Sunday, 30 December 2012


I wonder if everyone ultimately feels alone in this world when they contemplate it.  Loneliness haunts me always, but I wonder if it isn't something especially tragic about my life but is just a neutral fact about existence as a being. It is impossible to share all of the complexity of the lives that happen in each of our heads. Constant, extensive narratives and threads of thought that are so vast and full of minutiae that they eventually form something too enormous to share in the discrete smallness of words. It's just not possible to escape that, right? The best we can do is make some peace with it, if we did not have that already, and find people who seem to intuit enough of our essences to make us feel close enough to merged to feel content.

Still the loneliness of what I experience and my inability to really explain what I live, the lack of control I have over vital parts of my life, make me feel sometimes lately that I wish I could find peace by moving inside to my own safe expanse, shedding the inconvenience and maintenance of a body; the disappointment and disappointing that come with being me. If only that place, not actually separate from my body, were as safe as I dream.

I have few thoughts that haven't been had by so many, many other people. My urge to share despite how plain I am both tortures me with a strange guilt, and makes me feel some connection to a common journey.

Thursday, 1 November 2012


Friend in the night.

If you could guide me, protect me, follow me into my dreams.

Friday, 26 October 2012


It's difficult to start when the words don't flow freely.  Sometimes there are months between those moments.

Tuesday, 25 September 2012

Goodbye To You

I don't like autumn. I don't like watching the vibrancy of summer wither away, and the sunlight become slanted, weak, always positioning itself in an inconvenient place in the sky.  I don't like having the taste of summer still on my tongue and the tips of my fingers, the memory of owls and thick air and wildflowers still so recent and hard to let go of.  I prefer to be deeply entrenched in winter, adjusted to and resigned to our current fate and able to start anticipating the coming tendrils of spring instead of aching for what's just behind.

The last of the Black-Eyed Susans.

There will be other summers.

Saturday, 15 September 2012

The Light

If asked for the most important lesson I've learned about living well with a chronic illness, I would say this: Think of a meaningful life goal and chip away at it to matter how slowly you have to do it, and no matter how unusually you have to go about it.  Don't wait until you are "better" to start.  Trust me when I say that hoping and striving for wellness and weaving a path towards a goal, based on what you can do now, can coexist.  Nothing has enriched my life more deeply or persistently than learning that.

Metalsmithing is my absolute passion.  I don't work 40 hours per week.  I wish I could travel to seminars and workshops but I can't.  I wouldn't be able to pay all of our bills with my business alone.  I wish I could apprentice with a master goldsmith or have a booth at arts festivals, and right now it's not feasible.  I work from my home studio on a schedule that my body mostly dictates, learning new skills in fits and starts over the years, sometimes closing my shop for a few weeks when I need to.

But this oasis of productivity, of striving for something, accomplishing something, having a goal and a purpose and a payoff, even in small increments, makes the difference between feeling completely imprisoned by circumstances, and feeling like I hold some control over my own fate and future and joy.  Every minute I spend with metal yielding under my hands is a minute of satisfaction, the ripples of which spread out across the rest of my existence.

I say this: find your metalsmithing.  Even if it's writing a sentence per week of a novel or children's book, or, if you're trapped at home, challenging yourself to take photos of your usual surroundings in a way that captures them unusually.  String beads; teach yourself a programming language in as much time as you need to take; start a blog and write movie reviews.  I don't care.  Whatever you dream of.  Whatever winding road you need to take.  However slowly.

We won't all "triumph."  It's just not a promise the world makes to us.  But most of us can at least build, find, steal, pockets of accomplishment, satisfaction and control, and I fervently hope that for most us they will also be enough to make pushing on worthwhile. 

Thursday, 6 September 2012

In Out

Last year one of the boys who bullied me as a child killed himself.  I was not in touch with him but found out about his death when mutual friends posted about it on Facebook.  I didn't rejoice in any way; I found it strange and surreal to realize that someone I'd assumed was confident and comfortable with their place in life was, in fact, suffering seriously in some way.  It perhaps gave credence to the notion that those who bully are often the most unhappy themselves (although, there were an intervening 20 years between his being my classmate, and his death, so perhaps he wasn't unhappy as a child).

The people who bullied me would probably struggle to remember me or even recognize my name - this I assume, as I haven't spoken to them since - but I can remember the names and faces of every single one of them.  I was only 10 but consider that year to have altered the course of my life permanently.  It convinced me at a very young age that there was something not ok about me.

Still, for years I wondered why so few people wanted to be friends with me, why nobody sought me out to befriend me.  I only realized later that it was because, despite how rich my inner life felt to me, I must have seemed blank from the outside.

Saturday, 1 September 2012

"How do atheists know right from wrong?"

"How do atheists know right from wrong?" is a question sometimes asked by theists.  

In many ways it is the fact that there isn't a god that guides me morally.  Our shared mortality, the fact that we are all in this startlingly brief, mysterious, profoundly painful, incredibly complex and utterly beautiful existence together, and that this is the only chance that each of us, each a completely unique being and consciousness, will ever have to exist, is to me what makes life precious and worthy of protecting.  For me, understanding the brevity and uniqueness of each life makes it impossible for me not to believe that treating each one carefully is as inherently right as is possible.

Compassion is my religion, not because it has been commanded of me but because I've suffered and I've felt its stain on the precious gem of what will be my brief time here.  And if I ache for the chance for this fleeting, singular existence of mine to be as good, as rich and possible to savor as it can be, then it is ultimate human virtuousness to allow the same for other people.  If acceptance and love is the most singularly craved experience of humanity, then learning to give it is one of the most meaningful missions one can accept.

Just as many serious theists feel that their journey to live by their beliefs is lifelong work, it is a lifelong journey to learn to fully follow and live by the lead of compassion.  It can be paradoxically difficult to figure out how to honor the equally valid hopes of oneself and the ones around them.  I have failed, I do fail, I will fail, sometimes and many times - though I hope less as I grow.  But despite that, and the fact that not all humans are kind or good, or wish kindness in return, I find it hard to imagine that when the end is reached by any person who strived to let an utter awe and appreciation of both the despair and gorgeousness of life guide their way, that they will feel regret.

That is how I know right from wrong, and why, if you are feel differently, I love you no less.

Thursday, 23 August 2012


My sister-in-law fell in love with the necklace a model was wearing, but neither of us, despite extensive googling, could find out where on earth to buy it (Note to Tobi: Please give us details about the accessories your models are wearing! :).  So my SIL asked me to create one that captured the style of the original:

The photo on the model was too small for me to use to see the exact details of the necklace but I thought I could see it well enough to create a piece that at least emulated the draping, antiqued style.  Below is my version.  My SIL hasn't tried it on yet but she's a beautiful girl and if it will flatter anyone, it will flatter her.

If I recall, it's about 24 inches in length.  It's made of antiqued brass and took several painful hours of working with jump rings and tiny chain to complete :)

Wednesday, 22 August 2012


When I was a teenager, it was easy to be whomever you wanted to be on the internet.  There was no Facebook, no Twitter and digital cameras were rare: we were who we said we were, not who we could prove we were.  Who I was, was an Irish gay boy named Travis.

If I told you that I spent five or eight or sometimes fourteen hours a day for four or five years wearing that mask online, it would sound as though I spent thousands of hours creating elaborate lies.  But I didn't.  The mundane details of my life were real, were mine, Ellen's.  Those details were the centers of the conversations I had as Travis with my online friends - school or parental problems, the music I listened to, the celebrities I had crushes on, the vacations I went on, the things I saw each day.  Those were the facts of his life, and mine, Ellen's.  What was made up was only the shroud, the veil, the cloak I covered myself in; the very basic facts of my life like my sex, my name, and my place of birth.

Why did covering myself in that cloak work so well?  Why did simply putting that mask on but continuing to own the real details of my life turn me into someone so different?  So free, funny, loose, easy, popular, sought after?  Why did it turn me into a leader, a mentor?

I am not now nor was I then confused about my gender identity.  Wearing the shroud of a gay boy wasn't a way for me to try on the gender that I felt was really me; rather, the shroud itself looked so different from who I really was that it allowed me to escape from the terrible awkwardness and agony of being the teenaged self I was forced to live in between logging on.

The first time I signed into a chatroom I felt literal, physical euphoria.  Even now I can't explain why, fully.  Was it an immediate understanding that I, an adolescent overwhelmingly defined by social awkwardness and fear, could suddenly escape into a world where touching minds with other human beings was possible?  I don't know, but the addiction to whatever high it gave me was instant and gripping.

I felt intensely guilty about what I did, of course.  I was conflicted between knowing I should stop, and being desperately sad about giving up the incredible relief I found in my online freedom and friendships, as they pulled me through my high school years.

I was part of, and in some ways the center of, a cohort of early-adapter chat addicts associated with a particular teen website and I had many lovely friends, almost all girls.  I was especially close with one in particular.  We talked very often and I remember our chats as being almost constantly fun and funny, light hearted, silly, supportive and effortlessly open.  I knew she would be the one who caught me one day because she was bright and brilliant and missed nothing.  Finally she did; my first semester in college, I sloppily used the same server to host images that both my real and fake personas used on a message board, something nobody else would have noticed, but that she did, and she confronted me, and heart pounding and tears streaming I told her the truth.

Yes, there was some confusion on her part, a sense of betrayal I'm sure.  And yet... she was only, how old then? 17? 18?  Still so young herself.  But without my needing to explain, she almost instantly understood that the shroud I'd worn had only been a shroud, and that the same person lived beneath it.  She understood without my having to tell her the urge to escape from the agony of growing up.  She forgave me, with merciful compassion.  And so did many of the other girls to whom I soon "came out" as my real self.

What I did was perhaps more common than we'd all like to think, but (even though I wasn't profiting from it, or receiving media attention, or purporting to represent a nation!) what I did was still wrong, was deception and a betrayal of people I'd truly come to care about.  Yet, it was something that helped pull me through years full of almost unbearable private suffering and isolation.  So how should I feel about what I did?

Partly, I know, my virtual socializing was only a facade that allowed me to ignore the fact that I wasn't socializing "IRL."  But partly it gave me real human interaction.  I know this because it eased a real ache in my heart.  I know this because every name on the internet with whom I connected had a real human being behind it.  I know it because last year when for the first time I finally put my arms around the girl with whom I have spoken, as Ellen, more days than not for the decade+ since Travis faded away, she was flesh and blood and laughter and wisdom.

Our friendship never quite re-captured the carefree lightheartedness that it had back then; partly because of lingering shame on my part, but mostly, I think, because back in my own skin I still struggle every day to push off the weights of awkwardness.  Yet, she remains one of my best friends; one of the people whose lives I love to follow and whom I respect most; whose ear and voice I'd most miss if it were gone.  She is inextricably a part of my life, as are several of the other girls who re-embraced me as me and with whom I still keep in touch.  And it was Travis who led me to them, just as he helped lead me across the churning, confusing waters that try to drown us as we swim towards adulthood.  And for that I will always be thankful to him.  Or... is it to me?

Sunday, 12 August 2012

It's all the same

Re-reading the post I wrote yesterday I realized that everything I said can easily cease to be about disability specifically and instead be applied to life, period. Suffering and joy; the two constantly dueling extremes of human existence about which so much has already been said by so many brilliant and common people alike throughout human history that, on that topic, I can just stop here.

Saturday, 11 August 2012


A paraplegic writer * said, 
"I feel enormous inside.  The tremendous desire and longing I feel inside of me span oceans.  I am absolutely and heartbreakingly in love with life.  But this is not life."

Of all of the many faults I have, the traits about me that I am ashamed of, I am at least grateful for my own enormous capacity to be deeply in love with life.  I find pure joy in such simple things: human relationships and unconditional love; my evil and fascinating cats; my work which saves me; dropping a crumb of donut and watching the ants discover it; lying on my deck and watching the sun gild the leaves of the tree above me, or the deep stillness of space occasionally interrupted by the stunning ingenuity of humans in the form of a satellite, or the stunning vastness of the universe in the form of a shooting star; the beauty of the human form; learning about the insane realities of our physical world; going to the park with my husband last evening after a rain storm and simply letting the mist fold us into itself.

I feel such incredible satisfaction from the journey of life, an almost childlike fascination with the acts of/facts of existing, and the growing and re-evaulating and making sense of myself.  The tragedy of chronic illness, for me, is when I feel so sick for so long that my ability to enjoy these things I love so much is taken away from me.  I see them around me, I ache for them, but I can't have them.

I cannot find words to explain how completely my health has become entangled with who I am. Even if I tried, I myself would be unable to identify every thread, every nook of myself where it has settled.  I first became sick as a 13 year old; every single formative year of my life has been one more year that the constant disruption of the grinding, uncomfortable, distracting behaviors of my body have had the chance to more deeply twist their fingers into my psychology.  If I became completely well tomorrow, it would take years for me to learn to live as a person whose body doesn't require constant vigilance, attention, and accommodation.

At my worst I look into my future and wonder if I, like Clayton, the author I quote above, will also be forced to choose death (before it chooses me!), not because I want to die, not because I lack a miraculous love for life, but because the idea of enduring decades more of how I'm feeling is too much: caged in with only terrible options on every side.

Clayton felt inescapably imprisoned by the conditions his body forced him to live under, and the constant ache for what he wanted but couldn't have - he chose death because those conditions were unacceptable to him to an absolute degree and joy and happiness were not possible for him.

For myself, there are the two equally true parts of my reality.  Frequently I am still amongst the living; this is still life.  I don't live a truly "full" life, no; too many decisions have been made for me by my health and too much of myself is defined by it.  But for me the moments of genuine, euphoric joy and astonishment that I described come frequently amidst the grind of life, thus far at least, and I define my life as a good one, one never boring, constantly interesting, and well worth living.

How does one present that these opposing realities coexist to the world?  How does one authentically represent that Oscar Pistorious is fucking awesome, that triumphing over adversity is a true and genuine urge worth celebrating, without ignoring the grinding shit he might have to deal with in his daily life that he feels pressure not to discuss in interviews, maybe not to even dwell on himself?

I am both an explosively joyful person at heart who wants to triumph, and a person defined by suffering.


I am "fortunate" that in my case, unlike in Clayton's whose disability was permanent and absolute, the degree to which I am disabled waxes and wanes at least to an extent, and with it the level of sad hopelessness that I feel.  Still, because of the lowest lows I sometimes live through, I resonate with his sentiment, and despite that he seemed to find a wry acceptance of his solitary death, I wish that when he died I could have been there to tell him that he was dying with the dignity and autonomy that he - and we all - ultimately deserve.  I wish I, or someone, could've looked into his eyes so that he saw the soul of another human being and knew that there are others of us who also understand that he was caged, and who don't question that his reality did not allow otherwise, despite how we are currently experiencing our own lives.


For now, as if there aren't enough photos of flowers in the world, another something lovely I lingered to photograph today outside a store:

*Before you follow the link, know that the site contains a book written by a paraplegic whose disability caused unacceptable torture for him, and thus his words, though philosophical, coherent, interesting and deeply thoughtful, are also tragic, uncommonly intense and unflinchingly graphic, reflect the intolerability of his suffering, an absolute conviction that a happy life is impossible as a disabled person, and to some people are probably offensive.  The last few chapters also follow his journey to and through the final moments of, his own suicide.

Tuesday, 7 August 2012

To My Imaginary Friends

So it'll be just you and me,
my friends.
You'll be there until my end.
Beyond the moments when I am taken from
the ones I love, the ones who've promised I won't die alone;
beyond the moment when my eyes close and I am, for the final time,
pressed out of this world and into my own.
It will be you there with me, inside my fading universe.

I wonder if we'll die together, old and gray,
if our eyes will meet for the first time,
recognizing and acknowledging.
Me, your Maker, and you, the beautiful,
complete creatures who have kept me company all my life.
Will we grip hands as we wait?
Or will you smile, laugh - oblivious,
dancing on as though you won't end,
like you always have,
letting me rest in the peace and purity of the world you live in.
Living like I've found some way to send you outside of me
where you'll spin, unending.

Floating Opals

A few weeks ago a customer of mine whom I know personally gave me a necklace to repair that had been her mother's, and before that her grandmother's. It was a small glass globe containing what she called pearls but which I knew right away were raw opals, suspended in liquid. It had lost its silver cap and I do not know what the original looked like.

I had never seen this particular type of pedant but I was confident that it would be fairly straightforward to create a new cap for it with some research. My single favorite thing about the internet is that it gives access to information and to experts to so many people who would otherwise have a very hard time connecting with these resources. I was able to quickly discover that floating opal pendants were invented in the early 1900s, get any idea of what antique caps looked like, and find a lovely Etsyer who sells floating opals and was able to give me advice on what epoxies she finds are best for securing caps to the opals.

Here are prototype caps that I made while working on settling dimensions and design.

After making a template that fit the cap, I made the final one in sterling silver.  Here it is, with its components waiting to be soldered together, and then all soldered together.

What was left of the original cap was secured with a thin bit of steel wire, and I wanted to do the same; should the epoxy ever fail in the future I wanted a back-up that would at least keep the globe itself from being lost.

I epoxied the cap to the globe, wrapping the wire around the neck of the globe for extra security.  Here is the finished product.  Were I to do it again, I'd fit the leaves of the cap more closely together so that the stem of the globe was not at all visible from the outside, but I'm satisfied with how my modern version of the cap calls to mind the style of antique floating opal pendants.

My customer was really happy with the final product, which made me very happy in return because I knew how much sentimental and nostalgic value the piece had to her. I love this kind of challenge!!

Monday, 6 August 2012

In the begining

I wrote to my teacher for 10 years.  For 10 years he was my living, breathing journal; as reliably mute as a book.

It's been 10 years now. You've gotten to watch me grow up, really. All these letters over the years. Some distant, some sincere, some fully open others tensely restrained, some hasty, stupid, full of badly disguised youthful manipulation, or thrilled release. Always I understand the magic of having you to write to; someone who I imagine cradles tenderly, takes care of those delicate parts of me whatever they are... forgives me for my stupidity. Not ever knowing how real that illusion is but finding comfort in it nonetheless.

I got my first journal as a birthday gift when I was seven.  Bound with purple cloth and a painting on the front of an orange cat, it came packaged with a matching purple mechanical pencil (and portended a lifelong love of journaling, cats, and the color purple).  Since then, the blank pages in many books have often been, as they have been and are for many people great and small, the singular place where I am truly free to be me. Loneliness and an ache for close friendship were defining colors of my life beginning in middle childhood and continuing for many years and I felt some relief when I emptied myself into those books.

The first time I wrote to him was exhilarating; euphoric.  It was a chance to spill thoughts that were, to me at least, precious - and to spill them, for once, not just to an unblinking page but to someone who I imagined would receive them kindly, thoughtfully, understanding the meaning they had for me. Someone who would cradle them like gentle gems, with the care that I gave them.

He didn't write back.  Not then, and not after many, many other missives I wrote to him, though he read them all.  But like talking to God, hearing back from him was quickly lost as the point.  What mattered was the sense of releasing my thoughts into benevolent hands in times of intense loneliness, desperation, profound joy; the sense of another soul to share my heart with.  Years went by between my hearing from him.  On rare occasions something clicked, something caused his own demons to allow him to reach back, and brief interludes of communication would follow; periods of deep and obsessive confusion for me as I tried to reconcile the fantastical being who existed in my head with the reality of an actual human being.  I was so young; too young to understand how young I was - a situation so many, many other growing women find themselves in as they struggle to understand themselves and the world.

My strange friendship (was it that?) with him defined those years in many ways; tainted the backdrop of my life with a particular color that stayed strong and true.  But the last time we spoke was a hammer that finally shattered the fantasy that had lived in my head.  The spell that had cloaked me for so, so long, making me feel warm and protected, connected and relieved, was broken so quickly and completely that it surprised me.  And that spell I know was only an illusion, but its cathartic powers had been real and without it a great emptiness was left behind.

I will always feel gratitude for his allowing the "magic of having someone to write to" to be an oasis for me for so long.  I do miss what the illusion gave me.  The sense of a friend, an ear, a safe, compassionate home for my thoughts.  I missed the feeling of having a place to go during my loneliest and happiest moments; during the darkest hours of night when my heart writhed for connection and my fingers groped in the blackness to feel the touch of the soul of another person.  I missed the midnight hours spent with the glow of the computer screen on my face and the hum of the street sweeper in the parking lot across the lamp-lit river of road outside my window while my thoughts flowed quickly and freely in a way they didn't anywhere, or with anyone, else.  I missed sharing the vast expanse of the universe inside me in all its flaws and disappointments, its complex and stunning beauty.

I have not written since then.  But now, I want to come out of myself.  Into the real world this time, here.  I want to reach my fingers out and feel others reaching back. I want to let strands of my universe twist out from me and be given glimpses of others in return.  This is my journey, your journey, our journey.  Part of the lifelong conversation that makes my life endlessly new and rich.