When a loss of capability feels like a loss of independence
With MS, I'm trying to adjust to things I can no longer do on my own
I stopped driving nearly five years ago. That was probably six months or more after I should have. By that point, I was doing it mainly by using my truck’s cruise control and occasionally having to use my gradually weakening arms to lift my right foot off the accelerator and onto the brake pedal. My double vision always seemed to be at its worst when going home, so I started compensating by placing a sticker over one lens of my sunglasses so I didn’t have to drive with one eye clenched shut.
To say the least, I was unsafe.
I considered hand controls and was even taught and certified to use them, but by the time I was ready to use them, it was too late. I don’t know why I waited so long and was so stubborn in the face of change.
Wait — I think I do understand, though I’m not excusing it. I don’t think it was the convenience of driving, or the thrill of shifting through the gears of a manual transmission. I did feel more useful when I could share the burden of transporting a five-person household, but it wasn’t that either. It was that driving represented an independence and freedom that nearly all American kids can’t wait to attain when they turn 16.
Oh, the responsibilities I’ve known
I don’t think I fully realized it when I was that age, but operating a car is a big responsibility. Obtaining your driver’s license is essentially an official acknowledgment that you can be trusted to control a machine that’s capable of causing quite a bit of destruction. Everyone knows that they’ll have to give up that responsibility at some point, but there’s a difference between an accepted norm and an unexpected disease, like my multiple sclerosis (MS), taking it away.
Cooking has been another responsibility that I’ve given up since being diagnosed with MS. I wouldn’t go so far as to say I was ever a gourmet, but in all honesty, I was pretty good. I started young and didn’t realize at the time that graduating from head bowl licker to budding chef meant that Mom trusted me to handle sharp objects, heavy pots, and a hot oven. I just thought it was fun. I never looked at it as independence, but I do now — and I miss it.
I don’t miss the responsibility of cleaning as much, but multiple sclerosis has a way of making me miss that a little, too. Even by the time I had my own house, I still thought of cleaning as a tedious chore rather than an act I’d been entrusted to do independently around potentially dangerous chemicals. It’s not as glamorous as driving or serving a meal of my own creation, but in a way, it was still freedom.
I’m sure many things represent a loss of independence to those of us with multiple sclerosis, but the last thing I’ll mention in this column is yard or garden work. No one had to impress upon me the level of trust that goes with being allowed to operate lawn and garden equipment by yourself. Mowing the grass can be a chore, but as I write these words, I’m watching someone else cut my grass, and I wish I were still able to do it myself.
It’d be different if I were simply too busy to do any of these things. If I had to hire a driver, cook, house cleaner, or gardener because I didn’t have the time, that would be one thing. In my case, it’s not because I have many more important things to do. It’s a matter of capable versus incapable, and incapable means a loss of independence to me.
I drive a wheelchair now. Mine tilts and reclines, so it’s a bit heavier than most. It’s not a car, but there’s a certain amount of responsibility that goes with it because like any vehicle, it too is capable of destruction. A quick look at the baseboards and door frames around my house, not to mention one of my toes, is proof of that.
I hope it won’t happen, but I’m resigned to my primary progressive MS possibly getting to a point where I can no longer safely operate a wheelchair. If and when that day comes, resigned or not, that’s going to be another break in the wall of my independence.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Patricia Fox
I feel the same way. And it isn't just driving, cooking, and mowing the yard. I miss horseback riding, riding my Harley, scuba diving (learned that when I was stationed in Okinawa, which I'll never see my relatives over there again), playing w/ my dogs... Even typing this little bit is taking way too long. But sense of humor helps.
Benjamin Hofmeister
Okinawa? That makes you either a Marine, Air Force, or first Special Forces Group. Yes, freedom was driving, cooking, horseback riding, scuba diving, and just throwing a ball or wrestling with my kids. It hurts to know that my loss of Independence affects them too. You are exactly right about a sense of humor, even if mine is a little dark sometimes. It's the bandage for my wounds.
Thank you for reading and taking the time to leave that comment.
Ranae Smith
This article resonated with me on every level. I could have written this about myself. I use an electric chair and have left ‘character marks’ in so many places. I miss being able to pull a weed out of my flowers. Never pulled them before but I miss doing it now because I can’t. My husband has taken over so many things that I was able to do. Sometimes I’m fine with it, and always grateful, but sometimes it can really be hard to realize I can’t do the things I used to do. I don’t cook anymore, although I feel I am still able. A recipe that says prep time is ten minutes, usually takes me forty and then I’m exhausted. Bob Evans has a lot of good side dishes lol! MS definitely stinks but I’m determined to look for the blessings in spite of it. God said he would provide all we need. He does, when we can’t do what we used to do, he provides someone who can, I throughly enjoyed tour article and printed it to show others what I feel. Thank you.
Merlene Cook
When I read your articles, I relate with every sentence. I smile sometimes ( like the nicked baseboards and frames ). I used to fixate on the discolored sratches but now I hardly notice them. Bigger things to concern myself with. When I view the world sitting, my mind says I can do that in small steps. My determination wins over. Within a minute, it becomes quite clear that It was a wishful idea that should have not started. So I collapse in a safer place. I still get tempted with 5 step recipes online. My folders are full of possibilities......for someone else.
4 months ago, I gave my car away. Took a long time to reach this point. I live on the outskirts of town. My driving was to pickup someone from an auto repair shop. Then cruise control home ..lifting my leg with my hand to use the break . Until this day. At a doctor's appointment I engaged in a chat with a young man that was shaking and moving awkwardly with 2 canes. He was admiring my heavy-duty rollator/transporter. Asking about his story . He rebuilt cars and motorcycles .. his own business. One day, he was testing out a motorcyle, and was struck by car (driver should not have been behind the wheel). Bad accident that left him unable to walk, giving up his business of passion. Surgery option gave him 10% of some recovery. The impact to his brain and balance would never recover. THAT MADE UP MY MIND.. My independence or the real possibility of skrewing up someone elses life! I could not live with myself.
So good decisions are what I control. I have still have independent choices.
Benjamin Hofmeister
I'm not sure what made up my mind for me. When I would leave for work in the morning, my wife had a line in the sand. When the day came where she had to help me to even get into the car, then I needed to not drive that day. My youngest child would also pick a leaf off of one of our Hawthorne bushes and hand it to me before I got in the car with the stipulation that when I returned safe, I could return the leaf. I never failed to return the leaf, but I was coming dangerously close to it.
Making the right decision is independence. I like that! Thank you
June Patricia Turnbull
I remember well, the day I stopped driving we had just taken hold of a kitten, Claude, as the doorbell rang and the man from the garage was wanting the keys from my "really smart red little Merc" and I stood, holding Claude as MY car was driven away...tears were rolling down my cheeks not so much for car, as lovely as it was, it was the loss of independence we had not that long moved in to a beautiful barn that We HAD renovated out in the "sticks"....we both love the countryside but I may have changed my mind a little on that point. NOW, I am getting progressively worse and rely on the computer for just about everything and just the thought of anyone coming on a visit send me in to almost child-like excitement...Thank goodness for Claude is all I can say. He really does keep me going. Recent visits to GPs has really made me decide the computer and Claude really are my greatest friends I am quite swiftly now, getting worse but refuse to give in, completely...guests are always welcome and my husband's cooking has improved NO END still good with flap jack that is something I WILL NOT give up as I sit in the kitchen with equipment surrounding me...I have my husband close by just to make sure I DON'T make any mistakes as he does the oven part of the cook...So Far, we are very happy with the outcome as is me OT...one of my "pace yourself" realities for the month!!!!
AS I SAY I refuse to totally give in even if some days do seem a bit of a push to get out of bed in the morning GOT to feed Claude.... so no choice I'll carry on for as long as he needs me and he is a fighting fit black, smooth hair wonder boy!!! So, if all else seems to be passing by and things look just too much believe me I really do know that feeling....get your own Claude he keeps me going! JUNE XXX
Benjamin Hofmeister
Thank you for that comment Ranae! I like the idea of calling them character marks. I tried that this morning and my wife said that if I had any more character to our bedroom door frame, she's going to start adding character to me. LOL
Jenny
Oh my goodness Ben, I could have written this word for word. I completely understand. I feel so frustrated and angry at the skills that MS has taken from me. A big thing for me is 'tidy house, tidy mind', struggling to keep on top of my home has a real impact on me. I used to be quite house proud and now I'm just so conscious if anyone "pops buy" my home is always in a mess. I try and encourage my children and husband obviously, but they're all at school/college/work, so it's difficult. Driving is also difficult – I'm at the stage where I'm thinking of and controls – I definitely need them, but the extra cost is a bind. Though I know for my safety, (and others!) I should do it.
Benjamin Hofmeister
Hi Jenny! Beware, the driving test for hand controls was much more involved and difficult than the driving test I took when I was 16. The driving instructor took me out on a rainy day, played the radio and talk to me the entire time to give me all the distractions that might come my way. I still passed the test and have no doubt that you would too. Just don't do what I did and wait too long!
Patricia P. Garrett
I have a community that has volunteers that provide rides for those that no longer drive. These volunteers will also do some home repairs. Check out your community for those those that meet your needs.
Patricia Garrett
Benjamin Hofmeister
Hi Patricia! Currently, my wife drives me where I need to go, but my local branch of Disabled American Veterans also can provide transport. You've given me a great idea for a topic to post in the MS form. What Community Resources are available to assist people who can no longer Drive? Thank you for that!
Gilbert Parris
Thank you so much for writing such a detailed column. I can completely relate, I too have that evidence on doors and one of the walls here. Although I maintain a positive and grateful attitude, there are many times when I feel alone, despite having a loving family. Your article reminded me that I'm not. I can't thank you enough for that!!
Benjamin Hofmeister
Thank you so much for reading it! It's as much therapy for me to write it and read comments like yours as it is for you.
lj
Gave up driving 10 years ago, couldn't move my right leg fast enough and killed a cat.
Had to give up flying also because of right leg.
Cooking and baking still manage due to wheelchair that raises and modified kitchen.
Housework never did before MS such a mind-numbing job which apparently you have to do once a week, always have and always will have a house cleaner.
As to not being able to drive my wheelchair safely or not at all, had not given that a thought until your article am trying to wipe the thought from my mind.
Thank you, Ben, for your articles keep writing
Benjamin Hofmeister
Sometimes I think driving wheelchair requires quicker reflexes then driving a car ever did. Sure at the car was faster, but I wasn't trying to maneuver it through doorways and people generally didn't walk right in front of me.
I still marvel at the people who do that, or walk around me like they can't see my enormous chair. It makes me want to shout that I'm Not Invisible or inconspicuous and that it will hurt a lot if I hit someone.
The Cranky One
You've nailed it.
But it's not just about loss of independence, it's also about the loss of freedom of choice - chores like cleaning were chores but we had a choice about doing them or not doing them (or at least we did once we were no longer living in our parents abode!). Now we'd probably give anything to have back the freedom to make choices again about doing physical things, even if only about mundane things like house cleaning.
And when the things we once enjoyed doing are no longer enjoyable because they exhaust us and use up our limited physical and mental resources, we end up giving up on doing those as well, as the when the enjoyment we once got is exceeded by the negative effects of doing the activity there is no point in doing it any more....
Benjamin Hofmeister
There were once Hobbies that I was good at and people would say that I should start a business, or monetize it some way. I always replied that I didn't want it to turn something that I enjoyed into a required task, or taint it by making it a job. You are so right, MS does that with the most mundane things. Whether I was any good at them or not, or whether I even enjoyed doing them is beside the point. It was the loss of freedom to do them or not to do them that I miss dearly.
Jenn
Coping with boss of independence, and as one of the other commenters mentioned, loss of freedom of choice have been two of my biggest challenges living with MS. As for driving your wheelchair as your MS progresses, have you seen Munevo? It is a way to operate your wheelchair using smart glasses.
Benjamin Hofmeister
Thanks Jenn! I will have to check out driving with smart glasses. I've always been a little wary of new technology, especially anything "smart", mostly because I always worry about my ability to operate it LOL.
Joni Wilson
Ben, thank you for putting the angst & frustration into words vs. those little drops that moisten my cheeks at having to say "I can't anymore." One small thing is changing my verbage to "I'm unable to ___ right now."
Sometimes we need to acknowledge our upset. We shouldn't leave it there, though. We should counter our thinking with doing something that we can do and are proud of doing.
Thank you, Ben, for your valuable article of honesty & hope.
Benjamin Hofmeister
Thank you for that Joni! My newest phrase is, "I will try again later".
It motivates me and is realistic.