Planning for the End of It All

I’m at a conference this week in Washington DC, so I’m reposting some old favorites from the beginning of my blog. I’ll be back with fresh content next week and – in the meantime – keep up with me on Instagram to see highlights of my trip.

This post originally appeared on my blog on April 6, 2013.

A few months ago, I planned my funeral.

While I am a planner – an over-planner, really – this didn’t have anything to do with getting ahead or being prepared. This was a necessity. Last year, I found myself facing the very real possibility of a life-threatening illness. Before I had to get on the table for a median sternotomy to remove a [then mystery] tumor, my husband and I sat down to for an extremely difficult discussion.

What did I want to happen? It was so hard to think about; I wasn’t ready. I had family and children to think about – graduations, marriages, grandkids, so much to see. I didn’t want to think about the end of it all at twenty-nine years old. But I did, because it had to be done.

If something went wrong, I wanted to be given some time for the chance of recovery, but didn’t want to be kept alive just to avoid the inevitable. It would be a difficult decision for my husband, but I knew he felt the same way I did.

I didn’t want a viewing unless my parents requested it – I find them creepy. I wanted to wear my favorite dress with the red sash. I wanted a few hymns, but mainly calm, folksy music (think Mumford and Sons). I did not want any kind of photograph slideshow. I wanted Dougie MacLean’s The Gael and bagpipes (not necessarily the real things). No, we aren’t Scottish. I guess I just have a flair for the dramatic.

I didn’t have a preference over burial or cremation. I have an irrational phobia of closed caskets – either way I was going to have to go in the box, so I was flexible. Really, who isn’t at that point? I didn’t want to end up on a shelf somewhere though, so we decided on spreading or burying the ashes if he went with cremation. Somewhere pretty was my only request – I don’t really have strong feelings about any particular place. I’ve always been largely unattached to my physical surroundings.

I wanted to write letters to my children, but I couldn’t get myself together to do it. Instead, I bought a recordable book of The Night Before Christmas. Recording that was a hard evening. It was something so simple, something people do every single day, but for me it represented a life where my children grew up forgetting my face, my perfume, my laugh. It represented what would be left of me.

I asked my sister [both only children, we chose each other] to do all of the fun girly things with my children if I couldn’t do them myself. My husband and I discussed insurance plans, finances, passwords. I made an appointment to get my hair dyed – no reason to meet my maker with my roots showing. I made jokes about the situation [see: hair dye]. It was all very practical.

We held hands. We hugged. I cried. I’ve never felt that kind of fear.

I came through ok. The surgery was major, but uncomplicated, and the tumor was benign. In the end, I didn’t need any of my plans. It changed me though. I will never again be that person I was before the diagnosis. I’m learning to work with the new me now – trying to find a balance between living life to the fullest and avoiding unnecessary risk. I don’t think anyone would ever describe me as fun-loving, but I try to be easy and frivolous. I try to love every single day.

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4 comments

  1. That is some heavy stuff, coming face to face with the end of your life and what it might look like. I’m going into hospice volunteering and can’t even imagine what it feels like. I know for everyone it’s different. During orientation we had to write our own obituaries. It really makes you think about every day differently. Wanting to live it fully. At least it did for me.
    I’m glad you made it through your surgery and didn’t need all the planning. I really have enjoyed reading your blog. It’s amazing to be so open. 🙂

    1. I know a lot of people wouldn’t have had those conversations before this surgery. Everyone kept telling me that it was going to be okay, but – even though I knew it was probably going to be okay – it was healthy for me to make the plans and have the conversations. For me, it was a big part of dealing with the anxiety and fear. I didn’t want to hear that I was going to be okay, I wanted to hear that everyone else was going to be taken care of.

  2. I am walking in your shoes right now. Reading your post, made me realize the value of life and for once didn’t make me feel nervous. I myself am waiting for my results, and hope it is benign. Thank you for your blog

  3. I just wanted to thank you for your blog posts about your sternotomy. I’m currently waiting for test results and if they come back negative I will be going in for a sternotomy as well. Like you, I’ve been googling like crazy, but finding little resources for young, non-heart related stereotomies. Your posts are the first I’ve found and the honesty, detail, and practical advice has been SO helpful. Thank you for sharing and know that it has been helpful to at least one girl going through the same thing.

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