Not Normal

September 30th, 2012

Institutions in this world inadvertently carve out an imagined life of the people they serve. It’s like the negative space in a painting or photograph: what isn’t there can communicate as loudly as what actually is there.

In my non-blogging life, I am an educator. I started my career as a public high school teacher. I quickly saw how events like Back-to-School Night assumed parents had lives that permitted a couple of free hours on a weekday evening, with the transportation, childcare, and schedule that would allow for this to make sense.

I am used to institutions and society making false assumptions about me. Some of my very early awkward moments involved being in the grocery store and having well-meaning adults ask me what Santa was going to bring me for Christmas. (I am Jewish and have never celebrated Christmas.)

This is not an indictment of society. We have to have some baseline assumptions about how the world works in order to function. To do otherwise can be paralyzing as you try to account for every circumstance. When you are a part of a group that represents less than 2% of the population, your experience may not factor in for many folks.

I find myself in a new invisible minority as I am dealing with recovery, one whose reality is not part of the imagined world of many institutions I encounter.

To play on the tagline of my blog, I often feel like hell, but I don’t usually look like it.

It is hard for people to imagine the careful strategizing that goes into allocating my very finite, very uncertain time and energy. I have anywhere from 8 to 12 good hours a day, and in that, I must attend to my health, my family, my job, and hopefully, some of my important relationships.

It’s the usual working parent juggling act, only performed on a tightrope.

As a result, I have learned to say no to things. I have become extremely discriminating about commitments, making sure they serve important goals before agreeing to them.

My work folks mostly seem to understand. My family mostly seems to understand.

The place I have had the hardest time is in parent communities.

Even before I was done with treatment, I was approached by a PTA president asking me to volunteer for something. I responded quite directly (perhaps curtly — I don’t remember — thank you, chemobrain), explaining that this would not be possible right now and most likely not for some time.

The requests do not end, and for the most part, I have gotten over the guilt of having to beg off.

But then today, I ended up in a parent meeting that was really not a good use of my time. I had originally intended to forgo it –– it was a 3 hour meeting –– but had been told directly about its importance. So I skipped my Sunday morning exercise, planned to delay my errands, and made room in my calendar to attend, not entirely certain how everything else was going to get done.

As the content of the meeting and its irrelevance to me became apparent, I felt myself fuming. I tried hard to talk myself down: They have no idea of the energy calculus that goes into every choice. This might actually have a lot of good if you had the time and energy for it.

The best I could do initially to contain the belligerence burbling inside of me was to avoid eye contact, look at my phone, and just kind of shut down. I quickly realized that whatever good this conversation had to offer would be lost on me.

At the most convenient moment, I made my exit.

On the way out, I caught up with one of the organizers. I tried hard to be a mature grown up, but all my buttons about recovery and struggling to keep up, let alone add in a 3 hour parent meeting, had been pushed hard.

With perhaps a little too much desperation, I explained my situation. I explained that my schedule is a zero sum game, that there are no extra hours to be squeezed out of a day by sacrificing sleep. The time I have is the time I have, and its often less than I think. I explained that, in the future, I need to get a full agenda so I can come for the most relevant parts.

I am not upset at the organizers. They did not mean to put me out, and were only kind and compassionate once I explained my limitations. I am not upset at the other parents. I am coming to believe that, no matter how empathetic people are, our imperfect humanity limits our ability to fully imagine other people’s circumstances. In the end, this organization assumes families have healthy parents whose Sunday mornings are free.

And, as of now, that is not my case.


This entry was posted on Sunday, September 30th, 2012 at 1:48 pm and is filed under Survivorship. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

10 Responses to “Not Normal”

  1. Peg
    September 30, 2012 at 2:13 pm

    I am in no where near the same place as you and yet I think I know very much where you are coming from… and I will bet you did not have your knitting with you, though even some fierce use of needlecraft can only get you so far in such circumstances!

  2. September 30, 2012 at 2:17 pm

    lani, youalways blog what i’m currently thinking…
    i realized this week that i’m not back to normal and hoping that my current situation isn’t my new normal. i find myself saying yes, but loathing the fact that i have to actually follow through on the details. i decided that i can show up and be the ‘idea’ girl [thank goodness that piece returned to my chemo brain]. So ‘idea girl’ it is…

    and YES, YES on the ‘outside’ I look like me again, but on the inside not yet. I too couldn’t focus on my kickboxing class… i removed myself for the situation and just stretched, because that’s all i could bring, and that is enough… for now.

    thanks for being one of my favorite cancer sherpas, i appreciate you. i appreciate you taking the time to put your intimate thoughts into words so that i know i’m not alone~

  3. uvmer
    September 30, 2012 at 3:24 pm

    Breathe deeply. Doesn’t matter if it is Sunday morning or Tuesday evening, no time is going to work for everyone…and the assumption is healthy parents. Every family has a story no one knows. You just have more on your plate right now. Asking for an agenda prior, was perfect. Sounds like you are beating yourself up (?) and there is no way you should be doing that. Even though in my eyes you do wear a “red cape”, you can only do what you can do. Parent meetings are pretty much the same….as you described… and many parents come with an agenda, no matter what the topic. Hoping you don’t feel like a bad or uninvolved parent because meetings aren’t on the top of your to do list right now. Only go to the ones that you REALLY feel passionate about, and let the other stuff fall on the parents who can make it. When it is better for you and you can participate without major sacrifices, you will be representing the other parents who have roadblocks in their way. Share the load. The sun will still come up. Be good to yourself. <3

  4. Lisa H
    September 30, 2012 at 5:11 pm

    NEVER apologize for not feeling well! You can say, “I have to leave because of my chemobrain, low energy level, nausea, etc, but never say, “I’m sorry, but I ….

    Cancer sucks the life out of us, and cancer treatments suck even more out. I am very blessed that even though my church family backed off of asking me to do this or help with that, they didn’t back away completely and were still there whenever I needed them. (We won’t speak of my boss!) They allowed me to feel as guilt-free as possible in my situation. Say no, give a reason if pressed, and say it without an apology. Arrogant? No. Taking care of yourself? Yes! Keep on posting!(When you feel like it!)

  5. October 1, 2012 at 7:55 pm

    I ♥ you. Seriously. I just met you, and already, I know you are awesome. Sending Big Love, Deborah

  6. October 2, 2012 at 12:22 am

    Life is too short!! Whether you have recognized limitations or not, no one has infinite energy – use your energy and your time wisely, to do the things that matter to YOU. Good lesson for us all.

  7. October 2, 2012 at 9:58 am

    Good on your for taking some control and getting out. Other people may never quite understand what your limitations are (or forget shortly after you explain things), so it’s good that you know them and are sticking up for whatever you, your body, and your schedule requires.

  8. October 2, 2012 at 12:38 pm

    Honor YOURSELF first. Your needs. Listen to your body. No one is owed an explanation unless you wish to share and NO apologies are warranted under ANY circumstances.

    You, Lani, are the picture of grace. Your words are wise, thoughtful and insightful. If you can’t come first in your life, you will shortchange yourself the joys that you receive each and every day from your beautiful family.

    OK.. off the pulpit for now… except to say…. <3 <3 <3

    Love to you,

  9. October 4, 2012 at 5:51 am

    I thought I was the only one who felt this way! Even though my hair is growing back and I’m losing the extra weight, I’m not entirely well. I too have about 8-12 hours. To prioritize is the best choice. Last week I had the option of sitting through a two hour meeting for PTO. I asked my daughter what she would rather have: me gone for that time or spending time together at home. She picked home and I texted a friend at the meeting and asked her to keep me informed.

  10. October 5, 2012 at 2:58 pm

    It’s all I can do to get up and dressed in time to pick my son up from school at 4:00 pm. I’m so exhausted constantly. I start a new chemo next week called Halaven, and one of the main side effects is it makes you tired and sleepy. Um, hello? Already there! Many people report sleeping 20 hours in a row on it. I think sometimes, is it really even worth trying to stay alive if I am so tired I can do nothing?

    But then I think – yes. It is. Because, it’s not nothing, it’s just “less.” So, I will sleep, and rests, and sleep and laugh at a TV show and we’ll eat take-out and the house will be messy. All you can do is what you can do. Take care of yourself. You will, eventually, get back to full functioning. Have faith in that.

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