Alan
Part 1 of 3

Nine years ago, my heart began slowly breaking. I watched my daughter Merritt cope with the loss of her health, her youth, her athletic skill, her academic mastery, her dreams for college and beyond. My wife Carol and I have shared these losses with her and tried to support her through them, but they are never far from my mind. She is my waking concern.

Merritt has not been well enough to leave home since she returned from a high school soccer trip to South America with some kind of infection that wrecked her immune system and left her a hollow shell of the vibrant, popular scholar athlete with the full college scholarship and the world as her oyster.

Carol and I do our best to meet her physical needs, but it’s the social environment we know we can’t replace. Her friends have largely forgotten her and she has very few visitors. Our close family friends care for her and provide company, but it’s not the same as having a group of friends her own age whom she can see and laugh with. I know she connects with young people online, but not being that Internet-savvy myself, I don’t think it can replace the rich experiences she has missed in her isolation.

I have to travel a lot for my accounting job and I seek the latest information about CFS as I travel around the country. I attend conferences, visit with support group leaders and have made appointments on my own to consult with leading physicians treating CFS patients. Merritt and I have reached an agreement about what I share with her about all these interactions. Early on she decided that she didn’t want CFS to become her identity and I have respected that decision. She takes a conservative approach to her treatment since so many of the medicines she tried had horrible side effects. Still, I keep looking for advances that will give her more of her life back, and am careful to suggest only the things that are recommended by more than one credible source.

Next week I will be in New York and I’m meeting with some doctors who may understand why being upright is such a problem for Merritt. I am hopeful, but I will not discuss the meeting with Merritt unless her symptom pattern fits with other patients they see.

I have a plane to board and am looking forward to a rare long weekend at home before leaving again. Carol has a demanding job, too, and it’s doubly tough for her when I am not at home to help caretake. If the weather holds up and Merritt feels up to it, I’ll clean off the lounge chair, bring her down to the patio and grill some food that we can enjoy through the week.

 

 

Alan is a composite character based on real patients’ stories, allowing us to describe a range of common experiences. Later parts of his story will be posted in the coming weeks. Please visit our site often for additions to this and other characters’ stories. We also regularly publish first-person accounts of living with CFS in our monthly enewsletter, CFIDSLink.