Friday, August 28, 2009

Don’t call her a bitch

I’ve said it before – cancer is a bitch - but not only is the disease way worse than that, it actually gives a bad name to all the real bitches out there . I have a lot of strong-headed lady friends, so I know what I’m talking about in this department.

I found Livestrong by accident. I was on a page, trying to measure out how far I went on one of my first rides this summer when there was an ad banner for the Livestrong Challenge in Philly. “Go ahead, pick a fight” it read. Sure, I had heard of Lance Armstrong, his foundation and I had definitely seen those ubiquitous yellow bracelets floating around, but I always thought it was some elitist jock thing – a club to which I would never belong. But something compelled me to click on that link and read more about the LS Challenge, and LAF itself. I joined livestrong.com (different from the .org) and created a profile – using it to help me lose some weight and get into shape.

There were different length rides to choose from, but I was still riding my boys’ size mountain bike at the time and had never ridden with a group before, so I was a little intimidated about signing up to ride – but I did see that they needed volunteers. I saw that as my opportunity to get involved and contribute to something that I so believed in. My pops is fighting cancer, and I was doing it just as much for him as for myself. You see, I am my father’s daughter to a “T” (is that how you write that?) and with the medical history of my family, I have to be very careful.

I signed up for a few shifts on Friday and on Sunday, the day of the ride itself. I showed up on Friday to help assemble the goodie bags that participants would get upon check in with some coupons, trial products and advertisements from big sponsors. The volunteer coordinator, I think her name was Lindsay, was organizing two tables of mostly moms and kids who were working in an assembly line – each one adding a new piece to the stack and passing it down. Since I didn’t bring anyone with me, I volunteered to be the one cleaning up garbage and restocking cards and supplies to each of the two assembly stations as they needed it. It worked out perfectly because I am skilled at opening and breaking down boxes with pocket knives and didn’t have to be sandwiched between two kids who would wonder who the hell this beefy lady was and why she didn’t know anyone.

Also, I got this awesome t-shirt (also pictured above)which had to be washed because it was a million degrees out on Friday and I was running around and sweating my buns off, and I had to wear this shirt on Sunday:

I got to PowerStop #2 on Sunday about a half-hour later than I was supposed to (if you know me, you know that this is par for the course) but lucky for me, the ride actually started later than scheduled and I didn’t miss anything. Of course, being late also meant that I had no idea what I was supposed to do and too embarrassed to ask anyone. Did I mention that I was late because I was partying the night before and was hung over? Way to Livestrong, Cattio, I thought to myself, and desperately wished that I got more coffee.. I was alone again and didn’t know why I was here.
PowerStop #2 was one of eight total stops on the 100 mile ride where riders could come in, stop at a portapotty, grab a bite to eat, drink, (not necessarily in that order) bring their rig over to a mechanic or see someone at the medic tent for a wrap or some Bengay.

The stop I was stationed at (click here for the course map) was located right before the route splits off, and if you’re on your way back, right after it comes back together. It was located on a gradient, which means that on your way into the course, you were going uphill, on your way back from the course, you had to cross traffic on the downhill to get into the stop.

The folks who gathered at this stop cheered like hell when they saw the first chunk of riders to come up the hill. I was clapping, still hung over, not much for yelling or cheering yet. After a small pile up right at the mouth of the stop, one of the volunteers began directing traffic to get riders to go up and park their bikes at the rack instead of just stopping in the travel lane. For more than afew minutes, it was absolute mayhem.

After the knot of riders thinned out, the woman who was directing traffic needed to go do something else, so someone asked me to step in.

“Are you working here?” she asked.

“In theory,” I replied.

She explained what I needed to do and I went out and cured my hangover with heat, sun and soon – screaming. It didn’t take long for me to find a groove here. I realized that this would be the last rest stop for riders on their way down to the finish, and for most of them it was a hilly, ugly course. (For accounts of the ride itself, visit FatCyclist – Elden, aka Fatty, is an amazing writer and I have been following his blog for a few months now.)

The lady who was running the show (I think her name was Maureen) over there was from UPenn, they sponsored the PowerStop. She wondered how I, completely alone, came to volunteer at their stop. I just picked something off the list, I said. She smiled with surprise and said she was happy to have me.

I thought everyone could use a cheerleader at this point. I clapped so much, so hard that the next day the knuckles on the palm of my left hand were swollen and painful to the touch. I yelled so much, things like, “good job, rider! keep it going, rider! come on in, rider!” anything to keep these guys and gals encouraged.. I recognized some people coming down who I saw going up, someone wearing an Eagles jersey who was really a Giants fan (poor guy, I asked him if he lost a bet, oddly he said no). I saw a bike messenger sporting a full beard, sporting his Chrome messenger bag – looking fully out of place amidst a sea of bright colored spandex and lycra.. When I saw him coming back down I pointed and yelled, “yeah! there’s my messenger!” and the biggest smile unfurled across his face.

I also pissed off some locals. See, coming back down was really dangerous for these guys because they had to cross traffic on a hill, so I got out in the middle of the road with my hand up to oncoming traffic until a line of riders passed or ducked into the PowerStop. One lady who was trying to get in to see her son as he passed almost ran over myself and a guy named Dan who was helping me – her Volvo barreled right over the orange cones we had set out on the grates at the mouth of the entrance, a cone got wedged up under her bumper and it took a few minutes for a volunteer to dislodge the thing. She crushed the cup of water I had sitting there on the asphalt. I was happy it wasn’t myself, Dan or a rider she decided to run over. By the way, her son didn’t show up at the stop for another 40 minutes or so, so she stood there, eyeing up the road – I hope she was embarrassed – she could’ve killed someone.

The whole time leading up to the Livestrong Challenge I was thinking, I’ll volunteer this year and ride next year. I thought that I would love to be able to pick a fight with cancer by rocking the century. Except something changed my mind: riders were saying thank you. A lot of them. “Thank you for being here,” they would say. “Thank you for volunteering.” and I said, “you’re doing all the heavy lifting, thank you for riding.” I think I might continue to volunteer next year – do the exact same thing I did this year because by the end of the day, not only was I pretty damn good at it, but I realized it was one of the most rewarding things I’ve done in a long time.

Thursday, August 27, 2009

Kennedy Healthcare and Americans with Disabilities

Dear readers, I promised a column about Livestrong, but that will have to wait until tomorrow. Instead, I am pleased to present the first guest blog to the digital ink projekt, penned by Cliff Perez, a social worker and care advocate for the disabled in New York's Capital region:



Although the debate of health care and health insurance reform has been pondered for many years, the one voice not being heard is that of our brothers & sisters with disabilities. However, the one exception to this silence – who himself is silent now – is the most honorable Senator Teddy Kennedy, who legislatively spoke for and on behalf of, Americans with disabilities.

Recently, we have been inundated with news about angry citizens who have been speaking forcefully as to how they dislike much of what is being proposed to reform health care. This is why it is imperative that the voice of Americans with disabilities be heard and more so now that we have lost our great champion in Senator Kennedy.

What is the one thing that Senator Kennedy wanted while going through his own ordeal with his disability – cancer? He wanted to have the “choice” to go back to his community, his home and be surrounded by his loving family. It is this “choice” that Americans with disabilities also want, we want to be able to have the ability to “choose” where to receive our care and we want to receive those services at home, in our own community. These were the ideals that Senator Kennedy voiced on behalf of our citizens with disabilities, by introducing and supporting legislation to reform our health care system that is structured to favor institutional health care rather than providing such care within their own community.

Paramount legislation toward achieving this goal has been cosponsored by Senator Kennedy, known as the Community Choice Act (HR 1670 / S 683) which would eliminate the current institutional bias that forces people into expensive facilities, rather than providing services at home.

Nursing facilities and other institutional settings are an expensive and outmoded means of providing needed assistance to seniors and people with disabilities. Not only do incredibly few people actually want to live in nursing facilities, but there has also been much research clearly demonstrating the cost benefits between providing long term services in an institution or providing such services within the community. Regardless of any other arguments about access to health care or cost containment, it is apparent that ending the institutional bias, which overwhelmingly and disproportionately impacts Americans with disabilities, will contribute toward cost containment within our health care system.

To insure access to quality medical services in the community, Senator Kennedy introduced, Promoting Wellness for People with Disabilities Act. This legislation mandates the U.S. Access Board to establish minimum accessibility standards for diagnostic equipment in medical and dental clinics. It also calls for disability cultural competency training for healthcare and dental professionals. This bill speaks to his continued commitment to meaningful health care reform on behalf of people with disabilities. Ending the institutional bias in our health care system is essential if our senior citizens and citizens with disabilities are to have a “choice” to live in their community. However, in order to thrive in such a community, people with disabilities must also have access to proper and quality medical service while living at home.

So, I call upon our Congressional leaders; let us not walk away from this opportunity to honor the ideals and beliefs of one of the greatest legislators of our times. Let us not – because of his absence – allow all that Senator Kennedy struggled for within health care, to also die! As Civil Rights became a testament for his brother and our President, John F. Kennedy, ending the institutional bias within our health care system should be Senator Teddy Kennedy’s testament to his passion and commitment toward ensuring that the voice of Americans with Disabilities is heard!



Clifton Perez, M.S.W. Systems Advocate

Independent Living Center of the Hudson Valley Inc. (ILCHV)

Website: www.ilchv.org Email: cperez@ilchv.org Tel: (518) 274-0701

Wednesday, August 26, 2009

...just like riding a bike.




At the urging of a book I wanted to get for a friend, but instead borrowed for myself from the library, The Lost Art of Walking, I dabbled in pedestrianism. The first walk was a long one, three or four miles. It felt good to stretch my legs and get some fresh air. It was almost the end of June, the weather was picture perfect on the days it wasn’t pouring, and I had been on the couch too long.

I went for a few long walks like that, exploring the surrounding neighborhood and nearby college on foot and quickly decided I wanted to go faster. I pulled my bike out of the shed. Dexter, I called it: a 24” boy’s mountain bike. Fire engine red. Red Cross red. Candied apple red. And though it was undersized and heavy as hell, it’s the bike I bought last summer in an effort to not deal with the parking annoyances of Albany when gas was $4.50 a gallon and I was sufficiently chubby to supply pedal power. I immediately loved it, and had worked my way to taking it up to school at SUNY twice. Last September not only was it starting to get too cold to ride (I didn’t know about gloves or arm warmers yet), but I was riding stupidly and took a spill. Thankfully nothing was broken, but in addition to road rash, I bashed my left knee into concrete – and in such a way that made it hurt and click just as badly as my right knee had been for years, after so much reckless kicking as a field hockey goalie in high school. That was pretty much it for my riding last season.

I don’t know how to explain it but something about riding that bike around in Ewing, the town I lived in from birth to the summer before third grade – and now again at *cough* thirty, that sparked something in me. Maybe it was all the sunshine, maybe it was the awesome loop around TCNJ (I still call ‘er Trenton State in conversation) but I think I fell in love. Soon I was plotting courses in Pennington and had designs on pedaling my ass to Washington’s Crossing State Park. I usually wouldn’t go out for a ride until my mom was on her way home from work so that my dad wouldn’t be alone for too long.

My dad has cancer. Stage four metastatic pancreatic cancer. He was diagnosed on Oct. 31, 2007 and he’s still fighting today. Most of the time, I’m home with him, helping out when he needs me (he doesn’t get around too well, long story), running to the store or taking him to doctor’s appointments. I’m not working right now, so that’s sort of my job – and while I’m happy for it, getting out on the bike is a perfect way to channel my stress into something good and healthy.

It also didn’t hurt that the beginning of July saw the start of the Tour de France, and that amazing dude I had heard so much about, someone whose name rhymes with Vance Barnstrong, was coming out of retirement at 37 to ride it. Finally! Watching those guys glide over the Alps was pretty awesome, and learning about stage races, strategy, etc gave me something to focus on – something that felt like freedom instead of claustrophobia. So I’ve been out riding and riding. Finding roads I’ve never been on, state parks I had never heard of and just pedaling my butt off as a form of exercise, stress relief and adventure.



After much studying, and hemming and hawing over my personal finances, last weekend I bought a new bike. I decided on a hybrid-style bike from Specialized. I really like the stability of thicker tires, but wanted them to roll fast on the road. So awesome – right out of the gate it cut three minutes off my lap time around the college. I named it Dingo, cause it doesn’t looks gender neutral and I want it to eat mah bay-bay (haha.. chubby girl’s weightloss joke).

Unfortunately, there was only room for one bike on the back porch (that’s what she said!) so after stripping Dexter of a few items which were transferred to the new bike, he had to be put out in the shed. It was then that I understood why a cyclist has feelings of guilt when he brings home a new rig – like he’s cheating on his old bike with this newer, different model. I think after a while I’ll donate him to the Trenton Bike Exchange or World Bicycle Relief. They’re both worthy organizations that do things I believe in.. I think I’d like to help locally – and Trenton needs all the help it can get. I think I might volunteer over there first and check it out. They need someone with a truck to transport bikes from Point A to Point B.

I have a truck, I can transport.

Which dovetails nicely into something I've been thinking a lot about. I believe that bicycling has helped to make me a better person, although I'm not certain just how.. Now, this is not to say I look down on other people - no, never.. it's not anything like that. It's just made me realize that life is about the journey just as much as it is about the destination.

If you actually took the time to read this, I thank you. I don't know what this blog is going to be about, a little bit of everything, I'm hoping.. Tomorrow I'm going to write about my experience volunteering for the Livestrong Challenge in Philly this past weekend.