Laurel Bertrand has dreams for her future that give her a clear stake in the fight against CFS.

Dreams at Stake

My name is Laurel. I'm 36 years old, and I'm bedridden with chronic fatigue syndrome (CFS).

Prior to being stricken with CFS, I was a young, healthy, energetic, ambitious and well-educated young woman. I graduated magna cum laude with a BS in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I backpacked through Europe for a month at spring break. After college, a friend and I spent nearly two months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

I came down with CFS at the age of 24 after a severe case of mononucleosis. In the first few years after becoming ill, I was able to push myself to continue working full time, but with great difficulty. I often had to rest in my car during my lunch hour and went straight to bed upon getting home. I was of the mind-set that I could push through anything, and that with enough perseverance, I would eventually overcome. Not so.

I learned the hard way (and I'm still learning) that CFS doesn’t reward that kind of pushed perseverance. After years of pushing, I had a CFS crash so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was eight years ago. I’ve spent what was supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

Lest you think I’ve merely fallen into some kind of depression or given up, I assure you, I have not. I'm not depressed, and I still fight to overcome my obstacles every minute of every day. In many ways, I fight harder now than I ever did before. It’s for that reason that I’m sharing my story with you today.

Despite my situation and isolation, I was fortunate several years ago to have found a friend and companion who can relate to my struggles and who brings me hope and laughter every day.  We met online, and we write every day. He, too, has a severe case of CFS and is wheelchair-bound.  And he, too, became ill at a young age (19) after a severe case of mononucleosis.  He has been ill for nearly 25 years now. His friendship and sense of humor are my strength.  

Somewhere in the midst of writing each other every single day for more than five years, we became best friends and fell in love.  He’s the most extraordinary person I know.  This past spring, he flew out to surprise me and propose, and I (of course!) enthusiastically said yes. We’re now thrilled to be engaged, and can’t wait to be well enough to get married someday.

We dream of having children, and raising a family.  We dream of successful careers, volunteer work, travel, adventure and all the things we’ve so longed to do.  A former athlete in high school and college, my fiancé dreams of one day being able to run again. He has a PhD in mechanical engineering from Carnegie Mellon and might like to teach someday.

I hope to someday get my master's in speech pathology and work with deaf or special needs children. I also have aspirations of perhaps starting my own business.

I dream of the little things, too.  I dream of someday being able to walk down the hallway or outside to stroll in the yard. I dream of being able to take a bath, or even a long, hot shower, instead of a sponge bath. I dream of being self-reliant. I dream of being able to spend time with my friends and family, and speak for hours about their daily goings-on as we catch up on so many years lost. I dream of being able to read and play with my niece and nephew, instead of just being limited to letters to communicate. I dream of holidays spent with loved ones instead of all alone, since I’m currently unable to travel, and my health can’t handle many visitors. I dream of walking, and running, and dancing. Most of all, I dream of the vibrant, glorious feeling of good health. And I strive for it every day.

In the meantime, I watch through my bedroom window as time slips by. But the battle goes on.

So I share this with you today so that you can help spread the word that more needs to be done. More needs to be done to raise money for research, so that treatment options or even a cure may be found. More needs to be done to help raise awareness and understanding, so that those with CFS aren't made to feel shamed for being ill on top of everything else they go through. More needs to be done to educate doctors, so that patients aren't so easily dismissed or mistreated.

Most of all, more needs to be done so that those of us stricken with this disease can have our lives back.
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