Wednesday, January 18, 2017

Project Twinkly Lights

I tried to hit publish on this post about two hundred times. I tried to hit publish late at night, early in the morning, or just a random time in the afternoon. But, I failed. I failed to hit publish.

And, then, one of my very favorite people, sent a text, asking me, did you hit publish?

No. I did not. Yet. I did not hit publish, yet...

I live in this house because the building I love, in the area I love, sold to developers. I moved and bought a house, in a week, because of my parents. My parents, who have a whole history of their own, a whole lifetime before they knew me filled with scars and devastation of their own. Because of my parents, whom I didn’t always understand, but who always, always gave me a roof over my head. Always.

And, then there is Ashlea. When I couldn’t find anywhere to live, I remembered the neighborhood where Kyle and Ashlea purchased their first home. I moved into my home, in that same neighborhood, in a week. Ashlea, was my first friend to visit my new home. Later, she visited with her two kids, then three kids, and then when there were four, we visited, here, alone...for girls’ night. And, Christmas rolls around every year, and Ashlea, from the day I moved in, asks, Sar, can I please just hang a strand of twinkly lights...even if it’s just in your room. She will even stand in my bedroom, like Jeff Lewis, and all designer-ish spread her arms around my windows, and point out just where she will hang them.

And, I say, no, no. I am not doing any decorating until things are just the way I want them. 

And, a few years go by. And, I realize an accessible house is neither easy, nor is it cheap. No matter who is paying, a home that works for me isn’t easy or cheap. As the contractors come through, pointing out just how many times I crash into the small doorways, as evidenced by the black marks, or how they can tell I jump uneven tresholds because of nicks and crash marks, I realize, even in this chair, I do not understand just how much I adapt and accommodate. I live in a world that doesn’t work for me. I get by in a world not made for me. Things, just the way I want them, are a long, long way off.

And, that’s okay. It really, really is. 

Or, so I thought.

And, this this summer happened.

After enough time with Glenda, the Good Witch...aka Ashlea..., in early January of 2016, I decided, to finally hang the twinkly lights in my room, around the December of 2016. I would prepare the entire year to make things just right for the lights. Right around this same time, I heard an interview with Joanna Gaines. And, she mentioned she worked to make - where ever she lived - a home, doing whatever she could to make it a home. Well, I am very aware of my limitations. Not in a cynical way, just in a practical way. But, I am also very aware of my strengths. I know, even though I live in a fixer upper and would love to tear down the old wall paper myself, it just isn’t going to happen. But, I also know I can move furniture and organize and hire people to change light fixtures and learn how to do things I didn’t know I could do before. And, I can buy appliances that make my life easier. Like, front-loader washers and dryers. Because, after, seventeen years of Mary Lou Retton style laundry, it’s nice not to have to climb and bend and twist to wash my clothes. I knew my limitations and I did what I could do when I could do it. And life started to get a bit easier.

And, then I got all brave. My neighbor is this crazy urban gardener. She grows every vegetable - all on the side of her house. I quizzed her about her method and the work, insisting I just wanted to start with herbs and pretty flowers. She gifted me her nutrient rich and magic soil recipe, and I ran around to stores, purchasing everything on the list. I white washed my Terra-cotta pots. I hired someone to refinish my back deck and build custom cedar planter boxes - all along its railing. Because, damn-it, this was going to be the year I finally decided to hang the twinkly lights.

And, I worked in that little garden. And, out in my front yard. My nearest and dearest all contributed. Every, single one of them. Planting and mixing soil and carrying in plants and approving color schemes and putting up with my ideas. 

And, then, one day in late June, I went in for a routine MRI. I, actually, went in, still wearing my short Hunter boots, all covered in soil, because I was gardening and almost forgot about my MRI. 

I knew my health was declining. I was getting signs. All kinds of signs. I just actually thought...enough. This is not happening again. I am sick of stuff getting in the way of my life. 

Well, that’s not really how things work. Happiness doesn’t really come from the outside or what we want to happen. We get to believe this for a long, long time. We believe it is up to the outside world, our successes, our facebook status, or how we meet the check list of all-the-things-that-are-supposed-to-make-us-happy. 

And, slowly, over time, we learn we are not in charge. We are human and vulnerable and breakable.

I got a really bad phone call when I didn’t want to answer that call. I heard I was sick when I didn’t want to be sick...again. And, I had to go through it all, again. The IVs and the surgeries and the visits to the hospital.

But, I still watered my garden. I still ran to the garden center when the temperature cooled enough to plant the purple kale, just like Joanna Gaines. 

And, this Christmas, I hung the twinkly lights. In my bedroom, in the living room, in the bathroom, and in the kitchen. And, on the real, live Christmas tree my parents carried over and put up for me.

Look. I am the first one to tell you not to give up and the first one to tell you I understand why you want to give up. Right before this whole June thing happened, I received a private message from a friend, asking me how I continue to keep living, even when I don’t want to. I felt like a fraud. Because I couldn’t answer. Because I had no idea how.

And, I still have no idea how. I just do enough to get by.

I feel inspired by those around me and I try to do them justice.

I cook a recipe from a book each day.

I insist on organizing the insides of cabinets and the sweaters in my closet.

I plant a garden because my friend did.

I watch fashion shows on line and read fashion blogs, as if I wear anything but crew-neck sweaters.

I try out every skin treatment on the Today Show and pinterest.

I move furniture around and change hardware on the kitchen cabinets I can reach.

I build real wood fires and, bravely, I might add, clear the cold air with wadded up newspaper I have to light and hope to anything that is listening that it doesn’t fall back on me.

I drink tea, in front of the fire, with the twinkly lights on, and am grateful for the day.

Because that is all any of us has. Today. 

I don’t have a clue how to get through the hard stuff. But, I can tell you how to do enough to get by. I can hang the twinkly lights, even when everything isn’t perfect, and sit and enjoy them by the fire I built.

And, my house still isn’t perfect. For a lot of reasons. But, that doesn’t mean I can’t make it a home and choose to live, even when I am told I am dying. I can plant a garden and I can hang the damn twinkly lights around the windows in my bedroom.

I’ve been doing this all along. This living when I was dying. Just ask the nearest and dearest to me. Not because I want to prove myself to you. But, because I need to prove  I am okay to me.

I have a long life ahead of me. I want to hang those twinkly lights every singe day. Just as I always have. I want to remind me --- I do this. I want to remind me that I am okay. I want to show up for me.

The word inspire comes from spirit. To, breathe-in. So many people have inspired me. So many people have watered parts in me I didn’t know existed. I need to believe in me a little bit everyday. Even if I don't believe I am able to document those few moments - even if they are that cup of tea in front of the fire - that inspire me most, I need to do it for me. Because I am starting to believe my place is to be broken. I am starting to fear living. And, that's not okay.

I, finally, need to write that friend back and respond...I don’t know what I do or how. But, here are all the things I love about life and I do every, single day.

I just hope, like the people who inspire me most, we all continue to inspire each other to keep on living.

There are twinkly lights to hang. Even when it isn’t perfect.

Time to hit publish.


  1. Thank you so much for writing this. I think of you often when my days are hard and I want to give up. and then I think that Sarah doesn't give up, so what right do I have to feel sorry for myself? You inspire me.

    1. I will think of you, too. We all have the right to feel sorry, but we have to get up again, eventually. The very best is when we can lift up each other, like you do for me. Thank you. xo

  2. Your are beautiful!! Thanks for your words.


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