Last week I posted The Electrician Didn’t Come, in which I rambled on about nothing in particular for 600 words. I asked if anyone had a suggestion for a topic for future posts. In the comments, MC wrote:
Not to be maudlin, but I would love to hear about how you avoid becoming isolated – like I wonder if support groups and that sort of thing really help. To me, it is like getting sucked into a cesspool and running out of arms reaching down to pull you up. Or mabe you are just more resilient because of the tool chest of coping mechanisms you learned as a therapist? Also, is the medical system there a lot different than in the US? Your entries are very encouraging and uplifting, by the way so thanks.
There are a few interesting topics there, so thank you very much, MC!
Isolation is a big problem for the subset of people with serious disease who live alone. My friend and fellow blogger Scorchy Barrington recently wrote an incredible post about her experience being alone in an emergency room. If you haven’t read it yet, please do.
In my own experience, it’s important to differentiate being alone from being isolated. I love being alone and even before I became so ill I chose to live a relatively solitary life for spiritual reasons, as well as due to my natural inclinations. However, I still left home for work, worship and occasionally to see friends. There were usually just a day or two in a week that I was really alone at home.
At the end of 2011 my neutrophil count (a type of white blood cell) became severely low due to chemotherapy. This kind of side effect is usually self-limiting and/or corrected with injections of granulocyte-colony stimulating factor. In my case, however, it never did correct and I now have to be very, very cautious about exposure to infection. Since my job involved contact with a lot of people from many different places, my employer very graciously changed my duties and allowed me to work from home.
As I became more ill I became less able to perform even those tasks and the organization I work for gave me a completely different job that could be performed from home on my own time schedule, working around my good and bad days. I’m very grateful for that.
The upshot is that I am home alone most of the time now. I would not say that I am isolated because there is someone who comes to do the heavy cleaning, someone else who has my prescriptions filled and runs little errands, and a neighbor across the courtyard who frequently invites me for a meal. In fact, I am quite fortunate in that regard. But even so, my main outside contact now is online.
There are lots and lots of online resources for the homebound these days. Besides blogging, Facebook and Twitter, there are specialized groups and forums for cancer in general, breast cancer specifically, and metastatic breast cancer even more specifically. I have made friends and found soul mates online. With such real, intimate contact so easily available to those who have Internet capability, isolation is far from inevitable.
To answer the more specific part of MC’s question (“…like I wonder if support groups and that sort of thing really help. To me, it is like getting sucked into a cesspool and running out of arms reaching down to pull you up.“) Support groups have definitely helped me at various times. As well as being a ready-made peer group, they are also a way to meet people who have been through what you are experiencing. As I got to know the people, I was able to to discern which of them were more like me and which were not. I was able to make friends from among the peoknow what youple I met and learn how to respectfully keep my distance from some others. In that respect it’s no different from any other social setting, really.
Serious illness can easily feel “like getting sucked into a cesspool”; I get that. You will never hear me refer to cancer as a blessing or a gift or a good thing. It sucks. But that does not mean I cannot use the experience to learn and to grow. It’s largely a question of balance and attitude, I believe. I wrote a little about that in one of my earliest posts, Fundamentally Happy. Even though I am much sicker now than I was then, it still rings true to my ear.
Reading what I just wrote has inspired me to add a page of online resources to Telling Knots. Look for it in the next day or two. If you have a favorite resource, please mention it in the comments.