Wednesday, October 27, 2010

This is why

It's been about a month since my last post about my health. I haven't had anything to say that I haven't said already. Nothing has driven me to write in here about it. It's been nearly a year since I started writing regularly in this blog and writing about my illness and disability experiences. Once I noticed there was enough to fill a memoir, I lost interest in sharing. I don't know if anyone really writes and publishes volumes of books on their health. None that I have found anyway. I think after reading a whole memoir about it, I would crave new material. I feel some, if not many people may feel the same way about this blog. And as a writer, I need to grow and change as well. I just can't do that unless I regularly write about a greater variety of topics.

Of course, as a whole person who is suffering and has suffered, my story doesn't really end here, so I don't really have a clear sense of when to stop writing about it. Plus, I think when people write about something and others follow the writing with concern and interest, it gives the writer a kind of responsibility to let people know how she's doing. Just as my story doesn't end, neither does their sympathy. I also feel a responsibility to continue the discussion and provide support for others going through similar things. I have received comments and emails from people thanking me and identifying with my feelings and experiences. I hope those continue as reading and sharing have been mutually beneficial.

I think the blog is a unique type of life writing in that there is a strong community aspect to it. Mutual blog following. Friendships, even. With blog posts often come comments from readers and replies in comments from the authors. This can be a discussion, an update, a reference, so that blog entry doesn't end when I publish it. Blogs are what my Canadian Life Writing professor would have called a "memoir-in-process." Isn't that beautiful?

I really enjoy reading all sorts of life writing: blogs (of course), memoirs, journals, letters. For several years now I have exchanged letters over email with quite a few people. I like to go back and read what we've written to each other. I like to read my older diary entries I've been writing for nearly nine years. I have filled more than twenty diaries. I have a whole shelf in my bookcase for them. I think part of why I continue to read old things is my love of nostalgia and my fear of forgetting.

I've been mostly having worse pain and fatigue than usual for some time now, but it's been a while since I wrote about it at all: in letters to people, my diary, this blog. For ages I used to vent my frustrations in these places regularly. But what did writing about it do for me exactly? What compelled me to write when I did and about what? Why did I lose the will and ideas to write about my health in here?

Catharsis probably seems like the most obvious answer. I wrote when I needed to vent. I learn about myself and the world around me by writing about it. Illness involves so much more than symptoms and appointments. It is an emotional, intellectual experience that I felt I needed to channel somehow. Last year I graduated university with Professional Writing and Health and Society degrees. For many school assignments I was required to examine my own health experiences and those of others and evaluate how they shaped me and society in general. This included complex things like stigma, financial burdens, accessibility issues, the sick role, etc. Then shortly after I finished university last year I got pretty sick. I wanted to write about it, but writing in my diary was no longer enough. My professors and colleagues had been my audience. I wanted to have one again.

My life is still on pause and I know I will have to start it again. I want to, regardless of my health status. Most of my issues are chronic or at least recurring. Most of them are permanent. If I constantly put things off whenever I feel like garbage, I won't get my life back. I've plodded through many times and I know I can do it again.

Until recently I didn't realize that I've been plodding through my whole time being off sick. Like today for example. I hadn't been able to sleep because of serious pain in my spine, but still I got up when my alarm went off and took the dog out for his walk like I offered Mom. She asked me to go downstairs and come back up with a snack for her. I couldn't help but be slow and struggle a bit, but I did it. And you know what? I was happy to. She does so much for me and I like feeling needed and productive. I need to give myself more credit! I could easily refuse to do everyday things because they are painful and strenuous.

I've also plodded through school and other responsibilities during various illnesses. With accommodations such as doing work from home if need be and extensions for assignments, I have and will again be productive and successful.

To get these extensions I will have to disclose my medical problems. I don't mind people knowing, especially since it's a kind of security against being penalized for lack of participation or late assignments or whatever. It will also help me feel that people will know I have a legitimate reason and that I'm taking steps to ensure I do a good job and won't let others down.

I used to feel uneasy about disclosing because I was afraid of people thinking I was making things up, exaggerating or using excuses or on the other side of the coin, that people would think I was less capable. The fact that my health problems are invisible doesn't help. While I still have these fears, my main issues with disclosure are that I just find it hard to know that people know I'm having trouble with something and that I find it hard to react to sympathy. I can write about it freely and even talk about it freely if I'm referring to my general experience. It's just hard to tell people that I'm presently suffering, to describe the specifics.

For over a year now disclosing has become somewhat of a conversation piece. New people, relatives, neighbors and friends want to know what I've been up to. Well, I haven't been up to much of anything really and I want them to know that it's because of illness and not me just deciding to be lazy and live off my parents. No one thinks that anyway, I'm sure, but still... And anyway, I have to have something to talk about when people ask about my life. It's weird. Others talk about their jobs, or traveling, or moving out, etc. I feel so left out, but I but I know my time will come soon enough.

I'm not sure when I will write about my health again. Probably not for a while, but we'll see. I'll definitely write updates here (and probably rant a bit) from time to time.


  1. You say so many important things here. Yes, blogging is a unique kind of writing and it is a community of people who read your blog.

    As one member of that community, I send you lots of positive thoughts of healing. Plodding is no fun.

    Thinking of you!

  2. I really enjoy reading the stuff you write. You have an amazing perspective on things!

  3. Happy Halloween, Ashley! I hope today has been a good one for you! If not, I'll wave my magic wand and all the suffering will go away. It only works on Halloween. :)

    I always enjoy reading your posts, they're always so thought provoking, no matter what topic you decide to write about.

    Interesting that you've been writing in journals for nine years. I've been a life-long journal writer too. Mine go back to age 13 - and I'm twice as old as you - so that's a lot of journals! I'm so glad I've kept them because I do learn something about myself each time I revisit them.

    I always appreciate your visits to my blog. Stop by any time!

  4. You keep writing girl, it is probably a good therapy. The blogging help me a lot in writing about my life, and especially about Matthew. I do to go back and read, its fun. Thanks for sharing your story. Anna :)

  5. Yes, plodding isn't very happy sometimes. It sounds like you have such a struggle. My daughter and I can empathize. She's been disabled, unable to walk, for almost twenty-five years, since she was twenty. If you haven't come over, do come over to my blog and meet her.

    And don't stop writing--about anything you want to write about--on your blog. I can see that you do have many blogger friends, and I'll try to stop by more often!!

    p.s. I have a new blog, so you need to follow this link if you do come over to it. (A glitch in blogger forced me to cancel my old one over the weekend.)

  6. I like your writing and I hope you will continue. I also hope that your ailments will disappear so you can feel totally well.

  7. Bossy - I felt those positive thoughts! Thanks for reminding me you are part of my community.

    Jack - I love your encouragement! Thanks for cheering me on and making me blush.

    Sarsaparilla - Thanks! Your wand did work and I had a wonderful Halloween. Yes, retrospection helps us learn about ourselves! I don't believe you are twice my age!

    Anna - Ah, yes. A child is definitely worth writing about and probably loads of fun to read back on! Thanks!

    Ann - Yes, it is a struggle, but nothing like what your daughter goes through, I don't think. I really appreciate your empathy.

    Vagabonde - Thank you! Most won't disappear, but as long as they improve and take breaks, I will be happy.