Please don’t ask

notebookWhen I originally started this blog over 4 years ago, I knew better than to make any commitments, even to myself, about how often I would post. I was actually on leave recovering from hip replacement surgery at the time, and I knew that as soon as I was back at work life would get far too complicated to keep up any sort of consistent publication schedule.

I would love to be the kind of person who regularly sets their alarm clock for an early wakeup, bounds out of bed, and cranks out 45 minutes of solid writing time before work every morning.

But I’m not. Maybe it’s my arthritis, but I have never been a “bound out of bed” sort of gal. Mornings are a more gradual affair for me. I need lots of  slow, “unfolding” time between when the first alarm goes off and when my feet need to hit the floor.

Nor do I manage a regular writing routine in the evenings. Some days I’m mentally done  for the day by time I leave the office and head to the bus stop. I’ve written elsewhere about the fatigue that is characteristic of many auto-immune conditions. Furthermore, I actually spend a lot of time at work writing. It may not be the writing I would do if left to my own devices, but it is writing, which means by the time I get home I’m ready for a change of activity.

I fantasize about my (still long-off) retirement years when I will be able to carve out big swaths of time to create literary masterpieces.

We’ll see about that.

Because sometimes, even when I really want to write– even when I have time when I could write, I struggle to know what I want to say.

Last year, during that long period when this blog was in hiatus, I wrote this:

 

Please don’t ask if I am writing.

If I am and you don’t know it,

then today I have not written for your eyes

And I will have to lie.

 

Please don’t ask if I am writing.

If I am not, then your inquiry twists the arrow

Lodged already in my wounded voice

And I bleed silence.

 

Please don’t ask if I am writing.

I can’t begin to tell you

how much more there is to writing

than the marks that land upon the page.

 

I am out searching the forest for a poem.

I am listening for story on a downtown city bus,

I am mining my own dreams for tragedies and gems.

I am testing future footholds for thin ice

 

Please don’t ask if I am writing

Even if I had an answer, today

the words have other things to do.

 

 

Campfire Stories: Childhood Arthritis

 

When I tell people that I was two years old when my arthritis was originally diagnosed, the reaction is usually shock. In this era of everything-we-want-to-know-at-our-fingertips, I am surprised by how many people still don’t realize that arthritis is a disease that can afflict all ages. In fact, according to the Arthritis Society Website  “it is estimated that as many as 24,000 Canadian children aged 18 and under live with a form of arthritis.”

Yesterday I attended a fundraising luncheon hosted by the Manitoba chapter of the Arthritis Society. The goal of the luncheon was to raise funds for Childhood Arthritis Camp—an initiative that has been around in other parts of the country for a while and, thanks to the generosity of many donors, will be happening in this region for the first time this July.

One of the features of the luncheon was the opportunity to meet a group of young ambassadors—kids living with Childhood Arthritis—who openly and articulately share their stories to offer a glimpse into the impact of this disease on their lives. These are kids who are dealing with daily pain, mobility challenges, physiotherapy, fatigue, and some pretty heavy-duty drugs. I know what they are living, because I’ve lived it. But they are also kids who play hockey and basketball, who take dance lessons and gym class, and who are really excited about going to camp with other kids who comprehend the unique challenges they face.

Fifty years ago, I would have given anything to know another child with arthritis. There was no Arthritis Camp in the ‘60s and ‘70s when I was navigating school with an invisible disability that no one seemed to understand.

My primary school music teacher clearly did not understand how painful it was for me to sit cross-legged on the cold, tile floor for the duration of music period.

My elementary school teachers clearly did not understand how the practice of inviting students to “pick teams” for a gym activity can quickly become a form of teacher-sanctioned bullying.

My junior high gym teacher clearly did not understand that there were better ways to accommodate my limitations than relegating me to the bench.

To this day, I feel a residual discomfort in school gymnasiums, and I avoid any sort of team-based physical activity because I carry the deeply ingrained assumption that I will be a liability.

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A different camp, but with the same powerful potential for community. My own kid is in this huddle, not wanting to tear herself away.

I’m fortunate to have had five decades of good medical care, and no shortage of good friends. And I did go to camp. But I have never had a community in which I could look around and see my experience of living with childhood arthritis reflected back in the experiences of my peers. I envy these kids that, even more than I envy them the huge leaps in medical research and awareness that have occurred in the past 50+ years.

My parents didn’t have the benefit of that community either. Which is why I made a point of introducing myself to the mom of one young ambassador. Why I took the time to tell her that, just like her son, I was a toddler when I was diagnosed. And that here I was now— A successful professional. A parent. A happy and healthy adult with my arthritis well-managed and having minimal impact on my day-to-day existence.

One thing I’ve learned from living a story that others didn’t always understand is the importance of telling that story. And telling it again. And again.

Telling it, so the people who have never lived that story can grow to understand. And telling it so the ones who are living it will know that they are not alone.

 

Do you have a story that someone needs to hear?

 

For more information about Childhood Arthritis Camp, or to donate, click here.

 

 

 

Momentum

The remains of the mental muck I was lamely trudging through on Friday night were still clinging to me when I left for work this morning. Even though I wrestled my weekend into some order with my trusty list. Even though I slept late (a rare event) and woke to the smell of fresh cinnamon buns my daughter had made for breakfast. Even though I made a real point of taking it easy on Sunday and actually went to bed at a decent hour.

Sometimes I just lose momentum.

If you haven’t experienced it, it’s hard to explain the kind of fatigue that comes with certain forms of chronic illness. In my case, it comes in a package with rheumatoid arthritis. But fatigue is a feature of all sorts of chronic conditions–other forms of arthritis, fibromyalgia, MS, depression.

Everyone gets tired, right? But fatigue is different from tired. Tired is an event. Tired is “I didn’t sleep well last night so I’d better have a nap.”  Tired is “Wow that was quite a workout; I’ll sleep well tonight. “Tired is “I’ve been on my feet too long and I’ve got to sit down for a few minutes.”

Fatigue doesn’t go away if you sit down for a few minutes. Fatigue is waking up from the nap without much more energy than you had before. Fatigue is looking at the dishes on the kitchen counter, knowing that it would take 5 minutes tops to wash them, and not having the energy to do it. Fatigue is staring blankly into a fridge full of fresh ingredients and opting to microwave a frozen dinner to eat on the sofa. Fatigue is staring blankly at the screen and realizing that even stringing together a few coherent sentences is Just Too Much Effort.

Sometimes fatigue is a corollary of chronic pain. Because let me tell you there is nothing quite so exhausting as chronic pain. But even when my joints are not flaring and I am not experiencing significant pain, the fatigue can still wash over me and rob me of my momentum.

It has taken me most of my life to realize that, ironically, the more exercise I get, the less likely I am to be overcome with fatigue. In the weeks following my hip replacement surgery, when I was exercising religiously and walking every day, I had all kinds of energy. I’m still walking when I can, but the reality is that my work involves a lot of sitting. After being back for just two months, I can already feel the reduction in physical activity taking its toll. In spite of my best intentions to the contrary, it’s hard to maintain the momentum of healthy living when there are so many other priorities crowding in and demanding attention.

After my sluggish weekend, I was relieved to find that at some point mid-morning I got my stride back. By mid afternoon I was on a productive roll, and things that looked like huge and daunting tasks on Friday and throughout the weekend were finally getting knocked off my to-do list with ease.

When the fatigue subsides, it’s easy to forget about it. Easy to assume that the momentum will last. Easy to fall into the bad habits that leave me dragging like a old clock that hasn’t been wound. My calendar at work this week is a marathon. I know better, but I let it happen all the same.