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Periodically, I go through phases of wondering what life would be like if I didn’t have a mental illness, if I didn’t have fibromyalgia, if I fit into some preconceived box of “normal” and “able.” These trains of thought are usually exercises in futility. There is no good answer. At best, thinking this way leads my mind in fruitless circles. At worst, these thoughts torture me with images of what “might have been.”

I am a big fan of speculative fiction (also known as sci-fi/fantasy), which is essentially the genre of “all that might be.” It’s entertaining, creative, and often has a useful perspective on “real life” that might be hard to write about in other genres. One of my favorite authors is Terry Pratchett (although he’s recently been knighted for services to literature, so I guess I should call him “Sir Terry Pratchett”). His books are usually set in “Discworld,” but he recently wrote one set in something very much like the South Pacific. (He is emphatic that it is not the South Pacific, though – perhaps more like an alternate universe version of it.)

The book is called Nation. One of the main characters is a boy named Mau, who was canoeing back from an initiation on the Boys’ Island when a tidal wave sweeps through the entire region. When he returns home, he finds his entire home altered. His family and community have been killed by the tidal wave, and the only other living person on the island is a “ghost girl” (read: white girl) who was shipwrecked on the island. Gradually, other survivors begin to trickle into the island. I don’t want to spoil it too much, but Mau does a lot of growing up. There’s a really excellent section of the book that addresses some of my own questions regarding what would have happened if I hadn’t gotten a disability. In Mau’s case, someone asks Mau if he would rather go back to the way things were before the tidal wave.

“How can I answer you? There is no language. There was a boy called Mau. I see him in my memory, so proud of himself because he was going to be a man. He cried for his family and turned the tears into rage. And if he could, he would say, ‘Did not happen!’ and the wave would roll backward and never have been. But there is another boy, and he is called Mau, too, and his head is on fire with new things. What does he say? He was born in the wave, and he knows the world is round, and he met a ghost girl who is sorry she shot at him. He also called himself the little blue hermit crab, scuttling about the sand in search of a new shell, but now he looks at the sky and knows that no shell will ever be big enough, ever. Will you ask him not to be? Any answer will be the wrong one. All I can be is who I am. But sometimes I hear the boy inside crying for his family.”

If I hadn’t been diagnosed with any disabilities, I would probably have graduated “on time,” have gone to graduate school already, have some sort of career. And yeah, having a disability sucks sometimes. Pain, fatigue, times when I’ve been so down I thought I could never get up again. But those are the kinds of experiences that make you grow. In my general experience, life lessons can be excruciating when you’re learning them – and amazing once you begin to learn from them. I feel more empowered to take my own path in my life, not following the dictates of what other people expect.

And there are times when another tidal wave comes, and knocks you off that course, and destroys things that you hold dear. Those things are unavoidable. If it had not been a disability, something else would have happened to shake my world and my preconceptions apart. And I know that there will be more tidal waves, because that’s part of life.

I am who I am because of the events of my life: the way they have shaped me and the way I shape them. I cannot take them back without taking back parts of myself – and I like myself.

So perhaps asking “what if’s” is the wrong type of question. Though I think that the asking provides an opportunity for compassion to myself. A time to grieve for what I have lost, and to be thankful for what I’ve gained.

I know this post may seem very strange given the recent bout of winter storms. I’m posting it now because, (1) it’s a reminder that spring is coming, and (2) you can think/organize/plan gardening things now, in time for the season. If you’re a gardener, that is.

I come from a gardening background. My mother is a Master Gardener, and our garden is a lush bonanza of color and foliage during the growing months. I’m not nearly as involved as she is. I enjoy getting outside, and there’s something about getting your hands into the earth that I find healing and grounding.

Since I began dealing with chronic pain, gardening has been more of a challenge. I have to be hyper-aware of whether or not I’m reaching too far, kneeling too long, or overexerting unused muscles. I say “hyper-aware” because these are things all people contend with. I’ve known athletes who overdid it planting a tree.

Fortunately, there are a lot of tools and methods out there to make gardening more accessible for anyone with physical limitations.

The PBS website has a short article on several types of tools that are enabling gardening tools. These include fist trowels, ratchet pruners, multi-purpose benches, and pulley-system hanging baskets. (I’d never heard of the last one before.)

There are some other tools that I’d recommend. In my opinion, anyone using a wheelbarrow should use an ergonomic wheelbarrow. Extra cost is definitely offset by ease of use, maneuverability, and lack of doctors’ visits. There are a bunch out there. I don’t know where ours was purchased, as it was some online place  several years ago. (I’d imagine something like this model from Home Depot would do the trick.)

I also find that finding the right gardening gloves has been a challenge for me. My hands tend to be slightly swollen and sometimes tender. Anything that’s too tight or chafes is definitely out. There’s a garden store near my house where I go and try on all the gloves to find the one that’s most comfortable for me.

I used to scoff at ergonomic this and that, but having the right tools really does make a huge difference. Having the right tools applies to more than just gardening, of course. There are tools to make computers more accessible, to help people walk, to help people shower….There are lots out there. If you know of any more good ones – gardening or otherwise – feel free to post them in a comment!

Aimee Mullins and her 12 pairs of legs | Video on TED.com

This is an amazing video about a woman and her 12 pairs of prosthetic legs. She discusses ways that her “disability” has created opportunities and experiences that she never would have had otherwise. There’s a lot of good empowerment their. Plus, some of those legs are really beautiful artwork.

Description from the TED website:

“Athlete, actor and activist Aimee Mullins talks about her prosthetic legs — she’s got a dozen amazing pairs — and the superpowers they grant her: speed, beauty, an extra 6 inches of height … Quite simply, she redefines what the body can be.”

My Etsy Store

A fibro-friendly item from my Etsy store

I've been working on making fibro-friendly jewelry. I'd love it if you checked them out by clicking the image above, or going to www.etsy.com/people/RogueCrafter

About Me

This blog is intended as a place for me to reflect on my own healing journey, in the hopes that others may also gain insight from my experiences. I've "borrowed" a line from Robert Frost's poem, The Road Not Taken:

'Two roads diverged in a wood, and I
I took the one less traveled by,
And that has made all the difference.'

I think the most important thing for me now is that I feel empowered to be a force for positive change in my life. And that, my friends, has made all the difference.

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