“Something to Talk About”

Winston and I Miss Wheelchair MA “13

I know quite a few people with some form of social anxiety. I also know first hand that just like many forms of anxiety. There is a very broad range of its severity in different people, from somewhat minor to pretty much debilitating. There are people who do not like to be in crowded places, such as concerts, stores or even larger gatherings of people. In some cases, the anxiety can cause paranoia (people are looking at or talking about, me).

My son’s 5th Birthday Party ’08

I, however, never seemed to face this type of anxiety though, which I have always considered a blessing. My comfort at being in the limelight so to speak has been a great help to me as a person with a disability. My transition from an able bodied teenager to a disabled wheelchair-using adult was most likely made easier by my love for meeting and talking to people. Paranoia aside, when you are “different” (falling over a lot, 20 something using a walker, or using a wheelchair), you are being looked at and talked about. If you happen to be even more outlandish like me, then you start adding more things to your entourage: service dogs, kids, and believe it or not more people with disabilities. Now the spotlight comes on, people are trying to figure out what’s “wrong” with you, and how are you connected to these people.

My Mom, myself and My Sister-in-law

I am a sarcastic person and often use humor as a way to deflect, as I think many people in similar situations do. When I was younger I would joke that it was my beauty or smile.  In some ways, it’s true, smiling people are much more approachable than people with a “bitchy resting face.” So a little over a decade ago I developed what I fondly refer to as the “handicapped smile.”  It was around this time I started to notice the stares, looks of confusion, and even recognition in so many peoples faces. Recognition because in my own small world of school, work, and my son’s preschool being physically disabled was awarding me some celebrity status. If I happened to make eye contact with one of these people mid-stare, the person tends to smile at me knowingly. I still am not exactly sure what they think they know. Is it just a pity smile? A smile because they recognize me from last month?

Sister, “Do you know that man who smiled and nodded at you.”

Me, “Nope, no idea. So, I smiled back”

Me dying Easter eggs

A response that I have had, and do have trouble with is the talking about me or around me. People tend to comment to, or ask questions of people in their own circle who, often do not even know me, except maybe by sight. Even worse, in my opinion, people will somehow muster enough courage to ask a question (“Why is she in a wheelchair?” “ How can I best help her?” ) to someone I am with. Basically,  anyone without a disability. Intellectually I get it. People are scared, either of the unknown or of offending me. It is much more offensive to ask my child something about me, then to ask me directly. This is my preference, not all people with disabilities feel the same way. From the majority of interactions, I have had most people who are able to prefer to speak for themselves. Again proving why communication is so important. I am always willing to speak to anyone with questions. If you take the time and guts to ask, I have my answer. My 3-year-old son, however, does not know if I want iced or hot coffee.

So, ask!! Just ask me! I will share with you about me and this disease that haunts me!

Fredrich’s Ataxia affects a person’s coordination so believe it or not when a room full of people stop midchew to stare at you it becomes almost impossible to wheel straightish. My anxiety or stress manifests through the highlighting of my lack of coordination. I often end up knocking things off tables or driving into people. I sometimes fall downstairs or knock over display racks. In turn, this causes a bigger scene and quite often I give whoever is with me the unspoken look that they have come to understand as SOS!  Get me out of here, stat!

For example, on Friday morning I had a nightmare and after telling my husband calmly about it, I went to get in my wheelchair to get up for the day.  I fell forward and smashed my nose on the hardwood floor. I would like to tell you its because my breaks weren’t on or………?

me 9/27/19

Then in the ER when I am asked what happened?  Or is FA all I have? Is that not enough? I answer all these questions because that is how people learn, and I can spread awareness.

Some days are hard.  Sometimes FA wins, actually a lot of days.  A lot more days then I care to mention. I am not and do not want to ever come across as a complainer or whiner.  Having a disease longterm, is tiring and sometimes I don’t want to get up and wipe the blood off my face. Or choke down sobs of pain and frustration, so my kids are not frightened.  Truly they are my reason for breathing. I am a warrior and they are my trophy. 

me 7/24/16

 Monday morning will come.  I will go to the gym, my sons will go to school and my husband to work, and I will start decorating for Halloween.  I will smile and start again because quitting is not an option for me!

My Boys! 2016

3 thoughts on ““Something to Talk About”

  1. Breaks my heart a little to see pic of bloodied face 😞but heals my heart that I got to see you Friday after your trip to ER & saw your beautiful smile, heard your laugh & watched you enjoy in house ☕️ coffee 🤩I know u never quit & u help me never quit🥰 anyone who is smart enough to talk to you is blessed I know I am ✨

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  2. Oh my, Liz! Looks like you took quite a fall and I’m so sorry… My friend that I work with has a cut face too, with a huge black eye. She bent down in the dark and forgot that there was a door knob in her way. I think that everyone can appreciate such an injury…. frustrating, being in pain, and just being mad at the situation! You are such a trooper….. and such an amazing mother! Hugs to you and your awesome family! Cannot believe Justin is driving now! Time goes by so fast…. ~ Laura (Kathy’s neighbor)

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