Aug 31
kimwithsix
kimwithsix , Posted on SUPPORT NETWORK Blog

Lessons Learned - Going From Walking to Rolling by Kim

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I had an ischemic brain stem stroke in 2016. To put it lightly, my learning curve has been steep. I went from a run-of-the-mill oblivious mortal who was uber-independent and way too busy for my own good ... to what was once a very helpless and clueless individual. I was previously unaware of the daily struggles a certain—rather amazing—part of our population must face.

After my stroke, I was suddenly in this new demographic entitled “disabled.” I personally feel it should be “alternatively-abled.” After three years, you know what I learned? (Well, a lot!) 

Alternatively-abled people are incredibly patient and highly ingenious. We might seem impatient, but it’s because we’ve been patient, a lot, and we’re tired. The small, simple things in life are seriously hard, but we find a way. We might need a little help, but don’t we all? My personal pride… gone. My personal space… gone. I am still a person, but a very different one. The blue wheelchair symbol should have a crown on the stick figure’s head. It is well earned by every alternatively-abled person. Twenty-nine years have passed since the Americans with Disabilities Act was put into law. The effort is appreciated, don’t get me wrong, but many people and establishments need to step up their ADA game! 

My stroke left me initially quadriplegic, but in time my left side decided to lend some assistance. Thanks left side, appreciate ya. I’m still unable to walk unassisted, so my motorized wheelchair has become my new best friend. A little bit of my independence was restored. (I attempted a manual wheelchair. Funny thing, rolling it with one arm just sent me in circles! I kept going left. It reminded me of Nascar!)

I wish I could say I was a natural left hander. But no, my life-long right handedness is contributing to my challenges now. Learning to perform daily tasks with my non-dominant hand pushed me to the brink of madness. If I hear “You threw that down!” when I drop something again, I might lose it.

In my childhood, my mom always told me not to use my teeth to do things. Sorry, mom! They are my right hand now. My mouth helps me perform tasks regularly. I also see amazing people who use their feet to do stuff. Well, the toes on my left foot are not that nimble, and I’m not that flexible! I hate to admit it, but sometimes I get jealous of two-handed, walking people. I know, I’m breaking the coveting commandment, but I still do! 

Try eating with your non-dominant hand. My husband used to insist the family do it for Sunday dinner. You’d think they were going to starve to death. The drama! They finally asked me if they could please eat with their right hands again so dinner wouldn’t last three hours. Non-dominant-hand eating is an acquired art. I was attempting to eat one day early on, and I was wearing long sleeves. Struggling with my spoon, I dropped it down the inside of my left cuff! Really! I couldn’t make that happen if I tried. Embarrassed, I had to ask for help retrieving my utensil. At least we had a good laugh that day.

Spoons have been my preferred utensil. Food just seems to jump off the fork on its way up, like it’s bailing out before impending doom. I never realized how often we catch our food during a meal. One-handed eating results in a fun little mess! No fun. Yes mess. My eating strategies have changed. I have discovered which foods to avoid. Spaghetti is seriously difficult, and I can either eat my meat by hand like a barbarian or swallow my pride and ask for help cutting. Either way embarrassing. The last few bites always get the best of me. After spending ten minutes pushing them around my plate, I literally throw in the towel (from off my chest) and surrender. 

Speaking of eating, I have learned that handicapped seating in restaurants does not have the best view. They give you the easiest drive-up spot, but it is usually facing a wall. It’s not fun, especially for a people watcher like me. If I want to be out in the world, that’s the price I pay.

The stroke claimed the hearing in my left ear (Go figure). Loud, busy restaurants are crazy difficult with one ear. My lip reading skills are put to the test. Social chitchat is a strenuous chore.

Restrooms at restaurants are mainly small and not easily accessible. My husband performs a pre-flight check, and then he either gives me a go or no-go. Newer restaurants and convenience stores offer the best bathroom options. In places with retrofitted bathrooms, people slap up a grab bar and a sign, and consider themselves good to go. (They’re not.)

My husband assists me in the restroom. We do men’s or women’s bathrooms depending on availability. Many awkward experiences have occurred. That’s a topic for another day. 

Travel, in general, is intrinsically challenging. At first, I didn’t travel much, near or far, since it was a very daunting task for my husband. We finally discovered a used wheelchair van on a classified site. My world got a little larger. I don’t know how people afford wheelchair transportation. Do they mortgage their first born? My van is a back entry, thank goodness. I don’t envy side load vehicle owners since handicap parking spots, even with the extra load lane, don’t offer ample loading space. I need a runway.

I’ll bet we all have our handicap parking horror stories. My young daughters have developed a begrudging attitude when it comes to handicapped parking. I remind them that many people have various reasons for possessing a handicap placard, some unseen. Although it is simply hard to see a bouncy teenager take the last handicap spot, jump out, and run into the store when I could certainly use it.

Older wheelchair curb cuts are a sad excuse for access when they have a sizable bump or are poorly placed. Bumps anywhere in my path jostle me so much I feel like I am on a bucking bronco. (Whoa Nelly!) I know they can sand those down. I’ve seen it. My utmost gratitude goes out to those who care enough to do that! 

The general public, for the most part, is helpful and willing to hold your door, even though they end up regretting it after six more people go through while they’re holding it. There have been multiple times I have waited in front of a door trying to figure out how I was going to enter, because no one was around to assist. One time I do blame on bad parenting. I traveled five blocks from my home to a convenience store to get my much-needed carbonation. The only cashier was busy with a customer, but a ten year old boy (I would guess) was standing in line. He just stared at me through the glass door for what seemed like forever. It got awkward. I finally gave up and went around to the drive up window for help. Bad. Parenting. I vowed to teach my kids manners, especially when it comes to disabled persons.

Now I think of it, I don’t have to teach it, we live it. My kids witness kind acts every day around me. I have, however, utilized many drive-through windows after the door plan failed to pan out. I’ve tried the open-the-door-drive-backwards-with-my-leg-holding-the-door scenario, but that rarely works. Doors are too heavy, and I’m not that talented. 

Then there are the looks one receives in a wheelchair. People try to act cool and normal, but you can see it in their eyes. They are thinking, “I wonder what happened? Should I speak slower, or louder?” They are nervous. Sometimes, I wonder if they are scared it could be them someday. Conversely, you can totally feel it if a person has friends or family in a chair. They are at ease.

Most kids, however, are extremely brave. They don’t mince words. I was in a clothing store browsing through a display. A young child near me tugged on his mom, and asked, “Did she get in a car wreck?” She shrugged. So I browsed a minute more, looked him in the eye, and said, “Always wear your seatbelt!” I think I scared him straight. The mom chuckled to herself. I drove away pretty proud of myself. Another time, a little girl come up to me and asked, “What happened?” I knew she wouldn’t understand if I said stroke. I told her Elsa froze me, and it’s taking me awhile to thaw out! She was so amazed and totally believed me.

My many hours of waiting has turned me into a professional people watcher. I’m doing an intense study of humans. It’s seriously interesting, and a little funny, the things people do when they think no one is watching! I’ve witnessed various nose pickers, adjusters, and even shoplifting!

Its enlightening to think I used to be one of those busy little ants running here and there. Everyone needs to slow down and smell the roses. It took me being put on a mandatory hiatus to realize that. 

I hope I don’t come off too negative. I understand people try, but some are just oblivious. I guess the moral of my story is: We need to learn to look at things positively, and laugh at ourselves and our circumstances. It’s better than crying. I’ve done enough of that. Its time to turn that frown upside down. Make lemonade out of those lemons.

 

 

 

4 Comments
  • AHAASAKatie
    AHAASAKatie,

    What you shared with us is not negative, it's your experiences and very valuable.  I can relate on a few levels as my Mom is legally blind and now in a wheelchair. Through the years she has experienced many of the challenges you discuss, most people are oblivious and want to be helpful at the same time. This can make for a quandary of helpful and not helpful people at the same time. Please know we are here for you whenever you want to share.  Best Katie 

  • JeffBoyce
    JeffBoyce,

    Thanks for sharing your story - I love your witty sense of humour. You have a gift for the written word. I laughed about the Elsa comment that lillte child must still be talking about that day!

     

  • louisjames
    louisjames,

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  • AbdulMinhaj
    AbdulMinhaj,

    I am very shocked after reading your story you have faced a lot of problems in your life. I really appreciate your struggles as a lady you have a lot of courage this is why you are facing the challenges in life. Now, I will share your story in my website blog assignmenthelp.ae that always support the peoples and students.

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