Driving and Independence

One of the major goals I have always associated with living with Multiple Sclerosis is “to try to keep as much independence as possible since MS tries to take it away”. Over the years MS has tried really hard to take away my independence in one way or another and I have tried really hard to hold on to it. Sometimes I managed to persevere and stay king of the hill but sometimes MS would take that title away from me and adjusting to that new reality would be difficult for me. I found that accepting that new reality was even more challenging. But I always managed until lately; lately I have been “stuck”. You see, I never really sat down and thought about how much of a blow to my independence losing the ability to drive would be so when I randomly lost it to a newly developed nystagmus I was completely unprepared. It was totally like not knowing how much you use something until you lose it! So now I am struggling to accept this new life where, as a 26-year-old male, I feel like I have been stripped of so much of my independence.

That feeling of freedom

I used to love to drive. I had a friend growing up who moved to Barstow, California which is in the absolute middle of nowhere. It was roughly 100 miles away averaging about a 2-hour drive through the vast nothingness of the southern California desert. Just brown as far as you could see in any direction. I visited him every weekend and I loved it. I felt like I was leaving all my problems and all my sources of stress behind for just a little while. I could watch them slowly disappear in the rearview mirror! Plus, during the drive, there was not much to do but think. About everything. About nothing. About whatever! Because of this, I could almost completely give my undivided attention to my thoughts which made solving a problem really easy for me. I found it almost therapeutic. But no more of that. I no longer have that kind of escape. The freedom of knowing I could hop in the car and go anywhere whenever I wanted or needed. Now I almost feel “trapped” inside my house because going for a walk is not always an option nor is it anything like being able to drive. It’s been over 2 years since I last could drive and I still have not adjusted to this; I don’t know how to accept it as my new “normal” like I have with so many other things.

Getting around

Getting around. That is what I miss the most. Waking up to find there is no more coffee creamer in the fridge and being able to set the pot, run to the store to grab some creamer, and be back when the coffee is hot and ready. The days of being able to just “run out really quick to grab something” are over for me. Now if I need something it’s an entire process of trying to find someone who can give me a ride and then usually having to “schedule” it for another day or even a weekend. Like booking a flight a month in advance just to pick up something simple at the store. And then what should have been a 10 minute run to the store turns into 30 minutes of shopping, a quick stop at the bank, and 15 minutes stuck in the drive through because in the mind of my ride it’s like, “hey, if I am going to leave the house I might as well get all my stuff done plus? It’s lunchtime”. But it’s exhausting! I just wanted to run to the store to grab some water really quick not embark on some quest! Even more exhausting is that I can never get a ride somewhere during the not-peak of the day. I used to get my shopping done early in the morning before people were even awake because it was how I avoided overstimulation, stress and ultimately fatigue. Now it seems any trip to the store I can get turns out to be on a Sunday at noon when everything is the craziest causing me to just want to get home and lie down.

Feeling guilty

This problem, of course, carries over to all my medical stuff. Scheduling a ride to an appointment is so stressful now because I often feel guilty for making someone have to take time off work in order to drive me to and from an appointment. Because of this, I tend to not schedule appointments I know I need because no longer can I just run to the doctors whenever they have an available appointment. A doctors appointment now involves me trying to coordinate schedules with everyone so I can try to pick a day that one person can drop me off and another can pick me up. So forget going back to physical therapy! No one has the time to drive me to and from those appointments several times a week! I know I need it but it’s just so unrealistic. And where I live public transportation kind of sucks and isn’t really an option for me when most the year is between 80 and 110 degrees outside! It would be different if those buses had actual A/C instead of a crappy fan that blows warm air at you that smells like whatever sticky cleaner they use to wipe down the plastic seats every day.

I miss being able to drive. Having lost that ability has majorly impacted my life in a negative way and like I said, I am still currently struggling to come to terms with this. Maybe if I lived somewhere in the city where I could just walk everywhere because everything Is so condensed rather than spread apart (like here in the desert) it would not be so bad but I swear, it seems like in my area of California? Not having a car means you are screwed. And I can’t afford to call an Uber every time I need something!.. What I need is to win the lottery so I can hire a personal butler/chauffeur to take me wherever I want exactly when I want to go.

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Comments

View Comments (14)
  • Susan Elizabeth
    11 months ago

    I stopped driving in December. I have no control or strength in my left leg but was doing fine driving since I only use my right leg/foot to accelerate and break. Altho I think I was starting to notice a delayed response in my right leg too.

    I always thought I’d have to quite driving because I could not physically drive…e.g., if my right leg was dead like my left is…

    The real reason I stopped driving is I need more and more help once I get to my destination.

  • Matt Allen G author
    11 months ago

    The reflex bit is what REALLY scares me.. I am sure they are still nice and fast compared to the population but WHAT IF??

  • LMcCB
    2 years ago

    Matt- I empathize with how horrible this is for you. At your age, this is not what your life should be like. I am so sorry you have this nasty disease.
    Does your area have Access? It’s an affordable shuttle system for disabled and elderly people. Check it out. It’s not ideal, but it would give you some independence from relying on others for rides.
    Self-driving cars are here…Maybe your days of “driving” solo are not over. It will be awhile before consumers get their hands on them, but someday…have hope.
    Peace and love. Stay strong.

  • Azjackie
    2 years ago

    I like all others used to love to drive. Now I am limited to errands on good days, ordering online, and special programs offered by my grocery store. For me driving goes hand in hand with walking. There both extremely difficult and sometimes impossible.

    I find driving extremely difficult if I am hot and tired. Take 2 years ago as an example. I had three errands in the heat of Summer. I was pulling into the garage my foot fell off the brake onto the accelerator right into the washer and dryer next to the water heater partially out into the backyard. After completing a body inventory I shut off the natural gas and water main to house before closing the garage door in complete embarrassment and humiliation to crawl to the phone and report to my insurance company and contractor. Fortunately damage was limited to the garage so the contractor quickly arrived and restored gas and water to the house so I could remain in the home. 2 months later all repaired with new appliances.

    Heat, tiredness, and my previously broken right ankle/leg by a drunk driver have completely taken the fun from driving. Now I limit to errands, staying cool as possible, and creeping 1 or 2 miles an hour even stopping frequently to get in the garage. I have even been known to park outside the garage wall-walk inside, lay on sofa or floor to relax until ready to come in the garage.

    No driving for me unless I feel capable.

  • potter
    2 years ago

    I still drive but not as much and I have really cut down in the summer, like CA Kansas has really hot summers. Even though I have a air conditioned car the 105 days do a number on me. I think it is the getting in and out of the car, carrying grocery bags ect that causes the heat problem of brain blitz. This summer I am going to run errands early, I usually work in the garden first thing. Not planting a garden this year problems with a fungus. Good luck to everyone with the upcoming heat. Potter

  • Matt Allen G author
    2 years ago

    I was going to say, “do everything as early in the morning as you can!” If I could still drive I would do everything I could at like 5 in the morning!

  • clsuhre
    2 years ago

    I still drive routinely in town. But found out the hard way I can no longer handle 5 hours behind the wheel. (At 3 hours, I was ready to collapse, and still 100 miles from my hotel reservation.) If I’m tired in the driver’s seat, it is hard to control which pedal my foot is aiming for, and how hard. There are so many “worst case scenarios” but I think a definite front-runner is hitting a pedestrian because I’m not in control of my body. You might think I’d fly because driving is problematic, but managing the airport is worse than shanghai-ing my hubs or son to handle the car.

  • patrice59
    2 years ago

    People ask me if I’ve found things to do and I say yes, but it is a qualified answer. I can go when my family takes me. I am grateful to have such a wonderful family, but if push comes to shove then what I want to do is jettisoned unless it is a medical appointment. Social activities that are in the evening are almost always a no-go. I love where I live, but cannot take part in all the various activities that are available. Paratransit is only available in the city limits and we live outside. It is a problem that will require a lot of thinking to try to solve.

    Matt, as hard as it may be to do, you may want to consider moving somewhere that has a more benign climate. Of course that means figuring out if there is medical care and services that you need too. It’s not an easy issue.

  • JanK
    2 years ago

    You are sounding completely overwhelmed at the moment. My prayer for you right now is that you can step outside of the room you are in right now, get a change of scenery even if only a moment or two or three, take some deep breaths and exhale, relax, repeat. Listen to some special music that usually calms you down or paint or color a picture. For a quick booster for myself sometimes, I go turn the television on to PBS childrens programming and watch the children play and laugh and sing together. I always feel better when I can hear little children laughing. I even have a child’s giggle as my ring tone on my phone. I love it, and it freaks some other people out when they hear it. Somedays I like that reaction too! May peace find you today.

  • jennyb
    2 years ago

    I hate not being able to drive too. It takes away so much independence. I was by myself, without my husband, for more than a year.He is back home now and drives me around. While he was gone I did figure out the para transit system so could make it to pt. I also needed my blood checked for the INR, and a myriad of doctor appointments. I was sometimes out and about for 4 out of 5 days a week. I got my groceries by delivery, so that was good. My husband is home now but he has no idea how difficult it was. What should take 15 minutes took at least half a day.

  • Dimitri
    2 years ago

    Yeah. It’s amazing how our concept of time has changed. Everything takes so much longer. And, at least for me, the act may not take longer, but the organization takes up all my mental energy.

    I have all my appointments in my phone and I can only handle one thing each day or my mind fizzles out. It’s so annoying.

    I got a virus in my phone that forced me to reset my phone to the default factory settings. I lost all my appointments and calendar. Wow. That sent me over the edge. I had a complete mental meltdown.

  • Matt Allen G author
    2 years ago

    I COULD manage with public transport IF I did not live in SoCal where our temperature are like 80-110 degrees most the year. Our busses don’t have A/C or anything so yeah… But you are right, things that should take 15 minutes take AT LEAST half a day now.

  • BaltoRic
    2 years ago

    Matt, I feel exactly the same as you. Driving is definitely something I took for granted. I depend on my in-laws for PT appointments during the day, but I do feel so dependent I really miss meeting friends for lunch or just hanging out. I wish self driving cars were mainstream/cheaper. I’d sign up to get one in a heartbeat. -Rick

  • Matt Allen G author
    2 years ago

    I wish I could afford to just Uber around every day or something… It’s so hard for me to find a ride during the week because everyone I know works all day! Driving is just one of those things we all take for granted…

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