Meaning is a form of strength. It has the power to transform experience, to open the most difficult of work to the dimension of joy and even gratitude. Meaning is the language of the soul. ~ Rachel Naomi Remen
It is February, and sunny. I had forgotten how early spring comes in Portland–right now Madison is deep in the dead of winter, but here in Portland crocuses have been blooming and the cherry trees are budding, and when I walk up the hill Mount Hood glows white on the horizon.
My mood rises and falls throughout each day and week, because in the background is always my disease. I am getting used to wearing glasses instead of contacts, to the distance the thick glass puts between me and the world because of my strong prescription. When I leave home, I always know where the toilets are, and how much time I have before the next meal. I eat only my own food, the same food at every meal, brown rice, kale, tofu, and red lentils. I have somewhat gotten used to all this. It has become my new normal.
Today I am meeting with a minister about my disease. I have never talked to a minister before. I have been going to the Unitarian church downtown, which has been my church since my early twenties. I did not grow up religious, and in that first service, when the minister invited us to pray together, I glanced nervously around. I only ever prayed alone. To my surprise, I now saw this crowd of full-grown adults closing eyes, clasping hands, bowing heads. It was so intimate and vulnerable that it moved me to tears. Traveling home to Portland from Madison, I would always visit the church when I could. In Madison last year before our move, I fantasized that Ron and I would go together, but he plays frisbee Sunday mornings, so I come here alone.
After the service, the minister leads me down a cramped hallway to her little office. We settle in and she asks about my story, and as I describe my disease, I find myself couching my tale in a lot of disclaimers. She has undoubtedly heard far worse stories than mine. I feel self conscious. Is my struggle even worth her time?
I know my illness isn’t the worst thing in the world, I say. I mean, it’s not cancer. Ever since I got diagnosed, I’ve been thankful for that–that at least it’s not cancer. I’ve been close to people with much worse illnesses than mine. My best friend died of cystic fibrosis when we were in college. My dad died of stomach cancer two years ago. Two of my best friends from my Peace Corps village have died of what I think was probably AIDS.
I take a breath. I don’t mention the way each of these deaths is like a heavy stone that I carry around with me. Collecting them all into one conversation, I am reminded of their weight.
So, I persist, I know I’m really fortunate. It’s like, what right do I have to cry over losing things that so many people never had in the first place? The ability to travel, to eat whatever I want, to live as a healthy person, to have children… I know these are privileges not everyone has.
She is gently smiling. She leans forward and speaks one simple, portentous word that fills the little room:
And, I say. Her knowing smile, and hearing this single word from her, feel like pressing on a door I thought was locked and finding it swing open easily. This past year, my shame over my sadness has often just made me sadder. But she is giving me permission to grieve what I have lost, even while understanding my good fortune in having it to lose.
And, I say again. And… I’m just so frustrated. This isn’t what I’m supposed to be doing with my life!
I’ve been through hard things before, I say, and rattle off another list. My parents divorced when I was seven. My dad was an alcoholic. My best friend died. My dad died. But in some ways, this is the hardest thing I’ve ever been through.
As I listen to myself, I am bewildered at this thought. I have been through misfortune before–look at my list. All my life, I’ve been somewhat proud of my general resilience. But the truth is, until now, I have really only been sideswiped by misfortune. I have never been its direct target. I hadn’t realized this till now: I have never been the one with the disease.
Have you heard of Maslow’s hierarchy of needs? she asks.
I shake my head.
She waves a hand: no matter. It’s the concept that our needs form a pyramid, with the most fundamental needs at the base. Food, clothing, shelter, safety. The next level of needs are social–love, belonging, support. Above that are spiritual needs. This last year, your foundation was pulled out from under you. You lost your sense of basic safety.
She is absolutely right. It feels as though something came and knocked my legs out from under me at the knees.
I tell her about my relationship with food. I’ve lost my sense of safety with food, I say. My ability to rely on food. It has often felt as though food is my enemy. Maybe permanently. I never know what will make me sick. I never really feel safe when I eat, anymore, except my one meal that I eat now.
This is the first time, I say with heaviness, that I have ever felt disconnected from God. I feel abandoned by God.
I look at her and let her see the pain this is causing me.
She asks: Can you tell me about your relationship with God?
I have always sensed the presence of a Great Something, I tell her. A presence watching over me, guiding me.
She is smiling. I know there is no right answer to her question in our church.
It’s hard to make sense of my disease, I say. It’s all just such a big waste of my time. There’s always this question under everything I do: Why? Why me?
And have you gotten an answer? she asks.
I pause. I guess I haven’t really been listening for an answer, I say, feeling a bit dumb when I say it. Looking at the patterns in my life, it’s as if everything I do serves to distract me from listening. When well, I scramble down my list of tasks, eagerly finishing one after another. When sick, I escape my sadness by watching TV.
She suggests making space for just listening. Just being with whatever feelings or thoughts arise. I nod earnestly. Yes. This is what I need.
We make a plan: I will carve out a designated half hour, twice a week, at a set time on Tuesdays and Thursdays. That is the only way I can imagine actually doing this, by designating a specific time for it. Otherwise, the intention will just get swallowed by my lists of tasks.
It’s funny, I say. I think of myself as someone who knows and expresses what I feel. But in some ways, I think I also do run away from what I feel.
You’re naturally intuitive, she agrees.
Yes. When I am in touch with my intuition, I do trust it. I just don’t always make the space for it. I’m always going, going, going. But I’m afraid this illness will make me lose my connection to God. With my illness, it’s hard to believe in God at all. But I don’t want to become an atheist.
I hope this last comment hasn’t offended her. Many Unitarians are atheists–for all I know, she is an atheist herself.
She doesn’t seem offended. You’re a meaning maker, she says sagely. When your life takes a big turn, it’s important for you to find meaning in what’s happening.
Our session is coming to a close. Would you like me to say a prayer? she asks.
I would love that, I say.
We lean in toward each other, creating a little circle of two. Later, I will not remember the words she says, but I will remember the feeling of her praying for me. The sense of her deep attention, directed at me. Her attentiveness.