully obvious. And if I did, there was the constant worry over what he would or wouldn’t do and the terrible disappointment of not having my expectations met. Either way, I lost.

Now, I actually enjoy the holiday. Without troubling over whether I’m alone or just with someone who makes me feel like I am, I can really get into it. I usually buy valentines for family and friends alike and Mom and I trade red cellophane hearts stuffed with chocolate and gifts so tacky they’re cute, like last year’s plush bumblebee that sang Be My Baby.

I think everyone (who doesn’t have the perfect gift-giving spouse or significant other) should know this joy without becoming disabled. That’s why I’m suggesting that every February 14th become a day of benevolence and general consideration to everyone, even strangers. You know, like the whole random acts of kindness thing, except more concentrated. Make it a day less about romantic love and partners and more about just being nice.

One of the big perks of disability is getting to see lots of human kindness. My mom jokes she likes to take me out cause we might get our bill paid. Seriously! It’s happened at two different restaurants. Some kind stranger has picked up our tab. Another time, a friend and I went shopping at a consignment store. In recounting the total, we figured I got the “wheelchair discount.” It was cheap in there, but not that cheap! And I can’t count the number of times I’ve been walking Frankie and someone has offered to pick up his poop. Can you imagine?

I think that kind of generosity should extend to everyone, not just the handicapped. And if it’s done on Valentine’s Day (or the entire month of February,) a lot of people can avoid a lot of holiday-fueled anxiety. Now, I’m not suggesting you start picking up after some stranger’s dog, but here are a few ideas to get you started:

♥ Open doors for people behind you.

♥ Let someone with just a few items in front of you at the checkout.

♥ Send e-cards to friends.

♥ Don’t forget your “thank you” wave.

♥ Give a carnation to your co-workers — all of them.

♥ Be nice to someone you don’t like.

♥ Call someone you haven’t talked to in a while.

♥ Bring treats to work (or for the health-conscious — fresh fruit.)

♥ Pay the tab of the person behind you in the drive-thru at Starbucks.

 And don’t forget — in the event my idea doesn’t take off, be kind to yourself. In my office days, I wasn’t above sending flowers to myself. From a secret admirer, of course. The person at the flower shop is the only one who’ll know. And I’m sure they get it all the time.

5

Loitering Allowed

My independence has taken quite a few hits over the years, but one inability irks me more than any other. I can handle being unable to write by hand. I’ve grown accustomed to having my food prepared for me. And I can’t really say I mind being unable to work. If a genie popped out of a bottle to grant me only one wish instead of three, I’d certainly wish I could walk again, right? Wrong. I’d give anything to sit behind the wheel in bumper to bumper traffic.

I sympathize with a whole different generation now. Senior citizens. To finally have a concerned family member tell you your driving days are over — ouch. Driving is independence. Being able to get from point A to point B on your own, without asking anyone’s permission. That’s huge. It’s why my neighbors always see me tooling around town in my wheelchair. It’s why I actually had bald tires. It’s why I’ll spend half an hour to go half a mile for coffee with a friend. Freedom.

One of the worst things about not driving, particularly if you’re relying on public transportation, is the waiting. I’ve spent so many hours outside Publix with my groceries, I should be on the payroll. Official meeter and greeter. Twice I’ve given up. Publix kept my power chair till I could arrange to transport it later, while me and my soggy groceries bummed a ride. The problem, if JTA will allow me to say so (and if they won’t, oh well, here goes) is this ridiculous rule they have about spending a certain amount of time at your destination. (That and broken down vehicles and drivers with schedules so packed there’s no way they could stay on time.) I’m not allowed to take 30 or 45 minutes to do my shopping. I have to take an hour. With half-hour pick up windows, it’s not uncommon for me to be waiting outside Publix for two hours.

Now, I can wait an hour with no problem. An hour and a half gets interesting. I’m used to it. But two hours and I’m like the prisoner in solitary confinement who first tracks the passage of time with a rock and then finally goes ahead and loses it. Most people know me as a polite person who would never yell. Hopefully, those people never catch me after waiting two hours. When this happened recently, I could see the attention I was attracting out of the corner of my eye as I said loudly into the phone, “Another 40 minutes? I can’t do it! I just can’t wait anymore!” Then, after hanging up on the poor woman, I called my mom, practically in tears, to come pick me up. At first, I contemplated driving all the way home in my wheelchair. I decided against it. I’m adventurous, not death-defying.

The woman at JTA called later to tell me she’d found a solution. I could take the Community Shuttle for just 75 cents with no waiting. Since I had largely recovered at that point and all frozen goods were now safely stored in my freezer, I decided to give it a shot. I still had to get my power chair from Publix. Mom would take me there and the shuttle could bring me back.

It’s true there was no waiting. But when I saw that big bus barrel into the parking lot, I knew there was going to be trouble. This was no short bus. This was not your quadriplegic’s mini-bus. This was a full-on, mac daddy, watch-your-clearance, city bus. This was a regular bus with regular passengers, who were none to happy to be veering off route for the likes of me. I listened to them gripe and wonder where they were as we bounced down the streets of my neighborhood. I hadn’t even had the right fare (it was a dollar,) but the driver let me slide.

I read in the pamphlet later, that they will do “premium curb-to-curb service,” but it’s obviously not the norm. Those buses are ill-prepared to handle disabled passengers. The ramp was so steep the driver had to be there to make sure I didn’t fall out of my chair when I came off.

So my hunt for decent transportation continues. Dial A Ride isn’t bad, but they only service the beach and don’t run on weekends. So, if you see me in front of Publix, I’m sure I’ll smile and greet you pleasantly. Unless it’s the weekend and past the two hour mark. Then sorry, no promises.

5

T.V. or Not T.V.?

That is the question. It’s Saturday morning and I’m still in my pajamas. I plan on sitting curled up in a blanket with my breakfast and watching an episode of Top Chef that I recorded earlier. I’m over the moon about this plan. You see, I willingly placed myself on a T.V. hiatus this past Monday.

It all started when a friend went on a retreat. She’s eating and meditating. That’s it. There isn’t even any talking. For ten days. My friend is a server at the retreat, so for her there is some talking. But minimal.

Your first question may be the same as my mother’s. Why? But, I get it. I do. I’ve always appreciated quiet. I enjoy time with my own thoughts. I’m not saying I need ten days worth, but I get it.

Then I got my cable bill. $150. That’s just ridiculous. First, I placed a call to my cable company. Then, I placed a call to the other cable company. (There are only two as far as I know.) After about an hour, I learned I couldn’t get any less channels for any less money. Oh, and did I mention I have to have a DVR? When you go to bed as early as I do, it’s a must. To lower my bill, I’d have to get rid of cable altogether. Could I live without television? I decided to find out.

I planned to go without Monday through Friday. I would break the spell on the weekend. (Hey, I’m not a masochist.)

Monday and Tuesday were painless and I noticed two big benefits immediately. I found the extra time I’ve been looking for. According to the Nielsen Co. (the ones who do the ratings,) the average American watches at least four and a half hours of television a day. Now, I’m sure I wasn’t watching that many, but even if you’re just watching a couple – what could you do with two extra hours in the day?

I also found I ate less. If you’re like most people, you have a tendency to snack in front of the T.V. I do. I won’t even be hungry. But if the T.V.’s on, I’m shoving it in my mouth. Knowing this trigger of mine, I tried to have healthy snacks in the house. It never occurred to me to tackle the problem the other way around, but it worked. With the T.V. off, I didn’t even think about eating, cause I wasn’t hungry.

By the time Wednesday rolled around, I missed it. I really did. At first. But then I was fine, cause I got drunk. Just kidding. I didn’t get drunk. I had one or two (okay, three) glasses of wine. (Hey, it’s hard to count them when you have to drink out of a big sippy cup!) My mom had Frankie and the house was quiet. It was dinnertime. The time when I usually settle in to watch some rerun of  Friends I’ve seen a hundred times. Instead, I turned on some classical music and ate my dinner with the concept of zen eating in mind. Chewing my food slowly, savoring each bite. I felt very refined and cultured. And you know what? I ate less again.

By the end of the week, I was actually in to Great Expectations, a book, I confess, I’ve barely picked up since I blogged about it. But you also see how much I’m looking forward to my recording of Top Chef. I swear the anticipation is actually making me happy. I doubt I would’ve felt that way about it if I’d watched T.V. all week.

Maybe, the answer lies, once again, in balance. Cutting back or doing away with the mindless watching (do I really need to watch Gladiator for the sixth time?) and saving just a few programs I really look forward to. The cable company still wins in this scenario, though.Maybe I can get Mom to record a few things. Just something to think about. After the big game, of course.

3

Snack World

Sorry I’m a little late with this week’s posting, but Frankie and I were vacationing at Snack World (my mother’s house.) Like most vacations, this one entailed lots of relaxing, tasty treats and a general flouting of the rules.

We both enjoy Snack World immensely. Mainly for the obvious — the snacks. Like one of those old-fashioned sweet shops on Main Street, my mother keeps a colorful variety of dog treats in a see-through canister in her kitchen. Like a spoiled child, Frankie has become selective, turning up his nose at some, in hopes that the next goody pulled out of the jar will be even better.

He’s also become wise to the snack routine. In the beginning, he would paw at the side door to be let out to do his business. My mother so appreciated him letting her know when he needed to go, that he received a snack when he returned through the back door. After months of receiving treats this way, he started skipping the part where he actually went to the bathroom. It was discovered when he began pawing to get in just seconds after pawing to get out. Frankie was leaving out the side door and immediately circling around to the back door, just to get the treat.

I too, enjoy the food, though it’s challenging when I’m trying to watch my weight. Mom doesn’t keep anything fat-free or light in the house. Since I can’t cook, I often look forward to having scrambled eggs or a grilled cheese sandwich. But it’s a real grilled cheese. Not 2% cheese and I Can’t Believe It’s Not Butter. It’s made with thick bread, tons of regular cheese and you better believe it — real butter.

Flouting the rules

A different household means different rules. Forget consistency. It doesn’t exist. But Frankie’s smart enough to keep it straight. At home, I’m the mom, the disciplinarian. But there, I’m a child too, and under my mom’s roof, Frankie lives by her rules. Which is to say, he gets away with murder. He’s allowed on the bed, to beg, and to chase the cat, just to name a few. It’s no wonder he jumps up and down in excitement whenever she comes to pick us up.

My routine disappears too. My computer isn’t there so I can’t write or send emails. Usually my power chair isn’t there either, so I can’t walk Frankie. Gone are the 4 a.m. wake-ups and we all watch a late-night movie on my mom’s big screen. If Frankie could talk, I’m sure he’d be bragging to his friends at daycare about what he does on his vacations. And it’s not even summer yet.

6

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