How to Post Your Story
Member Story Guidelines
Share with other Members
For the past twelve years, StrokeNet has been publishing the personal stories of stroke survivors and their caregivers. Every survivor and caregiver has a unique experience and point of view to offer. StrokeNet gives others, in similar circumstances, the opportunity to learn about your own experience, and how your viewpoint has changed post-stroke.
We’ve all been there, either as a stroke survivor or as a caregiver. We know what it’s like firsthand to be transported, in the blink of an eye, from our normal lives to a life of shattered dreams and an uncertain outlook, with our physical and emotional reality altered forever.
Our facts are remarkably similar:
- experiencing a stroke ourselves, or watching helplessly as a loved one has a stroke
- feeling the chaos, terror and confusion immediately afterwards
- having to wrestle with an often daunting recovery, many times without adequate resources (caregiver burnout is common)
- being forced to deal with many frustrations and setbacks, but also (hopefully) experiencing many little victories, and making progress towards crafting a new-normal that works for us, as well as for our loved ones
But, even though we share many similar initial stroke experiences, it’s what happens over the long run that sets each of our stories apart. “Member Stories” is about how we take our lives back; what we do, how we do it, the adjustments we make, and, yes, the things we give up.
My name is Deb Theriault, and I’m the Stroke Network’s Member Story Coordinator. I’d like to tell your stroke or caregiver story in the StrokeNet e-newsletter. You may think that your story is too “small” or too “ordinary,” but that’s not true. There are a multitude of different stroke experiences out there. Each and every stroke survivor and caregiver story is worthy of telling, and I want to tell yours.
It just takes a few steps to tell your story.
Step one: you must be a member of the Stroke Network (which is why we call it “Member Stories”), so if you’re not already a member, you have to join the SN. Membership is free; you only have to provide some basic information about yourself when you become a member. And, we’re very protective of our members’ data; we never share members’ personal or contact information with anyone else, so your information is safe with us.
Step two: I’ll send you a questionnaire to fill out. The questionnaire asks things like when the stroke occurred, what was going on before it happened, and what part of the brain was affected.
There are also questions about whether the survivor had acute care hospitalization and any rehabilitation (either in-house or outpatient), and if so, what types of treatments were given, and for how long. Caregivers are also asked about their daily / weekly/ etc. routine with the survivor, and the challenges that are associated with this.
But, more importantly, the questionnaire also asks other questions such as:
- (for survivors) recovery struggles and how your life has changed (or not) as a result of your stroke
- (for caregivers) whether there are any things / activities that you’ve had to relinquish in your life, as a result of the stroke
- how friends, loved ones and (yes) even pets have affected the path to recovery (whether or not it was a positive or negative experience
- what new activities (or professions) were taken up as a result of the stroke
- how your perspective has been altered as a result of all of the above
There’s also room on the questionnaire for any other information that a survivor or caregiver wishes to share with the stroke community.
Please don’t let the questionnaire scare you; you don’t have to fill out all of the questions, just those that apply to you.
Step three: I’ll use your information to write a draft of your story.
Step four: I’ll send the story draft to you, for your comments and corrections.
Step five: After you return the corrected story back to me, I’ll finalize it, and prepare it to be submitted for publication in StrokeNet.
We’ll also need two more items from you:
- a photo of you, by yourself (we’d prefer a post-stroke photo; nothing special or formal -- a “selfie” will do)
- your permission to publish your story and archive it on the Stroke Network site.
If you want to see examples of Member Stories that have already been published, log onto the Stroke Network, and click on “Quick Links” at the top, to access a “pull down” menu. Then, on the pull-down menu click on “Member Stories”, which will take you to where the stories are archived. On that new page, click on one of the “thumbnail” photos near the bottom; that will take you to that person’s story.
That’s it in a nutshell. Again, please consider sharing your story with others. When you’re ready to do this, I can be contacted via the Stroke Network. My display name is: dtheriault. I’m really looking forward to working with you.
Contact Deb at firstname.lastname@example.org
Deb survived her third stroke in 2006. In addition to her work with the Stroke Network, Deb is Treasurer for the W. Pa. Division of the US Fencing Assoc., does community gardening in her neighborhood and is a professionally-trained artist who has been specializing in figure drawing for many years.