Monday, April 27, 2015

May-hem: A Re-Post

Last year, I did myself a favour. I wrote — and posted publicly — a reminder about what May is like. Then I created a reminder in my calendar that I should a) read the post and b) that my loved ones know why I'd be incommunicado for the month of May. The reminder arrived as clockwork on April 1st. 

I promptly snoozed it repeatedly until the end of last week. Oops.

As I apparently can't be relied upon to follow simple directions (even my own), I am herewith putting it out there in public again. If I disappear a bit over the next month, now you know why.

------


I have a love-hate relationship with May. 

May is the month when the world comes back to life, when it’s 99% sure it won’t snow again for months, when grey and brown makes room for shades of green and when it finally and at last becomes warm enough to take off my socks and set my toes free after a winter of being trapped. 

What’s not to love?



May, however, is also Arthritis Awareness Month in the US. I work for the RA site of HealthCentral. Which is located in the US. May is, to say the least, busy. And no matter what we do to mitigate the busy, to schedule things so they don’t all clump into the same week, to get a grip and keep our plans reasonable and attainable, it doesn’t help.

Oh, sure. The first week everything ticks along like a well-oiled machine. The first week we get all cocky and pleased with ourselves, talking about how the plan is working and aren’t we just terrific. The first week is perfection. 

The second week starts out fine, too. Perhaps some extra work pops up here and there, but we have the better part of a 31-day month to deal with it, so no worries. Right?

Wrong.

Because on or about May 10, in all starts to unravel. But I don’t notice, because there’s still the better part of a 31-day month to deal with the work that’s slowly popping up and organizing itself into slightly catastrophic piles. The cocky is still firmly in residence. I can totally do this, as long as I start moving just a little bit faster. So I do. And not only does the veracity of Newton’s first law of motion become apparent – an object in motion tends to stay in motion — this is also when suspicion dawns that there is a subclause to this law. Namely that in May, an object in motion will accelerate at an exponential rate with every single day that passes.

Somehow, I manage to increase the pace every day. Sure, I admit to being somewhat frazzled, my brain pinging like a ball in a pinball machine run amok and I have been known to beg my doctor for weekly B-12 injections (a.k.a. Energizer Bunny shots) in the desperate hope that they will take me to the end of the month in one piece. Because not only has Awareness Month activities taken over every waking hour, the rest of my life continues apace and it all combines into a swirling, whirling ball of insanity.

By the time the end of week three rolls around, somewhere from the murky depths of the boiling tornado that has become my mind, a memory surfaces. Isn't there something else about May? Didn’t I name it something else? 

Oh, right.

Hell Month.

May is the month I don’t talk to anyone. May is the month when family and friends start saying they miss me and I say I’ll get back to them in June. May is the month when the lists are twice as long as normal and never I catch up. May is the month when adrenaline keeps me going. And going and going. Somehow, my body agrees to support the crazy, not bothering me with idle threats about the consequences that will hit approximately June 3 at 10:25 AM. May is the month when I find out just how much I’m capable of doing. June is the month when I find out how much I’ll pay for zooming by my limits so fast they’re obliterated.

The third week in May is also the time when I start asking friends to next year not to schedule anything else at all in May but Arthritis Awareness Month. It’s the time when I start thinking about making a note in next April’s calendar to remind everyone that I’ll disappear for the month of May. And yet somehow, every year we make a plan and it seems reasonable and attainable and I’m sure everything will be fine.

The definition of insanity is to do the same thing over and over again and expecting a different result.
There are two working days left of Hell Month 2014. I’m counting the hours until it’s all over this Friday evening (at whatever time it takes for me to finish). When I do, I’ll be off for a week, most likely crashing Tuesday morning. 

And this year, I have decided to do something different. This year, I have a plan. Or rather, I have a plan for next year. It has two parts. Part one starts today: I cop to the crazy, say it out loud in public. And then put a reminder in my calendar for next April 1 to read this post. And on April 2, 2015, I will send an email to everyone I love telling them that I’ll be gone in May. Then an email will go out to every project in which I’m involved that is not related to inflammatory arthritis saying I will be incommunicado until June 1st.

Because I have finally realized that no matter how good the plan, the primal force that is Arthritis Awareness Month will take over my life and the only way to survive is to jump on the ride and hang on for dear life.

Wheeeeee!
   
 



Thursday, April 16, 2015

Spring in the City

It's here. It's actually here. What so many of us were starting to doubt would ever arrive, finally did.

Spring. Yes, really. It's here. Want to see proof?


It's sunny and warm. For the last several days, I've made sure to take a lunchbreak and spent it in the neighbourhood with my camera. First, I went to the park.

And saw crocus. In abundance. I love that colour, a splash of brightness among the dead leaves left over from the Fall. (as usual, click to embiggen)



Another first! A yellowbellied sapsucker. In downtown Toronto. It never fails to amaze me how much nature is around us, if you look closely enough.


Every now and again, I meet the squirrel guy. He comes every day to feed the squirrels and by now, they come when he calls them. Who wouldn't with this kind of treat?


It's hard work getting through the shell. Afterwards, this wee one had a rest, basking in the sunlight.


On Sunday I took a walk by Sugar Beach. And there were people having brunch on a patio! Only Canadians would start patio season this early. This fluffball enjoyed the sun while waiting for its people (although I think it would have preferred having some of the bacon).



I mentioned on Twitter that there was liquid water. Fairly astonishing after months of a thick, frozen shell. I mean, will you look at this! The ferry's back in operation! And there are other boats! Sailing!!



Trust me. If you'd lived through this past Toronto winter, you'd be just as excited. And here's another reason to be excited: the cormorants are back. I'm already planning our next trip to the Ptui.



Sunday was a lovely, quiet day and the lake was full of waterfowl. Mostly those that winter in Toronto, although I saw some mallards and heard a goose, as well. I love the redbreasted merganser - the mohawk amuses me to no end



But my favourite is the longtailed duck. I love the colours, its shape, the diving, and that jaunty tail feather. I also love that this particular one gave me one of the best photos I've ever taken.


Are there signs of Spring in your area? And do you have a favourite bird?
  


Monday, April 13, 2015

No Child of My Own



Last week’s excellent CreakyChat on family planning and rheumatic diseases brought up some memories.

I remember the moment I decided not to have children of my own.

My mother is pushing my manual chair through the old part of Rigshospitalet, the hospital where I spent several years waiting for hip replacements. The hospital where I go to see my rheumatologist. Where we have just been, on one of the regular checkup visits to see how I’m doing.

The older area is composed of a multitude of red brick three-story buildings, each containing a different department, different offices, all connected by elaborate tunnels underground. Both my sister and I were born in one of those buildings. I remember visiting my mother while she was on bedrest, holding on to my sister who, just like me, was in a rush to get out. I remember the old linoleum, the tall windows, the smells of beds, babies, and breast milk.

It is early summer, on the cusp between May and June. All the trees are a bright, fresh green with new leaves, the contrast with the red brick of the old buildings brightening the day even more. The sun is shining from the high summer sky and I can feel its warmth on my face and my arms. I can feel the wind in my hair, hear it rustling the leaves.


Yours is the genetic form of RA. The words of the rheumatologist are still running through my brain, each of the seven falling with a weight like an earthquake. I'd had a test with my last round of blood tests. Nothing mandatory, but it would help RA research, so of course I did it. After all the years of living with this disease, all the pain, everything it had put me through, I’d do anything to help research. This test was the show which kind of RA you had.*

Behind me, my mother is talking about how this makes no sense, because I am the only one on both sides of my family who has RA. Well, with the possible exception of a distant aunt, but nobody is really sure if that’s what she had. Her words hang in the air around me, but are nothing compared to his words, still alive, still throbbing, carried on the wind, whispered in the leaves.

Yours is the genetic form of RA. The implications of this are stacking up, one by one. I add them up, do the math, see the future. In the space from the bottom of the steps of the building - the place I went for a regular checkup and heard these words that will change my life - to the curb,  I make the decision. I will not have children of my own. Will not expose a child to the risk of developing the disease that has caused me so much pain, that has stolen my childhood. In that moment, I give up something I didn’t know had been part of my dreams for the future.

I was 17 years old.

 
It’s not long before I develop a plan. I decide to adopt and for many years, know that when the time comes, a little girl from China would find a mother in me. I carefully save my toys and favourite books to pass on to her. I read stories about families who adopt to get ideas on how to help my child celebrate both her cultures and families. I read about Gotcha Day and decide to celebrate that with cake and a party. I think about how I grew up and the traditions I want to carry forward. About celebrating the first snow day with my mother’s rich, homemade hot chocolate and Aunt Anna’s buns. About the way my parents always respected and solicited my opinion, even as a small child. I think about the ribbons my mother tied in my hair every morning before I went to school. I carefully save ideas and customs, and just as carefully put together a parenting philosophy.

Although these years in my 20s and early 30s are fairly quiet on the RA front, I know that with this disease and my disability, I cannot raise a child alone. I know I need a partner and although I have yet to meet the man with whom I want to spend the rest of my life, it’s always part of my future. Of what will come. Someday, I will meet that man and we will make a life together. A life that will include a child. Maybe even children.

 
I remember the moment I knew I would not have children of my own.

I am in my living room, facing the TV. It’s turned off, the blank void of the dark screen loud and vivid with the afterimage of the movie I’ve just watched. Nine Months Later, it was called, a fluffy bit of nonsense about a man facing his commitment phobia when his girlfriend gets pregnant. For some reason, the last scene of the two of them in the pyjamas, dancing slowly with the baby between them has hit me hard. I`d looked at this construct on the screen and realized this would never be me. Realized that even if I found someone special, it would be years before we committed to the rest of our lives together and then more years for the adoption process. And that by then, I would be too old to adopt. Too old to have a baby. The weight of time is overwhelming as I realize that I will be too wrecked, too tired from my RA to give a small child what it deserves. That I am out of time and that which has always been part of my future cannot be.

I was 37 years old.

I am blessed with a circle of friends who have had children for me. Well, obviously they had children for themselves (or so I let them believe), but their generosity in sharing these wonderful little ones — many of whom are now grown — has allowed me to fill my life with kids, to be something for these kids, to play a role, to develop customs, traditions, and amazing relationships. I have two beautiful goddaughters, of whom I am immeasurably proud. I am the Other Mother to two wonderful and handsome boys (okay, young men), without whom my life would be much less interesting. I am Moster to my sister’s children and forever grateful that she shares them with me. The Boy has a boy and I get to inflict myself on him (the poor kid). And I am the (occasionally crazy) honourary aunt to so many other lovely, clever, gorgeous kids without whom my life would not be as rich as it is.


And I have my dream of a parallel reality in which I never had RA. There, I have two girls, lean and rangy with white blonde hair. I raise them on my own on an old farmstead and we are surrounded by animals. Cats, dogs, a couple of horses in the barn, a goat and some chickens. I have raised them with the traditions and customs and ideas I collected over the years. Our house is cozy and warm, filled with love and friends and great debates. On winter nights, we all pile into my bed, and sleep surrounded by the cats and the dogs while the snow howls outside.


*1979 was the dark ages of RA and much of the information they had then was wrong. There is approximately a 5% chance of a first-degree relative (sibling or child) getting RA.
  

Wednesday, April 08, 2015

Tinks, Bubblewrap, and a Birthday

It's April. How did it get to be April?? I must've blinked...

April means Easter and Easter means a visit by the Tinks. This year, it also meant celebrating my mother's birthday. Well, the first celebration. We are waiting with the grand shindig for when she is fully recovered from her hip replacement surgery. 

Instead, we did the quiet family celebration at my mother’s. With the combo celebration of the holiday and birthday, there was a lot of chocolate.

The Boy imitated the Easter Bunny making a home delivery of just about the cutest Easter baskets I had ever seen in my life. Naturally, I had to get them for the kids. My only regret was that I got the last two and I couldn’t buy one for everyone.


Can you believe how big they've grown? Wasn't it just last week they looked like this?

 

There was presents and cards and bubblewrap. The photos involving the latter were all a blur of popping and play fights, so I’m sticking to the slower activity of opening a card
  
 

As usual, most photos of me involved a camera.
  
 Photo by David 

Which was entirely justified, based on how many really great shots I got. Such as Morgan bugging her brother and Liam practicing his paparazzi gesture.
  
 

Janne had bought a fantastic cake and, bless her, baked something nutfree and chocolatey for me. Which gave all of us the opportunity to confirm that the combination of raspberries and chocolate is heaven on earth. Really, there’s nothing better.

 
Photo by David 

Every now and again, you have a day where everything just works. Which is most of the time when we all get together — we are really good at leaving stress and problems outside the door and just reveling in each other’s company. We always have a good time together, but there are days that transcend merely good and become perfection. This weekend was one of those times. The kids were joyously rambunctious and it was contagious.



 

This just about sums it up.
  
   
How was your weekend?
  

Wednesday, April 01, 2015

Happy Big Birthday, Mor!

I’m a lucky woman for many reasons and one of them is that mor is not just my mother, but my friend, too. 


Which is not to say that her friendship has been more important than her mothering. In fact, I think she’s pretty much the perfect mother. Even when I was little, she encouraged me to think for myself and to be part of decisions as much as possible. I may not have always gotten what I wanted, but my opinion was always considered. This was really important as a child growing up with a chronic illness — a situation where a lot of control is taken away from you.

I don’t think she originally emphasized independence because of my RA, but I’m sure that enhanced her approach to parenting. My mother has always been a very independent person herself, approaching life with curiosity and no fear and encouraging Janne and myself to do the same. I grew up hearing stories of her childhood and her adventures. One of the quintessential mor stories is that time she climbed a radio tower and once she was really high, her foot slipped. She managed to grab hold of the tower again and eventually got down in one piece. As long as I can remember, that story hasn’t been about the almost-fall, it has been about the climb.

Because that’s my mother in a nutshell. Always seeking new experiences, new heights, new adventures and doing so with a spirit of optimism and positivity. One of these adventures was when she spent a year in England when she was about 20 years old, travelling around the country demonstrating Danish products in a folk dancing outfit. She looked hot. One of the smartest things my father ever did was ask her out in England. Later, he proposed to her and had to do it three times before she said yes. She wasn’t sure she wanted to get married.

Life hasn’t always been kind to my mother. In fact, it has been downright mean at times. She has had chronic back problems since her early 20s, along with a host of other physical problems. And yet, she’s kept going. Another quintessential story of my mother is about her recovery from a slipped disc surgery that left part of the left leg paralyzed. She still walked to the train station every morning to go to work.

Every time life has thrown a challenge to my mother, she has grasped it and found a way to live her life with it and around it. She was my anchor as a child growing up with a chronic illness. When I was 16, doctors suggested to her that I was better off in a group home. She politely told them what they could do with that suggestion and took me home, providing my care for the next 17 years, and never even once making me feel like a burden. More than that, she supported me in my education, helping me with the practical things that would otherwise have been a barrier. A year after I left home, my father got sick and then she took care of him.

My mother is a natural caregiver — she just knows what to do. She has a sixth sense for what people need and provides it, no matter what. She’s always said that she wanted to have enough children for a soccer team, but both my sister and I were both somewhat of a miracle baby. That didn’t stop mor from accumulating more children. She is “hygge mor” to so many of our friends, stepping up and stepping in when they needed help. I’m pretty sure that if you count them all, she did end up with a soccer team.

Nine years ago, one of her big wishes was granted when Janne made her a grandmother, a mormor. She was there when the Tinks were born and for almost a year, she travelled to Hamilton two or three times a week to help out with them. She’s got a special bond with the kids and absolutely adores them. The feeling is quite mutual.

For as long as I can remember, mor has been my best friend. We’ve talked about everything and nothing, we share books and watch reality shows together, calling each other in commercials to discuss what happened. We’ve gone for long car rides, the best way to connect it to sort through the day’s challenges. She’s the last person I talk to at night and often the first person I talk to in the morning. I feel completely safe with her and she knows me better than anyone. And I am privileged that she considers me a friend, as well, sharing her thoughts, feelings, and life with me.

Things have slowed down a bit for mor in the last several years. Life threw some more challenges her way, some really hard ones. She has persevered with her trademark good humour and grace, coping and finding a way to continue living her life. Her adventures are a bit smaller, but just as meaningful. And she continues to be an anchor and a best friend to us all.

Today is mor’s birthday and it’s a significant one. She is not fond of it, saying that 80 makes her sound old, but she is anything but. Sure, her body is reluctantly starting to show some wear and tear, but her mind is unchanged. She is joyful, funny, thoughtful, smart, kind, and generous. And she is one of my favourite people in this world.

All of this just scratches the surface. I have stories that could keep us here for hours, but there’s only so much praise the woman can take in one sitting. I’ll save the rest for the next birthday.

Please help us celebrate my mother today.

Tillykke med foedselsdagen, mor!
  


Tuesday, March 31, 2015

Disability Diaspora



I only have a few days left. On April 1, this Wednesday, they will come for me. So many of the people I know have already been moved, I am one of the last. I have connections, I fight back, but still, it is inevitable.

It started slowly, with some cuts to funding. With exhortations to “do more with less” and the subsequent efficiencies. But if I think about it more closely, it had started even before then, with the increased professionalization of the attendant care sector, slowly and inexorably shifting control from those of us who receive services, to the people and the organizations who provide them. In much the same way as the story of the frog that won’t jump out of the boiling pot, as long as you increase the temperature very slowly, none of us truly saw where it all was leading.

Until, that is, we were told we would be moved. No longer would we live in our own apartments, in the community, independently. We would now be moved to a facility within a compound. Providing services would be cheaper there, they said. They present it as a boon — we would be among our own, see our friends every day. And aren’t we lucky — we’d have our own rooms and wouldn’t have to share!

I saw those rooms. Half the size of my living room, there was space for a bed and a chair for a visitor. I looked at the door. There was no lock. Then I went outside and saw the three words on the door, each with a space for a check mark. Home. Community. Medical. For our own safety, they said, with a sparkling smile. So our whereabouts were known, should something happen.

One of them just left. I smile at them, act as if nothing is amiss. Pretend I’m getting ready for the move. Inside, my mind is whirling, trying to find a way to escape. I think of saying I’m going to get some groceries and just keep going, with nothing but the clothes on my back. My mother would take me in, she would hide me. It would mean leaving Lucy behind, in effect handing her over to them. The thought sends ripples of despair through me, but I can’t see any way to bring her without alerting them to my plan. Either I leave her behind or I surrender to be moved, to live out my days in a compound of the disabled. I don’t think they would let me have her there, anyway.

The door closes behind them and I am alone in my own apartment, with just four days left of freedom. Supposed freedom, that is, for they watch me, they swoop in to offer help the minute I move outside my door. I am one of the last and they are suspicious of my acquiescence.

My neighbours — all able-bodied now — look at me askance, some with pity, some with growing impatience. My apartment will be empty soon, available to someone who needs it. Because I don’t need it anymore. I will have a safe home. Among my friends. At the compound. They talk about me, no longer to me. The other day, someone screamed at me that I was a freak, that I should be ashamed of being out in the world.

It happened so fast, this last step from efficiencies to exodus. And no one is fighting it, no one is disagreeing. They have handled it so well, tapped into that underlying fear of the different, the conviction that people like me should be elsewhere, out of sight. In care. And now we will be behind a wall, apart, out of sight at last.

I know how this goes. Never again, they said. And yet, here we are again.

This was a dream I had this weekend.