Sharing the lessons along the way…


2013-07-26 21.09.47Yesterday alone, I had two random people who didn’t know me from Adam, ask me about my cane.  Well, one asked if I had the cane because I thought it looked cool.  The other flat-out asked me what was wrong with me that I needed to use a cane.

The first one was easy.  My cane is a standard issue medical supply cane that is far from cool looking.  I laughed, commented as much and simply shared that the cane helped me to walk better.  That seemed to be enough and then the guy was distracted by my dog Duke.

I wasn’t prepared at all for the second one.  I no more than stepped inside the door of a restaurant with a friend I hadn’t seen in a while, and this guy says, “What’s wrong with you?”   “What do you use that for?”  Taken aback, all I could say was that it helps me walk.  That worked earlier in the day, so I figured what the heck.

It wasn’t enough, and while they were seating us (we chose to sit far away from this guy), he was still trying to ask me questions about my cane and why I was using it.  He too had a disability of some sort, but it wasn’t the time or place to engage him in that conversation.

My friend and I laughed about this later on during our meal.  None of it bothered me, although I did feel badly that I couldn’t engage this very blunt man in a discussion about mobility issues.  It seemed odd that both happened within hours of one another.

Back in the early days of the illness when I was in the wheelchair so quickly, I was saddened to realize that what people saw first was my chair.  Couldn’t they see me first?

I had a lot of trouble letting go of that idea the entire time I was in the chair.  Part of that was that I couldn’t really see me first because of my sensitivities to being in the chair.  Last week, it is possible these incidents would have upset me as well.

Yesterday was the start of a new week.  New rules.  I was surprised a bit by both of these interactions about my cane, and found them significant enough to share with you.  There are so many parallels with what is happening now and when my illness first started.   I find them interesting to note.

I wasn’t upset at all yesterday.

Quite frankly, I wasn’t upset by much of anything yesterday.  On tap today is another intrathecal baclofen decrease.  I am interested to see just how much better I can be present this week than last.

Anyone taking any bets either way?!  😉  Ha!

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Comments on: "Did he really just ask me that?" (6)

  1. Hi thetawney.
    I was very excited to find your blog as I was given a clinical diagnosis of PLS after a 10 day stay in hospital just 2 weeks ago at the QE in Birmingham, UK. I wondered if there’d be anyone blogging about PLS. I was an avid blogger on my photography blog until recently when my symptoms got a lot worse and stopped me going out to take photos during breaks from my job.
    Isn’t it strange how people react to us. Just a few days ago, I was asked from a distance of ten feet away in front of colleagues “so Miles, is this condition of yours going to shorten your life then?”
    Open plan office, I front of people who might not have even heard that I had PLS.
    I’ve also had someone say “now that’s attractive” sarcastically about my crutches lying on a desk…..hmmmm not very pc

    Hobbling around my local town since my diagnosis, I was amazed at just how many people there were with obvious disabilities. I would love to join a disabled flash mob and see the reactions of able bodied passers by.

    Looking forward to following your blog.
    Take care and good luck for the future

    Miles

    • Hi Miles,
      I am glad you found my blog, but am sorry to hear about your PLS diagnosis. I love your vision with your photography and know that you will figure out a way to use that as you adjust. It is a challenge to not take personally the comments that you have shared. I wasn’t great at it for a long time. We’ll see how great about it I am as I go through the adjustment process this time.

      There are support groups online…the Spastic Paraplegia Foundation here in the US (link on my sidebar) do a lot to raise funds for research specific to PLS and HSP.

      Take care Miles!

  2. Don;t know why but the word ‘disability’ seems to apply, especially, to your second character and, to a lesser degree, the first.
    Whereas, i would describe yourself as merely (but not insignificantly) ‘challenged’
    on an emotional level. These others seem to display an inability (disability-if you will)
    to function well in polite society.
    I hold no degrees in these areas, but i don;t think you need one to see that it is their
    issues that require more scrutiny.
    Noticed that you led this tale with a photo of your true pals – nice touch.

    • These two back to back were pretty funny–in each their own ridiculously inappropriate ways. In another time and place (seemingly a different life) I would have been far more sensitive and upset about it. 🙂

  3. Miss & Love you Tawny ! Very insightful and inspirational…Pure Tawnyness 🙂

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