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Richard’s Review: Fictional Family Members

by Ricard Atwood

What does a typical family in the bleeding disorder community look like? I don’t know. There’s so much variability in family composition that the range of normal seems boundless.

Novelists may base their fictional characters on people they know, or use their imagination to create characters. Some novelists want to make a bleeding disorder an important part of their novel’s plot, yet choose another family member as the leading character. I’m curious about these protagonists—wife, mother, sister of someone with a bleeding disorder—in the following novels.

A Place for Kathy

Henry Denker William Morrow, 1997

Tessa Taylor, 40, has a type-A personality and runs her own organic makeup company. She is married with three kids. Living on the Florida panhandle coast, Tessa hunkers down alone for a Category 4 hurricane, with her family elsewhere. Curious, she snoops on her architect husband Ethan’s iPad and discovers his affair with Lindsey, a 26-year-old nursing student. Tessa tricks Lindsey into coming to her home, even though she has no power and no gas for the generator. The two women fight, verbally and physically, over Ethan—only to discover that he has additional mistresses. During the storm, and in the middle of this fight, Tessa’s eldest child, Colt, who is 18 years old, 6’6″ tall, and 200 pounds, returns from Florida State University because he runs out of meds for his hemophilia. Colt knows that his mother always keeps some in the refrigerator. Colt arrives bleeding profusely from his leg. Both women stop their fighting to care for Colt by hanging blood-clotting factor bags on an IV pole, which I found to be a puzzling way to treat hemophilia. Fortunately, mothers always seem to be prepared, regardless of the age of their child with a bleeding disorder.

Mine

Courtney Cole. Gallery Books, 2019

This melodramatic novel is sure to produce misty eyes, if you overlook some of the contrived storyline. In 1994, Grace Cameron becomes a widow when her husband, Kip, dies unexpectedly from a brain hemorrhage caused by a fall while hiking. Kip taught literature at a midwestern university, but had no life insurance because of his pre-existing condition, hemophilia. Grace learned of Kip’s hemophilia when they first dated, and she knew that he had tested negative for HIV. So in 1996, she is shocked to learn that she is HIV positive. As her medical symptoms worsen over 18 months, despite numerous antiviral drugs (AZT, DDC, DDI), Grace is overwhelmed by the prospect of dying. She is desperate to find a home for her 13-year-old daughter, Kathy. For Grace, few people meet her strict criteria as caregivers for Kathy. As I read the book, I wondered why Grace never hired a lawyer to plan her daughter’s guardianship, and never joined an AIDS support group. Or why Kip never attended an HTC. Still, spouses of HIV-infected people with hemophilia need more recognition for their important caregiving roles.

The Key to Finding Jack

Ewa Jozeflowicz. Zepher, 2020

Felicity Chesterford, who goes by “Flick,” is enrolled in secondary school in London. She assists her older brother, Jack, in his quest to solve puzzles. Jack finishes his A-level exams in June and plans to spend a gap year traveling in South America. Their father, a barrister, pressures Jack to become a lawyer. Their mother, who runs a social media company, is overprotective of Jack because he has hemophilia. Jack is well prepared with a special medical kit and a doctor’s letter for his hemophilia. Unexpectedly, in January an earthquake hits Lima, Peru, where Jack is headed. Communication is impossible. Flick and her best friend, Kiera, decide to act like detectives to uncover clues that will locate her missing brother, who might be in a medical emergency. Flick is successful, while the foreign office and local police are not, in finding Jack. In this novel for young readers, the plot emphasizes finding clues to solve puzzles, while the often neglected role of sibling bonding, when bleeding disorders are involved, receives recognition.

***

As seen in these novels, family members without bleeding disorders are just as important as the ones with bleeding disorders. The novelists realize that, while the bleeding disorder provides the drama, other family members can play a leading role. All this creates a dynamic fictional situation, one that reflects reality.

Why I Choose Cannabis for My Pain

Felicia Carbajal

[I have to preface this article by saying that while I never used recreational drugs, lately I have had a consistent, disruptive backache that I am still trying to resolve. It’s interfering with my quality of life by now, and upon recommendation of some people, I’ve tried CBD cream. I have to say I love the results! So I thought I’d reprint this article from the February 2020 issue of PEN, by someone who knows her stuff! …Laurie]

 The cannabis plant has been deeply engrained in American history since our country’s inception. Commonly called medical marijuana and hemp, cannabis sativa has been used in everything from textiles and paper to medicines and spiritual tools. Although cannabis has been viewed as harmful or illegal, it has the potential to combat our nation’s opioid crisis, repair some of the harm caused by the war on drugs, and offer Americans a natural alternative to pharmaceutical drugs.

Felicia Carbajal

            Why do I believe so strongly that cannabis can do all of this? It’s pretty simple: cannabis has been a wonder drug for treating my chronic pain from a spinal cord injury over a decade ago. It has also revolutionized the treatment of my depression, anxiety, and PTSD, and has numerous therapeutic effects when used in its various forms.

            After my last back surgery, a microdiscectomy, I took Vicodin to manage the pain, but this would alter my mood and only mask the pain momentarily. I wasn’t myself, and the pain always came back. My medical team said this would be my life. Between the epidural injections and physical therapy sessions, I began researching alternatives.

            I tried everything to reduce my pain. I bought gadgets like seat and hand-held massagers, a laser acupuncture pen, and electrostimulation devices. I tried countless complementary therapies like chiropractic treatments and acupuncture. Up to that point, cannabis was last on my list of options. Fortunately, I was introduced to a world-renowned medical professional who was working with patients on low-dose cannabis options with controlled intake of THC. His team gave me a bottle of tincture to try. Three days later, I was pain-free, no longer needing Vicodin, and smiling.

            This introduction marked the beginning of my journey with cannabis. I knew the power of sharing my story, and became even more intrigued by the potential of this plant as I weaned myself off a cocktail of anxiety, depression, and pain meds that caused more harm than good. I knew I had to keep learning.

            First, I researched the legal history of cannabis. I grew up a DARE1 evangelist during the 1980s and was unaware of cannabis’s history in the US dating back over a century. Hemp was a valuable crop in the American colonies, used for a variety of purposes, including paper and rope. Eventually, it entered American pharmacopeia as cannabis and became a tool for advancing conservative agendas. Today, more than half the country has some form of regulated cannabis, and a majority of states allow the sale and transportation of hemp-derived products.

            Next I explored the science of cannabis. I had friends who’d been diagnosed with HIV and AIDS and knew that this was their medicine, but I didn’t understand why or how. I dove deep into the research and discovered the endocannabinoid system (ECS).2

            The ECS is a network of neurotransmitters and receptors that work round-the-clock to help keep the body in homeostasis. Found throughout the bodies of mammals and other vertebrates, the ECS responds to the presence or deficiency of cannabinoids, which can be endogenous (produced within the organism) or exogenous (produced externally).

            Endocannabinoids are produced internally and regulate the function of just about every physiological system within the body. Phytocannabinoids are endocannabinoids derived from plants, including but not limited to cannabis.

            Naturally, I went to my physician and began asking about the ECS. To my surprise, she knew little about it. I shared some links from the National Institutes of Health (NIH)3 and other research bodies4 about current clinical trials and research.

            My biggest recommendation: When you explore cannabis, be safe. The cannabis industry is in its infancy; with recent reports of cannabis-induced health concerns, it’s imperative to purchase from a licensed, regulated producer. You should be able to view the lab test results of any product you buy, so you know exactly what you’re putting in your body. There are lots of options everywhere, including websites like Amazon, so be mindful! And if possible, test what you’re using.

            Finally, make sure you’re aware of the laws and regulations in your area. This is essential as more and more states regulate.

            I’m fortunate to live in a state with regulated cannabis, which means I have access to clean, tested cannabis products—a privilege I don’t take lightly. I have the opportunity to explore other cannabinoids, including THCA (tetrahydrocannabinolic acid) and THCV (tetrahydrocannabivari) in conjunction with terpenes, aromatic plant essences found abundantly in cannabis that can provide therapeutic relief and enhance the efficacy of other compounds when combined (the “entourage effect”).

            For those who are new to cannabis or who live in unregulated areas, take this chance to educate yourself. Check out sites like Project CBD,5 GreenFlower Media,6

and Leafly,7 and dive into the data. Go to the NIH website8 and type “cannabis” along with your condition to review the research. The reality is that cannabis is personalized medicine, and the one-size approach won’t work for everyone.

            After years of taking opioids, I’m finally free. Cannabis can improve the quality of your life, too. Understand and explore the possibilities of cannabinoid therapies. Together we can fight the stigma and perception surrounding cannabis, save countless lives from opioid-related overdoses and deaths, and heal the harm from the war on drugs by voting for sensible drug policy.

Felicia Carbajal is a values-based community organizer, social entrepreneur, change-maker and innovator in the cannabis industry. Based in Los Angeles, the cannabis capital of the nation, Felicia has over two decades of experience in California’s cannabis market. Felicia has worked with world-renowned cannabis medical professionals, has consulted numerous cannabis brands, and is a trusted resource for multiple patient and consumer communities. Currently Felicia is executive director of the Social Impact Center: felicia@thesocialimpactcenter.org.

1. Drug Abuse Resistance Education 

2. www.uclahealth.org/cannabis/human-endocannabinoid-system 

3. nccih.nih.gov/health/marijuana  

4. www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq  
5. www.projectcbd.org 

6. green-flower.com 

7. www.leafly.com  8. nih.gov

When Compassion Meets Anger

This past week we witnessed anger vented at our government like we have never seen from Americans in our lifetime. I wondered how to address it in a blog meant for bleeding disorder topics. I couldn’t ignore that it happened. I tried to focus on something positive this week. I found myself thinking about compassionate heroes: those who put themselves in harm’s way to get footage of the riots; who tried to help people who were injured; who used kinder language to soothe anger and hate.

As I was thinking of this, I recalled our own situation in 1992, when I attended my first national hemophilia meeting in Atlanta. My book Raising a Child with Hemophilia was being promoted, and I was so focused on that, and raising my 5-year-old with hemophilia and 2-year-old daughter, that I was shocked when during an interview a newscaster asked me what I thought about what was happening at the NHF meeting down the road. What was happening? I didn’t know what she was talking about. I was oblivious.

I soon found out. Stepping into the exhibit hall, where pharmaceutical companies promoted their booths, I saw protesters yelling, waving their arms, scaring people. One had red paint smeared on him and wore a death mask. They then marched together throughout the hall, banging a drum, calling out companies. It was grim. Some pharmaceutical reps fled the scene. In fact, most did. The booths were being emptied quickly.

At one booth, a lone rep stood his ground. I was standing next to him when Michael Davon, a person with hemophilia and HIV from Boston, walked up to him and began yelling. Michael was quite taller than the rep and intimidating. He threw packages of needles in the man’s face and yelled, “And your needles are the wrong size!”

I wondered what could possible happen next.

Joe Pulgliese, general manager of Armour Pharmaceuticals, the man who had the needles thrown in his face, responded calmly, “I think there are bigger issues here to talk about instead of needle size. Tell me what the problem is.”

The rage, absolute rage about being infected with HIV from contaminated blood products; pharma’s role in this; cover-ups; not being believed and not being heard; the deaths of friends and colleagues.

Laurie Kelley and Joe Pugliese 2000

By simply exposing himself to the anger, absorbing it, taking a stand and offering a listening ear, Joe calmed Michael down. They sat. I watched from the sidelines in amazement as Michael quieted but continued his list of accusations. When everyone else fled, Joe had stayed, uafraid.

I saw the power of compassion, even in the face of potential violence, and the power of listening. Angry people want to be heard. But often our first reaction is to retreat, or defend ourselves. Or even fight back. No one ends up listening. Angry people have a right to be heard. Violence is not acceptable, but not being heard and not feeling compassion can lead to heightened emotions, and even violence.

Today is Joe’s birthday, and I’m proud to say he has been a friend since 1989. He was my first contact in the hemophilia community, and he has been a friend to the community all for decades. He secured funding for so many nonprofits for family programs and camps. He approved my book in 1990, when I was a complete unknown. And he works today still, overseeing the Hemophilia Alliance, which helps HTCs with funding, to keep them viable, to serve us.

Laurie and Joe a few years ago

There will always be angry people, there will always be protesters, and there will always be wrongs that need to be righted. But there aren’t many people who stand in the face of it all, look it in the eye, and say “Tell me what’s wrong.”

Happy birthday, Joe! We have been and still are blessed to have you in this community.

Mountain Madness

The pandemic rages, winter is here; in the Northeast, it’s dark by 5 pm, gloomy, cold. It’s a great time to snuggle up with loved ones after a week of vacation, to watch a movie at night. On social media, people are recommending The Crown, The Last Czars (little bit of hemophilia in there) and even The Ripper.

Here’s a great family movie that I’d recommend: Bombardier Blood.

This is the movie about Chris Bombardier, a young man with hemophilia B, who set out to summit the seven highest mountains on each continent. North America, South America, Asia, Europe, Africa, Australasia and Antarctic: different heights, climates and topographies. Although expensive, time-consuming and death-defying, Chris did it. And Bombardier Blood captured his journey, from training to traveling to hiking. It will make you sit in awe, cry, laugh and be so proud.

And if you look at my flat-screen collection of documentaries, there is a definite theme: mountain madness! I love mountains, have done a bit of climbing myself, and follow the history of mountain climbing, including the Seven Summits.

Put Chris’s accomplishments into perspective, ignoring that he has hemophilia: of the 108 billion humans who have ever been on this earth, less than 500 have ever completed the Seven Summits. And one of our own, Chris, has done it.

And I’ll add that he did it as a fundraiser for our nonprofit, Save One Life, and to highlight the hardship of those with bleeding disorders in developing countries. That alone is worth the watch.

Laurie Kelley in the Andes: “The mountains are calling, and I must go”

Bombardier Blood was made by Believe Ltd, founded by Patrick James Lynch, another man with hemophilia. And originally funded by Octapharma, a European company that manufactures clotting factor wilate® and nuwiq®.

I’m partial to superhero movies. I love the Marvel Universe and especially love X-Men, the Avengers and even Deadpool (despite his dreadful language). But in Chris we have a real-life superhero. And he is now executive director of Save One Life. His journey to new summits continues, all to benefit our family in need overseas.

Watch it, buy it. About 20% of proceeds go to Save One Life. A win-win for all!

Available on iTunes and Amazon Prime.

The Magical, Mystery Cure

Last week, I read A Christmas Carol, and it struck me that Tiny Tim might have had hemophilia. Maybe I am inferring too much but—since it is Christmas— I am also reminded of a passage from the Bible, and a reference to another bleeding disorder. While most people are familiar with A Christmas Carol and Tiny Tim’s predicament, many are not familiar with this passage in the Bible. It happens in Gospel scripture when Jesus was healing the sick, and even raising the dead back to life. A crowd followed him, and one woman dared to reach out to him. She had been bleeding for 12 years. She had been to doctors and healers but no one could help her. She was considered “unclean,” and was shunned. This is why perhaps she approached Jesus from behind, and believed that if she could just touch even the hem of his garment, she would be healed.

Read this and see what you think (Matthew 9:20-22 NIV):

20Just then a woman who had been subject to bleeding for twelve years came up behind him and touched the edge of his cloak. 21She said to herself, “If I only touch his cloak, I will be healed.”

22Jesus turned and saw her. “Take heart, daughter,” he said, “your faith has healed you.” And the woman was healed at that moment.

What disease or blood disorder could cause her to bleed for 12 years? That she was considered unclean makes us believe she bled from her uterus. Maybe it was fibroids, or maybe, just maybe, she had von Willebrand disease. Perhaps this is the first known recording of someone with VWD… and someone being cured of it.

The famous blues singer Sam Cooke even wrote a song about it, called “Touch the Hem of His Garment.”

Christmas is a time to reflect on faith, miracles and hope. Even to us nowadays, gene therapy will be like a miracle, to heal those with chronic bleeding.

Whoa, there was a woman in the Bible days
She had been sick, sick so very long
But she heard ’bout Jesus was passin’ by
So she joined the gathering throng

And while she was pushing her way through
Someone asked her, what are you trying to do?
She said, if I could just touch the hem of his garment
I know I’ll be made whole

She cried oh, Lord (oh, Lord), and whoa, Lord (oh, Lord)
And oh, oh Lord, and whoa, Lord (Oh, Lord)
Said, if I could just touch the hem of his garment
I know I’ll be made whole

And whoa, she spent her money here and there
Until she had no, had no more to spare
The doctors, they’d done all they could
But their medicine would do no good

She stood there cryin’, oh (oh, Lord) oh (oh, Lord)
And oh, oh Lord, and whoa, Lord (oh, Lord)
Said, if I could just touch the hem of his garment
I know I’ll be made whole right now.

When she touched him, the savior didn’t see
But still he turned around and cried, somebody touched me
She said, it was I who just wanna touch the hem of your garment
I know I’ll be made whole right now

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