My friend just died. Lynda suffered from a number of autoimmune conditions, not the least of which was Chronic Fatigue Syndrome.
CFS descended upon her two decades ago, after she was exposed to someone with a bad virus.
They got better, and their life went on. Lynda didn't recover, and her life did not.
She lived with her two cats Oliver and Lilly. She was fortunate to have some assistance in her home from personal support workers -- many who are chronically ill don't have any help -- and Meals on Wheels.
She was unfortunate in that all her old friendships had fallen away over the years and, unlike many of us chronics, she had no virtual life online.
Lynda had a computer and used to know how to use it, but the cognitive thief CFS had stolen her ability to use a computer years ago.
She had a doctor who did not "believe in" Chronic Fatigue Syndrome. This despite the fact that he stood by and watched her deteriorate over many years.
He reinforced her fear that it was all in her head. Though he would not treat her condition, he also would not refer her to specialists who might have done her some good.
Other general practitioners would not take her on as a patient because she had so much wrong with her. Something wrong with this picture?
Lynda was a prisoner of her frail body and her faltering mental capacities, trapped within her home.
One of her personal support workers had contacted me through my website Ncubator.ca, where I talked about my experience with Chronic Fatigue Syndrome.
When she told me that Lynda couldn't use her computer, I knew from my own past isolation that this is a brutal loneliness.
For that reason, I did something that I never do. I phoned Lynda. Phone conversations tend to exhaust me but I needed to do it, remembering what it's like to be so helpless and needing someone to respond.
We never actually met but we spoke often on the phone over the last year and a half. It was a blessing for me to get to know her.
It was a heartbreak to know that there was so little I could do for her. We talked about our lives, our thoughts, our feelings. We told each other stupid jokes, and laughed like loons.
I had thought Lynda was getting just a bit healthier in the last few months. We talked about having her come to visit.
She was only a four hour drive away from me, but it might as well have been the other side of the world. I can't travel that far, and certainly neither could she.
But talking about that future visit was something to put some hope into. And we did.
And then she disappeared.
She had talked several times about believing she didn't have much time left, and really she didn't want to be around much longer.
Life was full of grief for Lynda. I could only hope that it was just her supreme discouragement talking.
But a few weeks ago, I called her number and nobody answered. I called often, and the sense of foreboding grew with each unanswered call.
I emailed someone who might know what was happening -- I hoped maybe it was yet another hospital stay, or perhaps she was feeling better and was just out when I phoned.
I received an email that confirmed the worst. Lynda had passed away.
We would never talk on the phone again, never have her over for a backyard barbecue. She would never rest in my spare room.
Lynda was afraid that she would die and nobody would notice. I'm doing what I can to make sure that doesn't happen.
I know that life was a heavy burden for her, and had been for years without letup. I know that she had been wishing to die and now the pain and isolation was over for her.
I'm trying to accept that. But mostly I feel bad for me. Because my friend is gone.
Visit Jody's website and blog at http://www.ncubator.ca and http://ncubator.ca/blogger
Add a Comment15 Comments
My deepest and sincere sympathies on the loss of your friend. I have a friend who lost her sister in the early 80's with ME/CFS was an all out epidemic in Europe and the U.S.
No one believed her, except my friend. She was furious and she and I met in 2006 and she was talking about her loss with her mom and I did something I never did before; admit that I had it. They instantly wanted to know everything I knew about it. I felt for the first time since contracting this, that I could be helpful to someone else. Bless you for befriending this woman and bringing joy into her life.January 2, 2013 - 5:36pm
I'm so sorry for your friend, who lost her sister. I'm glad to hear that the family who lost her responded to you with open hearts.
Thank you for writing this. I did what I could.
JodyJanuary 2, 2013 - 6:04pm
Thanks Vonnie. I appreciate it.September 26, 2012 - 6:35am
I just happened across this post, Jody. So sorry to hear about your friend. Hugs to you.
VonnieSeptember 25, 2012 - 8:39pm
Allied NATO government is hiding HIV-Negative AIDS cases (like mine) under the "Chronic Fatigue Syndrome (CFS)" ICD-code.
Why isn't CFIDS a *reportable* illness overseen by our public health department? Why are CFS and ME (i.e., the same exact disorder) suspiciously categorized as two separate illnesses on a worldwide level (i.e., by ICD codes)? Doesn't anyone else but me, very clearly see, the catastrophic cover-up going on here?
Why are we not reading about NON-HIV AIDS cases (and/or the AIDS-like nature of CFIDS) on the front pages of every newspaper in the world? And if CFS and ME are NON-HIV AIDS, then, depending on who you believe, there are anywhere between 500,000 - 28,000,000 Americans out there with a transmissible illness. If that is what it truly is, our new form of AIDS dwarfs the ‘original’ AIDS epidemic ---> TENFOLD.
I am not afraid to say that I have AIDS without HIV. I am equally as unafraid of saying the most obvious thing about CFS & ME: IT SURE DOES LOOK LIKE AIDS TO ME.
If it takes courage to think and to say the things that I do, I hope that there will be a miraculous outbreak of bravery from coast-to-coast, and across-the-pond.
I stopped fighting for myself a long, long time ago.
I fight for humanity!
I demand a CFS/HIV revolution! Vive La Revolución!
Join me on Facebook: HIV-Negative AIDS?
My 5min federal testimony about NON HIV AIDS from the June 2012 CFS & ME advisory committee meeting (Washington, DC) just posted:
http://www.youtube.com/watch?v=ubjGm5dILpY&list=PL600CB038194B4593&index=11&feature=plpp_videoSeptember 19, 2012 - 6:22pm
There was an interesting podcast on CFS on the 'Naked Scientists', out of Cambridge University in the UK. The upshot of some of the research coming out of there is that CFS seems to be triggered by infection - the severity matters more than the infectious agent - in people who are genetically susceptible, and that it involves abnormal levels of lactic acid in the blood, and problems with orthostatic tolerance similar to what is often seen in the elderly. They also had an earlier podcast about a very small study in Norway where some CFS patients were given a drug used to treat some kind of blood cancer - lymphoma, I think. Maybe some new angles are on the horizon....September 19, 2012 - 2:57pm
My condolences to you Jody. I had a best friend I met the way you describe...originally as part of a support plan, but she was so special she became closer to me than anyone, and vice versa. I understand too well why she had to go when she did, (I am not one of those who has ever improved), but I still miss her all the time. Please know that you gave Linda the best gift anyone could have: your time, energy and friendship.September 15, 2012 - 4:49pm
With my deepest sympathy,
It's hard to say what it is that causes such connections with this individual or that one. I have met many people who are chronic, and who are in dire straits. And each one breaks my heart. But sometimes, there is a special draw to someone that maybe we've never even met. That was the case for me with Lynda, as was the case for you and your friend that passed away.
Thank you for your kind words and compassion.September 15, 2012 - 5:21pm
I am sorry for your loss Jodie, and am sorry for us all. I remember when you put a call out for help for her. I was at one time near that point but somehow am managing to get better. I thought that I was going to die and am sure would have if I didn't have my doctor who is doing what he can for me and I have gotten quite a bit better. May she rest in peace
glenpSeptember 14, 2012 - 11:07pm
When I first put out that call for help, I was comforted by the great response that came. Thank you for caring about this woman you'd never met.
Those of us, like yourself, who have felt the fear of disappearing without a trace, and without anyone looking for us, will never forget what that is like, even we lucky ones who get better.
Like you I have been fortunate to have a doctor, in my case a naturopath, who is helping us to regain our health, and who give us emotional support during that difficult process.
Thank you for being there.September 15, 2012 - 5:17pm