Sunday, May 3, 2015

Compassion Fatigue- Turning Lemons into Lemonade, Again

We all know that person. That person who always has something tragic going on. Whose life seems to be shrouded in drama. The person always in need of something.

I try to be useful. I try to give. When there isn't money, I give time. Sometimes all I can give is a hug, typed with love from miles and miles away.

I was the kid who took in the stray. Who saw the good in people who were troubled. Who gave people the benefit of the doubt and an ear. I gave more when I could. If there was something needing done- I'd do it.

I am rapidly approaching my 3rd year of living with cancer. I am slightly offended that people sound so surprised as they tell me how good I look.  Hell, before I started chemo- I looked completely normal. I'll admit that I don't get out a lot lately but I seem to be always going. Mostly I limit my interactions because I am a perpetual volunteer and one of the only ways I can prevent myself from volunteering is to keep away from situations where it would be asked of me.

One of the guys at work recently asked Phil if I was coherent anymore. As we laughed about that, tears well up. Because yes I am coherent, well at least I'm functional enough to think I am. But that's the problem with where I'm at, all of that can change and very quickly. Or slowly. You just don't know.

When this began- my diagnosis and journey with cancer- it was not new. I have lost track of the number of cancers I've participated in.  Family, friends, mutants, acquaintances. I am a huge proponent of sharing your journey, letting people know what's going on so that you can get the support you need. I also completely understand why people quietly deal with illness and never let anyone know. I never wanted to be or have my children be a poster child for illness. It's just not in my comfort zone. We try very hard to maintain some semblance of normal despite completely abnormal circumstances.

I have a low tolerance for bullshit. I am tired of inefficiency. I want to make plans but am terrified to take the step. I am in a holding pattern which when I think about it- will be as good as it gets. I will not get better. And this is exhausting. But then there's the part of me that quietly yells from the dark depth- there is ALWAYS a chance. There are new developments in the world of cancer.

We have had some really good support. And there have been times when we have had very little. It ebbs and flows. Sometimes when it rains, it pours. There are times my fridge and freezer are overloaded with generous meals prepared by friends and family. There have also been times the pantry was bare and I tasked the eldest child with figuring out how to order and pay for a pizza with my credit card. Moms have gone out of their way to bring my kids to and from school and activities. And I have asked for help and been ignored. or forgotten.  It happens. I usually figure it's me and my bad communication skills. There are times people try to be helpful and it creates so much stress I just sit and cry. And there are times when the thoughtfulness is so helpful and just perfect that I sit and cry.  I think chemo makes me a little emotional.

I've always said- I don't want to use up the help- I want to save it until I really need it. I never want to be that person who always needs something. I don't want people to look at us and think- oh shit what do they need now?  I've been chastised by friends for not readily accepting every offer as it comes. Yet I worry that people will get tired of the marathon that is us- living cancer.  I used to say- I don't have a lot of money, but I can give time. Now the sands are drifting to the bottom of the hourglass and I am constantly wondering when it will run out. When time will run out, when compassion will run out.

And then I get an email from Alex's Lemonade Stand Foundation. Would we please be their representative family from Hawaii? All we have to do is share our story and put on a lemonade stand in June. Like I said, I have a serious problem with saying no. And I am up at night wondering how I will find the energy and how to make it work with all the other events and obligations. I feel the compassion fatigue. But then I get inspired. The end of the school year activities, the girls voice recital- which is also a benefit for Make A Wish, all sandwiched between chemos. And then I realize sometimes I make things into a much bigger deal than they need to be. The point of ALSF is that every cup counts- every dollar matters. If our story can help inspire others to do a stand or donate- that helps and I know Alex's LSF has funded research that directly affect families with LFS, families like ours. My kids are excitied about being able to set up and run a lemonade stand. Many kids my kids' age are spending time fundraising for trips for baseball, soccer or other activities which for Hawaiians requires major travel expenses.  That is their immediate future, my kids' immediate future is shadowed with healthcare concerns- and so a Lemonade Stand it will be. And I realize that I rely a lot on the compassion of others. And I realize that they may be better at saying no. But I realize that compassion, like love seems to grow exponentially when it is given away.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)