Cruelty and consequence: For people in chronic pain, everything counts in large amounts

By: Loolwa Khazzoom, Founder, Dancing with Pain

March 24th, 2010 • Living with Chronic PainPrint Print

Although walking and hiking have been incredibly challenging, if not impossible, over the years, biking has been one of the few activities I have been able to do over the past decade and a half, despite pain.  Of course, there have been periods that I have been unable to bike, as a result of debilitating pain in my hands, ankles, or thigh/groin area. But for the most part, my bike has been my one connection to the outside world and to my super-active life before the car crash. 

While living in Berkeley, I joked that I was half-bike, half-human, because I was always on my bike — for transportation as well as for pleasure.  I biked 9-18 miles at a shot on a regular basis, on the bike path that hugged the Bay.

Biking has been more of a challenge since moving to Southern California, mostly because the drivers here are jacked up on crack and cruising around in tanks.  But over time, I found safe routes that could take me to the beach.  And on strong days, I could bike up and down the path on the beach, in addition to biking to and from the beach.  The beach path is not as safe as the path in Berkeley, mind you, because sand and cement don’t mix particularly well. But I just bike slowly, to avoid skidding, and it works out.

The other challenge I initially encountered upon moving down here was that I live on the third floor of a building without an elevator, and the landlord did not want me parking my bike on the ground floor. I simply cannot lug a bike up and down three flights of stairs.  That activity in and of itself can throw me into a fit of pain, never mind the fact that it is completely impossible to do on days that I already am in pain.

So I scoped around the neighborhood and found a low gate, serving no functional purpose, off to the side of a walkway hugging a building directly across the street.  There was plenty of room for people to walk or wheel past my bike when it was locked to that gate.  And so, for about a year, I kept my bike locked there and didn’t receive any complaints.

The downside was that because my bike was parked outside, it was exposed to the weather, and I had to get parts replaced more quickly than when my bike was parked indoors in Berkeley – which adds up financially.  But that was a small matter compared to having access to my bike.  On good days, I biked about 15 miles.

Then the sabotage began.  At first, I assumed that my tires kept going flat because they were exposed to the hot sun or because of some other cause unrelated to cruelty.  I did, however, find it very odd that I had to replace my tires on an increasingly frequent basis.  At first, it was the front tire going flat, which simply required popping the tire off and take it to a bike shop.  But then the back tire started going flat, which created all kinds of additional complications. Lifting my bike into the trunk can throw out various body parts and leave me in pain for days, which in turn causes a chain reaction of chaos in my life.

Once, it seemed that the air had just gone down, so I pumped up my tire and successfully biked about 3 miles to a meeting.  But when I came out of the meeting, my tire was dead.  I had some ankle pain that day, so it was challenging for me to walk about five blocks in my biking shoes (ie, shoes not intended for walking), to get to a gas station, where I could pump up the tire.  Fortunately, I had the little metal converter you need to pump up a bike tire on the machine designed for a car tire.  And fortunately, my bike made it all the way back home that day.

But the next time my back tire was flat, I had no indication before leaving.  So I went on a joyride and kept feeling that something was wrong with my bike.  I stopped about three times over the course of a mile, examining various bike parts.  Everything seemed to check out, so I kept going.

By the time I reached a busy intersection marking the far edge of my neighborhood, I decided that despite my inability to find something wrong with my bike, I should trust my intuition and turn around.  As I made a U-turn, there was a loud squeaking sound, and my bike nearly fell over.  In the middle of the street.  Fortunately, I was quick and strong enough to stabilize myself.  Had I not been, that turn could have been disastrous.

My tire was dead.  And I was a mile away from home, with no gas stations nearby.  I decided to see the situation as an opportunity to test how far I could go.  I walked slowly and took a few breaks on the way.  I was very proud (and fortunate!) that I was able to make it all the way home.  I blogged about my accomplishment.

Yet again, I hauled in my bike for repair.  Doing so not only cost me financially, but also pulled my thigh/groin area, which has been a bitch to heal.  Meaning, I couldn’t bike for about a week after repairing my tire.  That of course has its own consequences.  The less I get out and get exercise, the less well I feel on both the physical and emotional levels.

About a month after this incident, I went to get my bike, only to find that the back tire was dead (again), the cable was cut, the odometer was missing, and the back flashing light was missing.  You can imagine the anger I felt when I realized that somebody was deliberately attacking my bike and that as a result of this person’s cruelty, my life was put in danger, my pain levels were jacked up, and I was thwarted on multiple occasions from getting the exercise I needed, not to mention from having access to my preferred mode of transportation. 

So I had a conversation with my landlord.  He was a total doll and installed two bike hooks in the wall on the ground floor, so that I could lock my bike on the property — which has security gates at both entrances.

Because I am weathering a financial crisis at the moment, the only thing I fixed on my bike was the back tire.  I had an extra flashing front light, which I hooked onto my back rack, for safety.  I figured I would take care of the rest when my financial situation got better.

For almost a month, I did not risk riding my bike, because my thigh/groin pain got triggered the last time I did, leaving it very challenging to make it back home.  I decided to dance a lot and build up my strength.  Last week, I was ready and super eager to give my bike a spin.  I was shocked to find that my back tire, once again, was dead.  Considering that my front tire still had tons of air in it, and considering that I had just replaced the back tire less than two months earlier, it seemed that my bike had been attacked again.

I was running late for a meeting but had to take the extra time to go upstairs, change into regular clothes, and drive to my destination.  The 40 minutes I spent commuting could have been 40 minutes I was simultaneously commuting and exercising — a multitasking endeavor I really need during this time that I am working up to 17 hours a day.

Vandalism is distressing enough in and of itself, especially when it appears to have been done by someone who lives on the same property.  But it is especially upsetting when it means shelling out money I cannot afford right now; risking jacked up pain levels, so as to get my bike in the trunk; and taking an hour out of time that I cannot spare, so that I can get my tire replaced yet again. What’s more, I kind of feel like there is no point in fixing my bike. Who knows how long it will be before it is attacked again?

Not only does this situation put me on edge and feel scary (I’m going to have to check every bike part for safety, before leaving each time), but it really throws a wrench in my ability to manage my time, my pain levels, and my active participation in the outside world.  Over the past week, I could not afford the time or potential pain involved in getting my bike fixed.  So I drove to a whole bunch of places instead – meaning that I didn’t get the outdoor activity or exercise I craved, which in turn fed the stress levels that have been through the roof recently.

And then, because the bike attack keeps happening, I have the added anxiety involved in talking about it. Will people assume that my bike keeps getting attacked because I have done something to piss someone off? Will they then blame the vandalism on me, the way that people blame patients who encounter repeated medical negligence or women who encounter repeated sexual harassment? It is so often easier to blame the victim than the aggressor or the entrenched system. Which in turn further complicates the experience of being on the receiving end of any kind of carelessness or cruelty.

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