What do you hide from the world?

/ wantonwordflirt / 7 Comments

Greetings new followers, as well as the faithful readers who always patiently await my return! Like Spring, I do eventually show up, full of hope and the promise of renewal.

So what prompted me back here today?

Oddly enough, it is the intersection of a fiction book I am reading for the local library book club, an upcoming meet-up I will be having with a group of medical students, and a presentation by a physician who is an artist/creator.

The title of the book I am currently reading is “The Vanishing Half” by Brit Bennett. I’m only half finished the novel, but it is providing me pause for thought. Without giving too much away, the story is about twin black sisters who, though inseparable as children, decide to live in two different worlds, one black and one white.

Midway through the book a Trans character is introduced. At that point I became fascinated with the thought of how people, though not necessarily to the extent of assuming another race or transitioning gender, live in a world that does not accept who they really are.

While mulling it over all week, I also asked myself what parts of myself do I hide from others? My initial response was nothing. I consider myself to be an open and authentic person.

Then I got the meeting reminder. This week I would again be with a handful of medical students I am matched with to continue the exploration of what it is like for me to be a patient in the context of a chronic illness that affects me on a daily basis.

“Society and Illness” is the topic this session. Possible discussion topics we were provided with include: how illness affects patients in society; how/when patients choose to talk about their illness; physician’s assumptions and biases which may affect patient interactions; visible vs. invisible illness and stigma.

Boom! There was my answer. What I hide from others nearly every damn day is having chronic illness. Since I am revealing this fact on a blog site that thus far has been primarily about my illness, it seems rather contradictory and illogical. I won’t blame you if you do not believe me, but it is in fact true.

The world we live in, though admittedly changing, is still a white, cisgender world. It is also a world for the strong and healthy. There is no favour to be won in society by admitting to chronic illness or invisible disability. Revealing illness seems akin to admitting weakness and vulnerability. Alternatively, disclosing and discussing illness may be viewed as attention seeking behaviour.

So why did I start and continue this blog? That is a question I seem to cycle back to, time and time again.

Initially my motivation was to share my experiences of illness with others so they would feel less alone in their struggles. I find reading about the medical adventures of other patients informative, fascinating, and validating, so thought I could reciprocate with my own stories. I also hoped sharing creative expression as a method of “healing when cure is not to be found” might be helpful.

Last night, I attended a workshop by Dr. Kevin Dueck, an Ontario primary care physician who also works in emergency medicine and addictions. In his presentation “Staying Human in Medicine”, he talked about art, story and creation being an outlet and means to process events, explore feelings, and personal expression. He shared some of his own creative work.

(Dr. Dueck’s writing can be found at http://www.Abootmedicine.wordpress.com)

Dr. Dueck was, of course, speaking from the physician perspective. He talked about the secondary trauma ER docs experience, the patient suffering they witness, the issues surrounding medical hierarchy, moral distress and the barriers to executing the care they wish to provide individuals, and of course the culture of toughness within the medical profession. He talked about sublimation as transformation rather than repression.

And that is when I realized why I continue to come back to my blog even after long absences. It is also why I return to themes of living with chronic illness, even though that was not my first intent. Here, I do not have to repress, censor, ignore, or pretend. I can transform, rather than repress. This is a place for me to create and connect with those who are willing to accept.

Hey, don’t judge me based on my past! Guess whose music I love now?

/ wantonwordflirt / 4 Comments

I remember having music in my life as far back as I can remember. My Papa had records like “Sing-a-long with Mitch Miller” which were really corny “pop” songs from the 1950s-60s….that had lyrics like “mares eat oats, and does eat oats, and little lambs eat ivy”.

And Grandma and Grandpa had CFCW country radio on all day long in their upholstery shop as they worked, so I heard lots of Tammy Wynette, Johnny Cash, Glen Campbell, Patsy Cline, and George Jones. I do not recall liking it or not liking it, it was just part of the work environment, always on, every moment my grandparents were in the shop.

So that was my first exposure to music, along with listening to “pop” music of the 1960s on my Dad’s  car radio when we travelled or to albums we had at home such as “Herb Alpert and the Tijuana Brass” played on the big console stereo in our living room.

My other early exposure to music was via my Uncle Ron. When I was little he was still a teenager. He had an electric guitar he could not really play, but he had record albums of Steppenwolf, Jimi Hendrix and Janis Joplin he would listen to up in his room. Quite a contrast from what was on the radio out in the shop. And Aunt Louise was a huge Elvis Presley fan, so I heard lots of his music too. I had a very eclectic start to music exposure!

When I was around 10 or 11, Auntie Sis (Velma) gave me a hand me down stereo. It was a “portable” stereo that kind of looked like a blue suitcase on its side. A door opened and pulled down which was the turntable, and the two speakers were on each side. Having my own record player I now began to get my own records, the first two were “The Archies” (a “fictional” band) and “The Donny Osmond Album”. My two favourite songs were “Puppy Love” by Donny Osmond and “Everything’s Archie” by the Archies. They were followed by The Partridge Family album because I was in love with David Cassidy, the oldest son in the fictional TV family The Partridge Family. My favourite song by was “I Think I Love You”. Sonny & Cher also had a popular TV show at that time, so of course I liked them too, especially the two songs:  “Gypsies, Tramps, and Thieves” and “I Got You Babe”.

I was lucky enough to have “disposable income” from my allowance, or birthday gift money;  then later at age 12 I started to babysit, so I had money to buy “singles” or “45s” for $1.00 or albums for around $3.99. I recall it being exciting that mom and dad let me go into the chain record stores like “Sam the Record Man” and “A&A Records” in Londonderry Mall (the newest mall in Edmonton at the time) by myself to buy a new record or two. I loved record shopping!

Some of my money also went to buy magazines at the drug store such as “Tiger Beat” that were full of photos and stories about the teen music idols of the day – David Cassidy, the Jackson 5, the Osmonds, and Bobby Sherman. Of course I also liked the popular K-Tel records which featured all the “hottest” songs of the year.

I had lots of fun with friends and my record player + records downstairs in the basement, as we “lip-synced” along to the songs holding the microphones I made out of tin foil. I can only imagine how much fun we would have had if Karaoke would have been available!

(*This post was the introduction to a narrative I was asked to write for “Story Worth” in response to my son’s question: “What is your favourite song/band/album?” If you have not heard of www.storyworth.com I recommend you check it out. We will not see the finished product – the printed book – until the end of 2021, but I love the idea of a question a week to prompt  memoir writing so families get to know more about their loved ones, and have it compiled in a keepsake book. Note: I have no financial interest in the company.)

I’m back. Hope the magic will follow.

/ wantonwordflirt / 10 Comments

In the last eight months not one person has asked me why I have not written a blog post. I could be devastated, crushed, demoralized. I could decide to scrap the whole thing.

Maybe I should quit.

But I am not going to. Not yet.

Why bother, you may ask, if no one even notices when you are missing?

Because even though no one wondered enough to ask me why I was no longer posting new content, when I looked at the analytics of my blog I discovered that even in my absence, new readers continued to discover the old posts. I have always said if my writing helps even one person, then it is worth my time.

I began my blog after reading “Let’s Pretend This Never Happened” by Jenny Lawson. I discovered beside writing memoir, she also had a blog: www.thebloggess.com   

Her writing focuses on her day to day struggle with anxiety and depression. She writes authentically, with sarcastic humor. She is an inspiration to me, as is every person trying to live their best life with health difficulties, either mental or physical. I would say that is damn near all of us this past year or so. And if it isn’t “us”, then it is someone near to our hearts.

Jenny now has two follow-up books to her debut memoir. Her struggles continue; her writing does too. Maybe Jenny Lawson doesn’t just write for an audience. Maybe she writes to save her life.

Maybe I don’t just write my blog posts for you. Maybe they are for me too.

If this post seems incoherent and scattered, you are not wrong. You would also be right if you guessed that is a reflection of my state of mind over the last eight months since my last post.

I did not write new blog posts because I typically wish to add a dose a humor to my stories. I’ve always been able to find humor in any situation, but over the course of the past months, even my dark medical humor was missing. And that folks is how I know I have not been myself.

I know I am not alone. Though I have not been present here, I have not been in seclusion. I have been off cavorting with words in other places. I’ve been in online courses and writing groups with other “creatives”. I’ve felt the weight of the longing for normalcy in our days, human connection, and the yearning for creativity to spark once again, in myself and others.

I’ve decided to stop waiting for creativity to strike like lightning, for the light bulb to appear over my head, and instead just get butt in chair, pen to the page, fingers to the keyboard, and let the magic return one word at a time.

And isn’t that how magic happens? Take a leap and believe.

Happy Grandparent’s Day!

/ wantonwordflirt / 3 Comments

My first three grandparents died when I was 11, 13, then 15 years old. All were “young”; my grandfathers under 70, my grandmother just 58 years old. The fourth I was fortunate to have in my life until my mid-30s.

Today is what many consider just another “Hallmark Holiday”, a day invented by the card companies to guilt people into buying overpriced pieces of cardstock filled with pre-printed sentiments they may or may not actually feel. Today is “Grandparent’s Day”.

When I was growing up this day did not exist, so I am inclined to be a bit cynical, believing it is a commercial invention. My family does not celebrate this particular occasion; rather we include the grandparents as part of Mother’s and Father’s Day. We are an efficient bunch.

Recently I noticed both of my parents somewhat melancholy when the subject of my grandparents comes up in conversation. A sense of loss no doubt resurfaces, along with awareness of being nearer end of life than beginning. Perhaps, like me, they are pondering how they will be remembered by their grandchildren.

I think it is disappointing for my mom to realize how few memories I have of my maternal grandparents – my Papa and Gram. She forgets how young I was when they lived in the same community, before they moved far away. Mostly they are known to me through what I have heard from my parents, and a few old photos.

What I do remember as personal memories are a handful of vivid vignettes, miniscule fragments of memory which at first seem irrelevant but are in hindsight moments of emotional connection for me. I remember watching Papa fishing; casting off a shore of a lake somewhere. A trip sitting in the backseat of their white station wagon going up the long mountainous hill between Beacon Corner and Bonnyville with Smarties for a treat. Eating delicious smelling homemade soup out of a bright turquoise plastic bowl in their kitchen. Looking inside the old pop cooler with glass bottles hanging in ice cold water when they lived and worked at the gas station. Petting their old black velvet-eared Labrador “Sparky” outside. Those are the only memories I know are authentically mine, not re-creations.

I have greater recollection of my paternal grandparents, as I spent a longer period of time with them. Going “to town” with Grandpa in his Volkswagen beetle to do the grocery shopping was an adventure. My earliest memory of Grandpa is him “taking off his legs”. How could that not have left an impression? He was a double amputee, who took his prosthetic legs, with socks and shoes attached, off at night. He would share the Rosebud chocolates in his bedroom cupboard, as I glanced at the images on the cover of his nightly reading – The National Enquirer – usually images of aliens and UFOs. Nights sleeping with Grandma in her bed, clinging to the edge so I would not roll into the middle, to possibly be squished (or so I thought). Grandma working alongside Grandpa “in the shop”, CFCW country radio blaring in the background. Her phone calls to ride my bike over to her house to “pick up perohy”. The all-encompassing hugs snug against her soft round body. Her genuine laughter, both in person and on the page. I always say Grandma was the originator of “LOL”; when I was at university she sent handwritten letters with “ha ha” scrawled after many sentences.

None of these memories are extraordinary on their own, but like the quilts my grandma made of fabric scraps, the bits and pieces come together to make something beautiful – something that feels a lot like love.

5, 4, 3, 2, 1, lift off…..I was too tired to start at 10.

/ wantonwordflirt / 2 Comments

The past week has been a struggle for me energy wise, even more so than most. It is never a surprise when I get a plummet. Like many who suffer with Sjogren’s or other connective tissue diseases, my energy can wax and wane somewhat from day to day. The fatigue overall is relentless.

Even within a day, I may start off strong only to wither away by lunch. Likewise, I could be in my housecoat until brunch barely moving; then pick up speed throughout the day, finishing strong at 10 p.m.

On the “good days” I tend to “over do”, resulting in subsequent days trying to restore and rejuvenate my aching body, my tired mind. Most of the time my life feels like the cliché: “one step forward, two steps backward”.

Learning where the fine line is between not enough and too much is a constant battle for me. I’m the Goldilocks of activity.

Today this quote came up on my Facebook page as a memory from nine years ago:

“You can’t get much done in life if you only work on the days you feel good.” ~ Jerry West.

Well, that explains a few things.

I never feel good, I just feel less bad. I cannot even remember the last time I woke up in the morning, and popped out of bed thinking I was James Brown “I feel good. I knew that I would!”

In general, humans believe the people who are successful are so because they motivate themselves and give life their best regardless of how they feel. To be successful, people must persevere. I do not dispute that whatsoever.

It is also common belief if someone isn’t working hard, or “up to their potential”, they must certainly be “lazy”, or the more polite term “unmotivated”.

If there is one thing having the several autoimmune diseases I’ve been diagnosed with has taught me, it is not to judge other people. If someone isn’t able to take care of business, getting stuff done, I am more than willing to give them the benefit of the doubt. There must be a good reason for their ineffectiveness, or lower productivity. However, I have immense difficulty not judging myself.

Acceptance of my finite amount of energy is difficult for me. I’ve always been a planner, a dreamer, and a doer. When you have high expectations of yourself, it makes sense your lack of ability to follow through would leave you feeling less than adequate.

So, what does keep me slogging along, getting as much done as possible despite my exhaustion?

The answer came today. Not as a revelation, but a reminder.

I saw an email ad for a seminar with life coach Mary Morrissey, in it she said even for a fully fueled rocket to be launched into space, it requires a booster rocket. She believes people are like that too. Even though we may be ready to launch, we still require a booster rocket too.

Thank you to my booster rockets – the people who don’t blow sunshine up my butt saying I can do anything, but who encourage me to do the best I can with what I have on any given day. Who knows? Someday I might really take off.

#writeforyourlife

/ wantonwordflirt / 3 Comments

While presenting a workshop I attended this week via Pandemic University, Michael Lista suggested people know they want to write, or what they want to write, long before they know the why.
Being a naturally introspective sort, I have been contemplating my “why?” ever since.

Then today I came across a fellow Sjogren’s friend’s post online saying she is going to be returning to writing her blog this weekend. Her comment to friends and family was “It’s scary”. This was my response to her:

“Being scared means you are vulnerable, being vulnerable means you are authentic, being authentic means you got real with your words, and that is what people relate to the very most. It’s all good.”

Today as I thought about why I write, I drilled down to be more specific, thinking about why I write about personal health issues. The personal health topic brings me the most fear when writing, but probably not for the reasons you might guess. What scares me the most is that people might think I am doing it for attention or sympathy. I fear people thinking I am being dramatic regarding events that happened. Trust me, truth IS stranger than fiction; I do not need to embellish a word.

So what do I want?

Why write health stories to post publicly?

One is a selfish reason, the other altruistic.

First, the selfish reason. I have zero desire for sympathy. However, I do crave understanding for my particular situation. I want people to understand my strange constellation of autoimmune connective tissue illnesses, the myriad of symptoms that combine to make every day a new adventure.

The second reason is to educate others, in the hope of preventing them, or someone they love, from suffering needlessly as they wade through the murky bog that diagnosis, treatment, and living with a chronic health issue of any type can be. I want to spare people needless anxiety, especially if they are in the middle of a health misdiagnosis fiasco.

So that is the why of writing about my medical issues. But what about my other writing – the word balm poems, the “bite-size” childhood memoir, the Mr. Wanton stories, the fiction and other memoir not yet published on my blog or elsewhere, but still buried in notebooks between other journal writing?

When I was a young girl, I remember playing games like tag, or Blind Man’s Bluff, running to breathlessness, being chased, kids hollering “run for your life!” I ran to be “safe”.

Now, “I write for my life”.

That said, Michael Lista also told the class this week: “Never trust a writer who thinks they’ve figured it out.”

 

Links that may be of interest:

Friend, fellow Sjogren’s patient, writer Christine Molloy’s blog “Thoughts and Ramblings on Life, Love and Health”. http://www.christinemolloy.com

Writer Michael Lista’s webpage. http://www.michaellista.com

Pandemic University, a totally fake university with excellent 90 minute live and archived writing sessions presented by experts in the field. http://www.pandemicuniversity.com

Mr. Wanton’s new nickname for me!

/ wantonwordflirt / 6 Comments

Having ordered my groceries on-line, I was waiting for the call to go pick them up curbside. No pre-set pick up times out here in the boonies; you go get the groceries immediately when they call.

While I was waiting at home for Sobey’s to call, my three year old grandson called to FaceTime with me. Sometimes he calls, talks for 30 seconds and is done, but this time he was chatty. After a couple of minutes, the landline phone starting ringing. Call display was showing it was the grocery store, so I picked up while still on FaceTime on my cell phone with Charles.

As I was confirming my credit card number with the Sobey’s clerk, I had a sudden urge to use the washroom. ARGH! Why does everything happen at once? Quickly, I finished my Sobey’s business, then told Charles I must end my FaceTime call, so I could go to the bathroom. Charles protested,”No, Baba I want to talk to you.”

“Talk to you later! Love you!” I hung up, feeling like the worst grandma ever!

I had on my “dog pants”; the pants I usually wear at home so when our Labrador Retriever slobbers on me it won’t matter. I grabbed clean yoga capris, pulling them on quickly, as I dashed out to my vehicle.

Mission accomplished, I returned home to spend the next four hours washing everything from the store, putting it away, then making our supper, and finally doing dishes. After supper, Mr. Wanton and I were relaxing, watching TV. I looked down at my legs elevated in the recliner.

“OH MY GOD, my pants are inside-out!”

With no emotion, Mr, Wanton replied, “So? It’s just us here in the house, who cares? It doesn’t matter.”

I jumped out of the recliner like it was an ejection seat.

“I wore these pants uptown!” I shouted.

I spun my body around so my backside was towards Mr. Wanton.

“Can you see the tag? Is there a tag hanging on my butt crack?”

“I can’t see your butt at all; your shirt is so long.”

I tugged my shirt up.

“What about now?”

“Oh yah, I can see the imprint of the brand and size, but the pants have no tag.”

Now, I was laughing, realizing unless someone was close to me they would not see the seams of my pants on the side of my legs. Whew.

I actually had inside-out pants on for the last six hours and didn’t even notice. I asked Mr. Wanton if he thought me going to town in inside-out pants was a sign of being too relaxed, or too stressed? He diplomatically “pleaded the fifth”.

A few days later, it was my birthday. For the first time ever in his life, Mr. Wanton baked a cake.

My parents, my son, and his girlfriend came for an outdoor visit. Mr. Wanton was in and out of the house as he checked on his cake project. My Mom asked him what kind of cake he was making.

“Square“, he said with a smart-ass grin.

“No, it isn’t, it’s a rectangle. Two sides are long. ” I laughed.

“Square, rectangle, same thing.”

I said, “If that cake is a square, then I am hourglass shape!”

“What shape do you think you are?” he asked.

“Rectangle! Just like the cake! A vertical rectangle, with arms and legs, and a head sticking out.”

“Like SpongeBob SquarePants?” he asked.

“Exactly! Except I have a head on top!”

The cake and the birthday visit were both a success.

That night as I collapsed into bed, a voice came out of the dark.

“Goodnight Sponge Baba Inside-out Pants!”

Mr. Wanton’s Wild Ride

/ wantonwordflirt / 7 Comments

Mr. Wanton’s transplant medications make him prone to skin cancer, so for Father’s Day I bought him a SPF 50+ hat. I ordered it from Coolibar.* The package from the USA took over a month to arrive. Yesterday, he wore his hat for the first time.

Headed out to mow the grass, Mr. Wanton had on long pants, a sun protective hoodie, and his new hat. He also had on his “PPE” – a facemask and goggles – not because of any danger but because he has seasonal allergies. He is allergic to every type of vegetation in our rural yard, except spruce. Finally geared up, off he went.

While he was mowing, I was inside vacuuming. I noticed the ride-on lawnmower parked in the shade outside the living room and he was kneeling down doing something beside it. I was unconcerned as he occasionally tunes up the mower mid-job.

About 20 minutes later, he stepped into the house holding up a long, dirty, ripped, and torn rag. I was confused. Why was he showing me the rag he was using while repairing the mower?

“I ran over my hat.”

“THAT’S your hat? Your brand new hat?” I knew the answer but asked anyway, not wanting to believe it.

I started to laugh uncontrollably. I could barely breathe. I managed to gasp, “How?”

“My goggles fogged up because of the heat (31C). I couldn’t see where I was going. I got too close to the edge of the yard. I thought I was going over the 150 foot bank, so I quickly put the mower in reverse. Then I backed into some branches, my hat came off, I ran over it, getting it tangled in the blade. Apparently you can be wearing too much PPE, and be unsafe.”

He smiled; sort of.

Then I remembered how much I paid for the hat. Seventy dollars $US. I picked out that hat specifically because it had the widest brim as well as a cord you could cinch up. If Mr. Wanton was in the boat zipping around the lake and his hat flew off, it would not get blown away. Even though I was still laughing, my eyes welled up with tears at the thought of how much I had spent.

“Don’t order me another hat.”

“Don’t worry, I definitely won’t. You will be getting a $5.00 sombrero from the bargain store instead!”

Mr. Wanton located his old hat in the closet; slapped it on his head. He went out to finish the yard. I finally got control of my convulsive laughter, but one glance at the de-constructed hat on the floor and I started all over again.

Coolibar has lifetime fabric warranty. It might be worth sending the hat back, just to imagine the face of the customer service representative pulling it out of the package…and to anticipate the reply we might receive in return.

*Note: I have no financial interest in the Coolibar sun protection clothing company. I have purchased numerous cotton/bamboo jackets from them over the last decade.  I love my Coolibar hoodies.

Mr. Wanton had a change of heart!

/ wantonwordflirt / 3 Comments

Nearly nine months ago Mr. Wanton, my husband, had a heart transplant. Because of his blood type (A+), he was fortunate to have a relatively short wait on the transplant list. A new heart became available to him less than six months after being placed on the list. Some wait years. Some run out of time.

Of course a heart comes from a deceased donor, unlike some instances when a kidney or a partial liver comes from a living donor. We all have only one heart, no spare parts to share. His heart came from someone who was clinically brain-dead but still had healthy organs. The person’s brain was functionally deceased, which is most often due to some sort of accident such as motor-vehicle incident, or perhaps a drug overdose. The donor organ often comes from a young, otherwise healthy person. We do not know anything about his donor. We may never receive any information about them.

There are no words to describe the depth of gratitude we have for the person who gave my husband the gift of their heart, or their grieving family who ultimately made the final decision for their loved one’s organs to be donated. “Thank you” is just so small.

Though Mr. Wanton was not on the list long, his journey to get there was not an expedient one. He was first diagnosed with heart failure due to a suspected viral cardiomyopathy as a result of a typical seasonal flu virus seven years prior. Then for two years before his transplant he was being kept alive by a mechanical heart pump – an LVAD, which is portable life support often referred to as a “bridge to transplant”. Mr. Wanton was plugged into the wall at night by an electrical cord I called “his leash”. He carried rechargeable batteries the size of VHS tapes on his body during the day to keep the pump flowing, his heart going.

Understandably my focus was on Mr. Wanton for the last few years. He has recovered well. It is now time for us to return to regularly scheduled life. It is time for me, to return to me.

Seems I am the Sjogren’s groundhog, appearing once a year….

/ wantonwordflirt / 9 Comments

July 23rd is World Sjogren’s Day, a day set aside to honor Dr. Sjogren who identified the illness. The syndrome was officially recognized in 1933,
yet it remains an often undiagnosed/misdiagnosed illness. There is still no specific treatment for Sjogren’s. Because researchers still do not know with absolutely certainty what causes Sjogren’s it remains without a cure. Before you can truly fix something, you need to know how and why it is broken.

So though I have only posted on my blog once since this day last year, World Sjogren’s Day has me poking out of my hole to remind those “in my world” awareness needs to continue so that some day there may be, if not a cure, at least targeted effective treatment.

It is amazing what one can get used to when you experience it daily for years – in my case the chronic exhaustion, muscle and joint pain, the dry sore corneas and mouth, the side effects of chemo meds for Sjogren’s related autoimmune hepatitis. In spite of it all, I am doing quite “okay”.

On this day, my heart goes out to the newly diagnosed who are just learning to accept and navigate the myriad of symptoms and illnesses associated with Sjogren’s Syndrome. And to those who are yet to be diagnosed but searching for answers as they go “shopping” from doctor to doctor looking for one who has knowledge of this still seldom known illness with its diverse constellation of symptoms – do not give up!

For more information read my archived blog posts and/ or contact the Sjogren’s Syndrome Foundation.

Click on chart to enlarge:

P.S. Stay tuned; I plan to be here more often thanks to some inspiration from a writing friend mentor. Reading her recent work has reminded me that writing is indeed “good medicine”. 🙂