How are you handicapped?

Guest post by Monica Kaye Snyder

 

Today was my pre-op appointment with my primary care doctor. I didn’t sleep much last night because of this strange vibration in my arms and horrible legs spasms. I felt very uncomfortable this morning, but I was thrilled the girls had the day off school and let myself off the hook for a few basic things that usually drive the routine of my days including making my bed. This is huge progress for me. I cannot explain this any other way except the pheresis threw a big bucket of water on my brain on fire. My OCD is the most controlled it’s been in many years. I’m grateful.

My appointment felt like groundhog day. Labs were drawn.  I peed in a cup. My doctor checked my heart.  We talked about my progress since the plasma treatment and how remarkable it is I have gone completely off one of my drugs since. Like many times before she does this appointment in the days prior to me leaving for Maryland not fully understanding the neuroscience behind yet another surgery.  She has walked beside me for years now, and she trusts me.  She’s seen these surgeries help give me back a measure of life, and she has always been there as the touchstone for my many specialists.  I know I’m incredibly lucky to have her.  There are countless patients with my conditions who cannot find a local doctor to coordinate the extensive care needed to navigate our day-to-day health issues.  I was blessed with this angel in my journey.  I know for sure I would have given up without her.

I left her office tired but okay. My feet were feeling numb, my low back was screaming, and I had pressure in my head stemming from my neck. This is okay for me.  This is where I live right now.  I still needed to go to the grocery store.  There is almost nothing that saps me more than this chore. There have been months on end when Dan had to get the groceries. He would work all day, and I would email him a list, and he would trudge through.  We had a lady from church who offered to help many times, and we let her in my post surgery days, but it was stressful because of our budget and needing to pay her and give a list.  When we go we add things in our head and put things back and recreate meal plans based on dollars.  This is a very hard thing to do for someone else. As I have regained health and strength I have taken this over completely.  It is sometimes the only thing I can do in a day, but I feel like a gatherer bringing food in for my family. It’s important to me.

Here’s the thing.  I have a handicapped tag.  Sometimes I use the big blue space and sometimes I don’t.  The grocery store is a place I always use my tag.  I can be “okay” on my way in and am almost never okay by the time I come out.  Pushing the cart, lifting and placing things in my cart, the smells, the lifting and placing things on the belt, loading them in my car which includes lifting my enormous lift gate on my car and then popping my shoulder out to close it all exhausts me to the core.  I have often gotten in my car at the end of a simple trip and felt so out of it I didn’t think it was safe to drive home.  If I am superman Giant Eagle is my kryptonite.

I have never been challenged about my blue tag or the use of a special spot up front.  I understand this is rare.  I’ve heard the stories from others who have been reamed by random people judging whether or not they deserve a closer parking space.  Today, it happened to me for the second time in two weeks, and it brought me emotionally to my knees.

I’m not someone who rants about most things.  I think the world has enough whining and in many cases when people are grumpy or mean or lazy there is something else going on we have no idea about.  I’m the person who goes online to fill out a survey to say how good something was but keep my peace the rest of the time.  I’d like people to show me the same grace.  I feel very strongly about the lack of accessibility in many public places for disabled people.  It’s not a soapbox for me, but it affects me personally in many ways and began when Danica was in her brace and wheelchair.

Two weeks ago I drove to “The Strip” to specifically go to Michaels and use my fifty percent off coupon for a set of markers as a gift for Delaney’s friend.  I parked in a blue space.  I went into Panera and had a bagel and a chai.  I needed to rest after driving before I went into the smelliest land mine of a store ever.  I saw a friend and her kids there on my way out.  I chatted for a minute.  “Yes, I’m doing so much better. Good!” The weather had changed from sunny to completely cloudy and pouring rain in this time.  My slight headache became a roar in the time I left my house to when I walked next door to Michaels.  I found the pens, checked out and briskly crossed the short distance to my car in the pouring rain.  A police officer in an SUV slowed to roll down his window and yell at me as I unlocked my car.  “Maam . . . maam . . . You know that’s a handicapped space, right???”  I’m getting wet and confused someone is yelling at me. “What???”  He presses the issue. “You are in a handicapped space.”  I feel the tears welling up.  I reach in and grab my tag and hold it up for him to see.  He then proceeds to ask, “What makes you handicapped?”  I was stunned and a little bit angry.  I am really wet by now, and he is dry in his SUV.  I yelled back, “It’s none of your business.”  I got in my car, closed the door and realized I was shaking and broke down in tears.  This officer proceeded to drive down to Best Buy, turn around and park in front of the store on the sidewalk  I sat there thinking I should get out and go tell him my story.  I should get his name and call his boss.  I should make a difference.  Instead I composed myself and left.  I told my mom the story and my husband again later that night.  I realized I probably did the right thing. Approaching him alone would not have been wise no matter what he said to me.  Still, I felt like I had maybe I had wimped out.  After a day or two it quit rubbing me so much, and I let it go.

Today it was an older lady who did not have a tag herself but seemed very disgruntled I had access to one.  I felt fed up.  I still showed her grace.  I muttered something about brain surgery and spinal surgery and left it at that.  Both days I needed that spot.  Those steps it saves me and especially the extra space I need to maneuver my beast of a car with limited neck range of motion is my business. I’m sure there are people who use a tag who are beating the system.  I’m not one of them.

I guess I’m writing this in support of my other blue tagged friends who have been harassed.  I now know how bad it feels.  I’m also writing for those of you who secretly mutter under your breath about all those spaces close to places that are empty or taken by people who seem able-bodied to you. Believe me, when we need one it is not a luxury. Every time I park in one a little bit of my pride is taken.  I actually worry about what you are going to think of me.  This takes a toll over time. Please, show some grace to us, even when we don’t have a walker or our wheelchair or our neck brace on. What we fight is invisible in many ways, but it’s real, and most of the time our one outing is the only really normal thing about our day.  It’s us trying to join real life for an hour and maybe just feed our family.  Oh, and it’s really none of your business.


 

About Monica Kaye Snyder

I met Monica soon after Our Stories of Strength – Living with Ehlers-Danlos Syndrome was published. She was the first one to review our book on Amazon.com. I was surprised to read a review from someone who we did not already know, and quickly wanted to find out who Monica was. Once I found her website and blog, I was blow away with her ability to write so beautifully. Monica is an amazing writer. Truly gifted and she has become a good friend. Subsequently, Monica stated that she also wanted to do a giveaway through her website. Of course, we agreed and she has continued to be a huge supporter of the Our Stories of Strength anthology series.

To read more about Monica, click here or read below (the content below was taken from the about section on Monica’s website: www.monicakayesnyder.com)

Monica Kaye Snyder is a voracious reader. She is a blogger, a writer and maybe even an author.

She grew up in the Shenandoah Valley tucked between the Blue Ridge Mountains. Much of her childhood she spent scouring the stacks of her public library, playing barefoot from dawn until dusk and reading book treasures from high branches in the woods behind her home. She attended Mary Baldwin College and James Madison University studying sociology and psychology. She’s lived in northeast Ohio for over six years now but will always call Virginia home.Head2

Most days you’ll find her curled up on her butter yellow sofa wrapped in a white cable knit throw snuggled with her Yorkie Poo, Twixie. There are always books and journals piled high on her right, a cup of tea or coffee on the table on her left and a piece of pottery holding beautiful pens with a stack of stamps and stationary leaning there. She reads at least one poem every day. Music is what feelings sound like in her heart and home. Observing and making art is as essential as food and water to keeping her alive. Light is her muse and darkness is her hell.

She is rescued and redeemed. She believes at least six impossible things before breakfast. She knows telling the truth out loud is the only path to personal peace.

She continues a long journey of chronic illness and daily physical suffering. Some of her diagnoses include Chiari malformation, Ehlers-Danlos Syndrome, Tethered Spinal Cord, Craniocervical Instability, Postural Tachycardia Syndrome, Intracranial Hypertension, Mast Cell Activation Disorder and most recently PANS/PANDAS. She’s seen real miracles happen and holds on to Christ’s Hope as an anchor for her soul while living in great pain.

She is wife to Dan and mother to Delaney Jayne and Danica Jean. She knows for sure if she does nothing else well in her life, this will matter and be enough.”

To learn more about Monica, see links below:

About Monica’s upcoming book “Gauntlet With a Gift”

Connect with Monica on her blog at: www.MonicaKayeSnyder.com

On Facebook at: www.facebook.com/MonicaKayeSnyder

On Twitter at: @MKayeSnyder

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