Wednesday, August 27, 2014

Out of the Closet AGAIN!

In the many years that I have written this blog I have never written about pain. I've written about various social aspects of my disability, I've written about the physical barriers that I encounter, but I've not written about pain. In many ways, I'm afraid to. My silence, here, and in my social life in general, about pain is, I think, mainly to protect me. My silence buys me freedom from pitying looks and concerned expressions. It buys me freedom from others doing an immediate reevaluation of the quality of my life. It buys me from an increase, even a slight one would be overwhelming, of the 'better dead' approach to disabilities that the issue of pain brings.

I'm choosing to do this now for two reasons, I want to have an accurate 'diary' of my life as a disabled man - the original purpose of this blog and secondly I've learned that silence isn't really the solution to anything. So, I have been experiencing chronic pain for several years now. It varies in intensity. Sometimes it's the kind of pain that you feel when you aren't doing anything else but disappears when involved in something, working, reading, chatting. Pain that is easily pushed to the side. That's what I have most of the time. However, there is also the kind of pain that interrupts my life, my thoughts, my ability to fully concentrate. This is the kind of pain that's been slowly increasing in frequency over the last few months.

Does it diminish the quality of my life? No, certainly not. Does it diminish the quality of a moment? Yes, sometimes, of course it does. It helps that Joe is aware of this and that I can talk about it when it happens. I know he feels helpless to do something mostly because he doesn't understanding that listening and caring IS doing something. Sometimes it's even enough to make it manageable, first and then it can be shoved aside.

Today I've made the decision that it's time to talk to the doctor about pain management. Up until now it's not been on the table because I've been managing pain, pain has not been managing me. I don't want that to change.

I feel weirdly vulnerable writing this. I know when I became a wheelchair user many people stopped booking me as a speaker, even though I think I have more to say, and I say it more clearly, than I did before the wheelchair. Will the same happen with the issue of pain? Will people assume that I can no longer manage? Will people ignore the daily blog, the daily trips to work, the daily living of my life and assume that I no longer want to or am willing to continue of the path that I've set for myself?

The question really then, is will my honesty about my experience of physical pain result in social pain?

I don't know.

But even though this feels a bit scary, it also feels right. I need to, I want to, live an authentic life. I've only got one, I want to be free to explore it in all it's complexities.

And because I want these things ... I'm going to pursue them.

Oddly, I never felt a moments pain while writing about pain. It's was there, but shoved aside, diminished by the concentration and the contemplation involved in writing these words.

Purpose is for me, a helluva pain killer.


Anonymous said...

"Purpose is for me, a helluva pain killer." Ain't it often the truth????

Eileen said...

Purpose has the same impact for me. Thank you for sharing this Dave.

Laurel said...

Thanks for your honesty and willing to be vulnerable. I for one would love to book you for my Surrey School district in BC! Hopefully we will be resolving the strike soon - argh.

Maggie said...

Thanks for being so open with us. Quite often lately I've been a more effective chaplain for someone because of something I've read in your blog.

And here you are again. Several patients I've spoken with have expressed fear that if anyone knew they were in pain then everyone's attention would be diverted from 'what I'm saying' to 'how they imagine they can help me' or 'oh, poor you'. And they don't want that any more than you or I do.

Thanks for making this so clear.

Love and light to proper pain management that doesn't interfere with the good life you are living and enjoying.

clairesmum said...

thank you for your bravery in being honest.
you have once again taken my breath away at the start of the day.
i think of chronic pain as a gas burner that cannot be shut off. sometimes you can dial it down to a very tiny flame, sometimes it will flare up unexpectedly, and you need to use all the strategies you can to keep it turned down.

now there are 2 Dave phrases for me to keep in mind

doing damns the darkness AND

purpose is a helluva pain killer.

Flemisa said...

As soneone who has been in Chronic Pain for at least 25 years, I appreciate your honesty and openness. I look forward to hearing the ways you find to deal with it in all it's complexity and variations.

theknapper said...

omg if someone didnt hire you because you are making pain more in the open they don't get disability issues....or being human issues.

M.Prosk said...


I often take inspiration from the topics that you write about. Your ability to be brutally honest about things that you encounter is what makes your writing so vivid in my mind as I go about my day. Bring this topic to your blog and you will no doubt provide inspiration to others, and gain strength in releasing your secret. Manage your pain with pride, there will be no judgement from me.

Anonymous said...

Don't hesitate a minute! Pain will rob you of all the precious moments. It is a huge shadow over every aspect of your life. Here is to the day that you manage your pain, and it does not manage you, in your thoughts, heart and body. Sometimes we have to suffer, it is a part of life. Often we don't, but think we do. If there is a way to enjoy the fruits of your labours, relish your purpose, through intervention...GO FOR IT!! No guilt, no explanations.

Anonymous said...

I will still be here reading whatever you write about. You are a fabulous writer, and someone who presents writings that make me think. I treasure that! When I was having cancer treatments last year, the worst thing was pitying looks, and people who asked sadly how I was doing. The worst. I was doing what I had to do to become well again, that's all. I didn't feel terrific, but I was managing and carrying on my life. Once in a while I still find someone asking in that pitying way how I am. Thankfully not as frequently now! I wonder if they asked in that tone of voice and attitude because they were afraid, or because they have no experience with what was happening in my life. Maybe that's it? Write on, Dave. Write about whatever you wish. I know I will find education and thought in your writings, and I truly value that. samm

Bernie Oster said...

I will never stop reading you, never stop wishing you were back presenting in Maine, never stop appreciating who you are and what you stand for. I cannot imagine you ever being diminished in my eyes. More than anyone else, you always make me think.

wendy said...

I'm sorry to hear that you are dealing with chronic pain but it certainly doesn't make you any less "Dave" than you were before. Thank you for trusting us.

Cynthia F. said...

Thank you for your trust and for teaching me new things all the time!

Mary said...

There's always a distinction between managing pain, and ignoring it.

I think of pain as a smoke alarm. It's usually an indicator that something's gone wrong and needs some pretty immediate attention - it's good and right that people notice pain in others and feel compelled to help stop or reduce it. It's understandable that people get antsy and say things like "you shouldn't ignore it!"

But sometimes the smoke alarm is just going off because you made toast. Or because someone lit a cigarette in just the wrong spot. Or because the batteries are run down. Or because the smoke hasn't quite cleared from a previous fire. At which point it's fine to reach for the button that reduces the alarm down to a periodic "don't forget about me" beep and reassure people that yes, you know the smoke alarm is going off, you're not ignoring it, but things are under control and it doesn't need to be worried about.