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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Being truly helpful by Margaret Lombardi


edriscoll

After spending most of my life challenging myself with physically demanding activities - I became attached to a cane 15 years ago after back surgery.   Following surgery, I spent months believing I would fully recover. Then during a follow-up visit, the doctor cleared his throat, multiple times, and said, "You mean no one's told you?"  I won't bore myself or you by repeating all the details of the rest of that conversation, except to say - no, no one had told me.

canes.jpg.dead8a458f4ef9ff8106b0a1d4544344.jpgSo, fifteen years have passed.  After much urging by my husband to get something more attractive, in year seven, I finally replaced the metal hospital cane. The old cane was part of the web of denial I had spun around myself. To replace the "temporary" hospital cane with a more permanent one meant a permanent condition.  You get the gist.

Anyway, I have moved on and mostly adjusted.  I say "mostly" because after the original adjustment to being disabled from my back, I had the additional job of adjusting to life after dysautonomia - a little something I picked up after my second back surgery in year nine.  Still, I have enjoyed myself during the past fifteen years and I have refocused on the things that I can still do instead of the things I will never do again. I keep a quote by Stephen Hawking in a frame in my home. He said - “My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well and don’t regret the things it interferes with.  Don’t be disabled in spirit as well as physically.”  I take this advice very seriously.

 But when I think about adjusting, there is one thing that I will never manage to accept - how a portion of the world has adjusted (or not) to me. A while ago, I was having lunch with my friend in a local restaurant.  We were having a great time catching up and having "girl time." In the midst of our fun, an older man (a stranger) approached our table and just stared. When I asked him what he wanted, he said, “What's with the cane?  Did you fall or something?"

 When I didn’t answer right away, he went on to say, “Oh, I just ask because you look too young for a cane and I thought you might need some help."  Keep in mind, I am 48 years old, so “too young for a cane” is lost on me. And beyond that, I was eating lunch at the time - not trying to run out of a burning building!  So being in need of help at that moment was lost on me also. I must have looked less than appreciative, because, after a few vague offers to help, he then said in a scolding tone, “I am trying to be sympathetic," and went off in a huff.  My friend was horrified and felt my embarrassment as people at nearby tables stared. Did I mention how loudly he offered his help?

We enjoyed the rest of our lunch entertaining ourselves with comebacks for next time. Feel free to come up with your own, but, here were our favorites:

1.  Oh, this?  I carry it for protection.
2.  Oh, I hurt myself during extremely athletic sex - thanks for asking.
3.  Don't tell anybody but I just carry it to get one of those pretty blue handicap placards for my car.  

I wish I could tell you that this was an isolated encounter with one rude man, but it's not.  It has happened enough times that I have lost count - it happens in supermarkets, at meetings, airports - in fact, anywhere.  And when I do not give details - frequently, the person asking refuses to let it go. They may turn it around to indicate that they only ask because they want to help or offer sympathy. They imply that I am rude not to thank them for their concern.

I am perplexed by this. Why would people think that asking intrusive questions is allowable when related to an assistive device? Would that same man have thought it acceptable to ask about other things he notices looking at a stranger? Would it be okay, to walk up to a bald man and say "So, why are you bald? Was your father bald too?" Would it be acceptable to walk up to an older person eating dessert and say “Too much sugar can lead to Type II Diabetes, especially in older people, did you know that?”  Of course not. Most reasonable people would know that questions like that would be considered very rude and embarrassing in some instances. So, the difference seems to be related to the device.

Perhaps these people think they are asking about the device, not the person, so it's allowable.  They fail to see that the device is a part of the person’s health record, not to be shared with strangers.  Also, the device, whatever it is, is a part of the person’s permanent “look.” All the time - everywhere. Drawing attention to the device as a curiosity is intrusive.  It may be embarrassing and it may exacerbate any feelings of self-consciousness that the person may already have.

That day, in that restaurant, I'm sure that there were other people facing chronic conditions or illnesses.  They enjoyed their lunches despite more hidden conditions like diabetes, HIV, high blood pressure, colitis, heart conditions, etc.  Just because a person has a wooden appendage or some other device, it does not make it acceptable to ask personal questions that are clearly tied to their health.

On behalf of all of us who go through life with canes, wheelchairs, oxygen, leg braces, etc., I offer a reflection. If people would examine why they are asking, before they ask, it might save everyone some discomfort.  Curiosity is not a reason to intrude even in the guise of helping. When I arrived home that night, my husband heard my story and pointed out that the man was trying to "reach out" and "trying to be nice," - he believed the man just "felt sorry" for me.  That may be true, maybe that was his intent. But the real truth is, all he accomplished was to interrupt my lunch and make me feel bad.

I appreciate immensely when someone sees me struggling to balance my cane while carrying groceries and trying to open a door.  The good Samaritan who runs up and grabs the door for me is a hero. And the person who offers me a seat at the DMV when the line is long is a saint. Those are the things that folks can do when coming across a person who wears their medical condition on their sleeve.  

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Edited by edriscoll




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