The Difficult Decision to Give Up Driving Because of Complex Regional Pain Syndrome

I can remember when my father sat my grandmother, his mother, down at the table and told her she needed to stop driving. He was worried about her safety and the safety of others. She was increasingly getting more dangerous as a driver because she would get distracted, forget where she was, drive too slow, and so on. I can even remember a day when I was riding with her, going along at 30 mph when she suddenly stopped in the middle of the road to admire someone’s garden. Cars honked their horns and passed us furiously. I gently tried to tell her over and over again to keep driving, and eventually she did. While I knew Dad was right to take her keys away, watching her expression and reaction was heartbreaking. We were taking away one of her personal freedoms. It was terrible.

Right then I swore no one would ever take my keys away. They’d have to rip them away from me.

From the time I learned to drive my dad’s manual pickup, I loved driving. In high school and college, going for long drives on back roads was my way of releasing stress. While long road trips would bore most people, I never tired of them. I drove from Missouri to North Dakota, an 11-hour drive, by myself after my junior year in college and enjoyed every second of it. Watching the scenery, feeling the tires beneath me, and listening to the radio made being in my truck one of the best feelings in my life.

When my complex regional pain syndrome took away my ability to ride horses, going for drives became the next best thing. I taught myself how to drive safely with one arm and how to hold the wheel so it wouldn’t stress my bad arm as much. Being able to drive made my quality of life significantly better than it might have been without driving. I told myself over and over that no matter how bad the pain got, I would keep my keys. No one could take that freedom from me.

No one took my keys away. In November 2014, I made that choice myself. My CRPS was centralized in my right arm but had recently spread into my left arm, ribs, neck, and right leg, making it the pain more disabling. The feeling of the vibrations as tires glided over the road surface became unbearable. Driving on gravel roads felt like my bones were being crunched together. The pain would often make me more irritable behind the wheel because I would just want to get home faster so the pain could ease up. I was also experiencing strong muscle spasms and tremors that made holding the wheel steady difficult. By the end of even a 15-minute drive on smooth roads, my whole body would feel smashed, numb, and stiff. I would be slumped over at the wheel, excruciating pain radiating throughout my entire body. I knew if I was to be in a wreck, the pain would be even worse. It was time.

I am proud of my choice, and I hate it every day. Being able to drive was one of my greatest personal freedoms, and now it’s gone. I never dreamed this would happen — at least not until I was an old woman. Instead of putting my keys away at 90, I put them aside at 22.

Relying on others for rides is humiliating at times. I feel like a child again. I can’t go anywhere alone. I can’t take my service dog out in public to work on things as much as I want to. My need to go into town for something has to revolve around the schedules of three other people. If none of them can help me, it means I don’t go. If a friend wants to hang out, they have to come to me. We live far outside the city, so walking isn’t an option. Public transportation doesn’t come out to where we live. Riding as a passenger is still painful but not as bad as actively driving.

I hate being so dependent on other people. For me, that is the worst part about this disability. I desperately miss the freedom that came with being able to drive anywhere, at anytime. I don’t get out as much anymore, as a result. Gone is the ability to escape the world for a little bit, listening to good music and just watching the trees flash by. Gone is that sense of freedom.

Now I know how my grandmother felt that day my dad took her keys away.

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Thinkstock photo by Aris Su