2023-03-27

Tawnie, the Neuro Mermaid



Tawnie the Neuro Mermaid bled into her brain for a week before the doctors in Ohio took her seriously. When the neurosurgeons began treating her they were shocked she was still alive. Still, the hemorrhagic stroke ended her dual career paths in in bar tending and special education.

Naturally, Tawnie came up with an alternative. She became a mermaid, an entrepreneur, and an advocate and supporter of other members of the stroke community.

In this long overdue Strokecast interview, Tawnie shares her story of trying to get treatment, how she got into mermaiding, her experience with cannabis, and the power of the stroke community.

If you don't see the audio player below, visit the original blog post on the Strokecast website here.

Who is Tawnie, the Neuro Mermaid?

Tawnie the Neuro Mermaid lays on the beach looking forward as she raise her mermaid tail behind her head

As Tawnie shares:

At 28 I had a hemorrhagic stroke go misdiagnosed for a week. That's right I was bleeding in my brain 🧠 for a week so I have been documenting & sharing my recovery.

As a former special education teacher I'm interested in retraining my brain, biohacking, & helping others become 1% better everyday.

Working from home & running a business from my phone gives me the flexibility & support I've always wanted. I enjoy helping others do the same!

I love sharing tips tricks & my life follow along & ask any questions 🤗 I look forward to connecting

Https://msha.ke/tawniethemermaid

Medical Records

One of the challenges Tawnie had in getting her stroke diagnosed was a GIGO problem -- Garbage In, Garbage Out. The initial doctor she talked to failed to recognize her symptoms as a those indicating a stroke, and he made the notes in her records. That was the first problem. It was the garbage in.

Then, as Tawnie sought the advice of other doctors, they referred to her initial records, took the garbage in as truth, and failed to do their own assessment of Tawnie's symptoms, and produced recommendations based on that initial assessment. Garbage out.

It took a nurse who hadn't seen Tawnie's medical records to recognize that she was having the medical emergency that would ultimately lead to a helicopter evacuation.

In the US, at least, your medical records are yours. You are entitled to them. If you use the popular My Chart patient portal, you may have direct access to them. If not, you can reach out to your hospital, doctor's office, or other medical practitioners, and get copies of them. You can also get copies of your scans, X-rays, MRIs, etc.

The most important reason to get them is so you know what is actually in them. Whether you can correct them is another matter, but if there is incorrect information in them, you should know about it so you can give that context in future conversations.

The information in your records may impact future treatment. Nake sure it's not garbage.

Migraines

Migraines suck.

I think we can all agree on that.

So far I've only had one, I think. It was in the hospital after stroke. I felt my vision narrowing at the edges. It reminded me of how my vision would be impacted the flash cube in the Kodak Instamatic in the 1970s.

Of course Tawnie's life long migraines were much more severe. She did get treatment for them, but no one checked for the aneurysm that was waiting to rupture. Tawnie powered through.

Carmen De La Paz also experienced migraines for years before her stroke. She thought they were just dehydration so she would make a habit of drinking more water to address them -- until one day one of them ruptured.

Sometimes the cause of a migraine is an aneurysm in a blood vessel. Caught early, aneurysms can be treated before they turn into debilitating hemorrhagic strokes. The patient needs to seek treatment, though. The doctor has to order tests, like an MRA, and the insurance company has to agree to pay for it.

In Tawnie's case, the first two things happened. The insurance company failed by refusing to approve the scan that could have prevented Tawnie's stroke.

You Look Fine!

Many people will tell a survivor things like:

You look great!

You'd never know you had a stroke!

Looks like you're all better now!!

When people say these things they usually mean well. In reality, though, they can feel quite hurtful.

Many survivors live with invisible disabilities -- cognitive, emotional, communication and other challenges that other folks can't see. Statements like those above ignore these challenges.

After a few months, outward signs of the stroke may have dissipated, but internal struggles remain. Compliments like these invalidate and undermine the challenges that may still be part of our lives.

They also make it easier for folks to blame us for being "lazy" when we have a high-neurofatigue day and simply need more sleep.

Mermaids

Tawnie embraced mermaiding. There is a community online of folks who put on tails and fins. They lounge around the pool or go swimming with their tails and celebrate the life style and community.

It's interesting to have an episode with Tawnie the Neuro Mermaid right after I came back from the JoCo Cruise with its own substantial pod of mermaids.

Tawnie's motive for becoming a mermaid is a great approach. The challenge with returning to a hobby after stroke is that you remember how well you used to do it. And if your ability to perform the same task is impacted by your stroke, it's frustrating. With a new hobby, though, as part of your new life, you don't have a pre stroke version of the experience to compare it with.

So pick up a new hobby and start from scratch. You can only get better at it.

Survivor Sundays

Each Sunday, Tawnie joins Maddi Niebanck for Survivor Sundays on Instagram. It's an informal live show that gives Tawnie and Maddi the opportunity to connect with each other and the broader stroke community. It's an open forum for folks to share their experiences and ask questions.

It's one of the positive examples of what social media can do in our lives. It lets people who need to connect interact with each other. And that's just what many of us need after stroke.

To join Tawnie and Maddi, simply follow them on Instagram at @TawnieTheNeuroMermaid and @MaddisStrokeOfLuck.

The show was also pivotal in Tawnie's decision to go public about her use of cannabis after stroke. Folks would ask about it during live broadcasts, and Tawnie would follow up in private afterwards. Eventually, she decided it would be better to simply be more straightforward about her experience.

Budtenders and Weedmaps

I did learn a new word in this episode: Budtenders. These are the folks that work at the legal medical and recreational marijuana dispensaries in states where it is legal. I just like the wordplay on bartenders.

So what should you do about cannabis or marijuana?

First, ask your doctor or medical team. Due to the fuzzy legal status they might not be able to tell you much. You can ask about the latest research, or ask if it is specifically contraindicated for any of the medication you take.

Beyond that, the budtenders in the dispensaries can provide a wealth of information about the products available in your particular community.

To find a dispensary, if it's legal in your community, Tawnie recommends Weedmaps. It's like a Yelp for cannabis. It’s a place for you to do additional research.

Since I live in Washington state, I asked my doctor about it while I was inpatient. Granted this was 5.5 years ago so recommendations may have changed. This doctor said, basically, "If it's not already part of your lifestyle, now is not the time to start." This doctor also said that if I was have issues with appetite or nausea their recommendation might be different.

So if you're interested in exploring cannabis, check with your doctors, talk with other members of the community who do choose to partake, consult with tools like Weedmaps and the budtenders in your area. Whatever decision you make, do the work to make sure it's the right one.

Hack of the Week

Tawnie has a busy life and lives with executive function disabilities brought on by her stroke. She's developed quite the collection of tools to help her navigate this life.

First, she relies heavily on calendars, alarms, and notes on her phone. It's a great tool to outsource those brain functions that were impacted by the stroke.

Tawnie is also a big believer in journaling. She does this both in writing and online. Chronicling her recovery on Instagram has been a way for her to see her own improvement, stay connected with her journey, try new things, and share the results with the community.

You don't have to share as publicly as Tawnie does, though. Use your phone to take pictures, record video, record audio, make notes, and more. The further you get in your recovery, the more valuable these resources become. Simply looking back at these records shows us how far we've come.

Tawnie also echoes what Kristen Aguirre told us a few years back, and what other survivors have found helpful. Practice gratitude. We're here, and that's a start. Looking for things in our life to be grateful for can help reframe our experiences and inspire more hope for the days to come while making the present more pleasant.

Recovery is not an easy path. It takes work and time, and Tawnie talks about how you need to put in the time and energy to retrain your brain. There's no shortcut. You have to do the work

Finally, one of the most important things Tawnie suggests doing is to reach out to the community. That could be a local support group. It could be an online community. It could be following the various stroke-related hashtags on social media. It could be listening to the various stroke-related podcasts out there.

Or it could be joining live broadcasts on Instagram, like the Survivor Sundays that Tawnie and Maddi do.

Links

Where do we go from here?

More thoughts from Tawnie

A red square. On the left is a picture of Tawnie wearing her mermaid tail on the beach. The text reads, "Tawnie the Neuro Mermaid New eisode available in your favorite podcast app http://Strokecast.com/TawnietheNeuroMermaidAfter your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

An illustration of two baseball bats forming an X The text over the image read: And I went into the shower and it felt like a baseball bat hit me in the back of the head. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

An illustration of a shower head in green The text over the image read: And I just remember thinking, don't hit your head because then you're gonna be dead. No one will find you. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A close up photo of a woman's neck. The text over the image read: I would be talking and I would like start to fall asleep, and my neck started becoming really stiff. I couldn't touch my chin to my chest and so we started thinking, “What if I have meningitis?” - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A photo of a woman clutching her head in pain. The text over the image read: Pain is there for a reason. Pain is there to warn you of something. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a wooden drawing model. The text over the image read: Yes, doctors are here and they went to school, but they don't know your body. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of the inside of a medical helicopter. The text over the image read: The nurse said, “I don't think you understand what's really happening,” and I was like, “I don't want to pay the ambulance bill. Please just let my dad drive me.” - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a person writing, "No," on a chalkboard The text over the image read: I always took if you say no, that means no. And now I'm learning you have to advocate harder for yourself. Just because they told you no, does not mean no. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of three ambulances parked at a hospital. The text over the image read: I walked into the first ER [under my own power], but that doesn't mean that there wasn't something wrong with me. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a golden gavel on a gavel rest The text over the image read: I wish I would have again advocated harder for myself. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a woman rubbing her sore back. The text over the image read: The body really does tell you when you have done too much. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a foot moving at high speed over a blurred dirt road The text over the image read: I never had panic attacks prior to my stroke. Now I deal with them. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a close up of a scar on someone's skin The text over the image read: I wish I had a scar so people would understand that there is something wrong with me. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a person dressed as a mermaid at a pond in the woods. The text over the image read: I was like, “How cool! These people are actually being mermaids. That's so fun! - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a woman dressed as a mermaid swimming under water. The text over the image read: [After stroke] try a hobby that you've never done, because then you can't compare yourself to how it used to be. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a woman dressed as a mermaid on a rocky beach. The text over the image read: I really stuck with the mermaiding because it was something physical and fun that I could do where I couldn't beat myself up about it because it was something brand new. I'm not supposed to be good at it. I've never done this before. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of two women dressed as mermaids sitting in the surf at a beach. The text over the image read: When you put a mermaid tail on at the beach, the people around you look. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a microphone in front of an out of focus crowd The text over the image read: And I was nervous because I'm like, “Once you become public about this, you can't go back to teaching. You can't go back to working with the kids. Are you really ready to let that dream go? - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a pile of pills The text over the image read: Even my neurosurgeon said, “I would much rather have you [using cannabis] than on all the other pills that are going to kill your liver. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of the back of a woman as she rus experiments in a lab. The text over the image read: I guess for me it was less scary experimenting with cannabis than the fact that they were experimenting with anti-seizure meds. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of an old Commodore PET computer with its attached monitor. The text over the image read: I feel like my brain is like it's an old computer in the morning. It just takes a lot longer to like, reboot and get ready. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a work bench with assorted sizes of wrenches neatly hung on the wall. The text over the image read: I have learned that instead of being angry at my deficits or being like, “why can't I do that?” It's like, “OK, well, cool. What tool can I use?” - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a woman setting up a camera to go live. The text over the image read: If I just record it, then if I forget who I am, I can go back and put the pieces together so I just started documenting. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a street protest The text over the image read: When you're healing and recovering publicly, people have opinions. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a person in sillouette staring out a window The text over the image read: I just found that sharing [my stroke experience] helped me not feel so alone. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a directional sign sillouetted at sunset The text over the image read: And I look at so many opportunities and so many things that I've done that I would have never in a million years done if it wouldn't be for the stroke. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid

A picture of a package wrapped with red ribbon. The text over the image read: When you start looking at the things [stroke] can give you, instead of focusing on all the bad, you can start seeing it as more of a blessing. - Tawnie, The Neuro Mermaid After your brain bleeds for a week and a series of doctors don't take your concerns seriously, what do you do? If you're Tawnie the Neuro Mermaid, you leave the hospital, step away from teaching, become a mermaid, and channel your energy into empowering other members of the communities you are part of. This week, Tawnie joins us to share her journey, the role of mermaiding in her recovery, the power of the survivor community, and the role of medical cannabis in her life.

Hear the whole conversation at http://Strokecast.com/TawnieThjeNeuroMermaid


Here is the latest episode of The Strokecast

2023-03-05

Write your own recovery from stroke


It's one thing to have a stroke in an urban center surrounded by hospitals and ambulances. It's another experience altogether when you're at a snowy ski resort in a remote Canadian town. You can't call the caretaker because you are the caretaker, and your only connection to the outside world is a Satellite phone you left in the office.

That was June Hawkins' experience as the dark specter of high blood pressure unleashed a cavalcade on emboli into her brain.

In this episode, she shares the details of her story and how she's been writing her way to recovery.

If you don't see the audio player below, click here to go to the original blog post.

 

Who is June Hawkins?

June Hawkins smiles broadly at the camera

June’s heart has always drawn her towards living life as an adventurer.  She has been a mountain guide, marathon runner and canoeist, mother of two children and program coordinator of a provincial crisis line. But her lifelong passion has always been cross country skiing. She developed and operated what became a one of the most successful ski schools in Canada, attracting skiers from across North America. June possesses the unique ability to make people feel relaxed and welcomed and considers her biggest accomplishment is that of teaching a fearful beginner skier the joy of getting down a hill safely.

She had her stroke early in the morning of February 1, 2021. She was living and working for the winter at Nipika Mountain Resort in British Columbia, Canada as the on-site custodian and ski instructor. June says her stroke journey has blessed her with the time and the ability to continue with her other passion: writing.

​June’s recovery journey has provided a rich world from which to write and her hope is to speak to survivors using their language and to educate others about stroke using theirs.

Nature of writing

June found writing to be a great way to clear her own head. Navigating the world can be more complex after stroke and reducing the noise both coming in from the outside and the noise generated by our own thoughts. Writing can get that stuff out of the way.

But where do you start?

I find simply writing long to do lists helps, even if I never use the list. It's a great way to get started.

Others find it helpful to write that they don't know what to write.

The approach June takes in her program is to pass out writing prompts. These are questions or topics or themes to get you started. The great thing about writing prompts is that 5 people can get the same prompt and end up writing 7 different things and all of them are on topic.

It's a place to explore your thoughts.

With June's program, participants get to share their writing with other members of their cohort -- other brain injury survivors. Since it's ongoing for a series of weeks, it's also an opportunity to build relationships across distance with a diverse group of people who still share a major life event in common.

And it's all with the stroke of a pen http://www.withastrokeofmypen.ca/

High Blood Pressure

High blood pressure is the silent killer because it doesn't hurt. You can live with it for years as it slowly stiffens and damages the blood vessels in your heart and brain until a clot forms there, drifts there, or the wall of the vessel fails.

The scale of damage high blood pressure does is astounding. In addition to being a leading cause of stroke, heart attack, and, therefore, disability and death at the individual level, it cost countries billions and trillions of dollars in lost productivity and increased health care costs.

And you never know it's happening unless you check.

So target 120/80 and work with your doctor to get there. Pick up a home monitor if you don't already have one. There cheap and may be the key to saving your life or the lives of people you care about.

Chart from heart.org showing levels of hypertension

Stoicism

June has been spending time diving into the philosophy of the Stoics.

Stoicism has a rich tradition extending thousands of years and is underserved by pop culture interpretation of what it means to be stoic.

It's based around four key values:

  • Courage
  • Temperance
  • Justice
  • Wisdom

I think it's easy to see how those values can really come into play after stroke. They inform ways of thinking that can help us get through this new world.

Will it work for you? Maybe. You can learn more at http://dailystoic.com

Survey

Do you have thoughts about the Strokecast as a show? I want to hear about it. Please complete the listener survey at http://Strokecast.com/survey by March 31, 2023 to share your insight. I'd really appreciate it.

Hack

June cited two hacks for recovery.

The first is simply to try typing with your affected side. It's not easy, but those repeated small motions are just the type of motion you want to get back.

The second was to get a TV tray or breakfast-in-bed tray. This is a tray with short legs that you put over your lap. Sure, you could use it for croissants and coffee. June uses it for her computer. By using this platform and a keyboard, she reduces the shoulder and elbow strain that accompanies computer use after stroke.

Links

Where do we go from here?


Here is the latest episode of The Strokecast