Giving Up Driving Amid Memories of Independence

by Chrystie Lose, aka Twysted Sam on Wed, 2013-07-24 05:00

Chrystie Lose, aka Twysted Sam
Always topless ...
Sunset as seen from the 206 Bridge in Florida.

As we celebrated our nation's independence with the pops and bangs and rocket's red glares going on all around, I couldn't help but think of the major loss of independence I am experiencing. Selfish, I know, but it is impossible for me not to feel these losses on a deep and personal level.

About two months ago, I stopped driving. No one had broached the subject with me, there was no doctor request or even a question from anyone as to whether I was considering this, but I was. I talked about it with Dan, and we discussed my limited options (including the possibility of getting a car that was easier for me to drive). The thought of losing that level of independence is devastating, as so much about ALS is. There would be no more jumping in my little car, putting the top down and driving over to Starbucks to pick up my daily trenta black iced tea (no water, no sweetener), no more driving across the 206 bridge at sunset, no more feeling a car engine roar and respond to my heavy foot on the coastal and canyon roads I grew up with ...

I remember the day I got my driver's license. It was the day after I turned 16 (only because I couldn't convince the DMV to open on Sunday just for me). I took the test in my faded yellow early 1970s VW square back with a stick shift transmission on the hilly roads of San Luis Obispo, Calif. Getting my license was so important to me, I craved the independence and freedom in an all-encompassing way, but I wasn't willing to take the easy way out by taking the test in my mom's automatic on the flat roads of the agricultural community about 30 miles to the south of us. I aced the driving portion of the test with a 96, and I spent the next few years driving the back roads, beach roads, canyon roads and freeways of California, from San Luis Obispo to Santa Monica and everywhere in between. I cherished the freedom and truly enjoyed the ride.

Over the past year, I have felt ALS rob me of the pieces of my independence little by little, and I have made adjustments and dealt with each change, each loss. However, making the decision to give up the very essence of my personal independence driving was not an easy one.

In many ways, it was the hardest independence-related issue I've dealt with so far because it was a decision I had to make, I had to choose to give up the freedom that driving allowed me to have because I knew it was the right decision and delaying it would only be selfish and possibly dangerous.

I thought about how so many elderly people ignore the signs that their driving days should be over because the idea of losing one's independence in such a drastic and absolute way is just completely life-altering.

After knowing such complete independence for so many years, having to depend on others for every trip to the market, hair salon, Redbox, library, Starbucks, doctor appointment, or social event is humbling to say the least, and that does not include all the little drives we take just because we can (to the shoe store, the movies, the mall, the beach, for an ice cream cone, to watch the sunset, whatever).

I am so lucky to have my husband by my side every day, so fortunate he is home full time with a willingness to take me wherever I need, or want, to go. Unfortunately, it doesn't really matter if you are relying on the person closest to you or a public transit system to drive you, the loss of independence just takes something out of you, away from you, and for most of us, we will never regain that piece of who we are (were).

Just one more piece in my ALS puzzle.

About the Author

In 2012, I started the year as a 42-year-old woman with seriously curly hair, blue eyes and a growing medical concern. My speech had deteriorated to a point that made me very hard to understand. One day, while getting lunch at my favorite taco stand, I gave the name Sam for my order. Sam was easy for me to say and, hopefully, nobody would ask me how to spell it. (People are always asking how to spell my given name, which I can no longer say clearly.) So now I am Sam to the new people I meet.

Then, in April 2012, I was diagnosed with ALS. With that devastating news, Twysted Sam was born and I started this blog where I can vent, share and just be me. For all of you who are interested in my ramblings, I hope you get something out of this too, even if it’s just a good laugh or cry or whatever. So, the journey begins ...

MDA cannot respond to questions asked in the comments field. For help with questions, contact your local MDA office or clinic or email See comment policy