Expect the Unexpected



Heather Yowell

One minute I could make out fuzzy images moving around the ICU, and the next minute I was the one moving. What is happening? I demanded, but no one could hear me. I couldn’t talk …I couldn’t even move… and I was losing consciousness.

At age 9, I had a hemorrhagic stroke, a bleeding into brain tissue, and the result of a brain tumor. The tumor was growing into nerves surrounding the brain stem. A blood vessel had ruptured, and the time frame between onset of stroke and onset of treatment was closing fast. The next 90 minutes would be crucial in order to stop the bleeding and significantly reduce disability. It was within this time frame that I lost the childhood I had known, but I am eternally grateful for the life I gained.

For several months afterward, I could not talk — my only means of communication a spelling board. Regular speech therapy—first at the hospital and then at the children’s rehabilitation center—changed that, but progress was slow and there was a lot of frustration and anger.

There were little things I took for granted until they were gone. I had to learn everything again. I felt betrayed by my own body; my memory wiped clean. I couldn’t walk, talk, feed myself, or even roll over in bed without assistance. Between lengthy stays at the hospital of the University of Virginia and the children’s rehabilitation center, it took speech therapy, occupational therapy, recreational therapy, and several additional years of physical therapy to get me where I am today…a survivor.

For me the question was never “Will I walk again?” but rather “How soon before I get out of this wheelchair?” Persistence can go a long way, but I’d be lying if I said it wasn’t difficult. Now was the time to rebuild my life, to make use of the abilities I still had.

At that time, during the 1980s, medical technology was not as advanced as it is today, but the only option was surgery to remove the tumor growing into the delicate network of nerves and blood vessels that surrounded the brainstem. Mine was a surgery that would not have been possible 20 years earlier. If I survived, a 3 1/2-month ordeal would begin that would leave me struggling to make sense of the world.

It’s remarkable how the mind continues to function even when the body is barely functional. I knew my surroundings. Even as I lay helpless in the ICU, dependent on machines to monitor my heart rate and control my breathing, I knew I was there because of a brain tumor and the damage it had done. I just didn’t know how much damage.

How does a 9-year-old deal with the fact that she can no longer do ‘normal’ kid stuff, like participate in after-school activities, go to the mall with friends, or even go on trips without having to plan beforehand for handicap accessibility? How do you explain to a child that the rest of her life will be governed by nerve damage? At the time did anyone know?

I needed answers. I needed to connect with others dealing with the same issues.

Recovery is a long, hard road to travel and sometimes there is no pot of gold at the end of the rainbow, but when I focused on the abilities I still had (even if they were once taken for granted) only then did I no longer see myself as victim, but rather as a survivor.

With nerve damage and a severe balance problem, grade school was a challenge, but after high school I went on to college. I graduated with honors from Shenandoah University where, relying on assistance for balance, I walked across the stage at graduation to receive a Bachelor of Science degree, for which my efforts earned me a standing ovation.

Now, at age 45, I can still see that girl, limp and helpless in the ICU bed. Turning back the pages of time, how could I explain to someone else, especially a child, that her life will be forever changed? I’d tell her, “Never give up. You will face new challenges, even struggles, but your hard work will inspire other people, and show them what it means to be a survivor.”


 


 

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Stroke Rehabilitation

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 from Outpatient Rehab

After stroke, about two-thirds of survivors receive some type of rehabilitation. Outpatient therapy may consist of Several types of therapy. Whether a patient is referred to inpatient or outpatient therapy depends on the level of medical care required.

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 Parietal Lobe

The parietal lobe helps us make sense of sensory information, like where our bodies and body parts are in space, our sense of touch, and the part of our vision that deals with the location of objects.

When Stroke Affects the Frontal Lobe

Of the four lobes that make up the cerebral cortex, the frontal lobe is the largest. It plays a huge role in many of the functions that make us human — memory, language, movement, judgment, abstract thinking.

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!