Wednesday, October 29, 2014

Memoir Progress Update

One rebuilt garden bed with new mulch!
The support I've received for this project so far has been wonderful. As of this writing, 43 individuals provided $1,184. This is enough money for me to pay expenses incurred during this campaign, to pay for an editor, and to pay for two days at a four-day poetry retreat in November with the Green River Writers to edit a few poems that are going into the memoir. I plan to get a lot done in those two days.

Next up -- paying for a month or two in seclusion to finish the memoir. Just to be perfectly clear, this time does not exclude regular work for clients. Instead, it is to finance travel to one of several writers' retreats (if I'm chosen), or to pay for a getaway from the chaos at home to have quiet time to finish my research and writing. My family WANTS me to leave to finish this project, so help them out! =)

In other news:

  • This is my last week at dad's house. I've finished weeding and separating the flowers in mom's garden beds (all ten of them), weeded along the fence and around the trees, and had mulch delivered for the front beds. The mulch for the back beds is arriving after I leave. I used mom's new garden gloves that she purchased before she died and never used, and I poked holes in the ends of the fingers. Dad said, "I'm sure she won't mind." Despite my initial fears over tackling my mother's gardens, I think I did fine by her.
  • Packing to return home includes items from around the house that dad wants me to sell. I have to put on my "impersonal" persona when conducting this work, because I feel as though I'm selling memories. On the other hand, it feels great to downsize, and I'm conducting this activity on the homefront as well so I can relieve my daughter from this task upon my death. I never realized I inherited my "hoarder gene" from mom. I've learned since mom's death how to hide that hoarding (in drawers, closets, and the attic!). I'll post more items to my Etsy shop (GoinOriginals) next week. Sending a "thank you" to my new customers at that venue!
  • It appears no one has really taken me up on the contest challenge yet. Too bad! But, there's still time to compete (until November 24th!).
  • It appears that folks are taking me up on my $1 birthday wish challenge at the Cancer, Caregiving, Contentious Love Indiegogo site! Wonderful! Those dollar bills add up! (hint for those who want to compete in the previously mentioned challenge -- I'm trying to help you!)
  • Thanks again to Denise at Caregiving.com for offering a new space to blog about my caregiving adventures with dad. Latest post: My Fears About Leaving Dad Alone.

Since I'm busy packing and traveling over the next two days, I won't be posting anything here until Friday. Be good, take care, and be happy if you can. <3

Saturday, October 25, 2014

Initial Referral Contest Leader Board

This is a screenshot of the leader board on the dashboard at 12:01 a.m. (yes, I was one minute late due to slow Internet issues). I'll post the leader board again on Friday, October 31 in the morning. You have plenty of time to sign up and gain interest -- view the referral contest information and follow the rules to win!


PS -- I'm not a contestant. =)

Thursday, October 23, 2014

Some People Who Support the Arts

I'm also a fine artist; but my writing is, at the moment, far more important to me, because I feel I have a story to share that can help other caregivers. I created this oil pastel in 2007 after a visit to the Bahamas as a professor's assistant for an archaeology project on San Salvador.
It's time to catch up on all the thank you notes for folks who have supported my Indiegogo project since October 13th. I look at Indiegogo fundraisers that bring in thousands of dollars, and I realize that they're for tech products. Then, I look at Indiegogo fundraisers for the arts, and we all lag behind those tech products by thousands of dollars. Therefore, I'm so very grateful to the individuals listed below, because they see value in my ability to tell a story. They are investing in my art -- that art of memoir.

  • I'm grateful to my film/documentary maker friend, Jacques Laurent. I met Jacques when he arrived in La Grange from France to film the trains that run through the town. We have been friends since, and I'm grateful that he's my first overseas supporter! (I have supporters in Canada, too -- not forgetting you! <3).
  • I'm grateful to the anonymous donor who decided to support me in a huge way. Much love and many, many <3!
  • I'm grateful for Amy Wellborn's support. This fine artist thanked me in person one day for my gratitude lists. I was overwhelmed, because it's rare that someone in this world will make time to thank someone in person. I'm guilty of that same lack of support for some of my friends. Love you, Amy!
  • I'm so grateful to Kristi Weber, who will always be one of my favorite poets. We met in April this year during Robert Lee Brewer's Poem-A-Day challenge, and I remain sufficiently charmed by her attitude, perspective, and downright solidness in being herself. She supported me the day after she learned she finally had a job -- now, that's digging deep. <3 to you, Kristi.
  • Gratitude to my long-time friend Sharon Jones -- an artist I met when living down south -- for her support. She could have bought me a rum and coke, but chose instead to support my art. Big thanks! =)
  • So grateful to Ursula Powers for her support. We've known each other since the BP Gulf Oil disaster, where we tweeted against BP. Power to the people, especially through the family business, Al's Bees!
  • Thanks to my buddy, Joe Davenport, for wanting so badly to push me to that $1K mark that he donated twice! You're a winner, Joe. Thanks for your support!

I also want to thank Denise at Caregiving.com for personally welcoming me into her space and offering a new channel to blog. This time, I'm blogging about the switch from being caregiver for my mother to realizing that I'm now my dad's caregiver (thanks to Denise's insight). Denise is a bright and energetic soul who is sincerely interested in all her Caregiving members. My blog, Linda's Blog, is located under "Caregiving for Parents."

Many thanks, too, to Mary Beth at Caregivers for Home. She approached me via Twitter to ask if she could write about my experience and memoir, and then asked if I would write a guest blog. Well, yes! Mary Beth's article is When Doctor’s RX is: No Hope, A Caregiver’s Journey. My article, which broaches a topic that I had to write about sooner or later. Yes, I shared this story with my husband before it was published -- Marriage and Caregiving: Letting Go, A Daughter’s Story.

So grateful to be meeting new friends and supporters in my quest to fund my art and I'm grateful to friends who have stepped up to share. If you want to fund my memoir as well, you can contribute as little as $1 or as much as you want at Cancer, Caregiving, and Contentious Love's Indiegogo campaign. A heads up on Friday -- YOU can win money by helping to spread my campaign through linkage. Learn more about my Referral Contest and, if you have questions, feel free to contact me through Twitter or Facebook

Monday, October 20, 2014

How Bile Duct Cancer Begins...

My mother's mother in 1954. She died from liver complications in 1969. Did my mother inherit mutated genes from her mother? Doubtful, but mom did inherit some issues that complicated her disease.
Now that my frantic caregiving chores for mom are over, I've been concentrating on how her cholangiocarcinoma occurred. My mother's age contributed to her risk factor. More than two out of three patients diagnosed with cholangiocarcinoma are older than age 65, and my mother was 78 when she was diagnosed. But lately I've been viewing more news on younger deaths from this cancer.

Cancer usually results from gene mutation, and sometimes this proclivity to certain mutations is inherited. Gene mutations related to bile duct cancers, however, usually are acquired during a lifetime rather than inherited. What changes during a lifetime could contribute to bile duct cancer?

  • Liver fluke (parasitic flatworm) infections that settle in the bile duct and cause irritation is a major cause of bile duct cancer in Asia, but very rare in the U.S. It can affect people who travel to Asia and who eat raw or poorly cooked fish in that region.
  • Bile duct infections or inflammation (cholangitis) can lead to scar tissue (sclerosis), which can create a risk for cholangiocarcinoma. Many people who have this disease (Primary sclerosing cholangitis or PSC) also may have issues with ulcerative colitis. Risk factors for progression of any of the issues to bile duct cancer can be as high as 30 percent.
  • Bile-filled sacs connected to the bile duct are called choledochal cysts. The cells in these cysts, as with cysts in other parts of the body, can contain areas of pre-cancerous changes.
  • People who are born with, or who develop, abnormalities where the bile and pancreatic ducts meet can be at higher risk for bile duct cancer. This abnormality can prevent bile from exiting the ducts normally, and that condition can prove deadly.
  • Cirrhosis of the liver, caused by alcohol excess or diseases such as hepatitis, can create scar tissue that can affect the bile duct and lead to #2. Liver diseases and subsequent scar tissues can contribute up to 15 percent of bile duct cancers.
  • Exposure to certain industry chemicals and PCBs can also lead to possible bile duct cancer.
  • Thorotrast, a contrast agent that radiologists no longer used in x-rays, is a huge culprit in cholangiocarcinoma cases in individuals who are old enough to have had x-rays through the mid-1950s. The connection between the ingestion of Thorotrast and bile duct cancer can be up to 100 percent.
Some medical facilities and cancer institutions list other causes, including obesity, exposure to asbestos, smoking, exposure to radon, and diabetes. All these factors often contribute to liver damage and then scarring and damage to bile ducts. Is there a way to determine if you are at risk for bile duct cancer? Yes -- if you know that you are subject to any of the conditions listed above.

Can this cancer be detected early? According to the American Cancer Society, the answer is no.
The bile duct is located deep inside the body, so early tumors cannot be seen or felt by health care providers during routine physical exams. There are currently no blood tests or other tests that can reliably detect bile duct cancers early enough to be useful as screening tests. Without effective screening tests, most bile duct cancers are found only when the cancer has grown enough to cause symptoms. The most common symptom is jaundice, a yellowing of the skin and eyes, which is caused by a blocked bile duct.
From experience, I can tell you that the jaundice is a symptom, but it's also an alarm. It's the alarm that starts the race to the end of the cancer patient's life. How much time will that patient have? Anywhere from three months to 18 months, depending upon a number of factors including new procedures that can extend that patient's life.

But, that's another story...









Thursday, October 16, 2014

Michael Smith's Music Magic

Mom's banjo uke
Mom's banjo uke, minus strings...
About one week after mom died in June, I sent a Facebook message to friend, musician, and neighbor, Michael Smith. I attached a photo of a musical instrument I found hidden in one of mom's closets. It looked like a miniature banjo at 21 inches in length and with a seven-inch diameter head. It had two "f" holes in the resonator's back and it was branded Ferry Quality.

I know mom told me when I was much younger that she played the ukulele, but I never remember her playing one. I definitely don't remember seeing this instrument before I found it in the closet. Michael informed me that this instrument was more than a ukulele -- it was a banjo ukulele.

I searched high and low on the Internet and found little about the Ferry Quality banjo uke; but, I did discover Banjo Ukulele Haven, which details the history and value of some other banjo uke brands. Either the banjo uke mom owned is very rare or it's not in demand, but Michael seemed to like it. He encouraged me keep and preserve it by putting it in a display case. I almost took it home with me in August, but something told me to keep it at dad's house.

Fast forward to September. I am back at the folks' house, helping dad with various and sundry things. Before I left, Michele Larocque from Deep River Studio interviewed me for a book trailer that she was making for my Indiegogo fundraising project. We talked briefly about music for the video, but we were at a loss as to what to use for background sound. Mom liked all types of music -- opera, classical, gospel, folk...anything but rap. The tone of the video also needed consideration, and I thought about my choices on the way to dad's house.

I finally decided on blues, so I asked a musician friend to help me out. He didn't respond, and time wasn't on my side. Several people nudged me to use royalty-free music or to pay for a popular artist's piece, but I wanted desperately to ask someone local to help out. I know plenty of very good local musicians, so I went to Facebook to ask if anyone could help with an original piece.

I received a ton of responses over the 24 hours after I posted, but Michael was the only musician to respond with a video and an original piece -- within 24 hours! I was floored...the music was a great mix of eastern, bluegrass, and blues (yes, obviously this mix is possible), so I wanted Michael to provide the music for the video.

Unfortunately, Michele needed a longer piece for the project than the one that Michael originally produced, so I talked to him about this issue. I liked his original music and he did, too -- but after he saw the rough cut for the video, he was excited about pushing his music to another level. To make a long story short, he wrote and performed a final piece that was dedicated to his brother, Paul, who recently died from cancer.

"Paul's Song" is beautiful. Michael shared it with me after he recorded it in a local studio (All Things Music at 522 Washington Street in Shelbyville, KY). I knew Michael was a stellar musician, but I was stunned by this piece. I was honored that Michael was willing to share his music with me, and I was humbled by his inspiration.

Michael's music on the video comes in bits and pieces, and it doesn't represent the entire song as Michael wrote it. But, that's what happens with a music/audio/visual mix, and Michele, in my opinion, did a bang-up job on the video (shown at the top bottom of every page, because I'm that proud of the final product). This lack of musical continuity is sad, however, because the full rendition of "Paul's Song" could melt your heart. On the other hand, Michael still retains the original piece in all its glory, and it is up to him to decide what he wants to do with that music.

I do know that mom's banjo uke belongs to Michael. In fact, I could almost hear her voice say a resounding "Yes!" at the exact moment I realized what I needed to do with that instrument. When I return home, I will return with that Ferry Quality banjo uke and hand it -- and the accompanying "Original Guckert's Chords for the Ukulele at Sight Without Notes or Teacher" booklet -- over to Michael's care.

Michael, thank you for blessing me with your talents, skills, and love. I only hope I can do the same for you one day, friend. Cheers.

NOTE: Michael doesn't have a website, but he does give uke lessons in La Grange. If you'd like to take lessons from Michael, please message me on Facebook or Twitter, and I'll ask him to get in touch with you.

Tuesday, October 14, 2014

Cancer, Caregiving, Contentious Love Book Trailer...

Yeah -- well. I'm pretty stoked about the results of the trailer. Michele Larocque of Deep River finalized the work today, and it's up at the Cancer Caregiving, Contentious Love fundraising site, YouTube, and Vimeo...and, people are sharing it all over Facebook. It's a gorgeous piece of work, and Michele dreamed it all up.

The music? That's another story altogether, and I'm planning to tell you about it before the end of the week. Let's just say that I've been blessed by Michael Smith, a neighbor. He's downright genius with a big heart.

Here's the trailer:

video

Monday, October 13, 2014

Time to Give Thanks

I haven't thanked anyone since my October 1 post, where I thanked many artist, writer, poet, musician, and photography friends for their monetary, emotional, and physical support. So, a quick post today to catch up on all those individuals who have stepped up since the beginning of the month...

First, a huge thank you and gratitude to the authors, editors, and publishers who read my memoir excerpt and offered their words of praise and encouragement: Many thanks to Mara Eve Robbins, Kim Jacobs, Janeson Keeley, S. E. Ingraham, and Tony Acree. I've posted their reviews on this site.

If you're a blogger, author, editor, or publisher and you'd like to write a (hopefully positive) review of this memoir's excerpt, don't hesitate to contact me via Twitter or Facebook.

Now for the donors!

  • Who can write a book without the support of her family? Thanks to my husband, Hugh, my daughter, Cora, and her boyfriend, Will, for their monetary encouragement! They dug deep for this effort, trust me. That's what makes their gifts all that much more awesome. <3
  • Thanks again to Tony Acree, as he not only partially dedicated his last book to me (The Watchers), but he wrote a review AND he wants an eBook. You know how to be a fan, Tony -- thanks!
  • Vicki Bironas, owner of Fire It Up Studio in La Grange, KY, stepped up to be the first business to support my memoir. Thanks to her generous $150 gift, her shop name and location will go in the print and eBook editions of the memoir. Vicki  - MWHA! One of my best besties. 
  • To my friend, Tess Elliott -- thank you for your monetary support and your encouragement. I love, especially that you comment on almost every post I write and like just about every post I contribute to my Facebook page. You're a gem, Tess. Tess is an artist and a photographer who creates toy theaters, and who is insanely in love with puppetry and art in general.
  • Thank you, Melissa Crites, for your support! Melissa is the owner of Serenity Studio, LLC in La Grange, KY, and I can guarantee you that she is a superb massage therapist. She's also an artist with a focus on painting some beautiful gourds.
  • Another La Grange business owner, Sue Ann Birchfield, owner of Rainy Day Resale, stepped up to support my project, too. If you'll notice at her website, her resale business is top notch and upscale -- drool-worthy, actually. =)
  • And, thanks to my dear friend Joe Davenport for his support. He's been a huge supporter for a long time, to the extent that he actually dressed up like Elvis for an event I created. Joe, you're the best. <3
  • Many thanks to Dr. Nurit Israeli , a psychologist and psychology professor in NY, but also a wonderful poet. Of course, that's how I met Nurit -- as a poet -- and she's an extraordinary wordsmith and observer of life. I'm so honored to have your company on this journey, Nurit!
  • Then, there are the anonymous supporters. Anonymous to you, that is...I know who they are, because Indiegogo provides that information for me. I think they know how much I appreciate them, too. Much love!
  • Finally, I have a supporter to thank who may not show up on the campaign site, depending upon if we can work it out. John Manning is a friend, a dance partner, a banker, and a hoot. He wants his name in the book, so we're working that out. I'm honored.

That's right --  you can contact me directly if you don't want to use your credit card or display your name or whatever is keeping you from using the Indiegogo Cancer, Caregiving, Contentious Love site. If you want to support my efforts, let me know. I'll be happy to help.

Saturday, October 11, 2014

Differences Between Hospice and Palliative Care

When it comes to elderly relatives -- do you need palliative or hospice care?
It's World Hospice and Palliative Care Day, and this event provides a great opportunity to talk about the difference between hospice and palliative care. I'll be the first to admit that I didn't understand the difference between the two services until after mom was diagnosed with cholangiocarcinoma. I did understand hospice to a degree, as relatives had used this service prior to mom's diagnosis. The first time I really understood palliative care, however, was when mom received her first chemotherapy treatments.

After mom's failed Whipple surgery, the oncologist suggested chemotherapy to hold the cancer at bay. The doctors all told mom, without qualms, that her cancer was not "curable" and that the chemo treatments were "palliative." In other words, she would receive treatments that would stem the cancer cell growth until she could no longer take chemo. This was a "chemo for life" program, where "life" part meant that treatments would continue as long as mom could tolerate them.

There are no time restrictions in palliative care situations. Patients can receive palliative care at any stage of illness, whether that illness is terminal or not. The point behind palliative care is to provide comfort for the patient. This comfort is especially important for the patient when the the patient's disease is at its most uncomfortable.

Palliative care can be received at home, in the hospital, in a treatment center, or at a doctor's office. The fuzzy part of this type of care is that it covers a broad spectrum of diseases at various stages within that disease. The important thing to remember is that palliative care is not hospice, although hospice and palliative care go hand in hand.

Hospice is for end-of-life care, and it's all about palliative care...making the patient comfortable through various methods that range from Styrofoam wedges to make bed rest more comfortable to morphine to ease end-of-life pain. Although policy has it that hospice care is for the last six months of life, we learned that the local hospice had patients that were going on three years in treatment. On the other hand, some hospice patients barely see the oxygen tanks come through the door when they exit life.

Although hospice generally is ordered by the patient's primary-care physician* for end-of-life care, no one has a crystal ball. The practice of predicting someone's end of life sentence is based on both fact and guesses. Sometimes facts win. Sometimes guesses far surpass wildest hopes, especially when it comes to family members who don't want to lose that patient.

Interestingly, hospice couldn't begin for mom until her chemotherapy palliative care ended. That "chemo for life" program lasted as long as mom's body could tolerate the limited amount of chemo that she was taking. Since one oncologist earlier in mom's care had the guts to give us a time frame of three to six months of life without any treatment for her cancer, I had at least a base to work from after mom's chemo treatments ended. Mom's then-current oncologist must have known as well, as she ordered hospice for mom when she stopped mom's treatments, and that end to treatment came approximately six months  before mom's life ended.

Hospice provides palliative care, and that's the thrust of their services. In mom's case, however, another goal was imperative: that we try to keep mom out of the hospital. Her capacity to fight illness and infection was low, so home care was the best option. Additionally, mom wanted to die at home, and hospice made that goal a mission in mom's case.

To make a long story short, here are some major differences between hospice and palliative care:

  1. Hospice services can be provided at home, where palliative services provided by medical professionals often are provided through a medical facility.
  2. Palliative care knows no time restrictions, whereas hospice care is, supposedly, for the last six months of life.
  3. Patients pay for palliative care the same way they would pay for any other treatment -- with cash, insurance, or other payment methods. Hospice, on the other hand, takes over the bills and everything is paid through Medicare. At least, that's the current structure in most cases. It's always good to check with your local medical facilities to understand your possibilities.

I can say nothing but good about mom's hospice care at this point, especially on a day when we honor the services provided by palliative and hospice care. The goal? To make these services better all around and as widely available as possible to people who need them.

* Primary care physician can be any type of doctor, from cardiologist to oncologist.


Friday, October 10, 2014

Who Hasn't Been Touched by Cancer?

Mom -- hoping to actually drive this Jaguar on her 60th birthday in 1994.
I've been floating between two towns during the past two years, trying my best to actually be present in my own home when I've been pouring my heart and energy into my parents' home. Caregiving takes effort. It takes money. It can take a person's soul if the caregiver isn't careful.

That's what cancer does. It eats at its host and it tries to reach out to eat everyone who cares about the cancer patient.

In both towns, I hear stories about people who have died from cancer, people who have recently been diagnosed with cancer, and people who are surviving cancer. In most cases, individuals relay those stories in a "hush hush" manner, as though to speak about cancer out loud makes that disease contagious. The survivors are a different story, because even the media wants to shout those success stories from the rooftops; but, those stories are fraught with doubt. Are the survivors really "cured," or are these cancer survivors and their families hoping against hope that that victims are in remission forever?

Who hasn't been touched by cancer? Who hasn't felt hope that cancer can be "beat" into submission? Who hasn't felt that this disease deserves only a whisper instead of a shout...shouts of anger that people of all ages are falling victim to these alterations in their DNA? People we love. People we don't even know who touch our hearts with their stories.

Who hasn't been touched by cancer? I'd like to know.

Tuesday, October 7, 2014

Things People Say to People With Cancer

During my stint as caregiver to my mother, I was privileged to accompany mom on her visits to her various doctor appointments. There were many appointments; but, as mom continued to hang on to life, the appointments dwindled. Instead of explaining why those appointments began to shut down, I'll share a few quotes that I heard first-hand from mom's primary physicians and nurses:

  • We didn't expect you to live this long (doctor who was treating mom)
  • Cremation? Why? You're so beautiful, I thought you'd go the open casket route (nurse).
  • You're still with us? (doctor who was summoned for mom's treatment for a second time within four months)
  • I can't look at the cancer count. I want to sleep at night (a doctor's answer to my question about mom's cancer advancement).

You get the idea -- out of the mouths of babes scenarios, right? Except the individuals who offered their opinions were professionals. What, then, can cancer patients expect to hear from friends and relatives who aren't professional doctors or nurses?

If you know a cancer victim, please don't try to excuse yourself from making stupid remarks to that person because you're not a professional. If anything, as a friend, relative, or neighbor, you might have a bit more insight into that cancer patient and become more compassionate. At least, that's the hope.

A friend of mine found that sometimes that hope runs slim. Craig Allen has cancer, and he is a realist about his prognosis, and responses to his current treatment option drive him mad. Literally. He's taking hormone treatments that provide him with physical reactions that are similar to menopause hot flashes. When he shares this news with female listeners, they often respond with:

"Ha! Now you know what we go through."

Excuse me? Your menopause hot flashes are similar to my cancer treatments? I'm sharing a link to Craig's justifiable rant. Please read to understand how a simple statement (like "We didn't expect you to live this long") can affect a person who is dying from cancer.

Thank you.


Saturday, October 4, 2014

Taking my Gratitude to the Next Level

I'm grateful that mom left a story for me to tell.
I mentioned in a previous post that I began to share a gratitude list every morning on my private Facebook page. I started this practice about three months before mom died. In the beginning, I felt very self-conscious about expressing appreciation for what I had, although now that self-consciousness seems ludicrous.

I was late posting my gratitude a few days. Some days I was up before the rooster crowed, pondering how I could turn things around in my head to show that I was looking at a brighter side. Believe me, some days I really worked hard at this list. I skipped the list for at least five separate days, because I just couldn't shake my funk enough to see the light.

I don't know why I stuck to five items daily. Perhaps that fifth (or fourth, or even third) item on the list really takes some genuine reflection and change of attitude on my part. By the time I'm through with each morning's list, I often gain a tremendous amount of insight into my feelings and motives.

A few of my friends are in the habit of offering up a gratitude list on a daily basis. What I love about these lists is that I get to know that friend just a little bit better because of what she (yes -- usually a she) is going through. A number of friends, even those who don't post a gratitude list, have approached me to tell me how much my lists mean to them. Mostly, they can relate to a lot of things I went through during my time as a caregiver to mom.

I continue to post those lists on a daily basis, and the focus now is more on the aftermath. I can't seem to get my head wrapped around the lists these days, and I think I've reached a threshold. I think I know the cause behind my lackadaisical attitude...I've become less grateful. The habit is now just a habit, and I need to challenge my perspective. As a result, I want to take my list to a new level.

Starting tomorrow, I'll be posting my daily gratitude lists to my Cancer, Caregiving, and Contentious Love public Facebook page. I think this is the right thing to do, because I'm feeling very self-conscious about the move. I realize that many new readers may not know my entire story, and that's another prompt for me to become more aware of my motives and my explanations.

Maybe, after a few weeks, I'll begin to see my new self-consciousness as ludicrous. And, I hope that my habit will help someone else. I would be most grateful if you'd let me know.

Friday, October 3, 2014

A Ritual I Developed During My Caregiver Stint

My ritual is somewhat like a pinata ceremony.
I write these blog entries in hopes that readers won't judge me, as I am bringing my own perspective to topics that deal with a death in my family. Although death is common ground, and should -- above anything -- unite us somehow, I've learned that folks may not agree with my outlook on certain topics. Feel free to disagree; but don't tell me I'm wrong, especially over a ritual that saved my sanity for the past two years.

According to The Chaplaincy Institute, ritual can make a person "stop, focus, and make sacred that which is ordinarily taken for granted. A ritual can be used as a way to give voice to the unspoken, facilitate healing, or remember a person or event. It can also be a way to refocus personal thought patterns so they become self-serving, not self-defeating. A ritual does not need to be elaborate or take a lot of time. In fact, to keep meaning from getting lost, the simpler the better."

That article goes on to provide an example of a ritual that involves an altar, candles, and prayer, which is fitting for that particular perspective. Other rituals I've known caregivers to use include yoga for meditative qualities and also for keeping the body fit. I love yoga practice, and I understand how yoga benefits me. But, I haven't had a class since the last one I took with Terri Hug, and that was before I even learned about my mother's illness. Terri is a sister from another mother, and I'm having a difficult time choosing to take on another yoga instructor after becoming so close with Terri. I need classes, because I don't have the self-discipline to practice alone.

Other caregiver rituals might include a set time each day/week to get away, or time to be alone. In my experience, however, getting away from home was fraught with anxiety, because every time I did leave home, mom would encounter an emergency situation. The only time I was able to get away was during Easter weekend, when some friends kidnapped me to spend a weekend with their poet and bard neighbors. But, that wasn't a ritual, although the escape was sorely needed and appreciated.

My alone time and ritual came about without planning. I still practice it after mom's death, especially when I'm at my folks' house. I leave the house proper to sit in the screened porch with my Android and begin to play Candy Crush Saga. Playing that game in itself is not a ritual; but, playing game #75 over and over and over again became a ritual for me, one that isn't elaborate or that takes a lot of time.

Other friends who play that game continue to offer free passes for me to get past game #130. Yes, that's how far I got before I learned about mom's cholangiocarcinoma. But, I'll never go there again. I doubt if I'll ever get past game #75. If I play the game without thinking about the game, it provides me with time for reflection and planning. If I play the game with intent on beating the other two women who are ahead of me, the play takes me away from everything. The fact that the game only allows play for five games unless the player wins a game (garnering one free game per win) is convenient, too. Once I've played through those five or so games, I'm revitalized and ready to get back to more pertinent tasks at hand.

I play game #75 when traveling, too, because my husband refuses to let me drive. But, the game isn't a ritual then -- in fact, it's boring. The only time Candy Crush Saga game #75 becomes a satisfying ritual is on my parents' back porch. This rite offers me comfort, mindlessness, and even some sense of self-worth and achievement. I am only a few points away from obtaining the #1 spot on that game. When I achieve that goal, I don't know what I'll do.

Note: Candy Crush Saga is a puzzle game distributed by King.com. The logo image is from Wikipedia.

Wednesday, October 1, 2014

Supporting the Arts & Letters


This is the trailer for Afterthoughts by Lynn Tincher, produced by Dark Palette Productions

I love to support artists. I have supported many writers, musicians, videographers, other authors, poets, crafters, and actors over the years, and it's been my pleasure. Often, the payback is unexpected, like when local author Tony Acree dedicated his latest book, The Watchers, to another local author, Lynn Tincher, and me. What a gift! All I did was tell him to quit editing and keep writing (advice that is difficult for me to follow, by the way -- I was throwing down the gauntlet!).

That's why I'm supporting two artists I know from the get-go with my Indiegogo fundraiser.
  1. Michele Larocque is a photographer, writer, poet, and visionary. She is a friend, too. She is creating a trailer for my fundraiser at Indiegogo, and it's in its final stages. You can find her on Facebook.
  2. When I was asked to find some music for that trailer, I reached out to my local musician friends. Within 24 hours, neighbor Michael Smith came up with an original track that he's modifying now to fit the trailer. I'm so blessed, because Michael, too, is a visionary and a talented musician. He teaches ukulele, but he's adept at any stringed instrument. He doesn't have a site I can point to; but, if you're a local I can provide you with his number if you want lessons.
The wonderful thing about my Indiegogo campaign is this: Other artists now are supporting me, and I'm thrilled beyond words. My gratitude is tangible...
  • I'm mentioning Lynn Tincher again not only because she was a generous donor to my Indiegogo campaign, but because she's also involved in a project that is making tracks. She's creating a film from her first novel, Afterthoughts, and she's having great success with this endeavor. Please support her.
  • I met another donor to my campaign, Pearl Ketover Prilik, at Robert Brewer's Poetic Asides, where we've been writing poems side-by-side for a few years now. I taught Pearl how to make a heart with ascii type, and she's been a devoted heart fan since that lesson.
  • Speaking of Robert Lee Brewer, he generously offered to be a reference for my applications to writer retreats, and you can purchase his latest poetry, Solving the World's Problems, at Amazon. Michael Dwayne Smith from Mojave River Press & Review also stepped up to offer a reference, as did Kim Michele Richardson (another local), author of The Unbreakable Child and columnist at Huffington Post. Other people who offered their support include Jay Sizemore, author of Father Figures, and Sheri Wright -- a woman who offers a bagful of talent in photography, poetry, writing, and now in documentaries.
  • Other donors to my campaign include Penny, who makes jewelry from mushrooms (how creative is THAT), and sells at local markets in Virginia. Another donor, who wishes to remain anonymous, also is a writer and a poet. Yet another donor, Diane, writes AND edits, and she helped me tremendously with the copy on my campaign as well as donated to my cause.
I'm blessed to be surrounded by such giving and creative people, and I haven't even tapped the surface of my well of creative friends. I am VERY blessed. If these individuals have faith in me, then you can have faith in me, too. Visit Cancer, Caregiving, and Contentious Love at Indiegogo.

How about you? Do you create? Do you support creators?