Adapting to life without driving: Navigating the gap between gas & brake pedals
World’s tiniest violin: I can run, jump and play, but my brain injury—resulting from frequent neurosurgeries and radiation therapy—prevents me from differentiating the gap between a gas and brake pedal. 🎻
Three months ago, I voluntarily resigned from driving. This decision was sparked by the unsettling reality that I could no longer differentiate between the gas and brake pedals. Challenges resulting from a third and fourth brain surgery in the left parietal lobe were mounting, and fallout from radiation therapy targeted toward the same area were starting to show their effects. I felt I should not remain on the road in my current state.
What has followed is a rollercoaster of emotions. A complex interplay of gratitude for the support I have received from friends, and a crushing sadness associated with the loss of my autonomy.
Left parietal lobe damage
It’s important to understand that my problem is not with my right foot. Rather, it is with the area of my brain that controls my right foot: the left parietal lobe.
According to WebMD: "When the parietal lobes sustain damage, they may have difficulty reading and recognizing people and objects and may even experience trouble remembering bodies and limbs... For example, precise hand movements become more challenging when the left parietal lobe is damaged. This can result in difficulty with writing and drawing. Left-side parietal lobe damages also result in issues with mathematics and language disorders.”
Not driving
The effort involved in not driving 100% sucks. I 10/10 would not recommend.
Coordinating rides, relying on others, and the cost of frequent ride-sharing services have created a maze of challenges. Guilt over needing assistance, and frustration stemming from meticulous advanced planning, have become constants in my daily life. I now better understand why older adults fight tooth nail to hang onto their car keys despite concerns from their well-meaning adult children.
Trying everything
From a medical standpoint, the journey to regain sensory and proprioception loss in my right foot has been disheartening. Endeavors such as acupuncture, undertaken with hope, resulted in discouragement this week when the technician revealed the very low probability of success. Hail Mary searches on PubMed for “acupuncture” “sensory loss” and “glioma” yielded zero results. The realization that some battles may be futile adds an additional layer to my emotional toll.
Adaptive driving technology
On the driving front, I've discovered hand control devices—a type of adaptive driving technology—as a potential lifeline. Paperwork for a driving evaluation, a $725 evaluation fee, and hours of driver's training paint a slow process. The costs for driver training run an additional $1,200-2,000, depending on how quickly or slowly I take to the process… if at all. The fear it might not work, coupled with anger over the overall cost, weighs on my shoulders. Subsequent expenses for adaptive driving technology, installation fees estimating anywhere from $10,000-$20,000, added vehicle insurance coverage, and the regular maintenance required for these tools makes me want to quit before I even begin.
Pros & cons over driving
I’ve been weighing the pros and cons of adaptive driving versus alternatives.
Adaptive Driving
Pros: Potential regaining of autonomy, increased independence, and a sense of achievement.
Cons: High costs, extensive training, and ongoing maintenance.
Hitching Rides
Pros: Immediate solution, financial savings.
Cons: Dependence on others, limited spontaneity, and potential strain on relationships.
Attempting to Drive Anyway
Pros: Attempting to reclaim independence.
Cons: Safety risks, potential legal consequences, and strain on mental well-being.
“Driving is a privilege” & not a right
The prospect of regaining control over my mobility fuels my determination to undergo the adaptive driving process. However, the realization that adaptive features are not covered by insurance—medical or otherwise—highlights the societal belief that driving is a privilege rather than a right. This view dates back to the U.S. Constitution over the “freedom of movement” and a right to travel throughout the states. However, it is state laws that govern who is authorized to operate a motor vehicle.
From what I’ve been learning, health insurance programs (regulated by states) do not include financial coverage for people with driving-related disabilities. This means that those with the greatest access to financial resources and time will be among the few who can reap the benefits from adaptive driving technologies. What worries me is that others in society are left behind, or worse, take to the road anyway out of need, while also potentially putting the public in danger.
“Those with the greatest access to financial resources and time will be among the few who can reap the benefits from adaptive driving technologies.”
Interestingly, the belief that driving is a privilege and not a right appears specific to the U.S., and access to adaptive resources is not as limited in European countries. That said, I am sure Europeans face their own unique difficulties.
Note: I am a novice on these concepts and apologize for inaccuracies in my interpretation of law.
The price of autonomy
Despite anger over the lack of insurance coverage for adaptive features, a belief in the value of autonomy afforded by driving keeps me pushing forward. As I navigate this path, I can see myself advocating for and contributing to policy changes that challenge the perspective that driving is a privilege, and possibly helping make adaptive driving options more feasible for those facing similar challenges. However, before I assume anything, I must immerse myself in the experience as a person with a driving disability. And that first step may involve admitting that I have a disability in the first place.
In the end, I have combined feelings of gratitude for the support I have received so far, and sadness over my loss of autonomy. Cross your fingers with me as I embark on this journey, hoping to not only regain control of the steering wheel, and perhaps drive change in societal perceptions and policies about driving.
A special thank you to my incredible driving team over the last few months, notably Kerri, Amber, Pam, Jennifer, Debra, Meredith, and Joanie. Brett does most of the driving, but thanks to their help he is allowed respite. I hope I did not forget anyone. ❤️
