A widow & a blind girl walk into a bar

The intersection of grief & disability

“How long has it been?” I asked.

My friend Elizabeth picked me up for lunch yesterday, and we ended up at a bar/taco restaurant downtown. E and I first met more than a dozen years ago when we were both corporate slaves, and then both left about the same time to start our own entrepreneurial endeavors.

Although we only touch base a few times a year, we’re close. I admire her vulnerability, and I think she admires my courage — a mutual respect that turns out to be an excellent foundation for a close friendship.

“Seven years,” she said, her eyes sad.

E had just finished telling me that May through July were bad months for her as a widow. Both of her and her first husband’s birthdays were in May; he had been diagnosed with soft tissue sarcoma in June. A couple of years later, he died in July. They were both in their mid-30s at the time, high school sweethearts.

That’s a long time to struggle every year, I thought to myself. Your whole summer!

But I also knew that grief is a capricious and demanding beast. As hard as we might try, we just can’t keep it corralled, at least not for long.

E has always been very open about her grief. Anyone who was friends with her on Facebook during the years she first lost Mike saw her struggle very publicly. I’ll admit I was sometimes uncomfortable watching her flounder and wail so openly. But more often, it made me admire her ability to be messy and open and ask for what she needed.

And in the process, I became more messy, open and able to ask for what I needed. For that, I’ll always be grateful.

As we discussed her grief and how she has processed it, I couldn’t help but notice how much of her experience as a widow ran parallel to my experience with my disability.

Losing my vision has been an exercise in grief, which at first, I didn’t see it for what it was. Yes, I grieved over my lost ability to do the things I’d always loved — road trips, reading paper books, riding my mountain bike, stargazing and a thousand other things.

But it’s also been a loss of my fundamental self. At one point, I remember asking my husband, “If I’m now blind, who is that person? How does she act, think, talk? What does she spend her days doing?” I remember thinking, I will have to rebuild myself from the ground up.

I also lost a future I thought was certain — solo backpacking, seeing my kids get married, and god knows what else. Poof. Gone. And nothing to replace it with.

Even her comment about it being May and how she could feel the rising sadness and anxiety in her body made me think — I was diagnosed with RP in May. Just yesterday, Facebook Memories showed me the post from 2017 where I asked my friends if anyone could recommend a good optometrist.

Did the subconscious anniversary have anything to do with my mini-breakdown a few weeks before? It certainly wasn’t out of the question.

The more E and I talked, the more I marveled at how our separate experiences of widowhood and disability were connected in both good and bad ways:

• Feeling invisible to the world, at least after an initial flurry of support.
• Feeling like a burden to others.
• Sensing that others built “bubbles” around themselves so that our losses would not somehow “rub off” on them.
• Deeply grateful that we had layers of friends and family who supported us — we knew first hand not everyone did.
• Feelings of obligation to help others with similar experiences.
• Feelings of anger and resentment (the target of which shifted regularly).
• Feelings of profound loss at both our sense of self and futures that we would never have.
• Feelings of tremendous growth into more compassionate, wise, and brave human beings.

E was also very clear that she never wanted to compare her grief with someone else’s — my vision loss was not something to hold up against the loss of her husband. One was not bigger or smaller, more or less painful.

In fact, comparing any kind of grief — losing a best friend/brother/parent/etc., your job, your marriage, even your pet — was not helpful. All those losses were valid and important and worth recognizing and grieving. And they all came with varying degrees of the burdens (and blessings) I listed above.

At one point, I became overwhelmed, as I considered all the loss we have in this world and how little we’re willing to share it. We don’t want to become invisible, angry, or a hardship for others to manage.

But oh, what a missed opportunity!

Aren’t we all already lonely enough? Disconnected, bitter, sad, scared, shamed, alone enough?

Later, thinking about my conversation with E, I remembered a workshop I participated in last summer on grief. There were 5–6 women gathered on the beach at Lake Michigan. We each grieved something different: lost marriages, mothers, careers. I was there purportedly to grieve my vision loss, but if I’m being honest, I was mostly curious about what a grief ceremony looked like.

I thought I’d already done most of my grieving.

We sat in a circle, and the facilitator laid out a few items — a driftwood stick, a piece of charcoal, a Petoskey stone, and a handful of dried leaves — each representing sadness, anger, grief, and emptiness.

After a brief meditation/prayer, she invited us to pick up an item and, holding it, say what we had to say.

We were all so controlled and quiet with our grief at first. We took turns, sniffing a little while we dabbed at our eyes and stared at the ground while quietly saying a few words about our struggles. We were careful not to take up too much time.

But then the ceremony took a turn.

Bit by bit — and then very suddenly — our emotions grew enormous and deafening. We wailed and sobbed. And most surprising to me was the anger, the pure rage, that reared up and engulfed us all.

Everyone wanted a turn with the charcoal.

We were all furious, it turned out. We had no idea how angry we were until allowed to release it. We were mad at our parents, partners, children, and especially irate at society (the Roe v. Wade leak had just become public). We were outraged at men for letting it get this way, for not doing more to help us.

And then, just as suddenly, it was over. We sighed, smiled at each other and turned our faces toward the sky while the facilitator recited a closing prayer.

Afterward, we decided to strip down to our underwear and bras (it was a mostly private beach) and wade into Lake Michigan. Standing in the water, we chatted about the most mundane things: upcoming vacations, the weather, where we’d bought that cute beach towel.

Grief and anger. Tied together, often blindly. But then released to do their work.

I’ve encouraged E to do more of grief work publicly, but we all come to our life purposes in different ways and at different times. Maybe I should do more of this work — with veterans (ESPECIALLY women veterans) could benefit from more safe spaces to express their grief and rage.

For now, I’ll only try and do for you what E has done for me and hope that my expressions of grief somehow inspires or emboldens you to express your own grief, however that might be.

Do it with someone you love and trust or quietly after watching a sad movie (some of us need outside help to release our emotions). If your grief is particularly heavy, please stop suffering alone and get the help of a professional counselor. If not for yourself, do it for the rest of us (all of us!) who still have work to do around our grief.

Originally published at jillhintonwolfe.substack.com.