Thursday, July 02, 2015

Fibre Week and Beyond

Another Fibre Week at Olds College has come and gone, and once again, I have lived to tell the tale.

(For those of you who do not know about Fibre Week, a brief primer: Fibre Week is an annual celebration of all things fibre hosted by Olds College in Olds, Alberta, Canada. The centerpiece of the week is the Master Spinner/Master Weaver programming offered by the college, but the week also includes a short workshop program, a vendors' marketplace, fleeces shows and sales, and a variety of social events.)

I wear two hats at this event: Master Spinner instructor and Workshop Coordinator, so even before I got sick, Fibre Week was exhausting. Knowing this and taking my doctor's gloom and doom as a warning, I worked very hard for the week leading in to Fibre Week to organize myself so that I could conserve energy and reduce pain and impairment as much as possible.

And it worked.

I'm not going to say nothing hurt or that I didn't come home absolutely exhausted, but I did manage to drive there, shop, teach and visit, then drive home with stops to pick up furniture on the way. Much fibre was purchased. Many friends were hugged. I got to see the fashion show, which included this SAORI piece I made...


...and I had the privilege of teaching this really remarkable group of women...



The beds were hard and the food was abysmal, and there were details that we as organizers had overlooked that led to brief moments of stress, but the people and the fibre more than made up for the shortcomings. As they always do. This is why I go back, year after year.

This Fibre Week was a little different, though. Along with all the usual stress and chaos, I received a phone call on the Tuesday night that has, very literally, changed my life. My husband had been laid off from Keyano College, where he had worked for nearly 24 years, due to budget cuts and organizational changes.

I was pretty shaken by the news. I lost all interest in fibre and spinning and teaching at that moment, and just needs to be home with the partner I have shared my life with for the past 33 years. But then, after a good cry, a shot of Jack Daniels (okay, a double...or two), and a pep talk from a good friend, I decided not to pack my bags and rush home. Dealing with that crisis could wait-my husband, though in shock, was fine and we are not suddenly destitute, thanks to wise investments and a generous severance package. And I had a great class to finish teaching. There was fibre to touch and twist. I stayed and finished up my class, then had a meeting to start the planning for next year in motion.

The time and space between me and the news was probably a good thing. I did not get hysterical (after the initial panic, anyway) and, let me tell you, it sure took my mind off my disease! I left Olds feeling relaxed, with that exhausted but happy post-Fibre Week glow.

I've been home a week now. I'm busy getting ready for my next teaching trip, which is just 10 days away. And my husband and I have realized something. Something big. We can go anywhere, do anything. We are not so financially strapped that we need to find work tomorrow or starve. Our kids are grown and educated and responsible for themselves. We owe next to nothing on the tiny home we have loved for 20 plus years and only have 3 more car payments left. We are young enough to do almost anything, from farming to urban life to living on a boat for a few years.

We are free.

And the dreaming begins. 

So tell me. What would you do if you had the freedom to choose any life you wanted?

...because we're making a list!


Wednesday, June 10, 2015

Re-emergence

    (Image shamelessly stolen from RawForBeauty's Facebook page.)

It's been a while.

You see, I've kind of been going though some stuff. Heavy-duty stuff. Chronic pain, serious medications, physical impairment, crippling existential angst. You know, stuff nobody wants to deal with. Ever.

When I developed chronic tenosynovitis in my wrists and hands and I had to give up knitting, I felt like I had lost a little piece of my soul. So I've sort of shut down, closed myself off. Become a hermit. 

Because I was afraid.

Afraid that I would lose all the other things that I loved to do, like spinning and weaving and cooking. Afraid that without those things, my life would have no meaning. Afraid that I was exaggerating my pain or my disease (the medical term is "catastrophising"). Afraid that things would never get better, and continue getting worse. Afraid that doctors would not take me seriously. Afraid of what people would think of me. Afraid that friends would leave me if they caught a whiff of weakness or neediness. Afraid that I was not good enough anymore. Afraid that a disease had stolen my life.

Afraid that no one would read this blog anymore if I wrote whiny posts about how much rheumatoid arthritis hurts and how it is changing my life every day.

And, you know what? A lot of those things did happen. I had to cut back on the amount of spinning I do (and so a lot less worsted spinning!). And life did feel less meaningful. I was told that my pain couldn't be that bad, because it was "only tendinitis", after all. Things did get worse as the tenosynovitis spread through my body and I developed some fairly major bursitis issues, too, leading to more pain and some mobility issues. Some doctors dismissed me out of hand. Some friends simply disappeared from my life.

So I wallowed in my hermitage.

But some small spark kept me fighting. I just didn't realize how hard I WAS fighting until yesterday.

Today I see that when I cut back on spinning, it opened up more time for weaving. I see that my definition of a meaningful life is evolving, and different things give my life meaning today. I found a few compassionate medical professionals who verified that my pain was real, that it was indeed part of the journey through rheumatoid arthritis, and that there were treatment options. I have learned that moving slowly and cautiously still gets me from Point A to Point B, and that it gives me time to stop and smell the roses as I go. I have learned that doctors are fallible, and if one does not hear you, you just have to go to the next one and speak a little more clearly. And I learned that I really do have some pretty amazing friends, who love me in spite of my pain  and my newfound slowness.

So I'm beginning to see the last 6 months of my life less as a period of hiding and hermitting and more 
as a period of metamorphosis. I have been in a cocoon, buffering myself from the outside world as I grow into the new life I have to live. I am still changing, still struggling to accept limitations and alterations. I am having a hard time letting go of old beliefs and expectations. 

And here I am, slowly emerging from my cocoon, unfurling fragile and wet wings, hoping that they will be strong enough to allow me to soar. We shall see if I am ready to share my story and return to this blog.

I still have much to sort through, so bear with me. I am still learning what it means to live with chronic illness. I am restructuring my life, my entire world view. It's not easy, and it sure ain't pretty, but I'm tired of hiding and hoping it will go away. 

Let's see where the road leads.

Monday, February 02, 2015

Labels

How do you label yourself?

We all put labels on ourselves. Mother, architect, artist, nurse, accountant, teacher. Gay, straight, black, white, Christian, Muslim. Smart, sexy, socially awkward, efficient, funny, stressed. Sometimes we combine these labels, as in "stressed Christian accountant" or "efficient gay mother". 

Labels can be very effective in introducing ourselves to new people or situations: "Hi, I'm your new neighbor. I'm a dentist who likes to garden."  Resumes, social media, dating sites, the first day of school. These are all good places to use labels. They are markers that others can use to remember us and our role in their lives.

But what happens when those labels change? When your label changes from "wife" to "divorcee", from "doctor" to "retiree", from "general manager" to "CEO"? Does that change who you are. Does your value go up or down? Do you look different, feel different?

If we are lucky, we recognise that the labels we use to identify ourselves are not permanent. They are sticky notes we put on our foreheads for the comfort of others. But some of us begin to feel that the label is who we are. We can feel trapped by our labels, or wear them like armour. We can find comfort in our label, a sense of self. The label becomes our identity.

This is what happened to me. I was happy with my label. I was "fibre artist",  with sub-labels like "spinner" and "knitter" and "teacher". I was mother, wife, cook, gardener, writer. I was busy, smart, efficient.

Then I was diagnosed with Rheumatoid Disease. I became "chronically ill". I became a "patient". I became slow and sore and fatigued. 

These new labels plastered themselves over the old ones, obscuring them, and pretty soon I had no idea what I was. Who I was. 

I did feel different. My value did change, at least in my own mind it did. I felt that everything I was has been torn away from me by this disease. I tried hard to continue tonwear the old labels. I plastered a smile on my face and charged forward. The doctors and therapists all told me to maintain as much of my normal life as possible. So I did.

Or, rather, I tried to.

It became very apparent that my old labels and my new diagnosis were not going to be compatible. Even so, I fought to hold on to those labels for over a year. I tried to keep up the pace of travel and work and family involvement and art and socializing and gardening. It got harder and harder to keep up the pace, with side-effects from medications and deformities happening in over-stressed and inflamed joints. Fatigue became overwhelming and flares stopped me dead in my tracks for weeks at a time. 

Pretty soon, the labels by which I had lived my life became overwhelming. They became impossible dreams, or sticky tar pits fromwhich I could not escape. I felt like an imposter, wearing labels that were no longer mine.

I gave up.

I let go of those labels. I crawled into a little hole and stayed warm while the cold and dark of winter beat on my joints and my soul. I floundered without my labels, not sure who I was and what to do.

Then, slowly, I realized that letting go of those labels did not mean I had let go of who I was. No, sir. Instead, letting go of those labels set me free to be whoever I wanted to be. I can still be a fibre artist without being a knitter. I can still be a mother without being efficient. I can still be a gardener, even if my hips won't let me bend over some days. I am adapting old skills to new tools and techniques, as an artist and a person.

I also began to see that my new labels did not limit my existence. Being a patient does not mean I am at the mercy of doctors and instiutions, it means I am part of a team working to make my life better. Being chronically ill does not mean I am an invalid, it simply means that I have to live one day at a time and embrace each day for what it is. In some ways, the new labels have given me much more power and confidence than the old ones ever did.

I am not my labels. I simply am.