Double Take

I was a pre-pandemic mask wearer.

I am a Service Dog handler.

I am an ambulatory wheelchair user.

I am used to people doing a double take when they pass by me and see the abnormal way that I have to present myself to society. I am used to people staring when they see me wearing a mask as I shop at the mall. I am used to people staring because I have my Golden Retriever in Target. I am used to people staring because I use my wheelchair at my brother’s lacrosse game but park it outside the bathroom and walk in to use the toilet. 

It’s not news to me that my disabilities make me “different”. I understand that surgeons and construction workers wear masks on the job, dogs are pets that greet us when we get home from a long day at work, and wheelchairs are for people who can’t walk. Except that none of these groups are exclusive. 

Before the Coronavirus hit, I was instructed to wear a mask due to my severe Adrenal Insufficiency that makes my immune system incredibly fragile. When a healthy person’s system comes across a bacterial or viral invader, the Adrenal Glands produce an extra burst of Cortisol to compensate for the fight that’s taking place within the body to ward off the infection. Because my Adrenal Glands don’t make Cortisol, the invaders run rampant in my body, causing a more intense infection that puts my life at risk, meaning Strep or the Flu hospitalizes me. By being so high risk, it is critical that I wear a mask any time I am in a crowd–my doctor’s exact words way before COVID hit the United States. And there are lots of other people who have been told the same due to their chronic health issues such as being immuno-compromised due to illness or immuno-suppressed from certain medicines that treat things like cancer. That mask is saving our lives from your germs because our bodies can’t–please do not stare.

My dog is my hero. He saves my life on a regular basis. I could talk about him forever, telling stories about him alerting to a seizure while I was showering so that I didn’t drown or flipping my face out of a cushion so that I didn’t suffocate after I fainted. He picks me up off the floor with his bracing tasks, he knows how to make life easier on days that I am in my wheelchair, he calls my support system for help when something goes awry inside my body, and he applies pressure to the muscles that are spasming. When you see me walking or wheeling with him by my side in Target, it’s because he tells when my heart rate is so high I’m about to faint and I need to sit down so I don’t cause a scene, he picks up the boxes of pasta I drop on the floor with my Fibro hands or that are on the bottom shelf (because I WILL faint if I bend over to pick them up), and he provides a built in walker/balance support. Among many other things–all of which you can read about on his Instagram (@with.cabbage.i.can) or on his Facebook page (With Cabbage I Can). My Service Dog gives me a quality of life and an independence that I had lost–please do not stare.

I only recently began using a wheelchair part time. It changed my life. Before the chair rolled onto the scene, I had to ration my already limited number of spoons like crazy. Walking long distances is an absolute no go for me. Standing for a long period of time? Not a thing that’s going to happen. Muscle weakness is real. Fatigue is awful. Pain in my muscles and joints will often prevent me from moving my legs at all. With the wheelchair as part of my bad day–or even so-so day–supplies, I can do so much more. I can join my friends on outings to the mall. I can go to my brother’s sporting events. I can bake or cook. By having access to the wheelchair when I need it, I have the opportunity to leave my couch. When walking gets to be too much for me, it’s there. My wheelchair is there for me when my legs decide they don’t want to be anymore–please do not stare.

There are many parts of disability that can be awkward or embarrassing for us. We need assistance devices to keep us safe. For me, those things are my mask, my Service Dog, and my wheelchair. Sometimes my list includes more or less. For other people with disabilities, the list includes other things. For people in the able bodied community, all we ask is for respect, and that simply means not doing a double take or staring when you see something that you think is different or doesn’t fit what you think should be the norm.

3 thoughts on “Double Take

  1. Emma Janine . . . You are one amazing young lady! I love and admire you a whole lot! Love the pictures, too! 🙂 When and if the vaccine or medication comes for COVID19, we’ll look forward to driving down and visiting you and your family.

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  2. I won’t stare at you because of your mask, Cabbage, or wheelchair. I do intend to continue to stare at you and Cabbage because seeing the two of you together makes me so incredibly happy and – let’s face it – you are both beautiful!!! Great post, Emma.

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  3. I will never stare for any other reason than you are beautiful and Cabbage is amazing. It was wonderful being together last weekend. Have a wonderful trip to MN! Take care of yourself and give my love to your mom and Malala. Hello to Etta and her family. I will wait to hear from you when you folks are in town.

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