Sunday, February 3, 2019

TBI Quilt :: January Update

Hello February! My yearlong TBI temperature is already 1/12th done! This is going fast!

Now that we are in month two, I have put all of my January blocks together. If you are new to my project, I am chronicling my 15th year of living with a brain injury.  Each day, I am making a block to visually show how my brain injury affects me in one specific way--my ability to quilt. The wings of each block refer to the daily high and low temperature outside. Purple geese pointing up mean that I am able to quilt, gray geese pointing down mean that my headache, fogginess, fatigue, or other symptoms keep me from sewing. The darker the color, the more extreme my sense of well-being. Dark purple = a great day. Dark gray = I didn't get out of bed.

My goal in making this quilt is to give a visual representation of what it's like to live with a brain injury. I have lots of experience telling others what it is like, but seeing me experience my symptoms is much more impactful for those who don't know much about brain injury. Just this week I experienced a crash at our local YMCA (fortunately I was with a friend who could drive me home, but I'm sure I'll have to explain it the next time I'm there).

Also in January, I finished the top of my Good Fortune mystery quilt. In one of the clues, designer Bonnie Hunter shared that by making an extra line of stitches with my flying geese, I could make extra HSTs for later use.

This turned out to be a great idea because even I was startled to see how clearly it shows the breakdown of my days. 

I think that many of us on disability feel guilty at times. Even though SSA disability is a program we in the US pay into with every paycheck, there is a sense that disability means an all day, everyday debilitating condition. And it can be. A blind person doesn't get a break from being blind, which is why blindness is a condition that gets fast-tracked for approval. For other conditions, like brain injury, the challenge is that one's ability to function can vary wildly depending on exposure to triggers, and the daily exposure to those triggers are cumulative, meaning that our body's response to them are more severe and longer lasting. For me, things like stress, deadlines, driving, crowds, bright lights, multi-tasking, etc. contribute to my need for rest and the likelihood that I will crash--become so overwhelmed that my body shuts down.

I can't quite put into words what it felt like to see my days so starkly. I was shocked. I felt both affirmed and saddened by the reality. 

Near the end of the month, I made this realization. As of the 25th of January, I would have only been able to work a regular day 4 times!

I'm not exactly sure how I'm going to use these HSTs. I'm leaning toward using them in the border, but we'll see if I get another idea. I would like to submit this quilt for a show, so I won't be able to use them on the back if I want them to be part of the educational aspect. So for now, I'm put them together and have them in my project box.

As far as the main quilt, I've made a few tweaks as I got started but I think I have a good system going now. I had to make some rules for consistency. For example, if I don't get out of bed until after 10:30am, I'm counting that as a nap day, regardless of whether or not I take another nap that day. If the only sewing I do on a day is my temp quilt block, that won't count as a sewing day. Also, if I experience a crash, like I did last week at Y, it's a dark grey day, regardless of whether I sewed earlier in the day or not.

 I use little black strips to denote weekends, and thicker black strips to separate the months. For visual interest, I am adding black blocks at the beginning and end of the month rows so that each row technically begins with Sunday, not the 1st.  (I just realized I need to add the black block to the end of January).

TBI Tally, as of January 31:

Previous Posts:
Week 2 Update
A Husband's Perspective (Niels reflects on the 15th anniversary of my TBI)
Week 3 Update (my brain-aversary)

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! You can use the hashtag #tempquiltalong to see what other quilters are doing for their temperature quilts. To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:
Temp Quilt Along  @ Twiddle Tails (click here to see other temperature quilts)



  1. Your temperature quilt with the bonus triangles in the border is going to make a huge impact on the audience. Most people are at least partly visual learners, so this is going to go a long way in showing everyone the impact on your life, 15 years later, of your TBI!

  2. It's interesting to see the way you are tracking your days Jen, and having a visual representation is the perfect way to share how your injury affects you. Good luck on your project. I look forward to watching it come together. Thanks for sharing on MCM!

  3. Wow, Jen - it is absolutely fascinating how you are turning a visual graphic of your experience and your daily temps into a beautiful quilt.

  4. That is a very visual, and effective, way to show your health issues. I admire your fortitude and it will be a beautiful quilt when it is done.

  5. Can't believe we are already done with January! Terrific effort keeping up with all this planning and sewing even though you didn't have many stellar days in the mix.

  6. Your quilt sounds like a great project. My hope is that you will find the sewing therapeutic and find that you end the year with more good days than bad. Thanks for sharing :) MelvaLovesScraps at NolanQualityCustoms dot com

  7. Sorry about your crash! One thing to keep in mind when looking at your quilt is that you have very strict rules about what constitutes a good day, so maybe things are more hopeful than you're feeling. Either way, thank you thank you for sharing this on Wait Loss Wednesday and nagging is more aware of what is like to live with a disability that's hard to see. God bless you.

  8. This is quite the undertaking and what a great visual representation of what you go through on a daily/weekly/monthly basis. My nephew was blind and people just don’t get how hard it is. Bless you in your journey and I was so pleased to hop over here and meet you from Dione’s blog.


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