I keep deciding I’m going to save my energy for training Barnum and getting my writing career going again, and then things come up. Things like deciding to try to save someone’s life.
For months, I’d heard from friends about a good friend of theirs, Elizabeth Chalker (many of them call her Lizzy), being desperately ill, and how she was dying because they couldn’t find a doctor to treat her.
Well, I’ve been there. When I was really sick, first, doctors thought I had Lyme disease. Then, they decided I was too sick to have Lyme, that it must be something worse to be this horrible, something they didn’t know about. Some of them told me to go away and get diagnosed by someone else, because they didn’t know.
Then, other doctors knew I had Lyme, but because it was such a severe case, because I was so sick and it was so complicated by my other diseases, they said they couldn’t treat me. It was too risky. They didn’t want the responsibility if something went wrong. So, my friends and family thought I was dying.
Looking back, I realize I was dying. At the time, though, I refused to believe it.
So, I thought I understood Elizabeth’s story of isolation and unbelievable suffering and inability to find medical help.
Then I visited her website.
I saw her “before” picture:
Then the “after” pictures:
I thought, “That’s terrible. I really hope people can help her, but I’m so done in already, it will have to be other people. I don’t know her. People who know her will help.”
More time passed. A friend asked me to help. I made the tough decision to put my needs first.
Yesterday I got an email from a friend of Lizzy’s. She pleaded for help for her. She said, “Just watch this video.”
I watched the video — which another friend made about her, and I changed all my plans for the week.
I was wrong. Her story is so much worse than mine.
This is the video, below. It was very hard for me to transcribe because I frequently had to stop typing because I was crying too hard. It’s very painful for me to watch, because I know that if I hadn’t gotten treatment three years ago, I’d be in Elizabeth’s shoes. Or I’d already be dead.
Honestly, I don’t know how she’s not dead. That’s what doctors keep telling her, too: “You should already be dead.” Really comforting stuff for her to hear, I’m sure.
This is the transcript of the video.
(There’s no dialogue in the video, so it’s accessible to Deaf and hard-of-hearing viewers. The only audio is a song.)
She has had nobody — nobody — in her life except a good friend, Corey, who told me that Elizabeth is “a daughter to me,” who visits when she can — and Elizabeth’s dog, Symon, who — as I discovered from the video — died recently.
She is in bed around the clock, and she is dying, absolutely, unless she gets help. Her organs are failing. Without medical care, she will be dead. She is a devout Christian, and she has held on through “raw faith,” even writing a book about her struggle to survive, focusing on faith. She has asked her God to take her, but she’s still here. I don’t believe in God, and I still cry when I read about that. I don’t know why.
Because so many other people with Lyme who have gotten to know her over the years via the internet (which she is much too sick to use now) care about her, or just care that she is a person who needs help, she now has a chance. A specialist was found in Maryland who has agreed to treat her. It was very difficult to get an appointment with him, but it is booked for next week.
Hotel reservations are made, plans are made. Dozens of people have been working tirelessly to get her to this doctor. The problem is that the only way Elizabeth can travel is by air ambulance or nonstop charter jet. She’s too sick for anything else.
The people working on this tried for months to get a foundation, a celebrity, one of the mega-churches to help. To donate a plane. Nobody was interested.
They approached the charities that fly people for medical care for free, and would you believe, Elizabeth doesn’t meet their requirements, because she’s too sick? For example, one requires that patients be ambulatory and be able to switch planes.
So, I won’t be answering comments or posting blogs for the next few days (although a new — and fun! — post goes up tomorrow that I wrote a few days ago and scheduled to post on Thursday), because I’m hoping by this Sunday, June 19, Elizabeth will be on a plane bound for Maryland, to get the help she’s been seeking for years. Before it’s too late.
Training my service dog is important. Blogging is important. Writing interviews of people with MCS, and writing lesbian erotica and all my other writing is important. But saving a life? I can’t NOT do whatever is in my power to help make that happen.
So, I’m writing this blog.
I’ve also written a press release, which is something I haven’t done in nine years. I had to refresh my memory about how to do it by using internet “how to”s. My brain hurts.
I’ve just received word that the fact-checking is done, so we can start using the release. If you have experience contacting the media (newspapers, magazines, TV shows) and/or you have any media contacts, please get in touch. I could use the help. Here is the press release.
I emptied my PayPal account. I contacted a friend who knows pilots who is in Florida. She is trying to find someone who can donate a plane or their time as a pilot. And I’ll be writing another post, at my other blog, which I hope you will read, too. That will have to wait till after an eye doctor appointment (and recovery time) tomorrow. I’ll post a link when it’s up.
When this is over, and Elizabeth is on the road to recovery, I hope to get a chance to speak to her. I hope she, like me, is able to look back on the time she was dying and be so grateful that things are so different now.
– Sharon, the muse of Gadget, and Barnum (so bored AGAIN! SDiT?)
After Gadget 
sharon,
elizabeth’s condition sounds VERY similar to mine. i’m deeply concerned that the diagnosis of late-stage neurological Lyme disease with co-infections (my diagnosis exactly since 2005) is in-complete. altho i did indeed have multiple lyme infections, i’ve recently discovered what is at the CORE of my illness: i have genetic mutations that have manifested as my autonomic nervous system SHUTTING DOWN. i have multiple organs and systems failing. my current diagnosis is more accurate: DYSAUTONOMIA with several other related syndromes that are an outcome of the failing automonic nervous system. my body can no longer maintain homeostasis automatically. i am learning how to CONSCIOUSLY and MANUALLY rebalance all the dynamics of my systems in order to survive (temperature, ph, blood sugar, ion transfers into and out of cells, etc!)
IF this is also the case for elizabeth, her dysautonomia and related conditions MUST be treated first before the lyme–or it’s possible that her system will not be able to tolerate the lyme treatment, especially agressive antibiotics.
over the last few months, i have received huge insights into how my body is dysfunctioning, and learning how to re-balance it.
can you share this info with elizabeth and her friends?
i am still seriously ill, and i am being referred by my doctor this week for HOSPICE care. at the same time, for first time in over 9 years of being disabled, i have strong sense that i know exactly what i need to do to heal. but my condition is daily so fragile and precarious, that i could literally die any day. still, i am inspired to share whatever i am able to help elizabeth if she is open to receiving.
with profound loving concern,
~kendra~
Kendra,
Yes, actually that is what the doctor is planning — to address some of these other conditions first, to stabilize her — before she can have the infections treated.
I did think of you, actually, when I learned of Elizabeth’s condition. I have also, actually, wondered if you might have Lyme and tick-borne disease because of your description of your many disabilities and how they are deteriorating.
You seem to be referring to having TBDs in the past tense, while I am wondering if you do still have active infections; I was getting worse and worse while being “treated” for Lyme because the treatment was not aggressive enough — too low doses of the wrong and not enough antibiotics and antiparasitics. It was only after two years of going hard at multiple infections that I really started improving and kept improving. It is really hard to believe, especially for most doctors, how stubborn and persistent these bugs are against a sustained onslaught of drugs to kill them. That is why so many doctors told me I had HAD Lyme, but I couldn’t still have it, because i had been treated for many months and continued to deteriorate. And eventually, I believed them and developed my own theory as to why I was sick, because there were no answers from the doctors.
I am deeply concerned about you, and hearing about the referral for hospice saddens me but doesn’t surprise me. I hope it might still be possible to turn your condition around if you are not already on aggressive treatment for multiple infections.