Different!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.

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9 Responses

  1. Elizabeth J. says:

    There are many ways to be isolated. Some of us who live with families find ourselves isolated by the emotional walls they build to protect themselves from our eventual loss. Sometimes I have to get away from my family to be with friends who treat me “normal.” That if it happens to come up about a side effect will just say “that’s too bad” or maybe even offer something positive (like a ladies only gym when neuropathy forced me to live up walks) instead of a long sermon about how I need to be grateful to be alive. Hardest of all is that I have to ask for any affection, even kisses or hugs, even from my youngest who used to be very free with the hugs, and my husband sleeps in the guest room “for my good.”
    I ran away to my married daughter yesterday. We talked of her work, the baby, ordinary things. And my grandson, who knows nothing of cancer, only that I am grandma, cuddled in my arms, and when I handed him to his mommy to leave, reached out for me to give me a hug. It was beautiful and for the first time in many days, I felt like I was still alive, not just existing with one foot in the grave.

    • Knot Telling says:

      Elizabeth, I am so sorry. I can’t imagine how painful that must be.

      Yes, you are right. I didn’t do the topic justice. Thank you very much for your courage in sharing your experience of isolation. I’m pretty sure it is not at all uncommon.

  2. Primo Melon says:

    Isolation is a frame of mind brought about by circumstances. Hugging isolation close is our choice. I have been fortunate . The love of my wife is suffient to keep isolation away from my door. If isolation has crept under your door into your life seek others, family, friends. My prayers are with you.

  3. I agree with Elizabeth. It is also easy to be isolated even when surrounded by family and friends. While I chose to be alone sometimes, it is not always the best choice. Isolation also comes in the form (for me) of living with this day in, day out. While I may look “normal” or “functional” to those around me, I am always aware of the side effects I am dealing with, most which are unseen. That is also isolating.

  4. Maxine D says:

    I too know the difference between alone and isolated – I am not alone as I love with DH, but because of his illness, I have to work hard to prevent becoming isolated. The cyber world helps me with that too.
    Prayers and blessings

  5. This was a very thoughtful, succinct post. Thank you.

  6. bethgainer says:

    Excellent post, and you’re right: there’s a difference between being alone and being isolated. I was very isolated during treatment and surgeries, as you know. It sucks. Sending hugs to you…

  7. The Accidental Amazon says:

    Knot, I’m so glad that your employer has been able to find a way to allow you to keep working. I’ve been through a lot of ups and downs trying to figure out how to hang onto my work despite fatigue, brain fog, doctors appointments, stress, etc., etc. But I think being able to do work helps keep isolation at bay. Just being of use to someone else, feeling like you are contributing something as yourself, as a person and not a patient, some of the time — all of that is a great antidote to feeling the isolation that always hovers around being a cancer patient.

    And our online community is such a boon! Thanks for being there and writing. xoxo, Kathi

  1. 28 July, 2013

    […] through the cancer experience and wonderfully dealt with this week by Elizabeth, Eileen , Beth and Telling Knots on their respective […]

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