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. 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.
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.