Thursday, November 20, 2014

Why is it so hard?

By Louise Kinross

"Let me get this straight," my chiropractor said.

"You've had this pain in your neck and shoulders for 28 years, but you've only got $250 to fix it with?"

"Yes?" I said, with a plaintive expression on my face.

I sat on an examining table with my legs dangling in the air, like a child, and the doctor sat in front of me. I'd seen him for a series of sessions a year ago when my knees got really bad. Now my neck and shoulders, which I've had ongoing problems with, were burning. 

The night before I had to lay down on my back at 7 p.m. 

"It hurts too much to carry my head around," I explained to my husband, who was sitting in the other room. 

Shortly after that I called out: "I can't pick up my cell phone." 


"It's too painful. I'm lying here with nothing to do. But it hurts too much to hold up the phone."

"Do you know how pathetic that sounds?" he said.

The chiropractor had taken a video of me to show that when I thought I was sitting with my shoulders down and even, they were completely wonky: one was way up and the other way down. When he felt my spine he said it wasn't "where it should be" and he wanted me to have an x-ray.

Why had I let things go so far? 

Just the week before when I saw my therapist I told her I was burnt out, even though I was taking a vacation day. "That's what you said the last time I saw you," she said. 

I was into the fifth week of a very exciting research project at work: nurses from across our three inpatient units were coming together for 90 minutes a week to write and draw about their emotional reactions to working in children's rehab. I was running the groups with two amazing researchers from the University of Toronto: one the illustrator in residence of the medical school, and the other heading up a new series of humanities courses at U of T, who was also  a Phd in English.

But it was something extra, on top of my regular work.

Sometimes I'd do a fantastic interview for BLOOM at work and I'd get so excited about it that I sat up late at night to finish it at home. I was also doing some personal writing at home, so after a long day of writing I'd come home with the intention of "writing" some more. 

"No wonder your shoulders are hurting, hunched over like that," my husband said as I sat at the dining room table tapping at a laptop in a distinctly unergonomic fashion.

In the morning there was the ritual of putting my son's brace on his leg and pulling him up to sit on the couch at a 90 degree angle. If I didn't take the time to lift properly, I wrenched my lower back. My husband had done this one too many times and refused to do it again, so we were no longer alternating.

"You can't keep adding more and more things to your plate," the therapist said. "You're already working full out at work and with the extra demands of your family. How about for the next three weeks you don't do any writing at night? Instead, you recover. You take a nap, or you read, or go out or do something that is completely relaxing. You take care of yourself and let yourself recover."

"Three weeks?" I said, already in a panic. "I don't think I can do it for three weeks. No, that won't happen. I'm 50 years old. Time is running out. Perhaps I can tell myself that I will pick certain days when I go home and I don't do anything at night. That sounds more realistic to me."

The therapist looked at me with a sad, knowing smile.

That night I got the stomach flu, and the next day I lay in bed, unable to go to work or do anything. It took me all weekend to recover.

A few days later I was sitting at the chiropractor's, telling him my sob story about my shoulders and neck. And it was sinking in that perhaps there wasn't a quick fix to running myself into the ground like this.

Two years ago I had a similar experience of being 'forced' into slowing down when I broke my arm badly

I know the research showing that parents of kids with disabilities have higher rates of physical and mental health problems. 

When my neck and shoulders seize up, I start to project pain into the future. If it hurts this much at 50, how much worse might it get? That freaks me out, because I have to be there to care for my son. I can't afford to be out of commission.

So here I am, 20 years after my son was born, recognizing that I still haven't learned this lesson properly. You know, the one where they say if you don't take care of yourself, you can't take care of anyone else?

And I need to.


Ohhh boy, I can identify with you, Louise. I am so sorry that you are in pain, that's #1. I hope you feel better soon! My back is completely wrecked and so is my neck - the last xray showed multi-level degenerating disc disease with bone spurs, courtesy of my sweet son and my boneheaded idea that I didn't need to use a hoyer lift. Nick is 6' and I told him he was 'my personal trainer', so lifting him was keeping me in shape. Wrong. My ortho doc had no sympathy. He said, "well, you've been abusing your back all these years. What do you expect but pain?" I am much more humble about my body and its limitations now. I can't even reposition Nick in chair - that's for the 20-something men. My right arm is permanently tingling and I take a lot of advil, but I still go to zumba nearly everyday and I work a lot, but only because Nick doesn't live at home anymore. I wonder if, with a written diagnosis of your ortho condition, you could be eligible for PSW support in the mornings to get Ben up? Take it easy on yourself - you need to for the long term. Sending a gentle hug! PS: ice packs, advil and a glass wine work well together!

Big hugs Louise! This is really hitting home. I have had a virus for almost a month now. All these little aches and pains are adding up and when I do get sick it's harder to shake. One of these days it's going to be something serious if I don't start taking better care of myself but there is always one more thing to do first... Paul is only 12, I need to be around for a lot longer! I go to the chiropractor once a month and try to go for massage in between. Would massage help you? I am going to start doing yoga again too, slowly. Hoping you feel better soon!

You totally described my life, and probably every other special needs parents life. We have extra demands on our life that other parents dont always face. Emotional, physical, and time consuming.

One of the problems that I face is when I actually take the time for myself, that is when I get sick. I feel like I have to keep going or the sickness will catch up to me.

Another problem is that who can I get to be with my child. Emily is 16 years old. Family members cant care for her. I cant hire a teenager to babysit her so my husband and I can go out. I do take her to respite, but now that option is respite beds are now being used by long term patients. We really need to advocate for more respite type facilities.

You are preaching to the choir, sister.

What we need are more respite facilities for special needs children and youth. I cant leave Emily to anyone, no other family member can help, plus they dont want to, they have their own lives. I have put Emily into respite, but now the ministry has taken away the beds and the only other respite available is 40 minutes one way. Who has time for that!!

Wow...I too identify. I read this and think why oh why do we not take care of ourselves...I also know its a nice thought but one I am unlikely to make happen. I suppose I should try harder though...thanks for the reminder!

Hey Louise,

Although I wish that I endure your pain for you, as I have an extremely high threshold, I do believe that you will learn to manage it well. Sometimes, you'll need to rest. On good days, or most of the time, you'll be able to work your magic, as a speed typist. Call Silvia Guido, she'll help you. And, when you put on Ben's brace, get him to lay on his bed. This way, D'Arcy or you don't have to bend over and break your backs.


I so identify with this article and the above comments, as I lay in bed sick again with the flu! I'm so sorry to hear you're in pain, Louise. The last thing we now need is to get down on ourselves for not having this figured out yet. We have additional challenges that most parents will never understand. Maybe this is a loving reminder to all of us to be gentle to ourselves and make small, incremental changes each week. And then use that time as "me time," remembering that it's not selfish to take care of yourself. Thanks for opening up this dialogue, Louise! Be good to yourself today! Diane S

Three decades and counting. Having enough help, or help at all, is easier said than done, particularly as our children at the severe end of the disability spectrum age (and we ourselves have less physical strength and vitality after so many years of caregiving) and I really think this needs to become a national topic of discussion in the US as the baby boomers age, the first huge wave of autistic children
passes from the school systems to adult services, and the ranks of the elderly swell. Caregiving should be
reconfigured as honorable, valued work with very good compensation and stringent moral standards.

And may all you mothers heal fast and well! Can I get an amen?