Woman dies from "complications" of Lyme Disease

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Cobwebby
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Woman dies from "complications" of Lyme Disease

Post by Cobwebby » Wed 18 Apr 2012 4:39

Andrea Raphael recalled as dynamic woman with thirst for social justice | GazetteNET


HOLYOKE - The laughter was as abundant as the tears - and often both came at the same time - at a memorial service held Monday to honor Andrea Raphael, who died April 6 at her home in Florence at the age of 47.

About 700 people turned out for the service, filling every seat set out in the expansive function room at the Log Cabin at the top of Route 141 in Holyoke. When all chairs were taken, the staff carted in more. And still, dozens of people remained standing at the back of the room.

Speakers included Raphael's parents, her brothers, her sisters-in-law, neighbors, colleagues from Deerfield Elementary School where she worked for six years, former college classmates, and self-described soul mates. They described Raphael as an ebullient, radiant, curious, openhearted, loving and dynamic woman with piercing blue eyes, a dazzling smile, passion for life and thirst for social justice that had her on a lifelong quest to make connections among people.

While people spoke, sang, played music and read poetry, her husband, John Reily, and their children, Christopher, 11, and Maeve, 9, sat in the front row, surrounded by her large extended family. Maeve played Beethoven's "Ode to Joy" on the cello, and Raphael's brothers read poetry written by her son, Christopher.

Speakers described Raphael as a natural athlete, known for both her skillful play and sheer joy on the soccer field, the lacrosse field, and along her favorite running routes.

Her dear family friend, Ann Fine, said she was always amazed at the openhearted way Raphael welcomed people into her life and home.

"She had a steely optimism," Fine said. "By sheer will, she would do more, give more, exercise more strenuously, and right as many injustices as she could. She embraced and nurtured in others their humanity and vulnerability."

Colleagues at Deerfield Elementary, where she was a special education teacher, said she added spark to the school community. She once brought pairs of chopsticks to lunch for everyone; another time, she jumped up on a table to get a child's attention; and at one memorable school department retreat, she got a group of administrators to take part in an exercise in which they made animal noises all at the same time.

Speaker after speaker addressed the role Lyme disease played in Raphael's life, and how it contributed to her death, robbing her of her natural zest for life. Family members say she died of complications from Lyme disease.

Standing together at the podium, and taking turns speaking, her sisters-in-law, B.Z. Reily and Louise Kunkel, thanked friends for the help they'd given the family while Raphael was so sick. That came as carpool rides, meals and flowers delivered, massages given, and other demonstrations of support.

"Andrea's death was defined by a single act of illness and desperation, but her life should not be," they said. "No single act of despair should define a life."

Fine also spoke of how much Raphael struggled with her illness over the past 18 months.

"She lit up the world for many, and her leaving us is a tragedy, for it wreaks havoc in those who she never, ever, would have harmed," she said. "There is so much to honor and remember of her life. May we all go out and live for those beliefs and causes that were important to her and mean so much to John. May we invite strangers to our table, may we have a hugely, hugely broad notion of family."

Raphael's struggle with debilitating Lyme disease is a call to act, said her longtime friend Linda Emerson. "Andrea never made the recovery from Lyme disease that we all hoped and prayed for," she said. As she received antibiotic treatment, she had periods of better health, Emerson said, "but the spectacular flower we all knew her to be never came back."

As Raphael pursued treatment, Emerson said, she was stymied when she received conflicting and confusing medical advice.

"We may not have the answer to Lyme in this room, but surely we have the collective power to encourage dialogue in the medical community about Lyme," Emerson said. "Lyme is here, and by all accounts, it ain't going away without a fight."

Emerson said in honor of Raphael, she wants to spark work for a cure, better treatment, and increased understanding of Lyme disease, "so we don't lose another radiant life to it."

That, she said, would have been something Raphael would have liked.

"Andrea would have wanted to help others suffering from this poorly understood disease," she said. "She would have led the way on this one."

When he stood up, her father, Christopher Raphael, looked out at the crowd, smiled and said, "Andrea would have loved to be here to have all of you around," bringing laughter from those gathered.

He talked about all the hobbies they shared - travel, arts, hiking, sports - and said he would miss his daughter.

"She lived at only one speed - all-out. She couldn't bear living at anything less," he said. "In the end, her disease was the only thing she couldn't overcome."
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Cobwebby
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Joined: Mon 29 Oct 2007 0:55

Re: Woman dies from "complications" of Lyme Disease

Post by Cobwebby » Wed 18 Apr 2012 4:43

from her obituary April 2012
"After a year and a half battle with crippling chronic Lyme disease, Andrea passed away April 6. She left behind her husband, son Christopher, 11, and daughter Maeve, 9, and dozens of beloved family members. She was an amazing, loving mother who also had a wider family: the hundreds of people she met, connected to and bestowed her kindness upon."

After reading the initial article , It seems like she may have commited suicide.
I personally think suicide is the fatal "complication" of Lyme Disease.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Camp Other
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Re: Woman dies from "complications" of Lyme Disease

Post by Camp Other » Wed 18 Apr 2012 7:07

"Andrea's death was defined by a single act of illness and desperation, but her life should not be," they said. "No single act of despair should define a life."
Cobwebby, the above would seem to imply such a thing as suicide. So tragic.

This is a hard disease. Harder than most people know until they suffer with it chronically.

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Spanky
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Re: Woman dies from "complications" of Lyme Disease

Post by Spanky » Wed 18 Apr 2012 15:57

"Camp Other":
Cobwebby, the above would seem to imply such a thing as suicide. So tragic.
Yes, it does seem to imply that.

And so, yes, I am sorry for their loss, also...but I don't think, then, that it is helping the situation to say:
Family members say she died of complications from Lyme disease.

slmo
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Re: Woman dies from "complications" of Lyme Disease

Post by slmo » Wed 18 Apr 2012 23:36

Indeed, there is much between the lines in the article. I agree that Lyme's should have been mentioned, but if suicide was the cause of death, directly implying complications from Lyme is misleading and scary. My heart goes out to the family. Several friends and family members participated in her memorial and spread the word about Lyme disease, which is what the issue needs- exposure. The more I research LD the more I find articles about suicide. Support groups such as this can help prevent the feeling of isolation and loss of control that accompanies chronic illness. We need to stick together, talk about it, educate others, participate in advocacy- anything that might touch and save even one person.

Cobwebby
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Re: Woman dies from "complications" of Lyme Disease

Post by Cobwebby » Thu 19 Apr 2012 16:26

Is depression a complication or symptom of Lyme Disease?

Depression certainly seems to be a side effect of some of the medications taken for Lyme Disease.
And I think active people who are forced onto disability in a lot of situations think of suicide.

During my course of treatment I often thought of suicide. Sometimes it was out of anger and frustration thinking it would be easier and less costly for my family.At other times I believe it was a direct side effect of medication-at which time I was able to tell myself it was the medication talking and not how I really felt.

Truthfully- has anyone else on this board thought of suicide during the course of their illness?
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Cobwebby
Posts: 1716
Joined: Mon 29 Oct 2007 0:55

Re: Woman dies from "complications" of Lyme Disease

Post by Cobwebby » Thu 19 Apr 2012 16:34

slmo wrote:Indeed, there is much between the lines in the article. I agree that Lyme's should have been mentioned, but if suicide was the cause of death, directly implying complications from Lyme is misleading and scary. My heart goes out to the family. Several friends and family members participated in her memorial and spread the word about Lyme disease, which is what the issue needs- exposure. The more I research LD the more I find articles about suicide. Support groups such as this can help prevent the feeling of isolation and loss of control that accompanies chronic illness. We need to stick together, talk about it, educate others, participate in advocacy- anything that might touch and save even one person.
I agree- in fact I think it is something doctors treating Lyme Disease need to talk about head on and discuss with their patients proactively-not just dole out antidepressants. Depression is a major piece of Lyme Disease. Depression is a real probability and major complication of Lyme Disease.
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

Claudia
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Location: Connecticut, USA

Re: Woman dies from "complications" of Lyme Disease

Post by Claudia » Thu 19 Apr 2012 16:46

Cobby, I know for a fact that my son's neuropsychiatric Lyme disease symptoms, his mood disorder, is a medical illness that is a direct result of his CNS Lyme disease infection.

Add to this the negative, life-altering impact on nearly every aspect of one's day to day functioning depending on the severity of the illness and response to treatment, the medical controversy surrounding this disease that also takes a big emotional toll, all of which a patient can be subjected to for possibly years and even decades, and you have the perfect storm.

Since you've brought it up, I will admit here that I have lay awake at night wondering if I was going to get a call about my son at times in the past, and worry about this in the future.

RitaA
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Re: Woman dies from "complications" of Lyme Disease

Post by RitaA » Thu 19 Apr 2012 22:53

Cobwebby:

You asked:
Truthfully- has anyone else on this board thought of suicide during the course of their illness?
The answer is yes, but I'm not sure how much of my thinking was due to undiagnosed (at the time) Lyme disease and how much was the direct result of profound discouragement due to my declining health.

Things are definitely looking up since I was referred to, diagnosed and treated by an Infectious Diseases specialist. I consider myself extremely fortunate that the treatment I received improved my physical health and frame of mind, and that my health continues to improve. I fully realize that not everyone is this lucky, and that suicide is an option for those who may lose hope of ever feeling better.

Rita A

Cobwebby
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Joined: Mon 29 Oct 2007 0:55

Re: Woman dies from "complications" of Lyme Disease

Post by Cobwebby » Sat 21 Apr 2012 16:30

Here's another one lifted from Facebook:

Via BetterHealthGuy: "This is such sad news. Patrick was one of the people I met when I was in Panama about 18 months ago for stem cell therapy. We were there for the entire week getting treatment. When I talked with him around Christmas, he was doing really well and sounded great. Apparently, he took his life this past week related to the challenges of living with Lyme disease. Rest in peace Patrick."

Patrick Wylie Kelly
The greater part of our happiness or misery
depends on our dispositions,
and not on our circumstances.
Martha Washington

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