Friday, March 15, 2013
Who would have thought that 27 years ago, when I graduated from high school and received a typewriter from my grandparents as a graduation gift, that I would meet my husband in cyber space via Matchmaker.com or complete the majority of my grad school research online (becoming very fond of JSTOR in the process)? Who would have thought that I would be researching breast cancer via the web, writing a blog or joining a larger online breast cancer support community some day?
I started my Caring Bridge blog per the suggestion of my West Coast cousin Marilyn and it turned out to be an awesome communication tool for the first 3 months of my experience with breast cancer. It was easy to use and I could post status updates to multiple people at once. The best part, however, was that family and friends would reply with supportive comments. Considering I was dealing with breast cancer with a very limited local support system crew, as I mentioned in Lean on Me, this virtual support was key. If people couldn’t drop off a casserole, Garrett’s Popcorn or beignets, they could at least send me a quick message. However, after the word came through that I wouldn’t be doing chemo, my own posts started to drop off–and so did the supportive messages. The scary part was over; now it was time to get on with life.
And I did. My 3 Months Out! and 6 Months Post Diagnosis posts show someone who is jumping back into life and embracing it. Summer vacation 2012 was one of my favorites and it was all about reconnecting with family and friends. However, by October, I had hit an emotional low that was scary. My coping strategies, my thriving strategies, were no longer working. Issues at work and October’s in your face focus on breast cancer awareness (as if I needed any reminders!) triggered a major slump. However, I don’t like crying at work or wallowing in feelings of pain for long and so I went on a mission to find a cure for my funk–much of it virtual. Since I had been following a number of BC blogs since spring, I started to implement some of the suggestions of these awesome bloggers.
I signed onto an American Cancer Society Virtual Support Group trial–but was selected as a control group member, rather than a participant, for the first year. Not to be deterred, I called my primary care physician and got her recommendation for a therapist, a therapist who has turned out to be a true blessing and a fairy godmother complete with unconditional support, guidance and coaching. I continued attending my monthly American Cancer Society sponsored BC support group at my hospital’s breast cancer support center–and I finally felt a breakthrough in November. I read a USA Today article about a Twitter Feed called #BCSM (Breast Cancer Social Media) that hosts a Monday night Tweet Chat support group and joined Twitter to check out this “tight knit community.” I was also coaxed (by my therapist) into transitioning my Caring Bridge blog into a broader blog–which I did in November.
The challenge is that I’m the new kid at school–a virtual school. Forgot about that little caveat when I put myself out there. Lori at Regrounding wrote about the #BCSM TweetChat recently:
So let me set the stage. It’s Monday night, #BCSM TweetChat. As the chat begins introductions are made. Since the majority of the group knows each other, quite intimately in fact, there’s lots of cross-talk: updates on health, conferences, journal articles, blog posts, etc. You can feel the sheer joy many of us experience in reconnecting and settling in to an hour of support, love and learning, with virtual milk and cookies at the end.
Now imagine you’re new to this group. I would guess that for some, jumping into the dialogue is a bit like daring to be the newcomer at a crowded table in the high school cafeteria. I know when I started in chat I was a bit unsure. I know, too, that many newcomers introduce themselves with a bit of trepidation, letting us know that they will be lurking – both negotiating the rapid pace and ensuring they feel safe are challenges.
I still feel like the outsider who isn’t cool enough to belong. I may have lost a breast to cancer and I’m taking a daily dose of Tamoxifen, which makes me a member of the BC Club–but after logging on for a number of Tweetchats myself and blogging for 4 months, I don’t yet feel the cyber ‘love’. I still feel like the wallflower, the unpopular girl who ends up eating alone in the cafeteria. Is this feeling the nature of the beast, simply because I’m still new to the Club and in time I will feel the support? I just haven’t logged in enough hours, haven’t let virtual friendships build long enough with shared experience/shared conversations? I have learned so much through these Monday night Tweetchats and the transcripts that usually are posted afterwords, but I’ve taken to skipping participation in the chats themselves.
Or is something else going on?
When Marie at Journeying Beyond Breast Cancer wrote a great blog post recently asking: Is There a Hierarchy Among Cancer Survivors? I thought “oh, no she didn’t! I can’t believe she went there.” in a voice that resembled one of my teenage students. She hit a nerve by speaking of the fact that many of us belittle our own cancer journey when comparing it to another person’s–and that in regards to cancer, survivors often place each other in a hierarchy as well. Because of the way cancer is staged, Stages 1-4, and the variety of treatments out there, someone with Stage 1 isn’t going through the same experience as someone with Stage 4. Marie writes:
We minimize our pain – and this doesn’t just relate to cancer – because we feel we didn’t suffer enough and so our trauma is less than someone who did. The natural follow on from this line of reasoning? We can pick up our lives where we left off and because we did not have to go through any surgical, chemotherapeutic or radiotherapeutic healing of the cancer, we do not have to emotionally heal from it either.
Or perhaps it is not ourselves that are doing the minimizing of our pain, but others. Often they are well-meaning – by pointing out how much worse it could have been for you, they are trying to console you in their own ham-fisted way. Sometimes, it is other cancer survivors who feel you haven’t got the right to your pain because you haven’t “suffered” as much as they have. Whether these thoughts come from your own mind or that of others, it all serves the same purpose – it invalidates your experience and impedes your healing journey.
Maybe I have been sensing this hierarchy within the virtual world and backing away as a result–at least in regards to Twitter.
Friday, March 22, 2013
Funny how planting virtual seeds can sometimes result in a person finding just what they need at the right time. Case in point: Jackie at Dispatch From Second Base wrote a post on Monday with the timely title “How to Get Comfortable on Tweetchats.” It appears I’m not the only person who has been lurking and not joining in on the weekly #BCSM tweetchats… This excellent post, however, helped me get over my issues and at least join in on Monday nights’ tweetchat. I realized that I have spent the past 5 years incorporating Facebook into my world, but Twitter is a different beast and one of my problems isn’t with the other participants in the Tweetchat, but with my own learning curve. By giving Monday night’s #BCSM tweetchat one more try, I had a good time. I wasn’t a wallflower and felt supported when I participated.
Between Monday night’s tweetchat, therapy and support group on Wednesday, and happy hour with a former colleague last night, I’m feeling the support! Woo Hoo!!!!
I am thrilled to read your post today – thrilled that you have grown your Caring Bridge blog into the wider blogosphere and thrilled you are finding support in the wider #BCSM community – thanks for sharing my words about the hierarachy in cancer – it really did hit a nerve and I am glad readers felt they could express their own feelings about the topic. I look forward to watching this blog grow – warmest regards, Marie x
Awww, shucks, Marie. You are too sweet. Your virtual support has been especially meaningful to me–your blog was the first one I started to follow a year ago and your weekly round-ups introduced me to so many other bloggers (and continue to do so). Thank you for being you. 🙂 JoAnn
Oh that’s wonderful! Good for you for seeking help from different resources and for being persistent.
Coincidentally, October was a rough month for me as well. I was exhausted from all of the changing of gears, surgeries, and weeks of willing myself through each work day.
I have noticed women, including myself, minimizing their cancer and appearing to make apologies for making complaints. As for myself, I reminded myself that everyone has legitimate complaints and stress. Why was it okay before my diagnosis to complain about a mere inconvenience like traffic but not okay to complain about having breast cancer, just because I have an excellent prognosis?
Wow, Elizabeth, I wish I would have had that insight last year. I have always grumbled about plenty of things, but felt–for whatever reasons–that I couldn’t complain much about my BC. Love this.
I’m glad you like it! Remember, my day job is as a psychologist so I get all kinds of practice in thinking about things in validating ways. I am lucky to have these tools and to often be able to apply them to my own life!
Hierachies? Not wanting to complain about BC (I finally am using the lingo!)??? Complain away! I am all ears (well, fingers on keyboard) and I complain about everything from pee on the floor in the bathroom to kids who come to school with no pencil and fancy cell phone. When is Spring Break???
Spring Break has arrived!!!!!! Woo hoo!!!!!!!!!!! Heading to Florida tomorrow…so ready for the pool and beach!!!!