My heart pounding and my body drenched in sweat, I awaken, sobbing. The rhythmic sound of rain pouring off the eaves of our roof gently tugs me back to reality. Thankfully, it was only a dream! My children are grown, safe, and I'm not drowning in a struggle to rescue them. The only real part is overwhelming fatigue and the recurring dream that I'm too depleted to handle some life-threatening crisis.
Every bone and muscle in my body aches, my throat hurts, my head throbs, and I feel as if I need windshield wipers for my brain. It's as foggy as the skies are gray. By the time I drag myself out of bed, my husband, Larry, has slipped quietly off to work. Getting my bearings, it hits me--Anna and I are lunching today! She was my favorite psychology professor in graduate school, and we became close friends. Not long ago she moved to Maryland to set up her own practice. Though we lost touch in recent years, I know ours is a friendship that will continue right where we left off. Anticipation flows through my veins. Quite an energy booster, Anna. Might be the cure researchers have yet to discover.
When I first heard of chronic fatigue syndrome (CFS), I joked to Larry, "I'm always tired! You mean they have a name for that?" Little did I know how much more than "tired" it really is. A few years later I collapsed from the very illness I took so lightly. Without warning, I was suddenly staring at ceiling lights as my gurney was pushed through the same hospital where I had arrived that morning, dressed professionally for my job. It was a jolting reminder that our lives can change with every breath we take.
The least they could do is give chronic fatigue syndrome a name worthy of the devastation it causes. It might as well be chronic flulike syndrome, foggy brain syndrome, visual disturbance syndrome, chronic nausea syndrome, excruciating pain syndrome . . . or whatever symptom is currently most prevalent. Some activists are working to rename it chronic fatigue and immune dysfunction syndrome (CFIDS). At least that sounds important.
Breakfast this morning consists of a bowl of cereal. No energy to prepare anything else. Unfortunately this scenario is all too often repeated for lunch and dinner. What would I do without Kellogg and Post? I wash down my medications with a glass of orange juice, along with so many vitamins and supplements that I start to wonder if my diet is more capsules than food.
Assessing my cupboards, I realize I should do a grocery run before lunch. I'm exhausted just thinking about it. I really think during the past few years someone has added weights to doors, lengthened aisles, and made parking lots farther from buildings! Last week in the midst of shopping, I abandoned my partially filled cart in the store. Dizzy and weak, I had to get out of there, embarrassing though it was. Today I can't seem to muster the energy to go and still do lunch. Maybe Larry can pick up a few things on his way home. It's not like he doesn't have enough to do already. I feel guilty that I'm not the helpmate I once was, but, fortunately, he is more than compassionate and supportive. Many CFS sufferers are not so blessed, and an astounding number of their marriages end in divorce.
I'm one of the lucky ones, actually. People with CFS range from those who are completely bedridden to those who still manage to work. I don't fit either category, but most days there is a window of opportunity when I can accomplish a little. I have to make choices where the energy goes: a little housework, a little laundry, or like today, the occasional lunch appointment on my social calendar. I've discovered it isn't easy nurturing friendships when one is chronically ill. Even getting ready for an outing is a challenge, but at 11:45 I'm finally dressed and ready to go.
Autumn leaves do the tango under the November-blue sky as I walk to my car. Dark, thunderous-looking clouds linger toward the east, but the sun is shining, dispelling any lingering remnants of my early-morning nightmare. Sunshine should be harvested and added to antidepressants. It's astonishingly effective. But it's also double-edged. I quickly grab my sunglasses to ward off pain in my light-sensitive eyes.
Arriving at the restaurant, I pull into a space with a blue wheelchair faintly painted between the lines. I hate admitting I need the handicapped placard I hang from my mirror. Some days I don't, but today I'm grateful for it. I step out of the car knowing well that I look perfectly well. I can't blame people for not understanding this invisible illness. How can I expect anyone else to understand something that makes no sense to me? I never know how I will feel from week to week, day to day, or sometimes minute to minute.
Suddenly Anna appears, walking toward me, looking as sharp, professional, and beautiful as she did when I last saw her. We embrace, and the years as well as differences in our circumstances melt in the warmth of our longtime friendship.
"You look terrific!" she says, her smile lighting her eyes.
"And I thought you were an honest woman," I reply, chuckling . . . yet ruefully thinking how deceiving looks can be, especially for those with CFS.
We are barely seated when she says, "Talk to me. How are you feeling? I've had clients with chronic fatigue syndrome and know something of the debilitation it causes. I'm so sorry you have it." Like a warm quilt on a winter day, her words tuck around me. Living with an illness that can easily be misjudged and labeled as "lazy" makes understanding and acceptance all the more appreciated.
"I'll admit this isn't my best day, but I'm delighted to be here. Thanks for seeing beyond how I look. Not everyone does, you know. I have to laugh at myself. I put on makeup, search for the right clothes, tell people I'm fine . . . and wonder why they don't realize I'm not well. Crazy, isn't it?"
"Not crazy. We all put on fronts. We are blessed if we have a few who understand beneath the masks we wear." She's right. I am blessed. And hungry. Shakiness reminds me energy needs to be delivered to my bloodstream. Soon.
Appearing frazzled, the server finally arrives at our table. I notice dark circles under her eyes. "I'll bet you're exhausted when you get home from work, Virginia," I say, checking her name tag.
"You don't know the half of it! Are you two ready?"
"Do you have anything fat-free?" I ask facetiously, thinking of the extra pounds I can't seem to shed. People with CFS often either lose weight or gain it. Why couldn't I be one of the former?
"Just him," she nods toward the skinny assistant walking past. We burst into laughter.
"Tell me more," Anna says after we order. "How are you coping?"
"Well, at first being unable to work left me feeling totally useless. I finally realized I needed help dealing with the depression it caused. Through my counselor's guidance, I had a lightbulb moment. Happiness is a choice! Not that I didn't know that in theory, but I began thanking God for every piece of laundry that got folded and every dish that got washed. I thanked Him for the sunrise, for the sound of my kids' voices, for Larry, for friends who made time to be there for me. Some got busy in their own worlds, but I thanked Him for them, too . . . and eventually I learned to thank Him for the very illness that dropped me to my knees. It has changed my life. I'm more in tune with living each moment to the fullest, whatever that may mean on any given day. Sometimes, though, I still forget."
"Life is a process," Anna says. "In a world defined by accomplishment, it isn't easy to internalize that true value lies in who we are, not what we do." She looks so perfect. Auburn hair, framing her open face, accents her deep-brown eyes. Her life seems pretty perfect, too, married to a doctor and doing what she loves. I can't help envying her. It's hard not to be jealous of others' energy and productivity. Coming back from my thoughts, I realize I've rambled on without asking about her.
"So how's life treating you? How is Frank?"
She looks away; then replies hesitantly, "Frank filed for divorce just before I moved here. I haven't told many people . . ." her voice catches. Shock reverberates through me, shattering my preconceived notions. Not so perfect, her world. You'd think I'd know better than to judge by externals; it's what I long for from others.
Reaching across the table, I take her hand. "Oh, Anna, I'm so sorry. I didn't know . . ." Tears tell me she reads what I can't find words to say.
Our food has vanished when Anna says softly, "You look tired, Shirley. I see it in your eyes." She's right again. I'm fraying at the edges. My body says I need to get home, even as my heart pleads for more time. I've learned I must listen to my body--or pay the price of exacerbated symptoms, sometimes lasting weeks.
As we leave, Virginia stops me. "Thanks for noticing. Most people don't realize how hard I work. They just complain if things aren't right." Makes me glad I said something. If CFS has done nothing more than give me deeper empathy for others, it is a blessing.
Tonight Larry will be late, and darkness has arrived early. I curl up by the fire, candles aglow, savoring the joy of feeling understood . . . and more aware than ever that everyone has invisible burdens. Beneath smiles and laughter can linger an illness we aren't aware of, heartaches we cannot see--a family torn apart, weariness from life's daily grind, tragedy, discouragement, a traumatic childhood, or simply the loneliness and insecurity common to all humankind. God has a way of reminding us that all things work together for good to those who love Him. Even an invisible illness.
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Shirley Kromann is a freelance writer who lives in Fairfield, California, with her husband, Larry.
olding hands, my two small children and I stroll along a sandy beach. Sunshine, shimmering on the water, chases the tide to shore. The kids playfully make footprints, laughing as they disappear in glistening, wet sand. Suddenly, from out of nowhere, an enormous wave crashes over us, yanking my children from my grasp and thrusting us into an unexpectedly angry sea. Frantically I try to swim to them, but the force of the waves sucks me down. Engulfed in panic, I realize I'm simply too weak to reach them.
