Don't Make Me Over



A Unique Perspective on His Survival by Stroke Survivor and Comedian John Kawie

There are a few problems I have with the world at large. For instance, people kicking the back of my chair. Public nail clipping. Never-ending car alarms. And our upstairs neighbor doing his impression of LeBron practicing jump shots. But today I’d like to vent about one that’s currently stuck in my craw: the unsolicited advice, opinions and comments strangers offer about my disability.

These folks are well-meaning, but they have the stroke rehab knowledge of a cantaloupe. Like my aide, Norma, who claimed her conch soup was a miracle elixir that could raise the dead. I didn’t know what conch was — thought it might be edible Jamaican hooch — so I was all in (doesn’t taste like chicken). Or her friend Monica, who swore that putting nutmeg under my tongue (the actual nut, not ground) would magically return the use of my affected left arm. Well it didn’t, but I did manage to do a better Daffy Duck than Mel Blanc.

I was a newbie stroke survivor, desperate, straight out of the hospital. You name it, I tried it. Now? I’m street savvy. No more magic potions for me. Yet, the advice keeps coming.

Take last week. While Marilyn was finishing her workout at the NY Health Club, I was killing time in the lobby. Suddenly a swarm of fitness instructors poured in. I found myself surrounded like Custer at Little Bighorn, but instead of the Sioux nation I was under attack by a war party of “Baywatch” clones. They fired everything at me: tai chi, Pilates, water-aerobics, kale-filled smoothies and, of course, “The Rock” wanted me to pump iron. Just what I need… half my body looking like Popeye and the other half like Olive Oil.

I reassured the throng of underwear models that I was fine while Marilyn pushed me through the door. We made it to the street only to be confronted by Joe, the neighborhood homeless guy, who yelled, “Hey buddy, your left side ain’t lookin’ too good.” Perfect! He wants money from everybody else, but lucky me — I get opinions.

Two blocks later we reached our building’s elevator and shared it with an elderly woman visiting a neighbor on 16. She gave me the once over, and I knew what was coming.

“Dear, I used to be a therapist ... if you worked hard … made a serious effort … you’d get your arm back … hope you don’t mind my suggestions.” Mind? Of course, I don’t mind being singled out and having to reassure yet another stranger that I’m perfectly fine — ecstatic even.

OK, I’m the crooked painting on the wall that people can’t walk by without straightening. I’ve learned to accept that. I’ve also learned to keep a set of stock answers at my disposal for all disability queries. “I leave my left side like this because _____”:

  1. I dance in a unique Chippendales unit catering to disabled bachelorette parties. Think Special Olympics with a bow tie and a thong.
  2. I play Strokeman, a super hero in an Off-Broadway production. Think Special Olympics with a leotard and cape.
  3. I’m a model for a disabled pin-up calendar (I know, it’s a stretch). Think cheesy Special Olympics.

It seems everyone wants me to go back to what I was. While I’m sure their intentions are good, I don’t want to go back. I need to move forward with who I am now. And, by the way, I’m fine. Really

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Stroke Rehabilitation Two-Part Series

Making the Best Decisions at Discharge After Stroke

The type of rehabilitation and support systems a survivor receives at discharge can strongly influence health outcomes and recovery. In this, the first part of a two-part series on stroke rehab, we offer guidance for the decision-making process required when it’s time to leave the hospital.

What to Expect in Stroke Rehab

Following a stroke, about two-thirds of survivors receive some type rehabilitation. In this second of our two-art series, we want to alleviate some of the mystery, fear and anxiety around the inpatient rehab part of the stroke recovery journey.
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AHA-ASA Resources

The Support Network

When faced with challenges recovering from heart disease or stroke, it’s important to have emotional support. That is why we created a network to connect patients and loved ones with others during their journey.

Stroke Family Warmline

The Warmline connects stroke survivors and their families with an ASA team member who can provide support, helpful information or just a listening ear.

Let's Talk About Stroke Patient Information Sheets

Let's Talk About Stroke is a series of downloadable patient information sheets, created by the American Stroke Association, that presents information in a question-and-answer format that's brief, easy to follow and easy to read.

Request Free Stroke Information Packets

Fill out this online form to request free information about a variety of post-stroke topics.

Caregiver Guide to Stroke

The Caregiver Guide to Stroke is meant to help caregivers better navigate the recovery process and the financial and social implications of a stroke.

Tips for Daily Living Library

This volunteer-powered library gathers tips and ideas from stroke survivors, caregivers and healthcare professionals all over the country who’ve created or discovered adaptive and often innovative ways to get things done!

Stroke Support Group Finder

To find a group near you, simply enter your ZIP code and a mile radius. If your initial search does not pull up any groups, try
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Stroke & Parts of the Brain

When Stroke Affects the Temporal Lobe

The temporal lobe has several functions, mainly involved with memory, perception and language.

When Stroke Affects the Brain Stem

The brain stem serves as a bridge in the nervous system. It sits at the top of the spinal column in the center of the brain. When a stroke happens there, it can cause a few different deficits and, in the most severe cases, can lead to locked-in syndrome.

When Stroke Affects the Thalamus

The thalamus can be thought of as a "relay station," receiving signals from the brain’s outer regions (cerebral cortex), interpreting them, then sending them to other areas of the brain to complete their job.
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Departments

Stroke Notes

Stroke-related news you can use about new scientific findings, public policy, programs and resources.

Readers Room

Articles, poems and art submitted by stroke survivors and their loved ones.

Life Is Why

Everyone has a reason to live a longer, healthier life. These stroke survivors, caregivers and others share their 'whys'. We'd love for you to share yours, too!

Everyday Survival

Practical tips and advice for day-to day living after stroke.

Life At The Curb

A unique perspective on survival by comedian and stroke survivor John Kawie.

Simple Cooking

Cooking at home can be a daunting task, but a rewarding one for your diet and lifestyle (and your wallet). Making small changes in your diet is important to your heart health. Here are simple, healthy and affordable recipes and cooking tips.

Support Showcase

Our new department highlighting the good work being done by stroke support groups from around the nation. If you are part of a successful support group we should consider featuring, let us know!