What Greater Gift Than Love? Grief and Honoring

 
 

I’m so sad. More than I ever expected. I have never professed to be the animal lover of our family. But I have gotten especially close to Scout, our tiger kitty, in the past several years. He’s been my cuddler and nudger out of bed. Today, we had to have him put down. He was 16 years old and was the best companion our family could have asked for. He was dropped off at the end of our driveway shortly after his birth with a very bad eye infection. We got him healthy and he’s been that up until a couple of years ago. You are going to be so missed, Scouty. Thank you for loving us so much.

 
 
 
As it’s been the past two blog posts writing responses to the five prompts from A Chronic Voice’s Linkup Party for People with Chronic Illnesses, July 2020 has found me completely changing what I was going to write about because something else is heavy on my heart. 
 
The past couple of weeks have been ones of loss for my family.  First, my Uncle Bill who was a surrogate father and now our Scout, our silly tiger kitty for the last 16 years. Today, I write from grief that comes from deep within. 
 

 

BOTHERING

Every morning as if he could tell time, Scout would hesitantly (at first) nudge his wet nose into my ear, purring like a little motor. The morning routine was started.  I then, rolled over, pulling the covers closer to covering my face, but often leaving one arm out above my head, hand dangling.  He’d get a bit more persistent, butting my hand over and over with the top of his head. 

 
As of late, that isn’t enough to get me fully awake. I roll over again.  So now, he knew he had to get tough. Scout would leave my head and walk over to my nightstand, knocking one item off at a time. First, he would paw my little statue of the Eiffel Tower I had actually bought on Kel and my 25th anniversary trip to Paris. I would hear the metal slide, slide, slide until it plunked to the carpeted floor below. He would then come back to my head, purring into my ear to see if I was going to get up. I had begun to ignore this first attempt, so he would go back to bat the next item to the floor.
 
Kelley and I feigned being bothered by this morning wake-up, but really it was nice knowing we were needed and not forgotten. 
 

 

DEMANDING

It was my 40th birthday, and the kids were outside playing with the balloons from my party. There was a tiny little orange dot at the end of the driveway. The cars zoomed down our street not even noticing that a kitten lay helpless in the gravel. Andrew and Chelsea, 15 and 13, were outside with the neighbor kids when they heard a tiny mew demanding to be heard. They walked nearer to the end of the drive, with the feeling that there was something that needed their help. When they reached the orange fuzzball, they found Scout, eye glued shut from infection.

“He can’t be more than two weeks old,” my husband said as Chelsea cuddled the shivering kitten in her arms.

“Can we keep him?” Andrew asked, the longing in his blue eyes. He knew that we traveled too much to have a dog, but he was hoping that we’d allow them to keep the kitten. Kelley looked over at me with a Well, what do ya think? look, and I shrugged. “I guess…, but you guys are going to have to take care of him.”

 

 


NOURISHING

As Scout grew, he became more and more a person. His wacky personality was a favorite of conversation. He got a bit chubby, loving to eat like he did. However, he was also very energetic and athletic. A few times a day, he’d stampede through the house like an orange streak, zipping up the stairs then back, skidding across the kitchen floor. He’d chase his own wily tale as is the snake-like thing eluded his every move.

One of his most incredible feats is when jump to the highest banister in the house, defying death as he hefted his belly up onto the balance beam. Our three-story home had an open banister from the top bedroom level to the living room. Scout made like a drunken, clown on that highwire beam above. It was amazing that he never fell!

In addition, Scout nourished each of my children’s hearts. He gave love to each of them. Scout made sure to sleep with each kid equally during the night. He’d cuddle one and then leave to cuddle the next. Chelsea and Andrew each felt that he loved them best of all.

 
My husband and son brought home Willow,
a black long hair kitty, a few weeks after we
found Scout.  The two have been together ever
since.  Willow is going to need a lot of extra
loving with his cuddle buddy gone.

 

TOLERATING

I’ve never been a “pet person”. My little sister loved animals much better than humans, she still does. Me, while I may appreciate them now and again, an animal just isn’t going to win my heart. So, for me, having an extra being to care for was just one more responsibility to this full-time working mom’s life. It wasn’t that I didn’t like Scout, it was more that I saw him as a chore on my to-do list.  And so, for many years, I was just tolerating the extra work of scooping out his litterbox, cleaning up the hairballs, or filling his food and water dish.  I didn’t really consider myself one of his companions or he mine.

The years went by; Andrew and Chelsea got busy with their adult lives. Little Scout wasn’t on their minds as they moved out to college and the lives beyond our home. Kelley and I filled the food and water dishes. Kelley changed the kitty litter. Scout began to lay on Kelley’s legs every night as he sat watching the TV. 

 
Little by little that lovey fella became my buddy, too. When I was down and out, laying in bed and feeling lonely due to a Fibro Flare, Scout was always nearby.  His warmth often eased the pain in my gut as this was a favorite place for him to lay.  
 
In the past year, as I began to get stronger, pour Scout was getting thinner and thinner. We tried special food and medicine, feeding him both morning and night.  But, after we got back from our four-day trip this past week, we knew he couldn’t keep going on as he had been.
 
 
My aunt and uncle had just come
home to Michigan from quarantining in Arizona, 
so I made this video for him of 
me playing Take Me Home, Country Roads.

 

 

TELECOMMUTING

The last time I saw my Uncle Bill was two days before he passed.  He was lying in a hospital bed in a facility that cares for the elderly.  His mind and body were giving away to dementia.  He had stopped eating.  He kept his eyes closed.  
 
I arranged a Skype call with the activities director.  She brought in her iPad.  Seeing his drawn features and closed eyes, I knew it would be my last time to see him.  I had practiced most of the quarantine on the old wooden ukulele my aunt had given me.  It had been his.  He told us, kids, the story of when he would go and play the old tunes for his mom and the other residents.  Even when his mom didn’t know him anymore, he said she recognized the songs.  And so, I played Take Me Home Country Roads by John Denver.  It was hard for me to make it through without crying.  Uncle Bill never looked at me, but he did grab at the iPad and pulled it closer to him.  All I can imagine is that he wanted to let me know he heard.  I told him I loved him.  And then I asked the nurse to make sure to play some upbeat music.  He loved music. 
 

Grieving and Honoring

And so I grieve.  But, I do know that I loved both my uncle and my Scouty well.  And, I know that they loved me.  This is what it means to live FULLY.  So, I will allow myself to feel the pain of losing them both during these last weeks.  I honor our connection through my memories.  I will continue to practice the ukulele; it sits in the corner of my living room. Uncle Bill, his smile, and music will remain a big piece of my life. I will think of Scout every time I begin to wake, honoring him by living each day with uncompromising love and honesty. 
 
Those of us who live with chronic illness know what it means to mourn loss.  Those of us who have dared to love, know what the ache when we lose those we’ve let into our lives. “We bereaved are not alone. We belong to the largest company in all the world–the company of those who have known suffering.”-Helen Keller
 
 
 

The format for this post is thanks to A Chronic Voice link-up. This month, the topics were searching, hoping, traumatizing, honoring, and responding. Each writer takes the given topics and gives them their own spin. Check out these wonderful writers at July 2020 Linkup(scroll past the prompts to find the linked up posts).

 

Thank you for visiting my blog today. 

 

 

 

Thank you for visiting my blog today.  I am committing to posting once a week on Fridays.  However, as you know, my new normal means that sometimes I have to listen to my body and am not able to follow through as planned.  Thank you for your understanding.

Sharing is caring-as my granddaughter tells me:)

Keep Reading:)

A War Cry! Pain Warriors Will Not Be Silenced


 

 
I have never been a fan of opioids. For me, the side effects are so horrible that I cannot take most. I believe Tramadol didn’t make me sick as the first two I had tried, but I was also prescribed the anti-nausea medication to take along with it after my hip labrum tear surgery.
 
So, when I was diagnosed with Interstitial Cystitis and then Fibromyalgia, there wasn’t even a question in my mind about using them. Like most people in the general public, I have heard the horror stories about people getting addicted and even overdosing from their use. The strict crackdown on prescribing and use of opioids seemed to be a good step for the government to take. However, I had no real understanding of what such a blanket policy would mean for the individual who had been using opioids to manage their pain.

A Review of the film Pain Warriors by Tina Petrova and Eugen Weis

PainWarriors1 - Copy
CLICK THIS LINK to view: Pain Warriors Film Trailer

The Mission

  
I was introduced to this new documentary through a friend, Jason Herterich who lives with chronic pain. He is one of the pain warriors featured at the end of the documentary. Tina Petrova, the award-winning filmmaker, is his friend. Petrova has been a pain warrior since 1997, when on an icy, windy mountain road in California, she slide off a cliff, plunging down 6,000 feet.

 

 

Petrova (director, producer, writer) and Eugen Weis (editor, director, producer) have spent seven years bringing this poignantly enlightening documentary to fruition. Through a crowd fundraising campaign, this film was supported by pain patients and doctors with the goal of giving visibility to those living with intractable pain so that they may be believed, understood, and have better access to treatment that allows them to live FULLY again. 
The film’s mission statement explains, “Pain Warriors tackles the other side of the OPIOID CRISIS ~  that of undertreated pain patients and the slow death of compassion that surrounds them….Both Doctors and patients alike suffer~ when a “one size fits all” political strategy is implemented to end overdose deaths and addiction, without the foresight to what happens on the other side of the equation.”  This film opened my eyes and brought them tears as witnessed the pain of the five individuals whose stories are told in such a raw and eloquent manner. 
 

A Synopsis

Firstly, I want to say that the film is captivating in every way-with impactful cinematography put to the beautiful original score by James Mark Stewart, and the weaving together of the five stories, each different, yet the same.  Each story spoke to the very core of me.  When Karen’s husband reads from her journal, “…I understand when someone with severe chronic pain feels so bad that they consider suicide. I do not condemn those people,” my heart began to physically ache.  I could not hold back my tears. 
 
This is an honest look at what living with chronic pain is like, especially when one isn’t able to get treatment to bring any relief. Their stories bring light to the millions of people living with chronic pain (According to painwarriorsmovie.com the reported numbers of those living with chronic pain in Canada-7 million, USA- 117million, UK: 10 million, and Australia- 1/5). 
 

 

Sherri’s Story: The film is dedicated to Sherri Little whose cry for help for her debilitating pain of Fibromyalgia and inability to digest food due to inflammatory bowel disease, severe colitis, and other conditions was shunned by her doctor and then ignored when she made a last-ditch plea with her patient advocate at Cedars-Sinai Medical Center in Los Angeles on July 3, 2015.
 
 

 

Hunter’s Story: Little freckled-faced Hunter, 11, and his mom tells his story of surviving cancer after four years of chemo and steroid therapy, he developed chronic pain.  As he explains the chemo is like the Hulk who does good and bad.  As it defeated the cancer within him, it also broke things in his body that caused his chronic pain. His mom states that Hunter, “…feels like he’s unheard. He feels like he’s unbelieved.”
 
 
Yanekah’s Story: After a car accident at the age of 18, Yanekah faced severe pain over the years that led to mental health issues of depression and anxiety. When she found out she was to be a mother, her anxiety over being able to care for her child and deal with her chronic pain was one she didn’t feel she could share out because of the judgment of her as a mom.
 
 
 

 

Karen’s Story: After a car accident, she dealt with many years of chronic pain and severe headaches without any diagnosis.  Finally, after seeing a specialist who she tracked down, she was diagnosed with cerebral spinal leaks. After research, she then found another doctor who would perform repeated surgery to construct patches.  These did not hold.
 
 
 
Dr. Ibsen’s Story: After a 30+year career as an emergency room doctor, Mark Ibsen opened his own Urgency Care practice in Helena, Montana.  In 2013, he began to see more and more chronic pain patients who had been taking opioids to manage their symptoms because their own doctors had stopped prescribing them their medication due to the CDC’s new policy and fears of a sanction from the medical board if they didn’t. Ibsen was one of the last doctors in Montana willing to prescribe opioid pain medication to new patients, including many who drove hundreds of miles to see him. He explains, “People who have been treated for ten years with pain medications shouldn’t be suddenly abandoned.”
 

How to Watch this Very Important Film

 

 

This week it was released for purchase (see links below). They had hoped to have showings of this film in various venues, but with COVID-19 that effort has been dampened. Also, Tina has been struggling with her own chronic pain, so they are hoping to get the film out to small groups of people for in-home showings. That is why I was able to view the film to do this review (and have since purchased it to own).
This is not a light movie, but it is important that we view it and share it with anyone willing to listen. This is a cry out. There is a growing “epidemic of chronic pain and chronic illness, and it is causing a devastating toll on both individuals and society. By the year 2020, the number of those living with chronic pain is expected to climb to 1 in 3. Without timely education, resources, and treatment, we stand to create an emerging, global health crisis.” By watching this film, you are helping to raise awareness that can bring about the needed changes in our health system and in the way we treat those with chronic pain.

 

 

Purchase or Rent Video via (live links below):

 

One Chronic Pain Doctor who is also a Patient:

Dr. Ginevra Lipton in her article CDC Opioid Guidelines Created an Epidemic of Underrated Chronic Pain explains, “The 2016 CDC guidelines really cemented the medical hysteria around opioids (see the timeline for further exploration) and rapid adoption of their strict opioid dosage ceilings and duration limits has resulted in widespread undertreatment of chronic pain.”
 

 

She goes on to explain that while research is being done and new breakthroughs seem to be imminent, we can’t pull what treatments we have, “…until we have other choices in our pain toolbox, opioids must remain an option, while continuing efforts to minimize their risk of addiction and abuse.” In an article published in April of 2019, the CDC has admitted that the guidelines “had (been) used…to justify an ‘inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages,’ when the guidelines did not actually endorse those policies.”
 

Ways You Can Help

While I’ve written about my lack of infinity for the term pain warrior (see post) because I don’t see myself as fighting the pain, I do see my role as a warrior to fight for early chronic pain diagnosis (see my post about childhood symptoms of FMS), for serious research leading to better understanding and treatment of chronic pain, and a change in societal views and treatment of those living with chronic pain. I state it here and now.  I will do all that I am able to help bring living to its FULLest for those with chronic pain.
 

Thank you for visiting my blog today. I have decided to publish this a bit early this week to get a jump start on spreading the word of this very important documentary.

 

I am committing to posting once a week on Fridays.  

However, as you know, my new normal means that sometimes I have to listen

to my body and am not able to follow through as planned. 

Thank you for your understanding.

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