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.

A Christmas Without Knitting

I have been knitting for 30 years.

I have been knitting Christmas gifts for 29 years.

Or, rather, I have knit Christmas gifts for the past 28 years. This year, for the first time in over a quarter-century, I am not knitting a single gift.

If you are a knitter, or if you know me, you know this is A Big Deal. Christmas knitting is as much a ritual of the season as trimming the tree and leaving cookies out for Santa. The planning, the dreaming, the anticipation of the recipient's delight. Thinking of that special person as I knit miles of ribbing. The clever hiding places that I stashed that knitting if someone walked unexpectedly through the door as I was working on their gift. Casting on one last pair of mittens on December 22, because they would look great with the hat I had made. The tense race to have that last project cast off by Christmas Eve. These have been a huge chunk of my festive season for most of my life.

I love my Christmas knitting. It allows me to be generous with those I love without feeling that I've given in to commercialism. It gives me a sense of connection with my gift and with the season. I have always considered it one of the best parts of Christmas.

But not this year.

Now, this was not originally the plan. I spent much of September perusing Ravelry and Knitty and the hundreds of magazines accumulated over the past 30 years for inspiration. October was spent considering yarn, rifling through my stash or ordering the perfect yarn. Early November saw the rolling of balls of yarn, the casting on, and long, lazy evenings of knitting. I knit a couple of scarfs for
a puppet show. I was rolling nicely along on the gifts, with more in the planning stages. Then my
thumbs stopped working.

Stopped working. Not "got stiff". Not "started to hurt". Stopped. Working. Did not move. Locked. Both of them.

Okay, I had been pushing through a bit of a flare, but I wore my compression gloves and my wrist splints to protect the joints. Sure, there was some stiffness in my hands as I worked, but the gentle rhythm of knitting tends to work the kinks out and get those stiff fingers moving. But this was different. My thumbs were painful, swollen and frozen at a strange angle. I decided that I needed to take a day or two to rest. I called all the various assorted doctors and physiotherapists, making appointments for the earliest dates they had (between a week and a month into the future). I looked into different knitting styles, hoping that I would find one that was more ergonomically friendly to stiff thumbs. I discovered just how much everything in human life depends upon having opposable
thumbs.

Eventually, the pain eased. My left thumb started to move, then my right-though that one still won't bend at the top joint. Everyone, from the orthopaedic surgeon who fixed my broken wrist years ago to my current rehab team, has told me that knitting is good for stiff joints, so I picked up my knitting again. There was a mild sense of panic in the back of my mind about the fast approach of mailing deadlines, but I knit on.

For about half an hour. And my right thumb stopped again. Just stopped.

I finally got in to see my primary care physician this week, and he was full of bad news.
Anemia, bursitis in one hip, advanced osteoarthritis in the other, deterioration in my lumbar vertebrae, and something with the charming name osteitis pubis. And that was before he looked at my hands.

It didn't take him long to determine that something is wrong. The prime suspect is de Quervain's tenosynovitis, but also in the pool are bursitis and osteoarthritis. There will be x-rays and MRIs and a visit to the rehab team before the culprit is revealed, and that will take time, especially at this time of year.

So, long story short, there will be no knitting for a while.

I feel like I just got a stocking full of coal. I am struggling with the idea of not Christmas knitting. Not because the gift bit is important, but because it has been such a part of my celebrations at this time of year for so long. Because knitting has been so much of my life for so long.

I will rest, and I will take the anti-inflammatories, and I will find other ways to celebrate the
season. I know I will continue to feel as if something is missing, as if Christmas is not quite right. But I also know that, if I rest and recoup this Christmas, I can knit next Christmas. So, I will bake and buy my gifts and spend time with those I love

And start planning next year's Christmas knitting.

Resistance

Resistance, as the Borg say, is futile. This, however, does not stop me from practicing it, especially when it comes to my Rheumatoid Arthritis.

It's been a year since I was diagnosed and I still find myself fighting with both the disease and my self. I've worked hard over this past year to accept the limitations that have been put on me by this disease.  I'm not doing as well as I could be, because I am resisting.

I liked my life the way it was. I was busy and productive. I spun and knit and wove. I taught and wrote. I cooked fancy meals and gardened. I socialized and entertained. I did things. Lots of things. Sure, sometimes I got tired or stressed, or some part of me hurt, but I was living up to my model of a busy, accomplished human in the 21st Century. I was strong and bold and accomplished.

Things have changed drastically in the last couple of years. I just can't keep up that pace anymore, as much as I wish I could. Limits have been imposed. Limits not of my own choosing. My fingers are not quite as nimble as they once were. Chronic fatigue has cut both ends off of my days by making it harder to get up in the mornings and easier to fall asleep in the evenings. Pain and stiffness mean every task takes so much longer than it used to, and side effects from my medications make me groggy and fuzzy-headed.

In spite of all of this, I soldiered on, keeping up the hectic pace of my old life. I have had to work harder to keep it all going, but I have kept it. I have talked big talk about letting go of this task or focussing more on that job, but I haven't actually done it. I have been trying to resist changing. As long as I am resisting, I can tell myself I am fighting and holding on to a normal life.

But two things have become very clear to me lately. The first is that this disease is not going to go away and I had just better accept my new limits. The second is that putting a pretty face on pain and illness and suffering of any kind hurts not only the person who is suffering, but every one. Openess and honesty do not mean you are weak and whiny. It means you are accepting life as it is. It is the lie that all is well that does far more harm.

So, the time has come, the walrus said, to speak of many things. About change and acceptance and moving forward. About saying no and setting reasonable expectations. About being honest about my disease and the impact it has on my life. It is time to stop resisting and to understand that acceptance does not equal defeat. About admitting when I hurt and slowing down.

It is also time to talk about tiny triemphs. About finally finishing the sweater that I started in January. About my wonderful vacation in California over the last two weeks. About living life, in spite of pain and fatigue, even if it is not exactly the life I had planned.

Moving forward, I want to write more, about my disease and about fibre and about life, starting here on this little blog. I am not changing my blog from a fibre arts blog to an RA blog, I am opening up my focus to include the realities of my life as a fibre artist with RA. There will be more stories about pain and disease and medications, but there will be stories about fibre and making really good yarn, too. I hope that those of you who have been reading all along will come along for the new journey.

Let's stop resisting together.

RA 101

Okay. I think that if I'm going to share my stories with you, it's only fair that I offer you some perspective on what these stories are about.

One of the first things that I learned about Rheumatoid Arthritis is that most people don't actually know what it is. There are misconceptions, even within the medical community, and confusion with other forms of arthritis and even with other diseases. So, to get us started off, I offer a basic primer on Rheumatoid Arthritis (RA).

RA is a chronic, systemic auto-immune disease. What this fancy phrase means, basically, is that the immune system goes haywire and starts attacking healthy body tissues as if they were disease agents like bacteria or viruses. This happens most frequently in the fluids that serve as cushions between the bones in our joints, but can happen to other tissues in our bodies, including our heart, lungs, eyes, and digestive organs. It is not just a few achey joints, it is a disease of the whole body. And once your immune system goes awry, it never goes back. The primary result of this malfunction of the immune system is inflammation, typified by swelling, heat, and pain in the affected area. Or areas. RA very rarely hits just one spot, but rather goes after multiple joints and organs.

Other body functions are affected, too. Most people with RA have malformed red blood cells, or far to few of them, leading to anemia. This, along with the chronic pain and the fact that your body is basically expending all its energy fighting the invasion of an enemy that doesn't exist, leads to chronic fatigue. The swelling of the joints also means that our body movements are thrown way out of whack. leading to all sorts of muscle aches and pains. Some RA sufferers also have other illnesses that piggyback with the RA, such as fibromyalgia, chronic tendinitis, Crohn's disease, or Sjogren's syndrome (the inflammation of salivary glands and tear ducts), which compound the pain and fatigue.

This is a lifelong disease. There is no cure.

It is estimated that between .5% and 1% of the population have this disease, making it relatively rare, but RA can attack anyone, at any time. The usual age of diagnosis is between 20 and 50, but children (including my own daughter) can have it and I recently met a woman who was first diagnosed at 72. This disease strikes predominantly women, but men get it, too. There is no known cause, though there have been recent studies that suggest a combination of genetic and environmental factors as the trigger. The symptoms of RA vary from person to person, and from day to day in each individual. There are days that I feel pretty good, then I wake up the next morning unable to bend my fingers without crying.

This is the biggest problem with having RA-the unpredictability of the thing. No one knows who will get it, when they will get it, which of the symptoms they will have, or when and where those symptoms will strike. This unpredictability makes treatment more or less and experimental process. There is no cure, but there are treatments that can reduce the symptoms and slow the progress of the disease and mitigate the damage done. Sadly, though, there is no way of knowing which treatments will work for who until the treatment is given. And all of the treatments come with problems of their own. All of the know treatments for RA focus on suppressing the immune system, which opens a whole other can of worms. Then we add in the side-effects that come with strong medicine, from dry skin to nausea to death.

In other words, this ain't no picnic.

For me, RA has shown up as inflammation in 57 of the 60 joints counted for assessment. (My elbows and my left knee were inflammation free and have stayed that way for almost a year.) I have inflammatory tendinitis in my shoulders, hips, wrists, and ankles. I am battling costochondritis, the inflammation of the cartilage in my rib cage. I also have Sjogren's, which means my eyes are constantly dry and red and my mouth is so dry that my lips stick to my teeth.

So, now you know what I'm facing. I lived for 50 years with relatively few major health issues, then, WHAMMO! This thing hit me like a freight train. I had a life I liked, making things and teaching others to make things. Travelling and gardening and eating good food. Good friends, wonderful family. A good life. A life I do not want to give up. As I said in my last post, I am weaving the ends of that life into a new cloth, building a different life on the foundations of that old one.

The first step, in every journey, is acceptance.

For more information about RA, you can go to:

http://www.arthritis.ca/page.aspx?pid=982
http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/
http://www.arthritistoday.org/about-arthritis/types-of-arthritis/rheumatoid-arthritis/

New Stories

It's been a while again.

I know I haven't been the most consistent or prolific blogger, but, even for me, four months is a long time. It's not that I haven't had plenty of adventures, or that I don't have long, rambling stories to tell. In fact, I've had a wonderful summer, filled with travel and gardening and family and friends. I even sat down to write several times, but I stopped.

Why?

You see, when I started this blog, I wanted to write about my journey as a fibre artist. To show off finished objects. To share my travels and adventures at fibre events. To teach and inform. This was, to me, a place for fibre and art and ideas. I know I strayed a bit here and there, but my focus always returned to my true love, the fibre stories.

Over the past year, my stories started to change. They were no longer stories of fibre and spinning and making things. As I tried to write this past year, so many of the stories changed into stories of pain, of frustration, or of anger. There was no longer spinning to share, or finished objects to show.

So, I stopped telling stories. I stopped sending out proposals to magazines, I stopped working on the book, I neglected this blog. I had no story to tell. Not anymore.

But this past month I have realized that I do have stories. Just not the ones I am used to telling. New stories. Scary stories. Stories of despair and hope and redemption. Stories of recovery and reclamation. Stories of set-backs and defeats. Stories far more interesting and revealing than those simple stories about making yarn and knitting sweaters.

I had put my stories in a box. They were safe stories. Stories about things outside of me. It's time now to set my stories free. There will be stories of spinning and pain and knitting and adaptation and growth and learning.

I am slowly weaving the threads of my old life through those of my new one. This is no longer just a blog about my journey as a fibre artist. This is a blog about my journey as a fibre artist with Rheumatoid Arthritis.

This is a blog about me, as I learn to bring my two worlds together. That old world of fibre and teaching and travel and my new world of disease and doctors. Each world has its stories, and I am the place where those stories intersect.

Here Comes the Sun

Well, hi there!

Yes, it's me. I know it's been a while, but...

Little darling, it's been a long cold lonely winter.

Little darling, it feels like years since it's been here.

It was a long and cold winter, with a lot of bad news, sad stories, and personal and professional struggles. For so many I know, this past winter has been a season of loss, of change, of confusion. For me, it's been six months of medical visits, conflicting information, side effects, pain and frustration. I have sat down to write hundreds of times, only to find that all I had to express was fear and anger.

Here comes the sun, here comes the sun...

And I say it's all right.

Even after the deepest darkness, there is light. My medical team has finally found a combination of drugs that are easing the pain and inflammation. I am able to use my hands again, though only for short times before they get fatigued. I can sleep again-and I seem to be making up for lost time in that department! I am eating and exercising and, most importantly, spinning.

Little darling, the smiles returning to the faces.

Little darling, it seems like years since it's been here.

I must admit, it's been hard work to get here. And there is still a long way to go. But I am optimistic. I can share my stories again without becoming angry, or sliding into self-pity. I am softer, slower, and more in the moment than I have ever been.

Here comes the sun, here comes the sun…

And I say it's all right.

Sun, sun, sun, here it comes.

Sun, sun, sun, here it comes.

Sun, sun, sun, here it comes.

Sun, sun, sun, here it comes.

Sun, sun, sun, here it comes.

I'm not sure where life is going to take me yet. I'm still learning my new limits and limitations. I'm weighing which aspects of my life to release, which to modify, and which to hold on to. But I'm moving forward and feeling optimistic for the first time in months.

Little darling, I feel that ice is slowly melting.

Little darling, it seems like years since it's been clear.

Spring has finally arrived here in Fort McMurray, and with it has come sunshine and a parting of the dark clouds over my health and heart. The hurt that was keeping me from pursuing my passions is melting under the sun's rays. I've made string, I've finished projects that have languished in the studio since last fall, I've started writing again. I've dug in the garden and walked my dog every day. I'm up and around and ALIVE.

Here comes the sun, here comes the sun…

And I day it's all right.

~Lyrics to "Here Come the Sun" by George Harrison. Thank you, George, you've given me my new mantra.

http://youtu.be/C5E_zXbmrlM

Mastery

I am a Master Spinner.

What does that mean? Well, on the surface, it means that I took 5 years of classroom teaching and followed each class up with a year of home study. It means that I spent a week of intensive testing, making yarns to specification. I means I wrote an In-Depth Study, examining how to make a yarn and how that yarn will perform in use for socks. It means I fulfilled the requirements of a college continuing education course.

But it also means so much more.

It means that I have taken the time to think not only about how to make yarn, but why to do it that way. It means that I have read and studied the works of others, drawing lessons from their work, then applying it to my own. It means I have made mistakes and learned how to correct them. It means I have learned to think critically and independently.

I do not blindly accept that we do things as spinners because that is "tradition". I do not mindlessly follow gurus or trends. I have the means and the skills to set trends, if I feel the need. I take risks and make yarns that I know I will never use, just to see if I can make them. I read and think and analyze, and I draw my own conclusions. I understand my craft intimately.

There is a school of thought, made popular by Malcolm Gladwell, that it takes 10,000 hours of practice to achieve mastery of a skill. That, with enough practice, anyone can become great at the task they have set out to learn. While I agree that time and repeated practice will make you more proficient at a task, I do not agree that repetition alone will make you a master.

I recently stumbled across this post about the 10,000 hour rule. I highly suggest you read it, but in a nutshell, it says that new research has shown that it is not only the amount of time that you spend perfecting your skill, but how you use that time to analyze and improve those skills as you practice them. Doing scales, reviewing technique, problem-solving when you make mistakes. It takes an understanding of the skill that you are trying to perfect. It also means that many, no matter how long they practice or how dedicated they are, will become true masters.

My friend Margaret tells of her early spinning experience. She had been merrily spinning yarn for twenty years, but when she took her first level of the Master Spinner Program, she says she realized that she had been "spinning for one year, twenty times". She did not know that she was repeating the same patterns over and over,  doing the same things right and the same things wrong again and again. She was not analyzing her work, understanding only the how, but not the why.

I am often asked what it takes to succeed in the Master Spinner Program, and my answer is always the same. It takes practice and patience and humility. That last one is a big one for most people. Humility, admitting that we do not know everything, the willingness to make mistakes and learn from them, are rare commodities today. Modern media makes us all believe that we should be instant experts in everything we try, that we all deserve greatness in our chosen fields.

The terrible reality is that this does not happen in real life. To learn any skill, be it spinning or baking bread or tightrope walking, takes practice, conscious thought, and the horrible realization that you will never be as good as you want to be. A true master is always seeking to improve, to learn more, to understand more deeply. Stopping our practicing after 10,000 hours, assuming that we are now masters, stunts our mastery and limits us. For others, even 10,000 hours of practice will not overcome a hurdle placed by a skill or an assignment.

Instead of assuming that the learning has ended and the practice has made you better, continue to learn and experiment. Guys, we have 40,000 years of spinning history to explore! New fibres, new techniques, new concepts await every one of us. Push out of your comfort zone, take risks, make mistakes. And learn. Always learn.

That is truly the road to mastery.