Journey

I’ve not posted lately, because I haven’t had anything to say.

Maybe it’s more accurate that I have too much to say.

I don’t know.

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I took this photo with my phone through the windshield of our car when my husband drove to another state to see a neurologist. The headaches have become very bad. Very debilitating. A migraine every day.  For months.  The evening was beautiful, and I tend to quiet my buzzy anxiety thoughts with looking for moments. Often we drive during full daylight, and the tinting on the windows makes everything interesting a rather odd green tint. The windshield is spattered with unfortunate bugs, so I don’t often look straight ahead. But this evening had been handing me spectacular sky, and I decided to look straight ahead to this tree coming towards us.

I can’t say it a prophetic moment in any real sense. It’s just, now, a photo that will symbolize for me what it feels like to be rushing into a vastness that I don’t understand.  Wondering.  Looking straight ahead.  Feeling a bit alone.

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I love sky photos.  Dark and light, how was it going to go?

It went like this:

I was tired and overwhelmed, and was met by a lovely nurse practitioner who specializes in migraines.  She practices with a neurologist who specializes in multiple sclerosis.  She ran me through some tests — reflexes, gait, peered into my misbehaving eye, read my long list of allergies and issues, and then went to speak to the neurologist.

He looked at my original brain MRI that speculated that I might have MS.

She came back in and told me I have MS.

She knew exactly which brain lesion makes me walk like a drunk person.

There was a lot of crying.

She said that there were more tests they wanted to do to confirm, and that crying was allowed.

That made me cry more.  And I asked if it was normal to feel grief?  She said yes.  And to feel anger?  Yes, that, too.  It’s all allowed.

It’s very weird to feel relief at bad news, but I don’t think it was the bad news part as much as it was this warm and kind medical professional treating me like a fully complex human being and telling me that I was ALLOWED.

Amazing.  The second photo.  Dark and light.  Light in the darkness, it turns out.

She gave me appointments for two weeks later to have another MRI of my C-spine and a lumbar puncture.  It would take four hours and I was to take a WHOLE Xanax.  I don’t like Xanax, so I rarely take it — when I do, only a half.  Nope.  It was ALLOWED to be a full one.   She also gave me a different medication to help with the headaches.  It’s made an improvement, already.

My husband knows how to fix me.  Take me someplace interesting and let me take photos.  I cry less.

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This is a bridge that people are allowed to jump off  legally!  We watched three of four people parachute down, and it felt appropriate — falling into potential disaster while looking straight ahead — or down, in their cases.  They landed just fine and we walked under the bridge.  We’ve visited it several times, but we’ve never walked beneath before.  It was amazing — the sound of the cars and trucks echoing off of the rock and bouncing back against the metal — this primal pounding and buzzing.  Rather like my unruly emotions.

We walked the rest of the way under the bridge and this is what we saw.

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Beauty.   And I told my husband if we ever conquered the world, we would need to build a castle here.

I went to my appointment for the MRI and the lumbar puncture, and it is confirmed.  I have multiple sclerosis.  I cried when I got the MRI results back — the send them to the patients through a secure portal as the tests are processed — because it showed a lesion on my spine.  Done and done.  My husband, wise man, did what?  He took me to our plot of land where we hope to build a house and we staked out where it would go.  It was windy and dusty and I tripped on rocks and he zipped me into his work sweatshirt and hung tools off of me and let me pound the stakes into the ground as HARD as I could (not very) with a mallet.  And I felt better.

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I confess, this photo is a bit of a cheat.  I didn’t take it that day, but rather on a day when I had another special person with me.  The feeling was the same, however.  This is what I will get to watch happen from my front yard.  With people I love.  It makes me happy.

This is the view I will have from my studio windows WHEN I can get back to working in metal.  It’s all in the when.

I started a course of intravenous steroids two days ago.  I have one more day to go, and then it will be back to see the lovely migraine specialist and to meet my MS specialist.  They will tell me how we are going to make my life better.  I never thought I’d look forward to an appointment like that, but I have wonderful, wonderful friends who have rallied and supported and encouraged me through this process.  It hadn’t occurred to me in recent months, particularly, but probably more like years, that I could expect to feel BETTER.  I have been aiming for not getting worse.

Now I feel like better may happen.

The (Oxymoronic) Blue Bird of Happiness

JVBurnett:

Yes. This exactly. And for so many reasons.

Originally posted on The Bloggess:

A few months ago I mentioned that my friend, Brooke Shaden, came to my house to shoot my portrait.  We climbed down into the nearby swamp and I dressed up in a bunch of thrift store clothes that wouldn’t even zip up over my chest and I only fell into the swamp twice.  And we climbed trees and baffled hikers and laughed, and Victor and Hailey and Maile were there to help and it was amazing.

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It was especially wonderful because I’ve been putting this photo session off for over a year because my anxiety disorder makes me continually postpone trips since I hate to travel and finally Brooke just said, “You’re weird.  I’m coming to you.”  I’m paraphrasing.  She said it much nicer.  But she understood.

She wandered through my house before the shoot and I had to explain my propensity for collecting the empty bird cages that hang all over my house.  They’re old and…

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My Body Still Hates Me.

The last MRI of my brain was in 2006, ordered by an eye specialist to make sure my optic nerve wasn’t misbehaving.  It wasn’t, but there is a lesion in the left side of my brain that they watched do absolutely nothing of interest for a while.  (Thank you, Left Lesion!)

All the misbehaving has mostly been confined to my eye, actual.  That’s been its own adventure for thirteen years.

These migraines are FRUSTRATING me.  Outside of being miserable, I just can’t get back into the creative groove.  Shiny metal is calling to me, and I know if I spend time with my torch, or huddled over my pliers manipulating tiny seams in the required bright light, I will trigger a three day hell-fest.  Even without an active hell-fest, ice-pick stabbing pain in my left eye, I’m nauseated all of the time, and have terrible balance.  My words make sense in my head, but don’t always leave my mouth in a sensical order.

I finally cooperated with my doctor’s suggestion of several months ago to schedule another brain MRI.  Perhaps as a reward, he gave me an increase in dosage of a medication I normally only take at night.  I’m now taking a smaller dosage during the day as well.  I feel better.  My sense of humor is returning, I don’t want to hurl quite so constantly, and my vision is clearer and more stable.  I am feeling a bit more optimistic, and my little bits of metal are exerting more pull.  IDEAS are forming!  My bench is beckoning.  My pliers call.  I spent some time fiddling with some of my personal jewelry pieces and felt like myself again.  Increased meds are good.

Well, when I’m awake.  Which is but a brief window of time in my day due to the benefits of coffee.  That is a side effect I will take after the experiences of the other drugs we tried.

This MRI was scheduled three short days after my doctor ordered it.  It’s such a weird experience to go in for tests like this — being vulnerable with strangers while wearing pajamas.  And paying large chunks of money for the privilege.  Which, I won’t complain about the cost — it’s for my health and I’m fortunate to have access to such care.

I was guided into a big room with chairs along the wall and a wheel chair ramp on the opposite wall with the windows.  Having a window is calming.  I was told to go into a little closet room with two small lockers and a chair, and told to put everything in the locker.  I was handed orange baggy drawstring pants, and the usual awkward hospital gown that has been washed 437 times and is missing a tie, and told to hold the keys, and then sit and wait.  It felt a bit like disrobing in a cross between a high school gym and what I imagine a minimum security prison for ladies might be like.  The door to the closet didn’t fully close, nor did it actually lock.  The door on my locker didn’t shut completely, either, although it locked sort of loosely.  I could still see inside of it, so I buried my bra under my shirt.  Again, weird.  The thoughts that go through one’s mind.  My bra isn’t that important.

When I came out feeling ridiculous, I saw a lovely woman sitting in the row, rearranging her bra, and otherwise fully dressed.  She looked serious.  I did a curtsy for her and asked her if she’d like a fashion show.  She laughed.  She was there for more imaging for her breast cancer.  Always more imaging.  She had forgotten to take off the markers they had stuck to her, which was why she was rummaging in her bra.  We discussed the flappy little non-useful capes they give you for that kind of testing, and wondered why they even bothered.  It was a moment of fashion bonding.  They called her in for another test.

My tech was nice — I live in a small town, and most people here ARE nice.  Before she imprisoned me in the MRI tube, we went over the rundown of my lack of major head injuries, my lack of metal (And for the record, I don’t feel like myself deprived of all of my metal!), and the prior scans that had been done at that very facility.  All normal procedure.

I like to zone out during MRI’s of my brain.  Just leave me in my little zen bubble and I’m good.  She was being very kind, though, and kept me apprised of what clicks and thunks and bangs were going to happen next, and how long they would last.  Halfway through, she cut in on the intercom and said, “Where did you say your previous MRI results were?”

Zen went out the window.

To be clear, I didn’t ACTUALLY try to sit up while still inside the tube, but I had a full body clench and my jaw started to tremble — which happens with me when I’m having to exert (auto-correct likes “extort”) strong self-control.  I thought that might mess up the rest of the scan, so I got it under control.

She piped back in a few moments later to tell me that my actual films no longer existed (?!?), but the reports were still at the office across the state — she’d called them.  Goody.

All of my blood tests that had been ordered at the same time as the MRI came back fine a couple of days later.  The nurse left a message for me.  No word on the MRI.

I called my doctor’s office a few days after that — expressly forbidden given the papers I had to sign to become a patient of that doctor — but really?  You can’t leave someone hanging for a month after a brain MRI.  I haven’t gotten my hand slapped for calling, yet, but then I didn’t talk to him directly.  He had just left a note, “Refer to neurologist.”

I have lesions in the frontal region of my brain.

Dammit.

I don’t think it’s super serious, honestly.  I was told I could choose my neurologist — there were no suggestions.  Not helpful — I have to say.  I don’t know what to look for in a neurologist — it’s kind of not my thing.  Ask me about how to find someone to make a masterwork in metal, and I can probably locate that person for you, but a neurologist?  I panicked and called my eye doctor, who is amazing in all things.  He called my eye surgeon who graciously made recommendations — my eye surgeon is also across the state with my original MRI report.  This is becoming an issue of grand geographical scale for just a few small lesions.

I live in the intermountain west.  Space is plentiful here.  Living in a rural environment has its benefits, but access to medical care is not one of them.

I had a bit of a whine on Facebook, as one does, and a lovely friend who teaches at a top flight university said she would be happy to look at my doctor options and evaluate at them for me.  Bless.  I pulled up options in a three state area and she helped me winnow them down.  I needed someone calm to help with me that, and she validated my concerns about the initial recommendations by pointing out that they weren’t published and had abysmal patient reviews.  She helped me choose, instead, three other options.

Navigating such systems is a chore.  I don’t know why sick people have to do it.  I’m not sure I’m “sick,” necessarily, but I’m depleted and I still want to hurl with some regularity, just with less intensity.

The first option had left the health system that was covered by insurance and moved to a different system.

Dammit.

The second option, in another state, books four months out, but!  BUT!  His wife is a migraine specialist in the same practice, and can see me in May.  And if she feels I need more, since she will have made me A Patient, he can consult much sooner.  This community in the other state?  Also largely rural and with nice people.  The lady who did the scheduling was very kind and patient and has remarkably lovely handwriting.  I know that, because I made that call last Thursday, and this Monday I got my fourteen page intake form from her in the mail.

Next week I see the doctor who ordered the MRI, and I’m hoping that he will not scold me for calling against the rules and will tell me I’m not dying.

I’m not dying.

BUT LESIONS IN MY BRAIN!

It’s okay.  I’ve been to this rodeo before.  Calm is always my friend.

I hope, at minimum, I get the magic answer that will allow me to get back to my metal.  That would be good.

 

Selfies and The Craze of Self-Photography

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JVBurnett:

I was tempted to reblog with a bit of a huffy chastisement towards all of the selfie taking haters out there, but I don’t think it’s necessary. Gentle encouragement may be more in order. There is nothing wrong with taking control of one’s own image. Of expressing sides of oneself that others may not even know exist and being brave enough to share them. Nothing at all. Perhaps the haters should give it a whirl and discover something new about themselves.

Originally posted on Archives Mouse:

A few weeks ago, General Colin L. Powell created an overnight Internet sensation by posting an image of himself, taken in the 1950s.  The image, capturing the young and dapper Powell in black-and-white, was a direct response to the “selfie” taken by Ellen DeGeneres at the 2014 Oscars.  General Powell boldly proclaimed that he “was doing selfies 60 years before you Facebook folks,” and told Ellen to “eat her heart out.”

Colin Powell 60 years ago. Courtesy General Colin L. Powell.

Colin Powell 60 years ago. Courtesy General Colin L. Powell.

Besides General Powell’s Facebook post, Ellen’s selfie drew the attention of President Obama.  The President, appearing on Ellen’s talk show, seemed a bit sore that the star-filled Oscar photo drew more Twitter retweets than his selfie with Danish Prime Minister Helle Thorning-Schmidt, taken at the funeral of Nelson Mandela…

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Getting Back To Work?

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I keep saying I’m going to get back to metal and I haven’t done it yet. The ideas are coming back to the top of my mind. The things I want to make, the anticipation of sitting down and really focusing on the process. I know people are waiting for me to get it back together. They are interested in where I can take my work, and are encouraging — and I am tremendously grateful.

The issue has been my migraines, which are so out of control. I’m plagued by constant nausea and cracked out vision. I haven’t trusted my ability to handle my saw or torch, much less focusing on the detailed nature of fabrication.

Over the past six months I’ve been on a roller coaster of testing out anticonvulsants to see if they would help. They are terrible, terrible drugs for me. I’ve never felt so unwell in my life, and worse, my cognitive function took a major hit — hence no blogging. I’ve been off of them for five weeks and have felt generally better, but still have migraines so intense they bring me to tears, and I’ve stared having double vision and serious balance issues. So. Lucky me, I just had a battery of blood tests, and am having a brain MRI later this week to rule out alarming causes for this. I’m also trying an increase in a medication I already take to see if it mutes my daily afternoon. Hellfest.

Mostly I’ve accepted that this is my new normal and I just need to find a way to work around it when I happen across a good day. I have come to the worrisome point of feeling like I have no purpose In life if I can’t make things. In my heart, I know that is not true! I have excellent friends, and an ideal husband, and I know I am well loved and contribute to their lives. But this one thing…I need to do it for myself. My own satisfaction.

Does anyone else struggle with this? If so. How do you beat it into submission so you can DO? Please comment — I’m open to suggestions.

Thistledew

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I took this photograph of my little ferret Myst’s paw.  She was sleeping and had turned over to stretch, and up popped her little foot.  Too cute to resist.

In 2008, in an artists forum that had come into existence in 2006 and was, really, just a handful or two of people who chatted quite regularly and had become very close.  One day awoman who went by the screen name Thistledew joined our ranks.  New people didn’t often stick around.  I think that the small group of us may have been a tiny bit hard to crack as we’d been talking for two years and had developed strong personal ties, that still, incidentally, exist between us.  So she joined the group rather quietly and showed her paintings.  She was always thoughtful, helpful  and kind.  And a little mysterious.  Watching her painting skill develop rapidly became quite interesting.  Her technical skill improved tremendously, but beneath that she had a very powerful ability to tell stories in her paintings.  They were beautiful, for sure, but there was also HER inside them.  Her struggles, and her joys and her interests.  She stuck around, and she became one of us.  

Things became complicated in her life.  Dramatically.  This group of friends found out that this painter was not only lovely and kind and helpful, but also brave.  She was thrown into a very difficult set of situations that caused her great personal difficulty.  I, at least, worried for her.  She reached the point where she couldn’t paint.  

She saw the photo of my little ferret’s paw one day and asked me if she could paint it.  That she was stuck and felt like this might be a way to get back in the flow.  I, of course, said yes!  I love her, and I love her work, and if it would help her, I am all for it.  So she painted little Myst’s paw and called it “Helping Paws”.  I was delighted.  

 

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I was even MORE delighted when she sold the painting, and used that money to help fund assistance to some members of our group to start our own websites.  She is GENIUS at websites as much as she is at painting.  

So the question you are all probably asking, is why is this important?  Well, Thistledew — this is a letter to you, really.  You helped us all so much.  In ways we can never fully repay.  It was at this time last year that you decided to leave our orbit and pursue a more private life.  ALL of us wish you well.  ALL of us hope that you are now living a peaceful and happy life — fulfilled in a way that you were not, perhaps before.  

We all, I think, also understand your choice to withdraw, and respect that.

But my dear, I hope that you sometimes check in on us.  And I hope that in doing so you discover that you’ve left a positive mark on all of our lives.  We think of you often, and wonder how you are.  I get emails and PM’s — have you heard from ______?  That’s the we….

For the me, I thank you for changing my life in unexpected ways.  Going on that journey with you taught me so much about perseverance in the face of overwhelming circumstance.  It taught me that one can’t judge a situation so easily and still be fair and true.  It taught me a kind of grace.  You showed me tremendous generosity and grace, and I am very grateful to you.  I always will be.  I find myself thinking about you and all you’ve weathered as I go through my own far less dramatic struggles.  I look to you as someone who turned a difficult situation into success.  I know it can be done.

So if you do check in on us now and again — I hope you see this and know that I love you and miss you and wish you all of the happiness in the world.  Your bravery and grace — I hope I have what it takes, too.

Happiness…. 

Contemplation — Life Askew

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I’ve been lost.  I haven’t posted on the blog for a long time, because my health situation has been stupid and maddening and I’ve been unsure if it will ever settle down and let me return to Who I Used to Be. 

It won’t.  

I’m beginning to really own that.  

I have chronic migraines.  

I also have an eye condition called retinal vasculitis in my left eye that I think I’ve mentioned before.  I’ve had the eye problems since 2001, and it has been a very slow progression of complications.  Most recently, the medication I take to control it resulted in the need for cataract surgery.  Not being able to see correctly and clearly has been a HUGE stumbling block in my creative process.  We had some challenges in getting through the surgeries and then my adjustment to having one eye focus properly and the other needing to see through a progressive lens.  People adapt to this all of the time, so I have tried to be patient with the adjustment.  I’ve had excellent care from my eye doctor and optician, and I am fortunate to have the best options available to correct this problem of seeing.

But the migraines.  Those are new.  And they are nearly constant, and they like to lurk in that same eye, so that even though my eye is now functional, the migraines obscure my vision and cause ice pick pain to lance through my skull. They upset my balance, cause me to feel sick to my stomach nearly all of the time, and make my eyes very sensitive to light.  

I stopped blogging because I forgot who I am.  This problem — not being able to see or focus literally, but also figuratively — caused me to doubt my purpose as an artist.  If I can’t see tiny little bits of metal and manipulate them into wonderful bendy pieces of jewelry, then what am I for?  

This process was not helped by the drugs I tried to control the migraines.  I’ve learned an important fact:   I do not function on anti-convulsants.  The words don’t come.  I have the ideas and the feelings and the thoughts, and they stay locked in my mind, because I can’t find a way to express them coherently.  Also then, what am I for?  I’m a verbal person.  I live for ideas.  I couldn’t communicate on those medications.  

I’ve stopped taking the drugs.  I’m back to the “normal” migraines — the pain, the nausea, the bouncing off the walls like a drunk person, but I’m now ME again within the confines of my own mind.  

Which got me to thinking…just how scary it is to lose the ability to follow your passions.  It is, for me, so tied to my identity to make things, and to help others with their own creative processes.  That is what I am.  That is what I do.

So I’m writing this as a reminder to myself to hold on to that self, and to take the moments when my body gives me a reprieve to indulge in a small passion.  Hence the photo of my cat minding his own business amongst his toys.  I like taking spontaneous photos.  He was picturesque.  It was a moment and I claimed it.  And I feel like me a little bit more.

I’ve been so fortunate to not be forgotten in the worlds in which I circulate.   I don’t feel I’ve contributed much of late, as I lost my words for so long.  I lost my sense of place.  But I have wonderful artist friends who have not forgotten me.  I have kept in touch with the metal world and read along with the conversations and squirreled away little lessons I hope to incorporate in my own work.  

My husband has bought me tools!  Wonderful hammers and anvils and a books about metal and gems.  He is the rock in my world — always encouraging me ever so quietly.  Always providing me with a challenge just slightly out of my reach.  It’s exciting, and slightly scary, but he gives me room to make mistakes and find my way without pressure.  I’m very lucky.

I also have wonderful friends who function on an additional level — a highly intellectual level.  They’ve really been my saving grace in so many ways in recent months.  Keeping discussions going that engage my wonder and critical thinking.  My body has not been cooperating, but they have been enriching my mind.  They also challenge me.  Involve me in projects I never would have dreamed of.  I love it.  

So in the end, I suppose that after what has been a long and dark journey for me in the past months…I find myself feeling grateful.  And perhaps even hopeful.  I have a suspicion that the migraines are here to stay.  They will force me to adapt to their schedule, and it is going to change the way I create.  I think I will take my time to joyfully stalk my pets with a camera when the mood strikes.  I will continue to read the occasional manuscript that comes my way and immerse myself in the worlds of another (which is difficult and fulfilling and fabulous).  And when I can see well, I will work in metal.  

I think the reality is that I will not ever be famous, nor will I sell enormous amounts of work.  But that is okay.  I see this as an opportunity to distill down what interests ME.  Not to worry about being commercial.  Not hoping that someone will buy what I’ve made and pandering to that market.  But instead to explore ideas and skills and make things that matter to me.  If those pieces end up speaking to others, then that is wonderful.  And if I sell pieces, that is even better.  But baby steps.  Life has changed for me a great deal.  I need to focus on what is fulfilling for me.  

So with that in mind, I will be experimenting with metal and taking random photos and I hope to be better about posting what I’m working on.  Feedback is always welcome…I just may not follow advice!  I’ll still listen, though.  I’m always interested in how people perceive art and craft.  I learn as much about the person commenting as I do myself in such conversations.  And NO!  I will never understand my camera fully!  The picture above with taken with my iPad.  I’m a winging it kind of photographer, and that is just the way it is!  Metal is different.  That’s discipline, but I need the freedom to be messy in my art somewhere, and it looks like that will be with photos.  

A note to my friend Scout:  This blog will now be subtitled  Life Askew.  Thank you for the suggestion.  Now I need to go fiddle with titles and see how I can incorporate that! 

And bonus, we may be building a house.  We’ve bought land, and we are working with an architect, so if plans go forward, stay tuned for photos of that process.  This is a very exciting development for me.  We may not be able to build soon, but I have land.  Land that I hope to live on for the rest of my life.  I can stand on it and see my mountains.  It brings me peace and contentment.