“Our life always expresses the result of our dominant thoughts.” ~ Soren Kierkegaard
The aggravating thing about multiple sclerosis is the social isolation it begets. As if society has forgotten about me. It’s just so hard to fit in when I can’t drive, I get tired so fast, and going to the restroom is an adventure.
Sometimes I can feel so alone, especially when I’m surrounded by a group of able-bodied people. This is particularly hard at parties and gatherings. My limitations cause me to feel isolated. Normal conversations turn awkward and most people just smile and wave but fail to engage with me like a “typical” person. I’ll sit in the middle of the room and people will walk by me like I’m not even there. So, since I just can’t do normal things, it’s as if I’ve just disappeared. Gone missing without a trace.
I think the problem is related to the lack of understanding for what I am going through. It is so misunderstood that most people shy away from spending time with me. They’re not sure how to treat me or what questions to ask.
The good part is, I have experienced the total opposite reaction when I come in contact with people who are on a similar path as me. I always seem to have a great time. I find myself talking for hours and usually making some new friends.
Now if only I could figure out how to get the conversation going with the “able-bodied” people I run into.
And sometimes it’s good to have that “cloak of invisibility”…Beggars tend to walk right by me and accost the person behind me.
But I hear you. And I hate hearing “oh, my friend/sister/brother/cousin/XXX, has MS and s/he runs marathons. You’ll be fine”. Most people are kind and I know they mean to encourage me.
I’m not fine and my diagnosis (progressive-relapsing) is still recent enough that I’m emotional about the daily changes in my well-being and such unpredictable capability.
Still working on the daily adjustments to my “new normal.” Still working on the social behavior invoked when I’m staggering, falling, losing common words, knocking things over, and using a cane.
I sometimes feel like hiding. Can’t tell if it’s better to be ignored than to be the center of the public pity party.
Hello girlfriend I been lil busy last few days great blog as usual. Much love and hugs from miles away
You are so go at putting the topics out there that some of us are afraid to mention for fear of hurting people’s feelings. I totally agree. I’m not in a chair but the minute I started using a cane. People act like they don’t see you. It is upsetting and I think is the reason I hate to go out so often. I suffer with using the motorized buggies at the store just because of the way people act. We say I don’t care what people think but deep down we do. I finally have started using them and my shopping experience is so much better. I’m not so tired when I’m done. I thank you for your honesty. I love reading your blog. May God bless you.
Nicole,
Another insightful blog about MS that reaches your heart ! I walk with a cane and often everyone wants to talk to me about it whereas I feel as I should be an animal in the zoo. I guess that is why the blog is called my new normal ! Society needs to accept all our eccentricities, hidden or evident ! Love your blog !
I feel like everyone is looking at me when I am walking around with a cane. You’re right, strangers do talk to me and others want to give me a ride.
Thank you for sharing this. My beloved hubby deals with the same. I am going to read this piece to my family this evening. He has shared the same thought with me in the past. It is hard to put into words, but you have done well in doing that.
MS is a disease that is hard to explain, let alone try and put it into words.
Blessings from Texas!
Phyllis kee
Thanks for sharing. Houston? I hear Oprah will be there soon’
I agree that the wheel chair or scooter acts as an invisibility cloak. People talk ‘around’ us. However, I was determined that I wouldn’t become the ‘loner’ at social functions, so I often take the first step. If I see someone I know, I go to them and strike up a conversation. They soon discover that I’m still the same person I always had been, just with some added accessories. Try it the next time you’re in such a setting, and see if doesn’t work. Don’t let the disability rule your life — you have too much to offer the world!
Another post that captures perfectly another challenge in fitting into the able-bodied world. I’m curious, though. I noticed the Soren Kierkegard reference in your tags. I know the author but is there a particular reason you referenced him?
Judy,
No reason. I read quotes and sometimes I use them just because I like them. No other reason.
Hello Nicole,
A very informative description of your dilemma – I believe you are right – people see a wheelchair and their minds are flooded with questions, strange notions (if you can’t walk, maybe you can’t talk either?), discomfort, even fear. Fear, of what if that happened to me? What if I say an insensitive thing? Can I talk about my latest vacation or my ski trip? Would that be wrong or awkward? So many questions – it is easier to wave and walk on by.
But even my posting this you are breaking the isolation cycle. Please continue.
When I was still able bodied, I saw a guy at the zoo. He was around 40, nice looking, and riding a scooter. On the back of his scooter was a bumper sticker that said, “My other car is a cane.” I am generally shy and don’t speak to strangers, much less disabled strangers. But I was compelled to tell him I loved his bumper sticker. We struck up a conversation and he told me he had the sticker special made for exactly that reason. It was an ice-breaker. Maybe we all need to come up with some sort of ice breaker.
I love it! What a super idea and that is sure way to have people talk to you