How Having a Stroke Changed My Outlook on Life



On the evening of Friday October 29, 2015, I returned from a meeting and set about typing up my notes. While doing this, I noticed a tingling sensation in my thumb, which disappeared. Then, as I got up to walk to the kitchen, I seemed to lose my balance, but put it down to tripping on the edge of a rug. Yet, deep in my mind an alarm started to ring. My husband, James, and I discussed whether to call the National Health helpline for advice. We decided not to because we had a family wedding to go to. Plus, I thought I was over-thinking things. Nonetheless, I went to bed slightly unsettled.

I woke several times in the night, and the third time, about 3 a.m., I found that my left arm and leg were not moving as they should. We dashed to the hospital, but it wasn’t until about 5 p.m. that an MRI confirmed I had had a right-brain stroke, which had affected my left side. About 10 p.m. that evening, as I lay strapped to monitoring machines, I looked at the pained expression on my husband’s face as he left me in the hospital. It was a look of fear that I never want to be responsible for creating again.

Two days later we left the hospital without permission. I wanted to get out of that environment and re-enter the world for a while, so I persuaded him we should go to Pizza Express. As the cold October air hit me, it’s hard to describe how the elements suddenly had a different sensation against my skin. I shivered as they took hold of my being like never before, and I knew then that something was wrong. I could sense my mind struggling to assess the sounds of traffic and people walking and talking. I also realized that my ability to walk had been drastically affected such that I was hobbling. I was now scared that I would be stuck in the middle of the road and the traffic lights would have turned green.

Photo: Samjhana Moon

Once at our destination, I found that the left side of my body was riddled with pain, and it was excruciatingly uncomfortable to sit down on the chair. When our pizza arrived, I picked up my knife and fork, but I couldn’t feel my fork to hold it! I hadn’t realized that I had no sensation in my left hand. In the hospital it was easy, but now words couldn’t explain the true colors of panic that raced through my mind. Holding back the tears, I looked at my husband who looked worse than I had ever seen, and through a broken voice I asked, “Can you cut my food?” Two days before, cutting my food was a normal, everyday occurrence, but now I felt frightened and out of my depth. Inside I bit the bullet and soldiered on, isolated in a bubble of unspoken fear.

Later I would remember my premonition, set out in a note some six months earlier, in which I wrote that if my blood pressure continued to remain unregulated as it was for 18 months, the result could be a stroke or a heart attack.

Happy to be discharged on Tuesday, November 2, I left with information on the possibilities of having another stroke within the first three months of a supposed recovery period. My anxiety was increased because literature also showed that being of Afro-Caribbean descent, I was already twice as likely to have a stroke as someone who is white. Everyone rallied ‘round to stress with great urgency that I needed to abandon my old ways, and slow down and take it easy.

Once home, the effects of the stroke took another turn. It reared its head and woke me from my sleep most nights in intense pain, my left hand cramped like a claw. My leg was also painful — it felt as if the blood supply had been cut off. It made walking painful so that I leaned forward unable to fully straighten my back at times. The constant feeling of pins and needles in my hand left me unable to feel the keys on the piano and my own hair. A weakness to the side of my mouth and eye made them both dribble. It also affected my memory, and I was unable to remember the words or keyboard compositions of my songs. I felt annoyed as well as heartbroken when advised by the hospital that these were normal after-effects of a stroke. Horrified sums it up!

 
Musician, songwriter, author, advocate, survivor — Sandra Donald performs a song from her new album “How Could You?” Photos: Ross Edwards

I knew then I had a lot to learn about living with a stroke. I also knew the stroke had to work for me and not the other way around. So, when it was time to return to work and as I sat at my desk, the first tear appeared. I knew deeper issues lay within, but for now I wanted my faith to guide me through this. I found a prayer that gave me strength, and in the following months I said the prayer, sometimes through a river of tears others were not aware of: “If you give me back all I need to be able to do my creativity, then I will take it wherever you lead me.”

This is an agreement that I will honor. I found myself reassessing just how fragile life really is, how quickly things can change and how we are not as in control as we think we are and should not take tomorrow as a given. Each moment is precious, and it is never too often to let those close to us know how much we love them. We should seek to mend rifts no matter whose fault it is — as the cliché says, “Life is too short.” Forgive quickly and move on. Work and love hard in your faith, if you have one. Be true to your goals by working hard to make them happen.

If holding hands and sitting opposite death was what it took to become aware of these things, then I’m thankful for that extra push. This is not the time for me to worry about what others think, or about those who are doubters or haters. They have their own insecurities that are not mine or yours.

It is our time to live in abundance like never before. I started my recovery by completing my creative projects — the book, It’s Your Time and album, “How Could You?” They had both been patiently waiting for their completion date and now they’re off and running.

What do you say, dear readers, to collectively feeling the fear and doing it anyway because it’s usually never as bad as we play it out in our minds.

Also, why not have a high five for my and your legacy?

The Story of Sandra

Like most of us, Sandra Donald of Notting Hill Gate, United Kingdom, didn’t have time to have a stroke. At age 55, her life was a hectic dance among competing responsibilities: She managed several rental properties, traveled multiple times a year with husband James and, in her spare time, was writing poetry and teaching herself piano and drums.

In the months before the stroke, she was managing a major upgrade and refurbishment of one of the properties. “It was very stressful,” she said. “I wasn’t sleeping and was constantly worrying about getting the workmen to deliver. Most importantly, I was working with my doctor to get my blood pressure under control, but after 18 months, it was still very high. The night before my stroke, we were preparing for a trip to attend a niece’s wedding in Manchester.”

Judging from Sandra’s escape from the hospital for pizza just two days post-stroke, patience was not her strong suit pre-stroke. Her close call with the stroke had the effect of reorienting her to her creative talents, in particular poetry and songwriting. She had two projects that she could never quite complete, but now, via the stroke, she was reminded that her time was not infinite. In spite of the seeming obstacles of stroke deficits — pain, drooling, dysfunction and numbness on her left side, as well as memory problems — she decided in a measured way, to complete these projects.

In Paris a month after her stroke, she sat down at a piano and realized what a lack of sensation in her left hand actually meant in terms of playing her compositions. “I was shocked at how my memory had been affected,” she said. At her first vocal session in January 2016, three months post-stroke, she was distressed: “I heard a cracked, disjointed voice unknown to me, which was painful,” she said. “I soon discovered I couldn’t remember the words or the chords of my own compositions. ‘Mortified’ is the only word to explain the inner feeling sitting alongside fear.”

Sandra fell through the cracks of the National Health System and didn’t receive any rehab for the first six months because the support team needed to make the required referrals was not available at weekends. Undeterred, she set about retraining her brain using the Einstein app she downloaded from the Apple Store. “I have learnt heaps about the importance of being persistent in trying times,” she said.

She finished both her book of poetry and her album. A defining moment was her first performance at an open-mic night, where she sang a new song. “As I sat at the piano, with numb fingers unsure whether my memory would work or freeze, I heard shouts of ‘You can do it, Sandra.’ With that support I dug deep and played the first chords then I started to sing,” she said.

Since then, Sandra is off and running, raising money and awareness for stroke programs in the U.K. In May 2017, as part of Stroke Awareness Month, she decided to do a sponsored charity walk to help raise funds and awareness of the work of Different Strokes, a U.K.-based charity that supports the recovery of young stroke survivors. She raised £558.24 (about $782.) by walking twice around the Serpentine Lido in Hyde Park, London. Then in close succession she held the launch of her book It’s Your Time and her album ‘How Could You?’ On October 29, 2017, two years after her stroke, she hosted a stroke awareness event that featured musician friends and a raffle that raised £583.00 (about $816.00).

As a stroke advocate, she tells her story at stroke awareness events in throughout the U.K., including a 10-minute video about her experience as a stroke survivor.

Sandra has two messages she wants to convey — “Faith has taught me to accept that good things can come from painful experiences. And make sure you go for it and don’t live with regrets.”

Sandra’s new book, It’s Your Time, was launched at the same time as her new album.

This information is provided as a resource to our readers. The tips, products or resources listed or linked to have not been reviewed or endorsed by the American Stroke Association.


 

Stroke Connection. Download the free app today.


 


 

Edit ModuleShow Tags

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.
Edit ModuleShow Tags Edit ModuleShow Tags

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
Edit ModuleShow Tags

Stroke & Parts of the Brain

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.
Edit ModuleShow Tags

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!