P.D.D – Public Display of Disability

On Tuesday of last week I got some disturbing news: someone invited me out.  OMG

Let me be clear; in my pre-stroke life, in my ‘abled’ life, I was what is currently refered to as an introvert.  I was not anti-social but not social.  I always thought I was a loner but when you title, you classify and when you classify you have to break things down – make them complicated by acknowledging specific traits that qualify for each new classification. I prefer to do without titles but now I am a sort of mix of recluse and introvert.

It all went down on Facebook.  Ah! That dreaded thing that doesn’t really exist yet somehow manages to simplify friendships enough to give the appearance that an actual relationship of any sort  actually does exist in the real world.  So there I was, making one of my random, Hey I’m alive don’t forget about me posts and the first comment was an invite…to dinner…with like 15 other people.  I felt my chest tighten, my physical being assuming the position of one frozen internally by fear. I then casually accepted the invite knowing that hundreds (how I managed to gather enough people to constitute hundreds of ‘friends’ I will never know) of people would see…stupid Facebook.  The dinner would take place on Thursday.  I had two days to emotionally prepare myself.
I made it almost through all of Tuesday not mentioning the anticipated dinner to Kasper who I knew would let me work myself up into a frenzy just so he could keep me home.  By the end of that night, however, I was so frazzled I thought I was going to have a heart attack!  So many things ran through my mind and it was all happening so fast!  It was March of 2011 that I had lost control of half of my body and since then I have not been alone out of my house.  I am always with my husband, his mom or my mom (when she’s in town).  I have not seen one friend outside of my house and I have only been invited out once and I was still pregnant so it was easy and quick for me to find a long list of reasons as to why I could not accept this one invite out.

I was overwhelmed by fear.  What if I lost control of my left body?  It is not a unfathomable situation as I have been caught in public in that very predicament before.  Luckily, I was with people who knew how to help me; what if I was not so lucky this time?  What if my left mouth couldn’t contain the food I tried to eat?  It doesn’t happen at home but I had yet to eat in public since the stroke.  What if my cane got in the way?  What if I quickly became a burden that instilled a sense of regret in everyone for inviting me?  What if I creeped everyone out because I am now a 30-year-old crippled mom of two and the last time they all saw me I was a very healthy and active 27-year-old mom of one.  Oh, did I mention this dinner was a get together with my former co-workers?  We all retired or quit.  I had sooo many worries and those I listed are just a few.
I knew I had to go, though.  I didn’t care who was going because I wanted to see them or was curious about their present lives.  I just needed to see what I was capable of around people who I used to know.  I needed to know if I could trust myself without my husband by my side.  I needed to know if I could handle social situations again.  I needed to know my limitations.  I have stopped pushing my boundaries a long time ago.  I have stopped trying to edge out my limitations like they were pizza dough and I don’t want what little I had pushed for to slowly move back to the center where I will become a blob of…yeast. Ugh.  No, I had to go and Lord, was I scared!
I didn’t care about rekindling old friendships because honestly, these people were never my friends.  The woman who invited me along was never my friend before, just a co-worker.  We talked a lot at work, I helped her a lot with her job because somehow mine was never enough for me.  I was curious about the looks and the questions I might receive by/from her or anyone else.  I was curious about how and if I would try to steer the conversation towards me, my life and my story.  I was curious to see if I would talk politics when I know no one likes to talk politics.  Is it possible to simply discuss politics?  I think not.  Every thing is debatable because it is all opinions.  None of us “regular civilians” really know what the hell is going on; we can only speculate.
I wondered how I would get in and out of her car.  What kind of ramp or steps did the restaurant have?  How big is the curb in front?  Would I have to walk from her car to the door; would it be weird to ask her to drop me by the door?  Would it be crowded?  What kind of seating would it be?  What kind of flooring is in the restaurant?  Is it that slippery slate stone stuff? The answer, unfortunately, was yes and I thought I was going to die (the floor caused no incident).  *gasp* What if I had to pee and no one was available to escort me to the restroom?  The answer to that was simple: I limited myself to one measly glass of clear soda that I didn’t even finish.  What if I sweated so bad that I got that powerful adrenaline stink?  That happens to me a lot when I leave my house now.  It happened that night…that was unfortunate because these old ladies are huggers.

   I almost flaked, my usual counterattack when presented with such fearful predators such as socially comfortable people.  But I remained strong and I decided to take a most unusual recourse: honesty.  I told my ‘friend’ my fears and she told me to be quiet! She told me it wouldn’t matter, no one would laugh or stare or point and if I fell, they would be there to help me up. That brought on two new fears that had somehow managed to escape me.  What if I fell?  And, one most non-cripples tend to allow elude them: what if they babied me?  Only a person with any sort of disability that is hindering them in one aspect or another can understand how dreadful it is to be babied because of that disability.  It is an undertaking for the disabled to remain calm and respectful when you really just want to yell “Leave me alone! I know what I’m doing!Even if I don’t know what I’m doing, I like to try before I am assisted.  In retail they train you not to assist the handicapped in any way different from how you would assist a ‘regular’ person.  I guess it’s for this same reason.  I know I’m not normal in appearance because of this hemiparesis but I’m not abnormal.  I do like to feel somewhat regular.

I discovered a lot on Thursday night.  Cheddars has delicious nacho appetizers, for one.  I can handle myself without my husband, though I may want to continue taking it slow before I become all super independent.  Independence, even on this small a scale is a blissful thing.  Pushing limitations despite the gnawing fear inside is a liberating experience.  I also learned that as a person, I really haven’t changed as much as I feared nor as much as I hoped.  The stroke did not humble me the way I had thought it might have.  I knew I would never know the answer to that until I was in a group of women with gossip light on our tongues.  I did not receive the answer I hoped for but I guess it’s no big deal.  At least I am still me and that will probably never change, I should just embrace it.  I also discovered that when I am in the right environment, as it was with this group of women, I can be loud and as sociable as I needed to be when I worked with these ladies.
What didn’t happen was I didn’t fall and I was only babied at the end when we were all leaving the restaurant.  Three women decided to help me down the curb not knowing they were actually increasing the risks with each hand they pressed to “stabilize” me.  I only talked politics and my stroke/hemiparesis twice each, all times quite respectfully (amazingly) and appropriately.  I only drooled a little but I don’t think anyone noticed and I didn’t say anything that was rude or mean-spirited or could have been taken easily out of context except for once but this was something I would have found awkward no matter what.  The hostess of this gathering used to be a rather large woman; I would say she was comfortably large, whatever that might mean.  Presently, she is startlingly thin.  I think she may have been sick for a while.  No idea how she lost that weight.  I didn’t say anything at first glance knowing it wouldn’t come out right (I guess my brain-mouth filter is experiencing some regeneration).  I pondered it through most of the meal and as we were leaving, I casually told her she looked amazing after we did the whole “It was great to see you again” thing.  She exchanged a look of stifled something with her daughter (also a former co-worker) that made me feel instantaneously idiotic.  I felt like I missed something and was unsure if I insulted her or something…I have no idea.

The most important thing I learned, because I am so selfish and self-centered, I now have a list of goals to bring to my doctor once my medicare kicks in and I can go back to physical therapy.  I want to get rid of my brace or cane, one or the other wouldn’t matter.  They both get in my way.  Since I have drop foot, I’ll most likely have to keep the AFO.  But if I could lose that cane then I could at least use my free hand to hold my left arm down since its spasticity keeps it jutting out, allowing it to get stuck in doorways or punch people as I walk by them.  It’s not fun to be hemiparetic like myself but sometimes…you know those people could use a random punch in the back or stomach since they aren’t respecting my space, ha!



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