"I remember everything!" As a little girl, I was known to frequently make this rather bold (and no doubt equally annoying) proclamation. There was nothing in my life, I proudly declared, that I didn't remember. This drove my older brother, ever pragmatic, a little bonkers. "You can't remember everything," he'd tell me. "It's impossible." My mother once tried to ease his frustrations by reminding him of the fact that I was only five years old. Not much had happened to me in my life yet. I didn't have all that much to remember. Memory loss, particularly in terms of short-term memory, is one ..read more

I have not posted to my blog in quite some time. Primarily, this is because I haven't felt well enough to put my thoughts together in any kind of formal, unified manner.  But it's also in part because, being bedridden, not much happens in my life that feels all that worthy of noting. I wake up each morning, I check my e-mail, I eat some food, I look out the window, listen to some audiobooks or the radio when able, then -- exhausted from this minimal activity -- I am forced to go back to sleep. Day in and out, year after year. Occasionally, though, things do break from the norm.  Thi ..read more

Sometimes, on "good" days, my parents wheel me to the other end of the hall where, for a couple hours, I am able to lie in their bed instead of my own.  I often refer to these days as my jail break. It is the only time I ever really get to leave my room and see an alternate view. I am fortunate that this alternate view also happens to be so gorgeous.   A funny thing happens when you are confined indoors to one room day after day for over a decade.  The outdoors becomes almost surreal in its beauty.  The mountains are always more majestic than I remembered, the trees a bri ..read more

A few months ago, I received a catalog in the mail from a popular clothing company.  Splashed among the first few pages, I found an array of photos showing off their new line of pretty summer dresses. And I suddenly realized that it's been 12 years since I wore a dress.  Such a simple thing, and yet, as silly as it may sound, the thought nearly brought a tear to my eye.   While I do miss wearing something so bright and feminine, it was what the dresses represented that evoked in me such longing:  the promise of warmer weather ahead, of being outdoors, experiencing adv ..read more

This is just a short post to let everyone know I will be taking (or continue to take) an extended break from blogging in order to focus more fully on my health. I hope to be well enough to start writing again in the near future.  In the meantime, I thought I'd share a few more photos from my little bedroom window. Within the confines of these four walls, my life is at a standstill. Outside, life goes on -- vibrant, beautiful, active and free. It is where I so desperately long to be. Amaryllis Blooms Amaryllis Cute Bunnies Deer at Christmas-time ..read more

It is with much sadness that I write of the passing of Emily Collingridge -- a brave young woman with severe ME who died on Sunday from complications of the disease. She was 30 years old. Emily, who was stricken with ME at the age of six (and had been mostly bedridden since her teens), still managed to accomplish much in her short life. She authored the book Severe ME/CFS: A Guide to Living. She also worked as a volunteer advocate for the Association for Young People with ME (AYME) as well as a family support charity called Home-Start. She managed to do all of these things from her bed, but ..read more

One thing I think this illness has taught me over the years is the need to maintain a constant sense of perspective. I can recall healthier days many years ago when I sometimes complained about various inconveniences I now see as luxuries:  long lines at the grocery store, traffic, the high cost of a movie ticket or night out with friends, the tediousness of housecleaning, an especially difficult day at work. And yet, as I reflect back on those things, I long to find myself in some of those same circumstances, which I now view as great privileges. Today, I would do anything for the ble ..read more

The upcoming CFS Advisory Committee (CFSAC) meeting will be held in Washington on November 8th and 9th. For those who may not be aware, the CFSAC exists to provide recommendations to the Secretary of Health on what directions to take in terms of research, science, care and broader health issues related to ME/CFS. I had hoped to make another video testimony for presentation at this meeting; however, my health simply did not allow for it at this time. My testimony was therefore submitted in writing. You can find it below. My goal was to show the faces and tell the stories of some of the more s ..read more

This past summer, a group of highly respected specialists and researchers from around the globe published a paper in the Journal of Internal Medicine entitled Myalgic encephalomyelitis: International Consensus Criteria. In the paper, the authors note that the original medical term for this illness is myalgic encephalomyelitis (ME), and suggest it is time to cease use of the inappropriate term 'chronic fatigue syndrome.' The label 'chronic fatigue syndrome' (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more rec ..read more

The below journal entry was written in 2001 sometime after becoming mostly bedbound and unable to speak above a whisper. I had lost so much, and had no real means by which to communicate that loss. I was still living in my small apartment then, and at the time, could shower and heat up food on my own. However, doing so took every single tiny morsel of energy I had and rendered me otherwise bedridden. I had no real computer access, as I could not read or sit up at the computer long enough to write mail (I did not have a laptop or portable email device yet). I couldn't talk on the phone or carr ..read more