Dance with the Unknown

by winteryder

She’s fracturing at the edges, like fragile shore ice. Too many years of lacking the basics: sustainable shelter, clean and accessible water, pain management, human network of caring people in her EVERYDAY life… it’s taken a brutal toll.

We still don’t have access to running water in the new house. The system hasn’t properly functioned since we moved in, and it’s now December. We’ve lived here for nearly three months. I drive her every day to Planet Fitness to shower, racking up 250 – 300 miles a week on my car. Between hauling water, schlepping clothes to the laundromat, making time to cook our food and then haul more water to wash the dishes… I’m utterly exhausted.

She’s broken. Lupus takes a horrible toll on the human body, especially in an unforgiving climate like Fairbanks, AK. Her joints are perpetually swollen, painful, hot to the touch. She’s got a blistering, peeling rash all over her upper body (and it’s exacerbated by the lack of ability to take a shower in the mornings, to rinse off from the night’s miserable sweat-fest). Her body doesn’t regulate temperature properly, she can’t maintain neutral: she’s either full on pouring sweat or freezing cold and shivering.

Her mind is foggy with pain, with the stress of trying to live between two worlds: a demanding high school world where very, very few people have any idea of her living conditions… and the reality of her home life.

She’s experienced more loss in the past three years than anyone should ever have to. Loss of home, of safety, of shelter, of clean water, of expectation of available food in the fridge on any given day, of financial security, of love, of family. She’s lost her best friend, the only one who was her constant companion, her anchor, her rock. Daisy was her life, and she cradled her in her arms while she took her last breath. She felt her heart stop beating.

I cried as I drove to work today- angry, dark, horrible tears. It’s impossible to feel adequate, to feel sufficient, when I cannot even provide for my child’s basic human needs. She asked me a few weeks ago if I thought that maybe she should talk to a counselor, to get some mental health support. She’s deeply, darkly depressed and is hardly able to function when she’s at home. I didn’t know what to say.

The actuality of it is that until we solve the very real, very third world problems that are CAUSING the sorrow, the stress, the depression… talking to a counselor just addresses the symptoms. She doesn’t have little baby first world “problems”, she has some enormous hurdles to face every single day. Maybe talking about it will offer her some validation, some reassurance that she deserves to be safe, to be warm, to have access to water and a shower in her own home, to not worry about whether or not her mother can do enough to make money sufficient to maintain the little home we have.

I chose to contact a grief counselor. Strange, maybe. Seems totally logical to me: she’s grieving the loss of too many things, too soon, too much, too close together. She’s losing her way. She doesn’t need someone mouthing platitudes and telling her to suck it up or rely on a higher power and just “believe”. She needs love, reassurance, comfort, stability, safety and some freaking hope for a better future.

Maybe I’m grieving, too. Well, yeah. I definitely am. I have different ways of dealing with it because, unlike my little girl, I can lift heavy weights until I cannot move. It helps. So does talking with a friend, from time to time, when I can manage to make that happen.

She wrote me a letter today, a long one. It’s a cry for help. I held it in my hands, shaking. I can’t do enough to hold together the broken pieces of my baby girl. I’ve never felt so isolated, so goddamn ALONE in all my life.

If you’re looking for an end to this story, we haven’t written one yet. It’s still today.




Good happened. I arrived home today to find my little house in total uproar. The entire water system sat in the driveway, oozing the toxic slime that had caused the horrible smell and sick debris to drip out of the faucets.

My daughter’s father completely overhauled the plumbing, cleaned up the electrical nightmare, capped the open sewer pipe under the sink cabinet. He installed a new water heater and hooked it up. 

At 10:00 pm, for the first time since November 2013, my daughter and I have clean running water in our own home. 

Sometimes, it is darkest just before dawn. Sometimes, dawn does not come for many years. Decades, even.

For those who know- there is an entire book of unspoken words between the lines written here. 

All these things that come and go

Are handled best by hope

That through storm and stillness, somehow

The better spirit leads

And from this

Though we cannot know

There is deposit for Good.