, , , , , , , , , , , , , , , , , , , , , , , , , , ,

It started with riding that Sun EZ trike at Workshop Houston where I was volunteering. I only rode it down the block and back but that was enough for me to know that I was capable of riding, of the physical mechanics.

I launched into full-on Virgo mode, which is to say that I launched into full-steam-ahead research mode. As small as the world of recumbent triking is, it’s also rife with choices: makes and models, delta (1 wheel in front & 2 in back) or tadpole (2 wheels in front & 1 in back), folding frames or not, above or under-seat steering. There’s suspended front or rear, or both. There are hard shell seats and webbed seats; there are fixed position seats and adjustable position seats. The diameter between the two wheels matters to stability, as well as transporting, getting through doorways. The ground clearance varies, so if you’re staying on paved roads you’ll be OK with lower, but if you plan to be on trails with rocks and sticks and debris, you’re probably better off with higher clearance. Tires, smoother and narrower for faster, knobbier and wider for gripping on slippery pavement and off-road conditions. Bar end or twist shifters? And don’t even get me started with the options for gearing.

Those are just *some* of the basics. Then you have an entire new set of decisions, though the latter can be much more fun & exciting to ponder over. The big wide world of accessories!

But don’t let that last word fool you into thinking that some of what many trike-makers categorize as accessories are actually things you can ride without. Fenders and racks you can do without, sure. But a water bottle holder? Lights? A safety flag for visibility? Uhm, yeah, kind of important.

Before you get too far into deciding what you want and need, keep in mind that there are still only a handful of recumbent trike manufacturers. The low supply means high demand. I’m sure you remember what that translates into from your economics class. If you’re anything like me, you have to factor cost into what you buy. And recumbent trikes are not even close to being cheap.

Worth every penny? To me, absolutely. But still, affordable to the average person or family—the way bicycles are—far from it.

Try to imagine what a creative writing teacher at your local university or an English composition teacher at the community college earns. Cut that in half and then you’re probably close to the actual paycheck. Now, take into consideration that my husband and I just relocated back to our home state of Texas, our hometown of Houston, mid-semester, which means I missed all the application dates. Teaching, unlike most other jobs, is bound to the semester calendar; you can’t jump into the interviewing process anytime you want or need. Most college and university positions are hired only at the beginning of the school year—when, if, they’re hiring at all.

Also consider that prior to Gary’s new position at a credit union here, there were nine long months of job-hunting after his former credit union laid him off. Hence, savings depleted, living on credit cards. Can you say Financial Picture Not Rosy?

Now imagine that you’re my husband Gary and your wife, who has MS and goes about her everyday life with a mobility assistance dog, suddenly says to you that she’d like to purchase a recumbent trike. How much? Oh, they run about $1500 to upwards of $5000 new, and about $700 to $3000+ if you can find one used. “Oh, and by the way, honey, I’m thinking of petitioning the New York City Marathon to let me ride in the handcycle division if I get a trike in time to train for the race. What do you think?”

What do you think he thought?

There was a great deal of pointed silence if I remember correctly (cue the cricket-song), while Gary’s brain attempted to juggle the ideas of cost, the rigors of marathon training, the feasibility of my being able to endure the regular riding of a trike or even being able to manhandle one. How would I transport it or, heck, how was I going to manage to get it up and down the 4 steps to our house? Did I have a plan?

I did.

My plan was to save up. To scour classified ads and cycling forums. My plan was to get my hands on a used recumbent trike as soon as I could. My plan was to begin petitioning the New York City  Marathon race officials immediately, as if I already had a trike and was prepared to race with it. My plan was to act as if, and to make it so. My plan was to keep riding the recumbent stationary bike at the Y near our house and imagine myself on my eventual recumbent trike, passing up runners with New York City Marathon numbered bibs pinned to their shirts.

I ramped up my swimming laps, increased my Pilates workouts, created a log for my cycling miles & swimming laps. I started lifting light (1 lb & then 2lb) hand weights to improve my upper body strength. All of my former triathlon training experience was helpful, but the truth was that this body is barely recognizable in so many ways as being part and parcel of that former body. My body with MS seems to bear no relation at all to its pre-MS incarnation. Except perhaps in that my face is still attached to it, and therefore must be mine. Right?

Sometimes even that fact—what should be indisputable proof—is irreconcilable with the way my body feels.

The truth is that I had no good, logical reason to believe that I’d be able to ride a recumbent trike beyond anything more than recreational use. Yet I believed it completely. When Gary and many friends asked how I could be sure, why it was that I felt suddenly convicted that I could embark upon and maintain a training regimen rigorous enough to participate in the NYC Marathon, all I could offer was that I knew I could. Their expressions, the calm, careful tones of their voices, communicated to me that they believed that I believed, but they remained unconvinced.

Some people might label my unfounded belief in myself and my trike riding-and-training abilities—my NYC Marathon goal—as optimism. But in my case it’s probably much more akin to bullheadedness. Something my Scotch—Irish heritage is rather famous for, I might point out.

A couple of friends in particular were, as usual, as faithful about my aspirations as I was. And, in truth, it’s because of friends like these that I’ve grown to a place where I’m able to possess a level of unwavering belief in myself that defies logic, facts, reasonable expectation. My husband Gary is chief among these friends, I should point out. Thing is, he’s also the one most worried that I might be let down, or, worse, that I might hurt myself. He’s very well aware of the toll that day-to-day life takes on me. He’s here with me, witnessing the pain, the exhaustion, the frustration & disappointment. He’s the one driving me to countless doctors and physical therapy appointments; he’s often the one going to pick up the prescriptions from the drug store. He accompanies me to medical supply stores as I look for just the right knee or wrist brace or reusable ice packs, and to shoe stores for the “miracle” pair that will offer the perfect combo of stability and cushion to ease knee and hip pain. How many shoe inserts have I tried? How many brands of athletic shoe and hiking shoe and street shoe and clogs with ergonomic fit & design? (If you need comfortable shoes, ask me, I’m an unofficial expert!)

Gary knows better than anybody in my life what it’s like for me to be on a never-ending quest to find products—from clothing to furniture to cars to electronics to medical supplies—that will ease the symptoms of MS (or its treatment) to bring the slightest bit more comfort, or simply stave off the detriments of pain and fatigue just a mite longer. You never realize how expensive it is to be unhealthy until you are. And I’m not even talking about the medical bills or the medications themselves, right now. I’m talking about all the rest of it. If you have no clue what I mean by “all the rest of it,” it’s a fair bet that you’ve not spent any great amount time with an illness or disability.

The purchase of a recumbent trike was another in a long line of things sought out to cater to an MS-laden lifestyle. Could I get by, live my life just fine and dandy without it? Of course. But how much of a difference might it make? And would that difference be worth the expense? Those are the real questions of consideration. Gary and I have had to contemplate those questions often over the last decade. Let me give you some points of reference, a handful of examples—in explanation for why life with a sick and/or broken body is a costly enterprise. Let me also say, right up front, that I’m incredibly blessed to have these choices to make. As rough as our financial picture has been at various points (mostly due to my not being able to work and Gary’s career working in the nonprofit world of credit unions) Gary has always been of the belief that we should make it a priority to have whatever we can afford—within relative reason, of course—that would make my life easier, more comfortable. Even without him thinking this way in regard to making my life less painful, I was—am—the luckiest wife on the planet. The fact that he believes in investing in products that hold the promise to make my life with MS better makes me so damn fortunate that I’m humbled by his devotion over and over again.

Except for the nine months Gary was unemployed while job-hunting last year, he’s always had a good, steady job. So while many partners, I’m sure, are of the belief that their significant others deserve to have what might make a difference to their pain-level (which affects *everything*), we have been blessed in that we’re able to afford a lot of what we decide to try. I’m of the firm conviction that the reason many sick and/or disabled suffer with depression, are prone to addictions to alcohol and pain meds and other substances, and the chief cause many others resort to suicide – is because to be ill and/or disabled with little-to-no financial resources that might alleviate the symptoms of one’s illness and/or disability is the most helpless, powerless, hopeless situation one can experience. Being held hostage, physically and psychologically and spiritually abused by your own body—by your own self—is a misery I wouldn’t wish on anyone.

(Well, OK, I lied. I personally think if we reserved unmedicated, untreated, uncomforted illness for those who abuse animals, children and the elderly, that kind of abuser would be all but eradicated. But that’s a whole different story entirely. Back to this one.)

Some examples of what we’ve chosen to make my life with MS easier:

The first thing was pretty easy to figure out and fairly affordable. The higher the quality of shoes I buy, with the most cushion I can find, the less the strain on my knee and hip joints. I mostly wear Clarks, Dansko & running shoes. I’m also a big fan of Keen, Born & Earth shoes. I used to wear Asics (and still love the ones I have!) exclusively because they were the most supportive I’d tried. Then I was turned on to Brooks at my local Whole Earth Provision Company (can you say Incredible Customer Service?) a few months ago. I hesitated to even try on the pair the sales guy was suggesting because the color combo was startling, but I’ve really given up anything close to being fashionable because when comfort is the priority, you learn that fashion lags back. Way. Back. Once those Brooks were on my feet I could hardly believe how good they felt. Still, those little wonders are not cheap. I have three pairs now, all bought on sale. I found a couple pair in quite palatable colors eventually. If there’s a running shoe out there with more cushion, let me know. I’m always in the market for more comfort!

Seating. I’m a writer and a teacher. I spend a lot of time sitting at my computer desk. We tried, literally, dozens of office chairs. Eventually one of us—I can’t remember anymore which one—saw an ad for a ridiculously expensive chair in a magazine, Levenger I think it was. Too much! I said. And then we saw one of these wildly overpriced office chairs at a home show. I sat in it. Oh my gosh, it’s so comfortable! I said. Gary said, OK, let’s get it. I said Too much! He said Not if it means you can sit longer and write more. If it lessens your pain, it will pay for itself in no time. Of course it didn’t actually pay for itself—where did that expression come from anyway?—but that chair was worth it. My butt is sitting in it right now as I type this, five years later. I love this chair. Come to think of it, I should name it. Anything that’s this comfortable to my aching hips really does deserve to be named. Henry Miller, the chair’s creator, calls it Aeron. But given the over $700 price tag it had when we bought it, I think we’ve also paid for the right to rename it. (Feel free to submit your suggestions)

The chair was such a resounding success that we then began to consider what kind of difference a better bed might make to my sleep. The average person pays $30 – $50 for a pair of shoes, about seventy to a hundred bucks for her office chair and around $250 for her mattress (according to Google). To cater to my MS-body, I pay roughly 2-3 times the average for my footwear, a whopping 10 times more for my office chair, and, as it turns out, 10 times more for my mattress as well. Do I still suffer from pain-induced insomnia? I do. Less of it because of the better mattress? Undeniably.

When I began graduate school I was commuting 45 minutes each way to Florida International University. If only I could sit in the relative comfort of my Aeron chair instead of the miserable cushionlessness of my car’s seat. The pain produced by the long drive back and forth set me on a quest for the Henry Miller designed version of a driver’s seat. Which meant lots of test-drives at Car Max, where I eventually realized that sports cars have more supportive seats than many so-called luxury cars. Both of which are, of course, expensive. Nothing was quite right though; I was the Goldilocks of Car Max. Until the salesman recommended that I go to a nearby VW dealership where he’d heard that the latest version of the New Beetle could be ordered in a sport package with seats offering more cushion, adjustable lumbar support, even heat. After a mile test-drive in a New Beetle with the special sport package seats, I was hooked. Money well spent, indeed. But my point is that I couldn’t get these seats without the extra cost of the sport package, and these seats were unique–new to the current year’s line of models—so I couldn’t find one used in an attempt to save money buying a pre-owned vehicle.

OK, my last example. My computer. Special ergonomic keyboard. Special monitor. Apple makes the most user-friendly monitor and software for someone who needs to work with large fonts and still be able to view the entire document at once. The ergonomic keyboard is about arthritis in my hands and wrist, elbows and shoulders. The Apple monitor and software is about accommodating my visual challenges. It’s no secret that Mac costs more than PC. Not only do I spend a lot of time writing creatively, I was a graduate student and then a teacher—which meant I was pretty much tied to a desk, chair and computer for the three years of my MFA program. The money spent on this Mac with its kinder-to-arthritis keyboard, large monitor and easier-to-see-clearly Word docs has been a genuine sanity-pain-vision saver.

I really do know of what I speak when I say that illness, injury, disability are costly conditions to accommodate. Gary and I had a good deal of experience saving up and spending more for items of better quality that would make life better and easier. The idea of buying a recumbent trike was a little different, in that I obviously don’t need a three-wheeled recreation device. I swim and do Pilates, ride the recumbent stationary bike at the neighborhood YMCA. So the issue, really, was about *how much of a difference* this trike might make to my life. Exercise is important. And exercise that doesn’t cause this body more pain is always of interest. No, I didn’t require a trike, obviously. But my desire was great. I just needed to divine whether it would be worth the price, given our financial state. Given past experience, I knew that if I absolutely believed a recumbent trike would make a positive difference to my life, that it would enhance my health and contribute largely to my happiness—Gary would be on board. After all, he’s the one who created in me the knowledge that I deserve whatever we can afford (within reason) to lessen the effects of MS.

Everybody deserves that. What we can afford varies. But cost aside, there is the matter of worthiness—not whether the thing desired is worth the price, but whether my comfort, sanity, sleep, joy—is worth it.

That other worth, self worth, is an area I’ve always struggled with, and it became an even more fraught battle with MS in the picture. There’s something about being ill, tired, in pain, often unemployed, etc. that tends to makes you feel less-than. So if you already felt less-than before the sick, tired and so forth, it can be hard to imagine that you’re worth the $100 shoes or $1000 chair or $2000 recumbent trike.

Especially if you’ve not yet ridden a trike more than a lap up the street and back!

My goddaughter was visiting us this summer, so we packed up and made a road trip from Houston to Austin, where the closest dealer of recumbents lives. Mike at Easy Street Recumbents (if you live in driving distance, Easy Street is THE place for recumbents; if you don’t live in driving distance, I say it’s worth the trip!) asked me lots of questions, gave me the low-down on different models and set me off to test drive. The first trike that I rode was my favorite of what they had for me to try—a Catrike Expedition. I piloted it around the parking lot of the shopping center and warehouses where the bike shop was located, got brave and trekked across the street to a neighborhood and took a few spins up and down the hilly streets. I’m not quite sure at what point it began, but I was flying on the downslope of a tree-lined road when I suddenly became aware that I was crying. From happiness.

Utter, unrestrained joy. Freedom of movement. Powering myself, my own body, through space. Going really fast. Like, zoom fast. Like,  Speed Racer racecar vrooming noises inside my head fast. In fact it took a concentrated effort to not make the vroom-vroom noises out loud.

It was that tempting. I was having that much fun.

Might I remind you that fun, in my life, doesn’t happen in terms of fast, quick or zippy. I cannot even walk briskly without the help of my mobility assistance service dog Luke. Scenery hadn’t passed me by at that pace without my being in a motorized vehicle in, well, I can’t remember how long. I was flying, people.

F L Y I N G.

My body hadn’t suddenly become healed or unbroken. I was still experiencing pain and fatigue. But not so much that I couldn’t still pedal—push one foot forward and then the next—making the wheels spin and cover ground at a lively clip. The movement, the speed itself—and knowing that I was generating that speed—allowed the notions of myself as sick, disabled, slow, damaged, left behind and far-from-athletic, to fall away, back by the cement curb I’d bumped down to take to the quiet streets of that neighborhood.

I’ll never forget that first real ride on a recumbent trike or the neighborhood I cycled through, because I felt healthy and whole and unbroken—I felt ABLE and STRONG—for the first time in over ten l o n g years.

The recumbent trike I ended up with is an ICE trike, a 2006 QNT—chosen because it has a folding rear-section to make transport easier, adjustable seat for changing up pressure points during longer rides, and rear suspension. In general, ICE products are far easier to upgrade, and that was important to me. But the adjustable seat, the folding mechanism making for easier transport, and the blessed rear-suspension—along with the incomparable reputation and customer service—are the highlights of why I went with ICE. I have chosen well, my friends, if I do say so myself!