It’ Not Fair, I Can’t Reach The Oh Shit Handle!

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Time travel can be a way to connect and build relationships with people. In this blog, I will be talking about what my transportation experiences have looked like with ALS and my disabilities. However, before we do, let’s take a trip down memory lane. I remember the first time I got into a car with my drivers permit.  As a joke, my father put on a motorcycle helmet, looked at me and said, “I am now prepared to teach you how to drive!”  I laughed so hard, I almost peed my pants!  Looking back, he probably was pretty smart and realistic. My first car was a manual stick shift.  If you have ever driven stick shift, you know there is a learning curve to having smooth transitions between the gas, clutch and gears. After several months of practicing my Mario Andretti skills, I officially passed my drivers test in 1988 at the age of 16.  I couldn't wait to get behind the wheel of the car and experience the feeling of independence.  When I think about it now, I get the feeling of nostalgia; all the fun I had with my friends and family going here and there.  I also believe the motorcycle helmet my father brought while teaching me to drive was a premonition because he knew I had a restless soul.

In my youth, my daredevil days prevailed when having my automobile license wasn't enough.  I pursued my motorcycle license in 1990 and began riding my Kawasaki Ninja “croch rocket” for a sense of a thrill. Now, fast forward to the present day.  I remember the exact moment that I had to stop driving which definitely was not an easy decision for me. However, whether or not it was an easy decision, it was very clear to me as to why I needed to stop driving.  While driving to work on the country roads of Lancaster County, Pennsylvania, I drove past several young Amish children riding their scooters to their one room schoolhouse.  I could feel my arms getting weaker, and I was having difficulty holding the steering wheel.  A horrific thought punched me right in the gut.  If I lose control of the steering wheel and I hurt one of these beautiful young children, I will never forgive myself.  So that was it.  I made the decision to stop driving, and I never looked back.  Stopping driving wasn't for me, but it was for the protection of others.  Please don't be stubborn and keep driving if you are not medically safe to do so. 

However, because the thought of losing my Independence was so devastating, I kept renewing my license for several years even though I wasn't driving.  There was just something so painful about turning in my physical license. It wasn't until November 2024 I surrendered my license to the DMV and switched it to a non-driver ID.  It was a very sad day for me, especially when the DMV employee stamped, surrendered license, on the bottom of the paperwork, scanned an image of my license into the computer and then took my physical license and shredded it right in front of me. It was like a piece of me died that day, even though I hadn’t driven in two years. It was all the memories that were connected to my driver’s license that I grieved at that very moment. 

Needless to say, I was pouting about it.  I reached out to my daughters explaining how upset I was.  As always, I can rely on my children to help me with my perspective.  My one daughter said, “Mom, you have one business day to pout and move on.  Think about all the memories you have told me you have already made and the new memories you will make moving forward when people are driving you where you need to go.”  Sound advice to me.  We all need to be told we have one business day to pout from time to time.  My other daughter proceeded to tell me I am now a princess passenger which I thought was funny and would be a great idea for a bumper sticker. Princess Passenger on Board! 

Now, let's get to the oh shit handle part of this blog.  When I stopped driving and I needed to rely on other people for transportation, it took on a whole new  experience getting to my destinations.  First, as I mentioned, I was completely sad, and I needed to grieve the loss of my independence.  Secondly, it is like being in a car for the first time with a teenager who just acquired his/her learner’s permit. Maybe I, too, should have taken a motorcycle helmet along with me!  Everyone drives differently.  Some drive slowly while others drive fast. Some are on and off the break or gas or break at the very last minute.  Some drivers have road rage and are constantly yelling at other drivers en route to my destination. Some drivers keep missing turns. It truly is like being in a car teaching a teenager to drive.  The only difference is I can't reprimand my driver who is so graciously willing to drive me somewhere.

Every car has a handle at the top of the passenger window which I always called the oh shit handle when I was teaching my girls to drive.  So, now here I am with all these new drivers and an oh shit handle visible to me, but I have no capacity to grab it due to my disabilities when I feel like I'm about to be thrown through the windshield, or at an abrupt stop, or we are too close to the car next to us, or inches away from the mailbox along side of the road. For some reason, it feels totally wrong to see the oh shit handle but not be able to use it.  It’s like some sort of sick joke.  I also want to recognize that I have had many good drivers as well.  

Let's talk about music with my fleet team.  I have listened to every genre of music from Death metal, Pop, Rap, Christian and Classical.  Some drivers play music really  loudly which makes it difficult to hold a conversation while some play music softly, and others drive with no music.

Being an adult passenger with disabilities comes with all sorts of logistics.  For example, people are used to buckling in children, but rarely do they buckle in adults. Let's put it this way, I've gotten groped so many times in the chest by my drivers trying to buckle me in or out.  If I had 100 bucks each time this occurred,  I'd be a millionaire by now!  I use a sense of humor to alleviate the tension by telling them I loved it, and it was the best action I've had in a while.  They always laugh, and we move on.  

Not only is groping an issue, I can't begin to tell you how many people hit their heads on the doorframe when they're trying to buckle me in and out. Every time this happens, I pray that they don't knock themselves out because I won't be able to unbuckle my seatbelt or reach my phone to call 911 for assistance if they are passed out laying on the ground. Sometimes I have a fear of being in an accident and not being able to buckle myself. Talk about feeling helpless! OK, let’s move on.  

Now the type of vehicle can also be interesting because of logistics of getting in and out.  One time I had a friend pick me up in her “cool ass” jeep which I was excited about until I realized it was going to be a challenge to get me up and in especially since I am only 5 foot 2, and the jeep was pretty high off the ground. In this situation, my friend had to grab my ass and just shove me up into the passenger seat.   I never condoned ass grabbing previously, but on this day, I did think it was funny.   I told her I haven't had my ass grabbed like that in 30 years! We laughed the entire way to our destination.

When the vehicle is too low, I need someone to pull me up and out of the car because of my leg weakness.  During these times, I pray that I don't fall flat on my face. My other drivers have vehicles that are higher off the ground have invested in a stepstool so I can safely use one foot at a time to get up into the vehicle.  I'm sure PT/OT would advise against this.(I no longer do this it is not safe due to my balance issues).  Then, there is that perfect Goldilocks vehicle where it's not too high, not too low and it's just right!  Although it is devastating, losing my independence has a bright side, such as having many conversations with people I would never have had if I was driving by myself. Travel time is a way to connect and build a relationships with people. If you are someone who can no longer drive and are grieving the loss, please think about what there is to gain!

12/21