Memory Island
SOCKS: Siblings Of CFIDS Kids

By Ben Frese

Originally published in Youth Allied By CFIDS, Fall 1996  

This edition of The SOCK Drawer is contributed by Ben Frese, whose older sister Heather has been ill with CFIDS for 12 years - since Ben was five years old. Although his memories of her are mainly of illness, in this article Ben tells us of some of his happiest times with Heather.
-Katie Moore, Coordinator, "The SOCK Drawer"

Wouldn't it be great if you had no worries and strived every day just to have fun? Of course! Unfortunately, you can't throw your life away and go out and have fun. Otherwise, who wouldn't leave it all behind and live the happy and fun life? This brings my mind to something that I ponder just about every day when I get out of bed: I could die tomorrow. But do I go out and live every day to the fullest of my ability? No, of course not! That would be crazy. But it sure would be something to remember, wouldn't it? Because maybe that's what it's all about - having something to remember.

Think about it, you don't remember every day of your whole life. You remember moments. The sad moments, the big life-changing moments and, of course, the fun moments. And the fun moments must be the most important, because they're what you think about when you think of the past, aren't they? Well, maybe not if you're a very depressing, dispiriting person. But I'm a very outgoing, energy-filled, little whipper-snapper (so says my father). So I try to think about the happy, fun, "yee haa" moments to remember my and my sister's lives by.

Some of my fondest memories are about family vacations at the Outer Banks of North Carolina. My family has traveled the roads to the Outer Banks many times - every summer, to be exact. When my family is visiting this heaven on earth, everyone seems to be happier and more laid back, and we joke around more. From these times I collect the most surreal memories, including my first stand-up attempt on my first surfboard and climbing the 208-foot Cape Hatteras Lighthouse. I even remember little things like talking to local surf shop owners and cashiers. These are very vivid memories; it seems like they happened just days ago, rather than months or years.

Some of of my fondest memories are of my sister Heather playing in the ocean waves and making me laugh while playing Mad-Libs. Just thinking about her laughing and smiling and playing in the ocean is like a beam of warm sunlight among some of my darker, more depressing memories about her. After her CFIDS symptoms started, there were fewer and fewer of those warm, fuzzy times to remember. So our annual trip to the beach is important, because it replenishes some of those good memories.

The best part about our beach trip this year was the trip home. Heather was invited to stay at her friend Cat's house in Richmond, Virginia. Heather is always hogging the phone line while talking on-line or on the phone, not only with Cat, but also with some of their other friends, such as Rebecca, Claudia, Sharon and Ann---the whole crew! They talk for hours, but I don't mind the wait for the phone after I hear Heather laughing from the room above me.

So, although the anticipation of getting home was quite high, I didn't mind stopping in Richmond because I knew Heather would have fun. And she did! She and Cat went out driving somewhere. I wished I could go, too, because I wanted to see her with a friend, having fun and talking, and doing the things girls do. I've never been able to see her do these things, because she has always been home, too tired to go to school and do normal stuff. But I left the two of them alone for the day, and I was happy because I knew that she was out on the town having fun with her friend.

Heather has a good attitude about all that she has to go through, and we even joke about it a little. For example, we stopped at a Wendy's on the way home from Richmond. After we were done, my dad went to get the car to pick Heather up by the door so she wouldn't have to walk so far. But the door was by the drive-through window. My dad couldn't really bring the car up (with a camper on the back) to the front of the line to get her. So I said, "Come on, piggyback!" She got on my back and I tried to trudge across the parking lot. After about three steps, we both fell down, right in front of the line of drive-through customers. We ended up having a good laugh, and I don't even remember how she got to the car! But it was funny! It also showed what a pain this disease is - she can't even walk across a parking lot!

So, now we sit in Ohio waiting for the calendar to change to July again, so we can go to the beach again. I'll think about that trip to the Outer Banks for the next 10 months, wondering if it will be the trip where Heather will run into the waves herself and take long beach walks. Because the trip where Heather does these things will definitely be the most memorable trip of all.