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Tuesday, January 1, 2019

Brain Injury Quilt :: My Epic Quilt to Honor 15 Years of Living With a TBI

January 21st marks the 15th anniversary of the day I fell on ice and broke my brain.

Fifteen years! It's now been nearly 1/3 of my life that I have lived with the unique limitations that come with being a brain injury survivor. Each year, it gets harder and harder to remember my old life. It's hard to remember what it was like not to consistently monitor my surroundings and measure my activities in an attempt to last through the day.


Quilting has been a life-giving hobby for me. Before I started quilting in 2013, I struggled with my self-worth. I could no longer write professionally, as I did before my accident. I didn't have the stamina to do any job. I felt (and feel) incredibly blessed and lucky to be a wife and mom. In 2013, my son was started pre-school. Many of my mom friends were returning to work and I felt left behind and left out. I was looking at a lifetime of filling my days while my son was at school and Niels was at work.

So I started quilting. And I realized that quilting made me a giver again. For so much of my life, I need to be cared for. I rely on my husband and son and neighbors and friends to help me when I run out of steam. I ask for more than I offer. But with quilting, I have a tangible way to show my love and appreciation to those who make my life work better.


Last year, I learned of a fun epic challenge many crafty folks undertook: temperature quilts and blankets. I've seen both fiber and fabric versions, and they are all fabulous. The idea is that one creates one block or row for each day based on the local temperature. Some use a high temperature. Others use the low. Still others use both.

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For my quilt, I am going to track the weather highs and lows at our local airport, using Weather Underground as a consistent monitor.


In addition, I'm going to track my brain injury. I always have a headache and vision issues, and while they vary to some extent each day based on what's going on in my life...and the weather, I decided I would track how my brain injury affects me based on how much I am able to quilt on a daily basis. 
The outside squares of the flying geese will indicate the daily lows and highs. The center triangle color and direction will reveal the effect of my brain injury. I'm still mulling over how I will deal with travel days when I won't be able to sew no matter how I feel. I'm leaning toward a special travel print with purple, gray, and white, and will use the arrow to indicate how I was feeling.


I made a chart that I can use to keep track of my days. I've asked Niels to make sure I write down the day's assessment before we go to bed, at least until I get into the rhythm.


I'm not totally sure of the final layout, but I think it will be something like this.


I'm looking forward to seeing how it turns out!

Follow along with the progress of this quilt on Instagram at #TBITempQuilt. I'd love the encouragement to keep me working on the rough days! To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:

Tuesday
Inspiration Tuesday @ The Clever Chameleon
Let's Bee Social @ Sew Fresh Quilts
Linky Tuesday @ Free Motion on the River
To Do Tuesday @ Stitch All the Things

Wednesday
Let's Bee Social @ Sew Fresh Quilts
Midweek Makers @ Quilt Fabrication
Wednesday Wait Loss @ The Inquiring Quilter
WIP Link Up @ Silly Mama Quilts

UFO Busting

20 comments:

  1. What an ambitious and wonderful project. I wish you the best!

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  2. This is a fascinating project. Jen, I'm wondering whether weather affects your health. (Or is that why you are doing the project this way?) It will be interesting to see the relationships between temps and vitality. But aside from all of that, it will be a beautiful quilt!

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    1. I think it will be interesting to see what patterns emerge. I don't have headaches like typical migranes that are affected by weather. Mine tend to be causes more by my exposure to blinking or florescent lights, noise, crowds, etc, as well as stress, lack of sleep, and too much going on. Although, a lot of those factors are present when weather is bad. I'm sure my neuro will be interested in my quilt next year, too!

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  3. What an ambitious undertaking! Not just a square with a color, but flying geese for pete's sake! Wow. I spent 3/4 of last year marking colors nightly to track my mood. Too vague. I found that not matter how rotten a day was, mostly I am happy. Your method is more precise and scientific. You could publish in a medical journal! I have had several head injuries, non as serious as yours but concussion worthy nonetheless. I use lion's mane mushroom to help regenerate my neurons. It is slow work. I send you blessings of good health and comfort. Keep on quilting, it is magical. Your work is magical.

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    1. I've never heard of lion's main mushroom. I'll check it out! By the way, did you make a mood quilt last year with all that tracking? When I was recovering, my OT had me write a thankful journal each night. It was SO hard when I was losing my job, my house, some friendships. Many nights I really struggled after being thankful for my dog! But it was such a great exercise for so many reasons, and it really did help me see the positive then and now.

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  4. This is going to be a lovely project. Thank you also for sharing your moving story.

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  5. Just new to reading your blog through Just Wanna Quilt. Sewing and creating are the things that keep me going. After a few car accidents, and a few concussions my diagnosis is Fibromyalgia. I totally can relate to the need to rely on people to help me at times. Keeping positive and finding joy in what we can control is definitely the way to go. So glad to have cyber met you!

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    1. Invisible illnesses are so hard for others to understand. So glad you found me!

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  6. A great project because the days you write down your lows will even if no sewing still be a contribution to the finished piece. in other words no matter what you do you should still have achieved progress every day. You are a lesson/inspiration to us all.

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  7. What a lovely project and a visual journal. So inspirational. I'm looking forward to your journey with this quilt.

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  8. I love this idea! It combines what you're dealing with and your love of quilting - what could be better?

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  9. I wish you the best with your new project. It will be so interesting to see the final quilt. Thanks for sharing your story on MCM!

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  10. I'm new to your blog and your story. I love where this project is going -- I think that design will work well. Have fun with it!

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  11. What a fantastic way to memorialize and share your daily journey. Thanks for sharing your story. It is very inspiring. Andrea

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  12. I cannot wait to see the final quilt and your thoughts on the project when it's done. This is an awesome way to combine what you are going through with something you love so much. Thank you so much for sharing this with us!

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  13. Great ideas and thank you for sharing your story...

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  14. This is going to be a beautiful quilt and each time you look at it you'll have such wonderful memories! Take care!

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  15. Wow, what a way to keep track of your journey, and a quilt to keep at the end of it too. I'll be watching your progress with great interest.

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  16. Great idea for a quilt. It's going to gorgeous when it's done. Thanks for sharing on Wednesday Wait Loss!

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  17. It takes courage to share your ups and downs each day--and I mean your brain injury, not your local weather! You're inspiring and I'm glad I found you through Lorna's linkup at Sew Fresh Quilts. Happy stitching to you.

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