A Remarkable Stroke Survivor's Tale: Broken Lady? Hardly!

Get ready for the extraordinary. If you want to donate, and I think you should, there's an opportunity to donate even $1! 

https://www.seedandspark.com/fund/the-great-now-what

But I know how you are. You want to be sure she's worth it. Trust me. She is. Here's Maggie Whittum's story, in her own words, and you can decide for yourself: 

I always wanted to get on stage at the Denver Center. Growing up in Steamboat Springs, it was a trek to get to Denver, but my parents really valued the arts, and made a point to bring me to the opera, the ballet and the theater. When I was 10, we made a special journey down to see The Tempest in the Space Theatre. The show was exceptional and has lived on in my mind for decades.

I thought I was going to be a professional actor, director and producer. I studied drama at Colorado College and spent much of the next seven years living abroad. In 2005, I was lucky enough to perform in a successful one-act comedy at the Edinburgh Fringe Festival. I would return to this for the epic festival in Scotland for the next three summers. In South Korea, I got to appear on a quirky Korean children’s television show. I started an improv group there that still exists. I directed several shows and worked consistently as a voiceover artist.

I was blessed with so much. But living abroad had its drawbacks, so I came back to the U.S. in 2011.

I made some inroads with Denver theater companies. I specifically remember seeing The Diviners by Phamaly Theatre Company in 2011, and being extremely impressed.

I spent a year as a producing and directing assistant at McCarter Theatre in Princeton, New Jersey, then came back to Denver for another year. Then set out to get my MFA in acting at the Academy for Classical Acting at the Shakespeare Theatre Company in Washington D.C. It was an intense and enriching program. I spent all day studying Shakespeare, scansion, stage combat, Alexander Technique, dance, voice and speech. I loved every minute of it.

Then, two days after the first semester ended in December 2014, I got a headache. Forty-eight hours later, I checked myself into the George Washington University emergency room. Two days after that, things significantly worsened. I was put on a ventilator, the left side of my body and right side of my face were paralyzed, and I had kaleidoscopic double vision.

I had suffered a massive stroke.

Terror is the word to describe it all. Piece by piece, my body stopped working. I could no longer move. I could no longer speak. I could no longer breathe. Thirteen days after that initial headache, I underwent a nine-hour brain surgery at Johns Hopkins Hospital. It was a success. I could breathe on my own again, and I went to a rehab hospital.

I thought I could get back all the things I had been before the stroke. But just as my body had crumbled before, my life crumbled after. I had to drop out of school. My engagement ended. I was not able to work for a very long time. I recognized, about nine months after my stroke, that I was now permanently disabled.

I moved back to Denver feeling destroyed and ashamed. But once I was back in town, I made a point to see all of the Phamaly productions. When I heard they were doing the musical Into the Woods, I was absolutely thrilled. I mustered up the courage to audition in January, despite having a paralyzed vocal cord. I was delighted to play Cinderella’s Stepmother.

When I finally stepped onstage at the Denver Center, it was a considerably bittersweet experience. Of course I wanted to be there, but not under these circumstances. I deal with a lot of chronic pain now, and many vision issues, but it was tremendously rewarding and validating to step on that stage and perform again. I got to make people laugh. I got to be a part of an extraordinarily talented ensemble. I got to feel seen again.

Phamaly is an extraordinary company, and I feel fortunate to live in a city where a company like that can thrive, because it wouldn’t be the same if I lived in Miami or Seattle. I can’t wait to see their newest show, Harvey, now playing through Nov. 11 at the Olin Hotel in partnership with Senior Housing Options at 1420 Logan St.

Into the Woods was a major step forward in my life. I am now creating a documentary film called The Great Now What about my experience with stroke and disability. With the support of other trauma survivors, I hope this will be a film about how creating theatre and art together can inspire a community to heal and connect with empathy, compassion and humanity.

Art heals pain.

Editor’s note: Maggie Whittum’s fundraising campaign for her film will be launched on World Stroke Day on October 29. Click here for more information (there's only a short window until November 26)

To summarize:

Steamboat Springs native Maggie Whittum is a Denver actor who has appeared in A Midsummer Night’s Dream (as Puck) and Into the Woods (as Cinderella’s Stepmother) for Phamaly Theatre Company. Previous theatre directing and producing credits include All in the Timing, The Zoo Story and The 25th Annual Putnam County Spelling Bee. She has directed and performed in Scotland, Colorado, South Korea, Taiwan, Hong Kong, Beijing and throughout Canada. She also assistant directed under Tony award-winner Rebecca Taichman at McCarter Theatre in Princeton, where she was named the Charles Evans Fellow in 2012.

Now Maggie has a new project, a movie:

    

This will be an important and impactful documentary film.

Another writer claims: Maggie has it all: brains, beauty, an education, a fiancé, and plans for a family. Then a rare stroke (caused cavernous angioma) shatters her identity, leaving her permanently disabled and with intense chronic pain, a paralyzed face, major vision issues, and more. She leaves school, loses her body, her voice, her face, her vision, her man, her money, her ability to work, and nearly -- her mind. She links up with other disabled artists and performers. Creating theatre and art together, they inspire a community to heal and connect with empathy, compassion, and humanity.

Maggie says, "We have BIG GOALS. Eventually, we hope this film will be featured at major festivals, like Sundance and Telluride, and will stream on HBOGo, Amazon Prime, or Netflix (It's very important to us this film is available via online streaming to people with disabilities who cannot leave home easily.) We are proud to say that The Great Now What has been chosen as a “Featured Project” by the Denver Film Society. We are being considered for several prestigious grants, and this crowdfunding campaign will help us meet funding goals, as well as grow awareness and enthusiasm for the film!"

Here is the way to donate: 

https://www.seedandspark.com/fund/the-great-now-what

Much appreciated! We are at 67% of our goal!

Our $41,000 goal is the bare minimum needed to to complete a film that we are proud of and can release online.

If we raise $50,000, we'll be able to create much more elaborate and compelling motion graphic animations to communicate life with chronic pain!

If we raise $60,000, we'll be able to hire the very best marketing and promotional team to help us reach as many stroke survivors, people with chronic illness and chronic pain, caregivers, and people in the medical community as possible!

"If we raise $70,000, we'll show the world that people with disabilities are not invisible! We'll have more leverage when negotiating with distributors, and we'll be to acheieve a bigger platform and have a major (worldwide!) impact!

"If we raise $250,000 we'll be able to create the best film possible, reach the widest audience possible, fund all of our post-production costs, AND fund all our film festival entry fees, distribution costs, promotional travel, marketing, audience outreach, and make the most powerful and deeply empathetic film that will impact stroke survivors, people with chronic illness and chronic pain, people with disabilities, caregivers, the medical community, and so many more!

"If you are interested in making a tax-deductible donation or investing in The Great Now What, please email us at: thegreatnowwhat@gmail.com. Let's discuss!"

OTHER WAYS YOU CAN HELP

1. FOLLOW US ON SOCIAL MEDIA!

Like our page on Facebook for daily posts about the film, and relevant articles, podcasts, and pictures on disability, stroke, chronic pain, facial paralysis, cavernomas, and more! Encourage your friends to like us too!

2. SPREAD THE WORD ABOUT #TheGreatNowWhat

Tell you friends, family, colleagues, and neighbors about the film - in particular, we want to reach stroke survivors, people with chronic illness or chronic pain, people with disabilities, and members of the medical community. Share our posts, campaign page, and our backer updates! Tweet about us! Here is a sample Tweet!

Join #TheGreatNowWhat #crowdfunding campaign; help make this powerful #documentary #film on #stroke #disability a reality!

Contributions can be sent to: http://www.seedandspark.com/ fund/the-great-now-what

3. JOIN OUR MAILING LIST!

Stay up to date on the film - click here to join - we won't spam you.!

4. KEEP FOLLOWING OUR CAMPAIGN!

Regular visits to our Seed&Spark page keep you in the know AND increase our chances of being featured on the site!

I know most stroke survivors don't work anymore, with no money coming in except Social Security. But there's always a dollar that you can contribute to this remarkable effort. Maybe more. There are almost 800,000 people who have strokes every year, and that's America alone. If everyone contributed a dollar.... You get the gist. 

https://www.seedandspark.com/fund/the-great-now-what

To Boldly Go Where No Insect Has Gone Before: Fuckin’ Fungus Gnats

The first part of the title is self-explanatory, but the altered line from one of the most extraordinary shows, Star Trek, requires some explanation. So keep reading. Once you're done, you'll understand. Now, on with the story.

I had a stroke. No revelations there. And as such, I cannot get out whenever I feel like it to buy things, more specifically plants. So I ordered live plants from Amazon, and that's when it started--tiny, annoying, fuckin' (yes, the profanity is necessary) fungus gnats. First, some background. 

The adult fungus gnat can lay about three hundred eggs in its short lifespan, about two weeks, unless you're lucky enough to smash one. (PETA people, forget it. Even you would find them annoying). Eggs are laid in fertile, moist soil at the base of plants and turn into larvae, rapidly increasing in size as they munch through organic matter in soil.

If you overwater the plants, too much wetness will propel the development of fungus gnats and the roots will begin to rot, making the ideal meal that fungus gnats love. In addition, you might find the fungus gnats enjoying the plants themselves if there's not any organic matter (dead, decomposed worms, for example) left. 

A root drench with one part hydrogen peroxide and four parts water (you have to wait until the mixture runs all the way through the plant and out the drainage hole) is best rather than spraying the plants with insecticide because it rids the problem. You'll have to put up with the gnats for two weeks longer if they've already hatched.

Two weeks ago, there was an infestation before I read about the hydrogen peroxide mixture. So the African Violets and the poinsettia plants, which are very susceptible to fungus gnat damage, didn't succeed. But so far, the other plants came through the process.

And now, To Boldly Go Where No Insect Has Gone Before, will be revealed. 

I have sinusitis and use a nasal rinse (which is disgusting in itself and I lock the door by habit, even if I'm alone, to not let anybody observe), and at the start of the infestation, I noticed fungus gnats were coming out of my nose in hordes. The more I used the rinse, the more I saw the fungus gnats emerge, nasally speaking. Unbeknownst to me, and definitely the fungus gnats, I was inhaling the gnats (I'm going to get dramatic here) with every breath I took. 

So for a week thereafter, I wore a surgical mask 24/7 to keep the fungus gnats from being sucked up into my nose. But I have a few more orifices, like my ears and eyes, for example, and I used appropriate rinses in them, too. 

Takeaways? Don't buy live plants live plants from Amazon and definitely don't buy live plants from a greenhouse in the fall or winter when the fungus gnats are more plentiful, burying their fragile eggs in the moist soil to keep them warm and thriving. 

But Andy and Laura, my son and his girlfriend, bought me a Venus Fly Trap for the remaining gnats, that really does what it says. Look carefully. The picture says it all. 

An Article and a Presentation: Long-term Care and a Stroke Video Project

I know, I know. Insurance companies have a dismal reputation because most of them deserve it. They talk insurance speak--of deductibles, annuities, disability income, expense ratio, hospital indemnity coverage--as if everyone is supposed to understand. And the acronyms the insurance companies use will drive you "mad."

So listen up, family and friends: If you already had a stroke, it's too late to buy Long-term Care insurance, but if you're healthy, you can't make a better investment. That's why I'm guest hosting, albeit and thankfully dummied down, an article by Hazel Bridges that I think is worthy of attention. The author's views are her own. Here it is, from AgingWellness.org:

Every American who reaches age 65 qualifies for Medicare. You can rest assured knowing that your or your loved one’s medical needs will be covered by this government-subsidized health care program. What you might not realize is that Medicare doesn’t cover every need for seniors.

There are two types of Medicare: Original Medicare and Medicare Advantage Plan (Part C). Under original coverage, there’s Part A for hospital care, skilled nursing facilities,
hospice, lab tests, surgery and home health care; and there’s Part B for medically necessary services and preventative services. Part C falls under private insurance with Medicare approval, and the out-of-pocket costs are lower than original Medicare.

What might interest you is what Medicare doesn’t cover: eye exams, dental care, cosmetic surgery, foot care, hearing aids, acupuncture, or long-term care. 

Long-term care (LTC) is especially important to understand because many seniors need this later in life for several years at a time and not everyone plans for it. Long-term care usually refers to custodial care, which is help with daily living. This includes activities such as getting dressed, eating, getting around the house and medication assistance. Since most of these needs are not medical, Medicare generally doesn’t pay for it.

Long-term care can take shape as home care by a skilled nurse or home caregiver without medical training, but it can also involve long-term stays at facilities. Some seniors prefer (and are able to) remain at home with help, but other seniors either don’t have long-term living arrangements or are unable to live outside of a facility that can provide 24/7 care. This is where assisted living facilities and nursing homes come in.

Medicare only covers long-term care under certain circumstances. Skilled nursing care has to be short-term (100 days or less), preceded by a hospital stay, and as recovery from an illness or injury that’s not from a chronic condition. There’s also a helpful program called Medigap, which is an insurance supplement from private insurance companies to cover the gap that Medicare doesn’t cover.

Unless you’ve thought about your retirement years in advance and have all your ducks in a row, you might find yourself struggling to cover the costs of long-term care. Perhaps you’re a junior who is taking care of an aging family member who needs long-term care, and you don’t know what your options are. Or, maybe you’re simply looking into a plan for your own future LTC needs.

Whatever your intention and needs are, you can plan ahead for LTC. If you’ve already reached that point, you can find ways to subsidize the cost with your current income and assets. The most direct choice is long-term care insurance, which does exactly what it says: pays for long-term care. These policies are typically taken out after age 50, years before the service is needed. A healthy 60-year-old can also take out a policy, but your premium rises as you get older or have a condition that could require LTC later down the road.

If cash is needed to help pay for long-term care, one popular option is a reverse mortgage. In a reverse mortgage loan, homeowners can convert the equity in their homes into cash. The lender makes tax-free payments to the borrower since it’s a loan advance rather than a form of income. Just be careful to weigh the pros and cons of this decision.

You may have a long future ahead of you, or you might find yourself trying to make ends meet for yourself or a loved one. Whatever your situation, make sure you understand what your insurance policies cover, how Medicare can help you and how your assets can be converted to cash. You have one life, and you should take care of it as best you can.

Congrats, Hazel, for this informative article. 

And I received this stunning email from Maggie Whittum:

Hello Joyce, my name is Maggie and I'm a stroke survivor and filmmaker. I had a massive stroke at age 33, leaving me disabled. I'm hoping to do something good with my shattered life.

I wanted to tell you about this documentary film project of mine.
Please check out this two-minute teaser.

I'm trying to convey to people what my life is like with 

pain/disability/a shattered sense of identity.

https://vimeo.com/244729372

It's a documentary film on stroke, disability, loss, 

resilience, and the healing power of art. It’s for  

stroke survivors, and people who struggle with 

chronic illness or chronic pain.  

If you would like to share it with others, please do.

Thanks for all that you do!

Maggie

Wow! A filmmaker and a stroke survivor, attempting to
make a difference from her shattered life. Kudos, Maggie,
for an ongoing project very well done! Best wishes!

You can leave comments below for Hazel and Maggie.
I'll pass them on.

The Reason I Had a Stroke: Protein S Deficiency, aka Lousy Genes Will Get You Eventually

My mother, bless her deceased soul, used to have her favorite vegetable at dinner for us most of the time: overcooked string beans, and I, following in the tradition of my mother, use to serve the same thing when I married, dried out and sorry-looking green beans that looked as if they had died last week.

Anyway, overcooked string beans provide little, or none, of the beneficial nutrients. And I ate them, too ignorant of nutrients as a child to care. As an adult, I tended not to have vegetables, except those overcooked green beans, always on my shopping list. So I developed Protein S deficiency, unknowingly to put me right in line--eventually--for a stroke. I was not aware of that deficiency for 55 years.

Medscape's Mohammad Muhsin Chisti, MD, says, "Protein S is a vitamin K–dependent anticoagulant protein that was first discovered in Seattle, Washington in 1979 and arbitrarily named after that city. The major function of protein S is as a cofactor to facilitate the action of activated protein C.

"Protein S deficiency may be hereditary or acquired; the latter is usually due to hepatic disease or a vitamin K deficiency. Protein S deficiency usually manifests clinically as venous thromboembolism (VTE)." Stroke, in other words.

The National Institutes for Health (NIH) Joshi and Jaiswal said, "Protein S functions as a cofactor of activated protein C. Its deficiency is a rare condition and can lead to deep vein thrombosis, pulmonary embolism or stroke. Protein S deficiency manifests as an autosomal dominant trait." [Explanation needed: To have an autosomal recessive disorder, you inherit two mutated genes, one from each parent. These disorders are usually passed on by two carriers.]

There's a test for Protein S and C deficiencies, but would you really want to know? A family member who shall remain nameless heard of my research into Protein S and C deficiencies, but he allowed the doctor to talk him out of it like ostrich-head-in-the-sand approach. 

On the other hand, if you really know of those S and C deficiencies, wouldn't you change your lifestyle a teeny bit, like eat more vegetables, raw even, and foods high in Vitamin K? 

Foods rich in Vitamin K are bearable, some even delicious:

• kale
• collard greens
• spinach
• turnip greens
• Brussels sprouts
• broccoli
• asparagus
• lettuce
• sauerkraut
• soybeans
• edamame
• pickles
• pumpkin
• pine nuts
• blueberries

Here's another view:

Check with your doctor and see if approval for Protein S and C deficiencies testing is do-able. Insist, even. Strokes suck in ways your wildest dreams can't imagine.

Why Do Stroke Survivors Lose Friends?

Through my involvement with stroke survivors at all levels, I heard from a lady who had to move 2000 miles away to get out of an already horrid relationship. Reason being, she was under so much stress that once she had the stroke, the situation was unbearable. The distance was worth it for two reasons, I imagine: the distance put, well, distance between her and him AND she is happily situated now, 10 minutes away, near her daughter. I'm a sucker for stories with happy endings.

My online stroke support group works on giving me distance, too--to stay away from people who can't tolerate that I'm different than when they knew me before! First, some research on why the intolerance.

Studies say it is predicted that by 2030, there will be 12 million stroke deaths and 70 million stroke survivors. It stands to reason that many stroke survivors feel unsupported. So the questions remains, can the complex needs of survivors and families and friends cope with the aftermath of stroke? Or any type of brain injury, for that matter.

It is estimated that up to one-third of survivors will have communication difficulties including aphasia, dysarthria, or apraxia of speech (language comprehension, producing speech, and/or difficulties with reading and writing). Research says stroke survivors with communication problems aforementioned may have difficulties living in a community with those that don't have such problems, resulting in a poorer quality of life and not joining activities of daily living. Furthermore, evidence of the survivors are also more likely to suffer depression and have reduced social interactions. 

The National Institutes of Health published an article about why people lose friends after a stroke and why this phenomenon occurs across the board . 

Under the helm of the English study, Northcott and Hilari explored why people lose contact with their friends, and how friendship loss and change is perceived by the survivors.

Between 8 and 15 months post stroke, 29 participants were recruited, 10 having aphasia. The researchers deduced the main reasons given for losing friends were: 

1. loss of shared activities 
2. reduced energy levels
3. physical disability
4. aphasia
5. unhelpful responses of others
6. environmental barriers
7. changing social desires 

"Those with aphasia experienced the most hurtful negative responses from others and found it more difficult to retain their friends unless they had strong supportive friendship patterns prior to the stroke," says the study. 

"The factors which helped to protect friendships included: having a shared history, friends who showed concern, who lived locally, where the friendship was not activity-based, and where the participant had a 'friends-based' social network prior to the stroke."

Another study by Martinsen et al in a nursing journal examined psychosocial consequences following a stroke and the survivors’ ability to participate in and carry out the ordinary and expected roles and activities of family life. 

Twenty-two stroke survivors aged 20–61 years were interviewed extensively six months to nine years after stroke onset. The struggles are summarized in two main categories: struggling to reenter the family and screaming for acceptance.

"Being provided with opportunities to narrate their experiences to interested and qualified persons outside the home context might be helpful to prevent psychosocial problems," the study says.

Normality includes feeling sad over the problems caused by stroke. However, a portion of the survivors experience a major depressive disorder which should be diagnosed and treated as soon as possible. The people we should focus on are the people with a major depressive disorders which includes a number of symptoms nearly every day, all day, for at least 2 weeks. 

These always include at least one or more of the following, and all the time beyond 2 weeks:
  1.  Feeling sad, anxious, pessimistic, and/or hopeless 
  2.  Loss of interest in things that the person used to
       enjoy
  3.  Feeling restless, loss of energy, and/or feeling
       fatigued constantly
  4.  Feeling worthless and/or guilty
  5.  Increase or decrease in appetite or weight
  6.  Problems concentrating, remembering, and/or 
       making decisions
  7.  Trouble sleeping or sleeping too much
  8.  Headaches and/or stomach problems
  9.  Sexual problems 
10.  Thoughts of death or suicide

What are the takeaway thoughts? There are two. 

First, it is normal for a stroke survivor to experience most or all of these feelings or emotions. Second, family and friends should take heed and be more supportive of the survivor regardless of the healthy one's sometimes biased, small-minded, and me-centered thinking. 

A Stroke Survivor and an Uber Psychopath

My friend has a huge SUV, a BMW with a running board that, as a stroke survivor, on my very best day ever, I can't enter, to travel to and fro. So whenever she comes and I have an appointment, we take an Uber. Every Uber driver I met was pleasant, except one on that horrid day when I encountered a Uber psychopath. 

We were traveling to Adventist Hospital for a bi-weekly blood draw and everything was fine in the "to." But the "fro" was a different matter altogether.

When he stopped to pick us up at the hospital which was a 15 minute ride back to my apartment, my friend and I couldn't tell there was something wrong with him. He stopped, put the wheelchair in his trunk, and we were off. 

My friend asked him if he could possibly stop at  the pharmacy to pick up my prescription, and he agreed. At the pharmacy, once she got out of the car and entered the pharmacy, the questions started and I knew why he agreed to stop.

"Do you want to drive off and leave her here to make out later?" he chillingly said. "I know a place."

In the seconds that followed, I simply laughed, intentionally defusing those words as if he meant it as a joke. But his expression was dead-pan. 

He went on when I didn't answer him.

"We could drive far away from here or, if you'd rather, I could come in your apartment building to make sure you get safely to your apartment."

I laughed again to further defuse, but by now, his tone took on a more aggressive posture. I was on the brink of despair. I didn't look at him again, and I thought of opening the car door, but I didn't have my cane to walk away. It was in the trunk. I thought of getting out anyway and falling down (that was a given), but I might crack a rib or break my nose again or one of hundreds of other possibilities. How could I defend myself as a disabled person? I sat there with a smile on my face, but I felt chilled in the heat wave that was encompassing Portland, OR.

Fortunately, the pharmacy was not crowded and my friend came back out. He repeated the last question to her.

"I could come with you all to make sure you get safely to your apartment. Would you like me to park the car and do that?"

My friend, completely unaware of his thoughts leading up to that question, thanked him but said the building is a secure one so no need for him to bother. 

When we returned, he got the wheelchair and the cane out of his trunk. When he drove off, I told her what happened, and then she became horrified. We talked about calling the police, but then we decided to give him a "1" (you have to rate the Uber drivers) and not giving him a tip, all done by email shortly after the ride happens. We were going to call the police, but as time went on, I forgot the name of the driver and the encounter became less horrifying.

I've come to regret that decision, possibly allowing it to happen to other passengers, especially the disabled. I give myself virtual smacks on the head often. I also wonder if Uber vets the driver for mental health issues. I am an average-looking, 70 year old woman. If it could happen to me, being past the stage of "hotness," what about the others, younger and more attractive than me? 

I'm still wondering, with regret abounding forevermore.

I Was Naked In The Shower With A Man...And More

That title would be something that you'd see in a tabloid. But it happened to me. Before you get all hot and bothered, let me explain. It's not you're thinking.

It is hot here in Portland, OR, with heat advisories for the last two weeks, and my mind is always in thought. I think about my third book, not about strokes, but about relationships. I think about the coast this coming Monday where I can enjoy the mild sun, scrumptious food, and needless though necessary shopping. And I think about my time in the Bacharach award-winning acute rehabilitation facility where I had adventures as well, mostly all wretched. I want to forget about the acute rehab, but at least once a week, there it is, in my thoughts.

It's not that I want to think about it 9-1/2 years later, but it contributed to my Post Traumatic Stress Disorder (PTSD). Take the man in the shower, for starters.

The days seemed endless because they were waking me up at odd hours to take a blood draw, or changing my IV bag for hydration, or a Certified Nursing Assistant (CNA) complaining about the shift, and on the eighth day, the nurse came in and announced that I was going to take a shower. I couldn't talk for almost a month and a half, so I couldn't protest. Looking back much later, I hadn't showered for 32 days since I had the stroke on April 8, 2009. I guess I got sponge baths in the meantime. I don't know, and at the time, I didn't care.

The nurse maneuvered me out of bed and into the wheelchair where I would transfer to the shower chair, taking the IV bag in tow. (It was accompanying me everywhere I went and the shower was no different, the nurse positioning it in front of the shower's curtain). A male CNA was helping her with the transfer, and when I was positioned, she turned the water on. I heard her laugh with the CNA about how she didn't warm up the shower before I got in.

Let's pause here. Do you the iconic movie Psycho where Janet Leigh issues a blood-curdling scream? That incident, memorable to most, was rigged by the director, Alfred Hitchcock, who turned off the hot water as she shot the scene, unknown to Leigh. That scream I uttered was like the scream in Psycho, but worse because the cold water lasted longer.

Anyway, back to the story. I couldn't wash myself, wild-eyed and PTSD'd from having gone in the shower in the first place, not to mention the whole stroke experience thing (which not only devastated me but my sons as well.  Check out this post: https://stroketales.blogspot.com/2018/02/my-sons-my-sons.html)

But soon, fully clothed, the CNA got in the shower with me and spread soap everywhere, even my "down there" region, as my mother used to say.

He rinsed me off as best as he could accomplish, and the nurse turned the water off. But I still had soap in my "down there" place and between my toes. And I couldn't talk. It was a living nightmare because I knew that soap would make me itch. And it did, two hours later.

The nurse dried me off and the CNA, dripping wet and assisting the nurse who got me back in the wheelchair, went to torment another patient, I thought.

I'll never forget her words as she breezed out of the room.

"Don't you feel better," said as a statement instead of a question.

"I feel like shit," I screamed silently, but the one thing I didn't have anymore was modesty. I fell asleep, wondering if I could change my profession to a stripper from a college professor because modesty had become a non-issue. That thought alone was deranged, but I didn't realize it at the time.

Breaking (albeit 9-1/2 years old) news: Bacharach didn't deserve that award. Protocol couldn't have been to send the opposite sex in the shower with the patient. And, oh yeah, I had become a delusional mess.

Quirky Personality of the Stroke Survivor: Caregivers Are the Most Important Part

C’mon. You must know a stroke survivor, with 800,000 getting strokes annually, and that number is just for the United States alone! At the very simplest common denominator, this post is for:
* Stroke survivors trying to figure out why they're different from before
* Families/friends trying to understand the stroke survivors' change
* Caregivers who act as a bridge, aka lynchpin, between survivors and families/friends

First, some background. Scientific American's Jon Stone, a consultant neurologist, writes, "Friends and relatives may report a personality change that is hard to pin down. Some of these changes, such as low mood and anxiety, are more likely to be related to a person's feelings about having a stroke than to any harm to the brain." 

But he contradicts by saying (I am the critic, too), "A genuine shift may occur, however, when the frontal lobes sustain damage. The frontal lobes play an essential role in regulating emotion, decision making, and judgment." 

"A stroke that hits the cerebellum," he continues, "can also trigger a personality shift. This brain region is vital to many aspects of executive function. Damage here can bring about disinhibition, which often manifests as inappropriate behavior. Other 'negative' personality changes include poor decision making, aggression, and irritability."

He also says less common are cases of “positive” personality changes, in which people reportedly become happier and even nicer. (I became more compassionate and less judgmental).

The Stroke Foundation of Australia lists changes in personality including inability to do anything, being irritable or aggressive, saying or doing things that seem inappropriate to others, and acting without thinking, and doing things that are not safe or are not appropriate. 

(In my book, The Tales of a Stroke Patient, I escaped from the sub-acute facility, and lived to tell about it, in search of soft-serve ice cream, ignoring safety concerns like traffic and mixed-up directions. Poor decision, right?)

In an article "The Psychology of Stroke in Young Adults: The Roles of Service Provision and Return to Work," written by Reg Morris and published by the venerable National Institutes of Health, the study is recounted that young stroke survivors have more practical and physical needs than old survivors. 

Stroke survivors under 50 years of age were studied, and found that family conflict and loss of home, employment, and spousal dissension were common practical problems. 

In summary: 

Employment loss was rated 80%–90%.

About half of survivors had psychological disorders, mostly depression or anxiety about work, recovery, and childcare.

A quarter to a third exhibited denial, anger, frustration, or hostility.

A majority expressed problems with employment, finances, social participation, and/or sexual problems.

Frustration was a main theme found in survivors under 55 years old, for up to two years after a first stroke. 

The frustration was related to fatigue that affected everyday activities and gender roles. 

Invisibility and "outside the loop" centered around lack of information and consideration of young survivors, a shortage of activities for the younger survivors, and the awareness of their apparent cognitive and yet "invisible" impairments. 

The austere Cleveland Clinic says the loss of a person’s former identity can result in depression, anger, and frustration which calls the grieving process, denial, anger, bargaining, depression, and acceptance, into play.

Some stroke survivors have difficulty with their communication skills following a stroke. They can be categorized in two general areas.

The first is speech disorders, says the Cleveland Clinic, and the second is aphasia, "the loss of ability to communicate normally resulting from damage typically to the left side of the brain, which houses the communication center." It may affect a person’s verbal expression, auditory comprehension, and the person's ability to read, write, and manage numbers.

"Some stroke survivors may have slurred or garbled speech as a result of muscle weakness or incoordination (called dysarthria) or motor programming of speech muscles (called apraxia)."

A Speech-Language Pathologist (SLP) will be on the scene to evaluate the patient’s communication skills and show ways in which the family can help. The SLP will also recommend any follow-up after the survivor is released from the hospital. 

And finally, the most important part in this post. The American Heart Association journal, a study was published and it was named "A Quantitative Study of the Emotional Outcome of People Caring for Stroke Survivors," i.e. caregivers.

In a randomized trial, the patients and caregivers were asked to complete 2 measures of emotional distress. A "regression analysis" was used to name the factors that were associated with poor caregiver outcomes.

Fifty-five percent of responding caregivers indicated that emotional distress is common. Caregivers were more likely to be depressed if the patients were severely dependent.

The study's main goal was to help to identify those caregivers at greatest risk of poor outcomes. 

I could have told you that. Hands down, every profession from street cleaners to neurosurgeons have people in those occupations that shouldn't be there. Yes, caregivers, too. You know someone who shouldn't be what they are if you really think about it. 

When it comes to caregivers, they are the most important of all. They are the lynchpin to find the common ground on which the survivors' antics, if you will, are understood by family and friends. 

It's all up to you, caregivers, because things happen fast in the world of stroke and other brain injuries, leaving the family and friends who come to see them, too soon in most cases,  bewildered and angry, and often times there is no source for that confusion and disarray.  It just happens. You can't blame the stroke survivor, yet many of them do.

So if you're a caregiver, DO YOUR JOB, and that means going the extra mile beyond bathing the poor soul and cooking the meals that aren't high on the priority list. Try to make sense, to the families and friends, of the stroke survivor's behavior. Or any brain-injured person, for that matter.

Otherwise, as I've said to the caregiver, more times than I'd like to count, "Get the hell out!"