Writing From the Couch — Part 2 of 5

That's me about twelve years ago, wedged between canyon walls while canyoneering.

I look at this photograph very differently now than I did when it was taken.

Back then, I was literally between a rock and a hard place.

Today, that photograph feels like a metaphor for the life I've been living ever since.

On one side is the life I desperately want—the person I still want to be: active, independent, productive, adventurous, dependable, social and useful.

On the other side is the reality of living in a body that repeatedly says no.

I feel wedged between the life I want to live and the body I have to live it in.

The difference is that back then, I could climb my way out.

I used to rock climb. I went canyoneering. I backpacked. I snowboarded. I loved the mountains, adventure, and being outdoors.

This wasn't a bucket-list phase. This was simply who I was.

I was active. Social. Giving. Nurturing. Productive.

I was trustworthy. If I said I would do something, I did it. If I told you I'd be somewhere, I showed up. If someone needed me, I was there whenever I possibly could be.

I was someone people could count on.

And I could count on myself.

That's important for me to say because I've spent years feeling as though I needed to prove something:

I did not choose the couch.

I didn't trade climbing mountains for lying around because lying around sounded easier.

There is a kind of grief in chronic illness that I don't think we talk about enough.

You can grieve someone who is still alive.

Sometimes that someone is you.

This isn't normal nostalgia for being younger. I'm not looking at old photographs wishing I had fewer wrinkles.

I look at these photographs and sometimes think, How was that me?

I miss her.

Actually, that isn't strong enough.

I grieve her. Severely.

I grieve the woman who could make plans without fear. I grieve the woman who could go somewhere simply because she wanted to. I grieve being dependable. I grieve spontaneity, strength and freedom.

I grieve being able to help someone without first assessing whether my body could afford it.

I grieve the years themselves.

People sometimes say some version of, “She's still in there.”

I know they mean it kindly.

But I'm not sure how much of her is.

Eleven years changes a person.

I don't know exactly who I am anymore because so much of how I understood myself was connected to what I could do, how I showed up for people, and how I moved through the world.

Sometimes the woman in those photographs feels almost fictional.

I barely remember what it felt like to be her.

And I would give almost anything to have her life back.

This one hurts.

Yes, my husband takes extraordinary care of me.

That is a blessing.

It is also not the life I wanted for either of us.

Needing someone to do things for you that you desperately want to do yourself does not feel like luxury.

Dependence does not feel like a vacation when independence matters deeply to you.

When someone looks at the help I need and calls my life “easy,” they're sometimes looking directly at one of the things I grieve most and interpreting it as something enviable.

I don't want to watch life happen around me.

I want to participate in it.

There have been times when people have made me feel as though I'm exaggerating. And there have been times when enough doubt from other people made me start doubting myself.

So sometimes I turn that accusation around.

If I were exaggerating all of this, what exactly would I be getting out of it?

I would have given up rock climbing, canyoneering, backpacking, snowboarding, travel, work, friendships, independence, reliability and much of a decade of my life...for what?

To lie on my couch?

None of this is the life I would have chosen.

I don't want attention for being sick.

I want my life back.

Next in Writing From the Couch

Part 3: This Isn't In My Head
What Living With Complex, Invisible Illness Actually Looks Like

[Part 2 Between a Rock and a Hard Place — Grieving the Life—and the Person—I Used to Be]

[Part 3 This Isn't in My Head — What Living With Complex, Invisible Illness Actually Looks Like — Coming Soon]

[Part 4: Recluse Felt Safer Than Unreliable — What Chronic Illness Has Done to My Friendships—and Why I Sometimes Disappear — Coming Soon]

[Part 5: I Found My Purpose. I'm Still Sick. — What Purpose, Faith, Work, and Chronic Illness Look Like When There Isn't a Neat Ending — Coming Soon]