Day 216 “Living with the Unknown”

“We don’t know what causes this illness, and there is no cure or course of treatment other than management, and that is mostly trial and error.” It is the standard answer from all healthcare providers when it comes to ME/CFS.

“I am flat out frustrated,” I tell my therapist. “I can’t seem to find a regime that works. I can have one or two good days and then, wham, I am knocked down for no apparent reason.”

“That seems to be the way with this disease. How are you managing emotionally?”

“Okay, mostly, but on the worst days I find myself always on the edge of tears.”

“There is a grieving process that accompanies a diagnosis of chronic illness, you know. It has to do with the loss of your normal life, and all the things that go with being healthy.”

“This feels more like fear. I know it’s irrational, but this feels very much like fear.”

“Are you afraid you’ll never get well again.”

“Nnnoo…….I know I can do that – I’ve gotten through worse before. It’s just….it feels almost as if it’s coming from an old place – a younger me, if that makes sense.”

“It does actually. Whenever we are hurt or vulnerable, we often respond from a wounded part of ourselves, and that usually relates back to childhood. How old does this make you feel?”

“Nine!” I respond immediately. “I can see me, sitting in the corner of my childhood bedroom. It was my favourite hiding place. I spent hours and hours there as a kid.” Wishing someone would come find, but they never did, I remember to myself.

“Can you talk to her?”

Little Me sits with her knees drawn up tight, arms hugging them to her, eyes wide open and hyper-alert.

“What is it?” I ask.

No one will want us, her fear says.

The emotion hits me violently. She was told over and over again that she was an unwanted burden. “Unwanted” is the key word. We can handle any other pain than that.

“We have a burden complex,” I tell both her and my therapist.

Both nod, but Little Me’s terror and tension doesn’t ease.

“Go on,” urges my therapist.

“A burden is something, not someone,” I explain. “You are not a burden. You are a child, and by that fact alone, you have certain rights – birthrights – among them the right to have your needs met, the right to be looked after and cared for, and the right to be loved. NOT: You have to earn these rights! NOT: You are unworthy and therefore undeserving! You exist, you are born, those are your rights!”

My therapist nods throughout, and more importantly, I see Little Me is listening, and her shoulders have dropped a bit.

But Mom says…., she begins.

“I know what your Mother tells you: Don’t wear out your welcome. All she means is be polite and stay a reasonable amount of time when visiting your friends. She is not commenting on your likeability.”

Really? What is a reasonable amount of time?

“Discreetly leave before supper is ready unless you are invited.”

“Yes, yes,” the therapist nods.

Little Me considers this. Then why does she rush us off to bed at night as soon as Dad gets home? Isn’t it because we’re a burden and she doesn’t want to remind him?

“NO! It has nothing to do with that! I cannot emphasize this enough! It is something you will understand as an adult, but for now, know that you being sent to bed is your parents’ issue, not yours!”

What about Thor? Won’t he find us a burden and leave us?

“Ahh!” says my therapist warmly.

I feel my throat catch and sigh. “Some things in life are uncertain.” It’s not like I haven’t thought about it. How do I begin to address this? “We have many things that Thor is looking for,” I offer. “Last year, we looked after him. We are patient, loving, and good listeners. These are important to him. He is wounded too, you know. He needs reassurances. Our insecurities will push him away more than anything, especially if we pretend not to have any.”

The truth of this last statement hits me. Little Me loosens her posture and now looks at me quizzically. Confession time.

“One of the things I have done in my life – right or wrong- is to develop a tough exterior. It hasn’t always served us well. Much like our Mother sending us off to bed early, I did it as a form of protection.” I pause to feel the weight of the revelation. “It doesn’t work anymore.”

The silence from within and without encourages me to go on. “Part of my healing process – our healing process (I add for Little’s sake)- is to replace that characteristic with a healthier one.”

What will that look like? Little Me echoes my therapists thoughts.

“Not entirely sure, but I know how it will feel: safe enough for you to come out of the corner and engage with life. You, we, have a lot to share, and we can’t do it when we hide ourselves away.”

I am strangely comforted by this conversation: lighter. “I have my homework cut out for me,” I tell my therapist.

“You do! But this is a good start.”

“Life is full of uncertainties,” I tell Little Me, on our way home. “Some good, some bad; it’s just the way it is.”

Kinda like an adventure?

“Yeah, it kinda is!”