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Three days later I receive a call from Dr. Foster’s nurse, Jacquelyn.
Her voice matches the blond, bubbly young girl I met at his office. She’d chit-chatted with me as she took my vitals and very politely asked if I wanted to remove my shoes and heavy sweater before I got on the scales. Of course I did. What woman wants to leave on the layers when it comes to documenting her weight?
“Hi, is this Amie I’m speaking to?” she asks.
“Yes, it is, hello Jacquelyn, thank you for calling,” I respond as I try to quietly, yet frantically, continue getting ready. I have an appointment with a new therapist. I must be an overachiever. This will be number three in my therapy dream team. Jane, our couple’s therapist and now someone new. Her name is Mirielle, recommended by one of Jamie’s closest friends, Jane. She’s going through a divorce and says that Mirielle is helping her through meditative therapy. I have no idea what that means, but at this point I’ll try anything.
I decide brushing my teeth would be too obvious, so I start applying my mascara instead. I’m leaning up against my marble counter trying to get as close to the mirror as possible without climbing on top of it. I crank my neck to the left, balancing the phone between my shoulder and cheek and try my best to cover my lashes with black and coat them well. I’m hoping that it will help me look more awake than I actually feel.
I’m working on my right eye when she delivers the news, “Dr. Foster asked me to call you to let you know that all of your bloodwork is within normal range. Your liver enzymes and potassium levels are a little raised, but nothing to be concerned about.”
A tear falls from my right eye and I blink for a little too long. I feel like going back to sleep at this very moment. I should be relieved, happy that there is no bad news to report.
But I’m not. I’m shattered that my blood isn’t telling the same story that my body is telling every day; that I can barely get out of bed. Or that there are days when I can barely send a text because my hands tingle and hurt with every small movement. Or the days at work when I spend an hour trying to remember a very basic word like negotiate. My work, my marriage and my life are suffering.
“I need an answer now, Jacquelyn!” I want to scream into the phone. But I don’t.
Instead, I am quiet as she goes on, “Dr. Foster will call you later this week with next steps, but it is very good news that the serious conditions are ruled out.”
“Well, could the high liver enzymes and potassium be indicators of something going on?”
“No,” she says. “The levels are slightly raised, but not conclusive in any way. It could be an indicator that you’re taking Tylenol or other pain medications,” she assures me.
I guess that could be true, I think. I have been taking Advil more often lately.
“Thank you for calling with the great news,” I say flatly as I hit “End” and more tears come rolling down my face, streaks of black mascara along with them.
I look up into the mirror and I don’t recognize the person looking back at me. She’s a shadow of the person I remember. The cheeks sunken, eyes red-rimmed and surrounded by bluish/blackish circles. I don’t know her and I’m certain that I don’t ever want to know her. What should have been elation that all is well inside is a reminder of what I already knew. If my blood and body are normal, there is no sign of disease, then it is me that is not normal.
That call ends up being the first of many with the same outcome, although my reactions start to become less dramatic each time.
I start getting used to the statement “within normal range” and take it for what it is, another form of rejection. Unfortunately, it feels harder to take than being rejected by another human being. It’s my body rejecting me.
I have traveled all over to see the best endocrinologists, neurologists, rheumatologists, even a specialist in infectious disease. All in a last ditch effort to find a reason for my rapidly deteriorating health. If I could just fix it then my life will go back to normal.
My weight now dips down to 100 pounds and I’m too weak to exercise. I continue on, pushed a little harder and, although I was not working at the same level my boss and colleagues are used to, I was present. Well, as present as I could be and doing my best to hang on.
What was I hanging on to? I don’t know. It felt like an invisible rope that seemed to follow me everywhere I went. It showed up for the kids and for my work every morning, a reminder that there was something to grasp onto. It was there on those days that I was too tired and in pain to go to work and stayed in my bed for hours on end, drifting in and out of sleep. Only crawling out of bed to pee and to go to the kitchen for food and to refill my water glass.
My husband is here; he checks on me and tells me that things will get better, that we will find answers and will fix it. He started sleeping in the guest room so that he wouldn’t further disrupt my sleep. I was grateful, but lonely. So very lonely in that bed.
But that invisible rope was there. Whatever it was, it comforted me and gave me a strange feeling that everything would be OK. I’m not religious and you would never catch me talking about God, but the only way I can describe the “invisible rope” is that it felt spiritual in some way. Maybe I was hallucinating, but maybe not.
Finally, Dr. Foster suggested that I come back in for a follow-up to check in on my prognosis. This is where he broke the news, “Amie (still that little French thing he did with the ‘lla’), you have seen a number of the best specialists in the country and all of your testing has come back normal; which we’re very grateful for.”
“Yes, very grateful,” I lied and couldn’t fight back tears.
“I understand that you’re still not feeling well and that you’re losing weight. Now, I want to be clear that your weight is not a concern for me, you are a very thin woman, but your BMI is still within a healthy range, so please do not let that be a source of worry for you.”
He looked at me tenderly, sensing my uncertainty. My husband was there, so he turned to him and it reminded me again of John Kerry. Just like a politician delivering a speech, he was looking around the room to make connections with his audience.
He continued, “I have done a little research on your case, as it’s unusual and one with very little to no evidence of a medical condition.”
Husband nods in approval of Dr. Foster’s assessment. He has told me hundreds of times that, after all this time and money, since there are still no answers, it’s time to give up the hunt.
Then the doctor turns to me, “There is something called Chronic Fatigue Syndrome, which you have likely come across if you’ve been searching online for your own medical answers.”
He pauses and I can tell that he knows that I have been frantically searching every disease from lymphoma to brain tumors, absolutely sure that I’ll be able to identify something that fits my description and I can be done with this. Don’t get me wrong, I do not want a brain tumor. But I do want an answer and I know with every fiber of my being that this answer will free me from the hell I’m living.
He laughs at his statement like it was a little joke and goes on, “We call this a syndrome because it is a set of medical signs and symptoms that are correlated, but we don’t have enough evidence to call this a health condition or disease. What you’re experiencing can’t be explained by an underlying medical condition. We don’t know much about the genesis of CFS, but we do know that there is a psychological component here that we can definitely treat,” he explains. “I would like to