Love,
Barbara

Here is my video message to everyone!

Check out Project Paper Crane at our page on Go Fund Me!

We’re getting there, slow but sure!!

~ John Lennon

They were a few days late, but I got this lovely little message from WordPress today:

One whole year!

I was a little bit surprised – kind of forgot it had been that long! And when I look back at what I’ve done here in that time, I’m both satisfied and disappointed. (Typical for a recovering perfectionist, I suppose.) Things have not gone the way I planned – my illness sort of took over last year in a way I could never have foreseen. Really – this was supposed to be more about other parts of my life, the past mostly, but . . . fate or whatever had other ideas.

And what I discovered was that I wasn’t as ready to delve into those other parts as I thought I was. Not that I’m going to abandon those “lives” – this blog was always meant to explore them, to help me see and understand what has nurtured and wounded and shaped me. And to, hopefully, give a bit of hope and inspiration to others who are also struggling with their own scars and triumphs. I’ve just been . . . sidetracked a little, and gathering courage.

I haven’t been posting as much as I’d hoped in the last few months, either. Partly because I’m really struggling, healthwise, to keep myself (and my emotions) on an even keel right now; I’m staying out of the hospital (barring a couple of short trips to the ER last month), but not doing as well as I’d like.  Still working on raising money for the adhesion treatment I need.  Still struggling to function around what seems more and more likely to be CFS.  Frustrated and distressed by the weight gain that’s resulted from my strange, restricted diet and lack of physical ability to exercise in any meaningful way.  It’s only been in the last month that I’ve been able to go out and walk for more than half an hour without calling my aunt to come pick me up in her car.  Last week, because I was trying to diet, I managed to dehydrate myself to the point where I came within an inch of passing out.  Yeah – frustrating.

I’ve also started therapy/counseling this year, which is much needed and ultimately will be the best thing possible for me, healing in so many ways. But right now, it’s hard, and painful, and exhausting, because the unlearning and letting go of all the bad messages and beliefs is not an easy path. But I’m so happy I’m finally ON that path, and not merely dreaming about something more than the life I’ve had. . . . 

There have been good things, too.  I’ve seen, in the last year, just what kind of awesome friends I have.  On May 14, it will be a year since my last surgery, and the half-a-summer I spent in the hospital. It was only knowing I had the support and love of my aunt and my friends that got me through that ordeal, when every day seemed to bring more bad news.  I seriously have the best friends in the world.  And once again, I can say, “I’m still here.”

The other thing that’s getting me through all this is that I have turned (back) to photography.  Years ago I used to take my camera everywhere, but somehow, for who knows what reason, I let go of that passion and my camera sat, forgotten.  This year, mostly because of the online photography courses I’ve been taking and which I’ve mentioned in posts before, I have rediscovered my passion for photography and also learned a lot about myself.  The courses focus on self-portraiture as self-care, self-love. And as you “focus” on yourself, who you are is revealed in a whole new way.  It has been life-altering, intense, difficult, fun and the most freeing experience I’ve had in years, if ever.  If you had told me six months ago that I would be taking photos of myself, willingly, eagerly, I would have laughed. In your face.  But now . . . I see myself on that path to new life in yet another way, learning to be as gentle with myself as I would be with anyone else I loved.  Mind-blowing.  Bless you, Vivienne, and all my other “muses” in the course.  I am grateful that you have been part of my journey this year.

So . . . what’s ahead?  I would not be so foolish as to try to predict anything, after the events of the last twelve months.  No, I’m just going to wait and see, stay as positive and strong as I can, and be grateful for the many blessings and many friends that I have.  And I’ll be telling you about it all, as it happens, right here in Storeylines’ second year.

I can’t wait.

My goal for this next year: give up on being perfect.

The singer is Sara Bareilles, and the video is here:

“I Want to See You Be Brave”.

On this site, you can also download a postcard and share how YOU want to be brave. I found this so moving, so inspiring, I had to share. And I’m going to submit my postcard as soon as I figure out which of the many things I’m afraid of gets kicked to the curb.

If you’re a woman who’s ever been afraid to BE who you really are, or you don’t want your daughters to ever know that fear, you need to watch this. And pass it on.

How do you want to be brave?

Where you stand. . . .

So . . . all caught up on e-mail and FB this morning, and trying to decide what weakness I’m going to stop running from today. SO many things to do, it makes my head spin. I’m thinking the best thing to do would be to just pick one thing, and ignore the little voice inside that insists I should be able to do it ALL, and RIGHT NOW, please.

But first . . . . a new “exercise”. Last summer while I was in the hospital (endlessly), I bought a book in the gift shop there called 14,000 things to be happy about by Barbara Ann Kipfer. Just because I figured I needed reminders at that point, I guess. What I like to do occasionally is just open up to a random page and see how many of the things I agree with. (Some of them are weird, or unknown to me – what is a “curiosity box”? Must look it up.)

Here are today’s random “things to be happy about”:

# finding the perfect adjective in a thesaurus
# the silence of a leafless landscape
# cast iron and brass beds
# international road signs
#extra long loaves of bread spread with softened butter (I miss real bread)
# white and pink
# vases ( I could collect vases, with very little provocation)
# stamped tin
# handwritten letters that include photos, cartoons, dried flowers, and quotes (I love letters, and would like to send them again)
# making a balloon dog (well, I can’t do this, but I like them)

Oh, look at that. One of my things to do today was make a blog post – and here one is. It doesn’t have to be complicated and serious. That makes me happy.

More later.

Spring flowers – they also make me happy.

Stepping into light

Most of us look at our ideals, see how far we are from them, and get depressed. But it is heroic simply to say, “Here are my ideals,” state them before the world, and then spend your life trying to live up to them.
~ Keshavan Nair

Once again I am disappointed with myself for not living up to standards that I insist on clinging to. I “should” do this, or I “must” do that, or I have “failed” – again. I was going to blog every day in February, and I didn’t! Oh, no!

But I don’t want to spend my blog time berating myself for not being perfect, so I’m leaving those thoughts behind and moving on, trying not to pay attention to dates and months, but instead getting down to what I want to say, as often as I have the energy and strength to do it. That is all I can or need to do.

That act, that intention of leaving expectations of perfection behind, is actually a huge step for me. My life has been a series of harshly imposed, impossible standards, never adjusted to the reality of who I actually am. It’s time to stop looking at them as goals and start seeing them for what they are: harsh judgements that crush spirit and make it impossible to believe in myself. Dark little stones of thought that pile up and up until they’ve become a wall, keeping me within a circle of fear: I’m not what I should be, try harder! Or worse: You’ll never accomplish any of your dreams, why keep on trying? Even as I write, I’m thinking, “But it’s only a first step, don’t forget to say that!” These walls are difficult to break through after 57 years of living within their unforgiving confines.

The last time I posted, I spoke about an on-line course I was taking – self portraiture as self-care, “Be Your Own Beloved” by the amazing Vivienne McMasters. This course became a catalyst for the kind of change I’ve needed in my life: acceptance of myself, really looking at me and not the “perfection” templates I’ve imposed on my self-image. Even celebrating who I am right at this moment rather than fretting about who I think I should be, what I should look like. Everything that I experienced in this class felt good and welcome, affirming and amaze-some – from the photos I took to the incredible people I met to starting to feel differently about myself. It was a truly transformative experience that I did not expect AT ALL, but which I am so very grateful for.

True power and healing

Then, through the kindness of some of my new friends, I was able to continue on to Vivienne’s next course: “Be Your Own Light.” This one is going to be just as eye-opening and life changing, I’m sure of it. A lot of the same people are in this group, the focus now being how we can use light as we continue to take self-portraits, how it can illuminate, make us look differently at ourselves and the world we move in. After last month’s class, and one week into this new course, I can already see changes in my photography and in my self-image. Stepping into light – a kind, encouraging, sustaining force – rather than cringing from the harsh, unforgiving glare of perfectionist demands is a new path for me, specifically because I have changed my focus. I’m looking at/living in the present – not who I’ve been or wish I was, but who I am now. And the universe, as always, lets me know I am on the right track through the words and encouragement of friends, the right photograph almost composing itself within the camera lens without my help, or the serendipity of a quote that feels as if it’s always been a part of me, of how I think and feel and understand the world.

I will always be a work-in-progress – and that’s okay. Not just okay. Normal, even good.

Stepping into the light of that truth has never felt so . . . freeing.

The secret of change is to focus all your energy, not on fighting the old, but on building the new.
~ Socrates

I started out this month with the intention of blogging every day again, but . . . it just hasn’t worked out that way. Or at least not in the way I intended.

I also started therapy this last month, and while this is a good thing, it does drag up a lot of painful stuff, stirs up depression, and makes some days hard to get through. Yesterday I found myself worrying about getting older and about my health deteriorating and me not being able to take care of myself someday, and wondering what would be the best way to – well, to avoid having to go into a nursing home, if it came to that. But I know that it’s all part of a process, not just a general sense of loss and sadness, and that gives me enough hope to carry on even when I feel overwhelmed. And I do love my therapist, and have a strong sense that we will be able to do great work together. There’s just so much to do, and I hope I have the energy and strength to recreate myself one more time – or really find myself for the first time.

On the positive side, I have actually been blogging this month, through a wonderful online photography course being conducted by the amazing Vivienne McMaster. This course is called “Be Your Own Beloved,” and asks that we do a self-portrait of some kind every day. I saw her notice about the course on her Facebook page, and I still can’t say why I even thought about it seriously in the first place. I HATE having my picture taken, and have never suffered it willingly, let alone taken photos of myself. No way. But the approach of this course – cultivating a sense of love for yourself, learning how to cherish yourself – seemed to come along at the right time and fit right in with the beginning of my therapy. So I took a deep breath, and I signed up.

It’s been a revelation, possibly even a life-changing experience. I have made connections with and supported and been supported by some of the most amazing women. We’ve all trusted each other with our vulnerable, our joyful, and our dark moments as we go through the month. And I’ve actually been able to move past the first day of taking “safe” photos of just my feet or hands, to actually taking photos of me. I’m not saying I’ve completely gotten over my horror of having my picture taken, but I’m learning not to let my own judgements of myself get in the way of doing it and – even more scary – sharing the photos.

I meant to share each day of this course here, posting each photo on the day I took it, but, yeah . . . that didn’t work out. This month has been a huge struggle for me, physically and emotionally, and I just didn’t have enough energy most days to do both. But tonight, I decided I would share what I’ve done so far, now that we’re just past halfway. The link below is to the set or album on Flickr that holds all my self-portraits for this course, and I’ll put a few of my favourites below. Each one was taken in response to a prompt from the amazing Vivienne as she helps us discover ourselves, and love what we find.

I’m looking forward to what comes up, what portraits I will take for the rest of the month.

Storeylines’ Photo Gallery: “Be Your Own Beloved” – February 2013

February 1 – Dobby Socks Feet

February 6 – Showing Up

February 8 – Not-So-Dear Gremlins

February 10 – Mirror Photo

February 11 – Candlelight

February 13 – Beckoning Myself

February 15 – Truth

For today, because I am/was so spent, I’ll just say that my “love” for today is: I love writing. I love the feeling I have when I finish a story – there’s nothing else like it. And even more, I love really getting into a story so that the words just flow . . . it’s been a long time since I’ve felt that way. So I want to start something else soon, and keep the momentum going!!!

And here is my quote for the day – I want to be a fearless creator! – and my inspirational message to myself – I want even more to be a CONSISTENT creator!

***

You must learn not to be careful.
~ Diane Arbus

EVERY day.

My Brigid Votive Goblet, from her cathedral in Kildare, Ireland

January seemed to be a month of hibernation for me, with very few blog posts, medical tests and insomnia, the beginnings of therapy, which is always difficult and brings up the ache of painful memories. Most days I either didn’t have the energy to be creative, or I felt frozen, unable to move forward or even move at all. But lately, despite the exhaustion that never seems to go away, my spirits feel lifted, I feel more positive, and it seems like I’m making some sort of very slow progress towards my goals. I’ve been writing the last week or so – real, honest to goodness fiction is coming out of my mind and through my stiff fingers onto the electronic “page”. It’s been so long since I’ve worked on any of my writing projects, it feels wonderful. Like spring is really coming, and thawing me out along with it.

The warmth of spring approaches. . . .

I’ve also been much more physically active this week – walking downtown without my walker, running errands, even going to a yoga class. All of these things made me feel much more “normal” than I have in a long time, even if I am paying the price now. I feel so exhausted at the moment, I wonder that I can stay sitting up in my chair. But it’s okay – it was a good week, in so many ways. Just hope I’m making sense right now, but I’m determined to get this post done before I collapse! Just kidding . . . I think.

I decided I needed to make a fresh start in February, keep this momentum going. I also felt I wanted to focus on positive things this month. When I look back at recent posts, it seems to me so much of it is about struggle, enduring, suffering, sadness. Hard, difficult things. This month, I want to explore the positive side of my life.

So I’ve made a couple of commitments this month, to help me in that goal. First, I decided I was going to do another “post every day” challenge. I went back to the Blogher site, the home of NaBloPoMo (National Blog Posting Month); every month they have a different theme, and I thought I could do this along with all my sister bloggers there. But . . . it being February, the month of Valentine’s Day and all, their theme is “Love and Sex.” Hmm. My experience of “romantic love” has, I’m afraid, never been positive, or uplifting, or anything good for that matter. I can only write about love and sex, not actually do it. (That seems like the subject for a blog post all in itself, but not right now.) For me, February’s most beloved holiday (usually) is the observance of “Pancake”/Shrove Tuesday. I’m all about the pancakes, trust me.

No, my February blog posts are going to be about love as it relates to my real life, not my fantasies. I’m going to blog every day about something I love, everything from people to food to places to gadgets that bring me joy. We’ll see what comes up.

For this first day of February, it’s about photography. In my late twenties, I was madly in love with my camera, never went anywhere without it. And then somehow, over the years, that passion seemed to fade. My cameras collected dust – I still have my old SLR, antique though it is. But last spring my love of taking photographs seemed to come back to me, and I’ve been taking photos of anything that will stand still long enough.

Except for myself. Self-portraits never seemed like an option to me, given my issues with body image and self-esteem. The last subject I wanted to turn my camera on was me. Then my dear friend Naomi started sharing her self-portraits, exploring the genre so deeply and honestly, I couldn’t help but be moved, and felt the first tug towards exploring it I’ve ever had. (You can see all of Naomi’s brilliant photographs here in her Flickr photostream.) She encouraged me, urged me to be kinder to myself, and try.

And then, in a true instance of serendipity, I stumbled upon an on-line course called “Be Your Own Beloved” by another inspiring photographer, Vivienne McMaster, who has made it her heart’s work to show people the beauty of self-portraits, and how important they are to truly caring for and loving yourself. I read the description of her course, and the signs were clear: it was fate. I had to take this course as another part of my month of love and transitions.

Today being the first day of the course, we were asked to take a photo that showed we were on a journey, taking a step toward self-care and discovery. This is my photo for today. My friend Sabine made me these socks, which we call Dobby socks (after the Harry Potter character of the same name) because they are made from many different colours in no particular pattern. Dobby did not like matching socks – no, he didn’t, not at all, Harry Potter! When I wear them, I think of Sabine, of our friendship and the time and effort that went into the knitting of these awesome socks, and I feel special. And loved.

I can’t wait to see what Vivienne has in store for us tomorrow.

What makes you vulnerable makes you beautiful.
~Brené Brown

Me in my Dobby socks, stepping into February.

Nothing ever becomes real till it is experienced –
even a proverb is not a proverb till your life has illustrated it.
~ John Keats

I started this post over a week ago – trying to get straight all that was going on in my life now, the challenges and hopes and fears. But instead, I fell into a bit of a hole, depression quietly crushing my enthusiasm and energy and plans. There were some days when I just gave in, and did nothing more than sit here and check e-mail and Facebook endlessly, even mindlessly; days when I shut it all off and did nothing but read, face turned away from the world. I never got desperate, or descended to the bottom of despair, but it’s been a rough week nevertheless. But I think I know why this has happened – more about that below.

Today I feel as if the weight is starting to lift – if not the exhaustion and lack of energy – and some of the enthusiasm and desire to be creative is slowly coming back. I’ll try to seize the moment and see if I can keep going upward.

Working on being a woman of strength. . . .

******

Back in November, I posted about some possible new health challenges – “It’s a good thing you’re awesome.” – Chapter 6. I had to wait for an appointment with my doctor to talk about them, and that happened a week ago Monday.

So. . . . My arthritis is worse – that I knew. My doctor decided to send me for new X-rays of my hands and hips (those were done last Friday), a new appointment will be made with my rheumatologist, and he gave me a prescription for anti-inflammatories. *sigh* He also feels there is a fairly strong possibility, given that my osteoarthritis was labelled “severe” two years ago, that at some point I may need to have joint replacement in my HANDS. This was a shock to hear; I had no idea that they even DID joint replacements in hands. I’m not going to think about that for a bit – a little too scary, and hopefully a long way off, if it has to happen at all.

We discussed my suspicion/fear that I may have ME/CFS, chronic fatigue syndrome. He did not dismiss it, but said first we should rule out other possibilities for the symptoms I’m having, the way I’ve been feeling. So an appointment was made for me at a sleep clinic, the results of which should help rule in or out sleep apnea as being the reason for my exhaustion. If ruled out, then it’s off to another doctor to talk about CFS. This sleep clinic appointment will happen this Saturday night, with the follow-up appointment on February 5, which is good. Not so much waiting. I have insomnia pretty regularly, but I don’t think I have sleep apnea. Should be an interesting experience, to be wired up and then try to go to sleep, knowing I’m being monitored and watched (I presume!).

Once again, I have the feeling that I’m falling apart in stages. The odd thing is, the thought isn’t nearly as frightening as I would have once imagined. Maybe it’s just that I am finally accepting the fact that, though my mind and heart will never be more than eighteen, my body is, in fact, much older. And not in the best of condition.

I always took my health for granted, ignored my body as much as I could when I was younger. And now, because of illness, I am finally forced to experience my body in a new way, to acknowledge that it exists and it is failing, as all bodies do over time – perhaps more quickly than I had hoped, but who knows? The Keats quote above makes a great deal of sense to me at the moment, as my body becomes more real. It’s just that . . . this reality is not what I expected. Is it ever, really?

The good news is that I am – cautiously – trying to wean myself off the puréed and soft food diet, venturing to eat things like muffins, rice crackers, salmon – more “real” foods instead of just baby food and scrambled eggs. So far, so good – I’m going to try bread next month. It’s a risk, but I’m going crazy, wanting to CHEW something!

******

In addition to all of these physical issues, I also began an emotional journey last week, and I believe it is this that brought on the depression, as a defense mechanism of sorts. After waiting for a whole year, I finally started therapy again – a new therapist, someone I felt a very good connection to from our very first meeting last January. I’ve been in therapy several times over the years, but I never had the feeling that any real work was being done. More like I was hiding behind the story of my childhood, reciting the pain and humiliation and sorrow as if it belonged to someone else, becoming a storyteller, using words to cleverly hold the emotions at arm’s length. But it’s impossible to release something you won’t let close, won’t first embrace.

This defense mechanism is also, I am sure, what has prevented me from talking about my life here on the blog – even though that was my original intent or purpose for starting Storeylines. I wanted to begin, as best I could, a memoir, the book that people have been telling me for years I should write. But when push came to shove, I was still keeping my life at arm’s length, not wanting to really know that pain, live it again, perhaps finally grieve my way through it. Maybe I didn’t know what to do or what might happen once/if I actually did confront it, let it be real. I’m not sure.

But now, I’ve started down that path, through this new round of therapy. Just recounting details of the first eight years of my life in our first session was enough to send me quietly sinking into depression, fearful of feeling things I’ve refused to re-experience for years, I suspect. But maybe, just maybe, this emotional reality won’t be as frightening or as crippling, as I expect it to be. The physical reality of who I am now, what I’ve had to face in the last few years, has turned out to have more grace and more lessons in it than I ever expected, certainly.

I’m remembering again what my Austrian surgeon said to me the day I left the hospital almost three years ago: “Illness always teaches us something.” I’ve always applied her wisdom in strictly physical terms. Maybe this will be a year of emotional learning for me, and more of my self will become real. I want to believe I can finally let go, truly let the memories in, and trust I will survive what I learn.

For that goal, I will try to endure the birth pains depression insists on, knowing they will not last forever, that true feeling is waiting ahead. It’s the journey I need to take now, the strength I need to “become.”

Waiting. . . .

Which way are you headed?

This year, I’ve found another book to be my companion for the year, and it has an equally eyebrow-raising title. A Year to Live: How to Live This Year As If It Were Your Last by Stephen Levine – also with a Buddhist perspective, also about being mindful. I’m not sure if this means I am slowly edging away from being spiritually anchorless and heading towards Buddhism; we’ll see. Right now I see it as more of a need for mindfulness, for becoming aware, alive, and functional in a way I have’t been in a long time, even before becoming sick.

I’ve mentioned before that I am ready – or at least want to be ready – to move from surviving to thriving. My therapy starts next week, and I am so hopeful and excited about that, it almost scares me. That fear of inevitable disappointment that’s been my lifelong companion keeps rearing its ugly head, but I’m working on banishing it.

But besides that work – and I know therapy is going to be difficult work, if I want to change certain things – I recently discovered A Year to Live and decided it was, for me, the perfect “sequel” if you will to How to be Sick. Same idea, really: live more mindfully, be more aware of what you’re feeling and experiencing, take another look at priorities. It’s not about being pessimistic, or resigned, or morbid, or fearful, or even about being dying, really. I’ve come very close to dying twice in the last three years, and to my surprise, it actually has made me feel freer, less afraid of that passage. Instead of being terrified at the prospect of a world that would actually keep on going without me, knowing that I’ve come so close to the edges of my own mortality has made me more concerned with what I’ve accomplished in this world before I leave it.

And that is really the point of Levine’s book – when death is a nebulous “someday” event that doesn’t seem quite real, our first instinct as humans seems to be to deny it, to do anything we can to avoid it or not think about it. And thus it dominates us, controls us, has us under its power. But if we can truly accept it, acknowledge it as a passage that is as sure as our birth and just as important, a peace comes, the fear somehow falls away in a transformation that is just as real as it is hard to explain. Getting ready to die becomes getting busy living, for “the work to be done is to be done before we drop the body.” (Levine, p.10). You certainly can’t do it after you’re dead. And I’ve decided I don’t want to live “half-unborn” anymore.

Levine says that one of the things that inspired him in the writing of this book was something the Dalai Lama said on his fifty-eighth birthday, that he felt it was time to complete his preparations for death.

I too am fifty-eight years old, two-thirds through an imaginary life (one third of a lifetime from an imaginary death). When a journey is in our future, it is never too soon to check out the travel guides and customs, and to learn the language of the world approaching. And it’s never too late to complete our birth.

Fittingly enough, I’m going to be fifty-eight this year, too. So I think it’s time to complete my birth, so that I’ll be truly ready for my death. I’m looking forward to reading and exploring this book and its practices, and I’ll post about my journey occasionally, as it unfolds. We’ll see where it leaves me at the end of my last year.