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.
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 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).
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.
Temp Quilt Along @ Twiddle Tails (click here to see other temperature quilts)
Colour & Inspiration Party @ The Clever Chameleon
Linky Tuesday @ Free Motion by the River
To Do Tuesday @ Stitch All the Things
Let's Bee Social @ Sew Fresh Quilts
Midweek Makers @ Quilt Fabrication
Wait Loss Wednesday @ The Inquiring Quilter
WIP Linky Party @ Silly Mama Quilts
WIPs on Wednesday @ Esther's Blog
Needle & Thread Thursday @ My Quilt Infatuation
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!ReplyDelete
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!ReplyDelete
Wow, Jen - it is absolutely fascinating how you are turning a visual graphic of your experience and your daily temps into a beautiful quilt.ReplyDelete
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.ReplyDelete
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.ReplyDelete
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 comReplyDelete
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.ReplyDelete
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.ReplyDelete