Quilt #137 :: Year 15 (TBI Temperature Quilt)

Hi friends! I had grand plans to write a big long blog post today to reveal my first finish of the year, and a very personal one at that. I am very happy to announce that my epic 2019 quilt chronicling my 15th year as a brain injury survivor is finished!

I actually finished it on the 11th, just in time to submit it to a local quilt show. Woo hoo! Bucket list itemed crossed off! Because I only had 10 days to finish the quilt after making the last block on January 1--including hand sewing the binding and sleeve...and learning how to hand bind and make the sleeve...and starting it the day before the quilt was due...I didn't have time or brain power to take a good picture of the finished quilt. 

However, in a few weeks, I will get to see my quilt hung in a real live quilt show and you can bet I will be taking lots of pictures hung up while it's on display. 

I have much more to say, but my brain is still not playing well with my words after all the December craziness, so it will have to wait. In the meantime, I wanted to share my quilt today because it is my brain-aversary today! My brain injury is sweet sixteen!

This is what I shared on Facebook today:

My brain injury is 16 years old today! Sometimes I miss my pre-TBI life. I’d like to be able to drive whenever and wherever I want. I’d like to be able to trust my brain to keep up when I’m in public or in situations that trigger my symptoms. I’d like to be able to make plans without caveats. I wish I was able to have written more books. I wish I could make more memories. I wish I could avoid my crashes and headaches and vertigo and blurry vision and fatigue. But, mostly I am grateful. I have a husband who loves and advocates for me. I have a son who challenges and inspires me. I have friends who accept my flakiness and welcome my spontaneous invitations. My mom lives with us and shares her silly pup with us. We have a beautiful home with a long table and comfortable guest room. I have discovered quilting, which gives me an outlet for creativity and generosity. I am happy and content.

So, please come back again to hear more about this quilt, see pictures of the show, and discover what I learned about (still) living with a brain injury. 

**Updated 6/2/2020**

My goodness! What a year it's been! My brain completely pooped out for about 6 weeks after I finished this quilt. I just couldn't shake the cobwebs and spent most of 6 weeks in bed. I finally started feeling better at the end of February and the COVID hit. Fortunately, our family has stayed well, but my sew-jo has been lacking as adjusted to having everyone home all day, supervising D's on learning, and so much cleaning.

But I'm back and hoping that our summer at home will be just the stability I need to get back into the quilting swing of things.

My TBI quilt was accepted into the quilt show and it was quite a thrill to see it among so many quilt.

Linked to:

Brain Injury Quilt :: Week 3 (15th Brain-aversary!)

January 21, 2019 marks 15th anniversary of the day I slipped on ice and broke my brain. My hubby wrote a nice post on this blog yesterday about what it's like being married to someone with a brain injury.  My own thoughts were a little too jumbled with emotions to write what I was feeling, though I have written about it in the past for my 10th anniversary and 9th anniversary.

It's kind of nice in a slightly morbid way that there is always a week in January that starts with my birthday and ends with celebrating the birth of Jen 2.0. 

The boys made me feel loved all day and after dinner, the server brought me a special cupcake.

Of course, it was this milestone of 15 years as a brain injury survivor that inspired this quilt project for 2019. For my January 21st block, I wanted to make something to denote the significance of the day. My free motion isn't good enough to make a brain, so I landed on a brain injury awareness ribbon. Unfortunately, my attempt at using an actual ribbon--only a 1/4" wide!--just aggravated my machine.

Next, I cut out a length of fabric and twisted it into a ribbon. It was pretty frayed given the skinny width, so I tried singe it like I would a ribbon. That was also a fail.

I also tried making cutting a 2D ribbon, but it ended up looking like a stick person with no arms.

Finally, I had the idea to make a binding strip to enclose the raw edges. Success!

I'm not sure how often I will make updates of my year's epic quilt, my TBI Temperature Quilt, but as long as I am making tweaks to the process, or do something new, I will share my thought process with an update. And I will make monthly updates to show progress and give a TBI tally to show how my brain injury has affected my ability to sew and my need to sleep each day. Of course, if our #tempquiltalong host, Twiddle Tails, has a weekly link up, I will do my best to make a weekly post.

Previous Updates:

January 1 :: Introduction

January 14 :: Week 2

As I started my third week of the quilt, I made one big format change that required re-doing some blocks, and I make my first special block. 

I started off the week with my 47th birthday. I decided I wanted to denote significant days, particularly ones related to my brain injury. My TBI was not severe that my life was ever in jeopardy, only the quality of my life. Still, I'm pretty happy to still be around celebrating my birthday. There was a brief period during my recovery when I felt like I was losing everything and I wondered what value I could still contribute to the world. I am very grateful that I have made a family with husband, Niels, and our son, D. And of course, quilting has made me a giver in a way that balances all the ways I am a taker in so many ways. 

I kept the icon simple. Just an appliqued 47.

While I was sewing those teeny tiny stitches (the width of each line of the letters is only 1/4"!), I realized that I made a mistake in how I arranged the centers of my geese. 

This makes a lot more sense because if the center of my goose is gray, it points down, and I can easily see that I did not sew that day. If the center is purple, then it points up, and I know I did sew that day.

Of course that meant I had to redo my birthday block. Did I mention how tiny the numbers are?

The other change has to do with my border idea. I have been the HSTs from clipping the wings and turning them into chevrons.

I wasn't loving the way that looked, so I came up with the idea of sorting them by the center triangle (how I felt that day). Something like this, with a row for each center color, and travel days (not to scale below) on the sides. 

So I took apart the HSTs that I had just sewed together the day before and sorted them by center color.

But then, because I changed the centers, I had to redo the light grays and light purples. Argh!!

Time-consuming, but I like this better.

I made myself some reminders so I don't mess up in the future. Even though we usually "high and low" instead of "low and high" when referring to temperatures, it makes sense to me that visually, the low temperature would be on left and the high on the right.

For the border chevrons, I usued the same idea. The higher side of the chevron is the higher temperature and the lower half is the lower temperature,

Here's to good days ahead and no more changes!!

TBI Tally, as of January 21:

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. To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:
Temp Quilt Along (Week 3) @ Twiddle Tails (click here to see other temperature quilts)

Tuesday
Color & Inspiration Tuesday @ The Clever Chameleon
Linky Tuesday @ Free Motion By 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

Thursday
Needle & Thread Thursday @ My Quilt Infatuation

Friday
Finished or Not Friday @ Busy Hands Quilts
Off the Wall Friday @ Nina Marie
Whoop Whoop Friday @ Confessions of a Fabric Addict

Saturday
Scrappy Happy Saturday @ So Scrappy
Show Off Saturday @ Sew Can She
UFO Busting @ The Madd Quilter

Sunday
Oh Scrap! @ Quilting is More Fun than Housework

15 Years! A Husband's Thoughts on Living with a Brain Injury

Credit: Amber McKenna (I think!)

Hi readers!This is Niels, taking over the blog today for Jen.

Today is the 15th anniversary of my wife's first Traumatic Brain Injury (TBI). She's had 2 more since then but Jan 20, 2004 was one of the most impactful dates in her life. That was the day her previous normal was shattered, and the beginning of many new firsts.

Usually Jen writes something to commemorate these milestones, but this year, not-so-ironically, her brain is a little extra foggy and she is having trouble getting the words out. So, she asked me to write a bit about what it's like to be married to someone with a brain injury.

Starting off, keep in mind that having a TBI is a massive trust exercise as - especially the first year(s) - my wife couldn't trust herself to remember even basic things we usually take for granted. Besides the obvious items of massive headaches and other odd brain-related issues, she had challenges with even the most mundane of everyday tasks such as getting dressed. Sometimes, when she got undergarments and regular clothes on, she put the undergarments over her regular clothes. More than once, she would leave the front door open after letting her dog out in the dead of winter in Michigan. One time she nearly blew up the neighborhood as she left on the gas on her stove in her condo.  (Fortunately, her friends had her call the gas company when she wasn't feeling better!) While every brain injury will be different, little things like that will happen.

That's where the trust exercise starts as every TBI survivor will now have to rely on others for daily tasks from day one. It will be frustrating as it will mean you not only have to start healing your injury, you also have to start learning things again, perhaps in very different ways. And that's one of the reasons why a TBI survivor needs all the help he/she can get. One might not always see the need for help, but one of the first firsts is to realize you can't do it alone.

For my wife this was especially tough. I hadn't met her yet. Her mother lived in another state and her father in yet another. She was lucky she had some close friends to fall back on and the ability to attend a first-rate Brain Injury Center in her own town. While on the topic of friends, you will see scores of them fall by the wayside as you'll not be able to do anything but receive for a while. You'll also see TBI patients be 'flaky'. They may look "normal" on the outside, but they are different that they person you knew. They simply forget appointments as their brains are far too busy with the healing process and trying to make sense again of everyday tasks. They will need lots of grace, especially in the early months. Jen has often said that one of the hardest parts of healing from an "invisible" injury is trying to keep up with the expectations of others that you are more healed than you are. 

Let's fast-forward a couple of years. It's now 2006 and my wife was able to regain most of her independence, but was forced to give up her previous work life as both a published author and an associate marketing director at a major book publishing company in Michigan. I met her through 1-800-stud.com (our inside joke) a.k.a. Match.com and was faced with a dating reality that was very different. Not just because of her TBI but also that she had to trust yet another person.

Almost one year later we figured it all out and were married in July of 2007. Our son was born in December in 2008. That doesn't mean that all was well related to her TBI. The pregnancy in particular was really, really tough as she couldn't take the medications that helped her function better. We all had to learn that a TBI is permanent, a new normal and that any and all additional hits to her head would inevitably add to her limitations. There were lots of steps forward but also a number of steps backward. We were now parents and my wife had a sense of purpose again and felt a camaraderie with other sleep-deprived stay-at-home moms. But when our son started school full-time, a depression was looming until  she was able to find a new hobby that she embraced with the same tenacity she once did in her previous life. But it was different.

She was a creative talent (an author) and not only did the TBI take her ability to write, but it also took her stamina and consistency. That was perhaps one of the hardest 'new normal' we had to deal with. She has bursts of creative juices flowing and would be in bed with a debilitating headache for the next couple of days. That inconsistency is something that will most likely never go away.

How does all this impact the Significant Other (SO) which in this case is me? I'm not only the husband to my wife and the father to our son but sometimes I have to play the referee in situations where she simply doesn't see she's hitting a TBI-related wall without slowing down. Having bursts of energy can very easily lead to trying to push too hard to get things done before the energy dissipates. This is tough as you also don't want to stifle the creative juices too much as they only flow on limited occasions.

A big part of our marriage dynamic is that Jen has to trust me when I tell her that I see a crash coming. (There are signs I see like a certain look on her face, her eyes not focusing as well, her words slurring a bit). I know how sacred that trust is and am careful not to abuse it or take it for granted. We are a team and we are both better when Jen is able to have a good day.

This 3rd job (the referee) is a critical one as it helps all of us to remain a functional family. As her husband, I can see when she might run head-long into a TBI crash and have to tell her to stop or even to hit the hay. This is a more an art than a science, I don't want to seem like I am bossing Jen around, so we have learned to talk about the TBI with humor.

I think of it like an engineer, which I am by trade. Getting plenty of rest is a critical piece to help a TBI survivor have more good days. Slowing down that engine just a bit will make it run just a little longer on that same amount of gas. Funny thing is that our ten-year-old son seems to sense these situations as well and has sent her to bed on a few occasions when he came home from school and saw how she was acting.

All-in-all, our family life is not too different now from family life between neurotypical family members as have we learned to control her environment. Not just telling her to slow down at times but also to help reduce the headache triggers. Simple things such as reducing noise in the house (no hardwood throughout... sorry HGTV!), make sure you don't plan too many activities in busy places and definitely not too many on the same day. We give her lots of ability to rest in between vacation days, in new places and choose to drive to most destinations inside the US and Canada as airports are the worst for sensory overload. Basically we do everything we can to reduce stress and stressful situations. 

All of these things combined allow her to function almost normally to the casual outside observer and allowed her to find a new way to be creative as one of the more prolific and creative modern quilters I know (yeah, I know I'm biased but I'm running with it anyway...). It is very rewarding to see how controlling her environment, slowing her down when needed and the proper medication (Botox to reduce headaches and some brain stimulants) make her function to a level where she can be a contributing member of society again. Her quilts (never sold, always given away and almost never commissioned - too much pressure) have found homes in multiple continents, multiple countries and numerous states and provinces, and have provided comfort to those in need and joy to those we love. I know it has given her great joy to feel like a giver again, and to be able to show appreciation to those who have accepted her as she is now.

While we really didn't want to have to celebrate a TBI anniversary, it does allow the occasional retrospective that I hope might help some other SOs caring for brain-injured loved ones and to tell you that with patience, help from friends and family and a little bit of perseverance you can create that new normal, a new comfort zone and a life worth living despite that pesky TBI.

I love you, Sweetie, and we'll get you an almond-flavored cake to celebrate as soon as winter storm Harper moves on.

By the way, Jen is commemorating her 15th year post-TBI with an epic quilt, one she will finally keep for herself.

You can encourage her throughout the year and see her progress on Instagram at #TBITempQuilt. To see what she's currently working on, follow me at deJongDreamHouse.

Linked to:

Brain Injury Quilt Update: First Two Weeks

Sometime last year I realized that 2019 will mark the 15th anniversary of my brain injury. No pun intended, but I've been having a hard time wrapping my brain around that fact! I decided that I would honor the anniversary with a special quilt. I love the idea of temperature quilts that so many fiber artists have made for years and when I noticed that Twiddle Tails was hosting a temperature quilt along, it was just the motivation I needed to get started. You can read about my initial ideas in my original post. 

As you can see from the photo above, January started strong as a new year always inspires me. But the last few days have been pretty rough with three gray days pointing down. Yesterday was particularly bad as my headache worsened into what I call electric headaches where it feels like I'm being shocked as I feel a current moving through the back of my brain. The only time I was up was when I went to get my mammogram. Pretty bad when that's the highlight of the day. I was home by noon and didn't get out til this morning. 

Today is my 47th birthday! Waking up to my boys singing happy birthday, giving me cards--D's was written in invisible ink!, receiving my gifts of a new dust buster and a pack of purple pens, and of course a flood of birthday wishes from Facebook friends around the world was just what I needed to give this headache the heave ho! MAYBE I can sew today, but first, I want to give an update of my quilt now that I'm two weeks into the project and have had time to working on the project.

To review. 

I am making one flying goose for each day. The wings will denote the daily low (right) and high (left). I have prints picked out in 10 degree (F) increments, which everything below 0 and above 100 included in the outlier colors. I live in Ohio where those extremes are rare. For consistencies sake, I am using weather underground for my daily temperatures at our local airport, regardless of whether I am home or not. 

The center triangles of the geese with indicate how my brain injury affected me that day.  There are 7 options (slightly modified from my first post). Each brain injury is different. My brain injury affects my vision and causes headaches daily, the only difference is severity. When I am symptomatic (due to being in situations that cause my brain to flood, such as loud places, blinking lights, stress, lack of sleep, busy places, too much going on, multi-tasking etc.), I am prone to aphasia (where the words I want to say don't come out right), stuttering, and an inability to take in information or respond. When I am symptomatic, Niels sends me to bed, makes sure the room is dark, gives me the meds I try to avoid, sprays peppermint everywhere, and makes me rest. He is a wonderful caretaker. D, newly 10, also recognizes the signs and knows when to send me to bed. He's a little overzealous at times because my bad brain days mean extra tech time for him!

That said, I defined my brain day categories like this:

Dark Gray - arrow points down - Bad brain day. Primarily stayed in bed. New sewing or other household activities. 

Medium Gray - arrow points down - Painful day. Needed a nap, and not able to rally enough to sew.

Light Gray - arrow points up - Didn't take a nap, but no time or energy to sew. 

Light Purple - arrow points down - Took a nap, but still able to sew a bit.

Medium Purple - arrow points up - No nap, but was able to sew a bit. 

Dark Purple - arrow points up - No nap, and was able to sew at least four hours. A rare, really great day.

Purple & Gray - arrow points down - Travel day. I may have napped or not, but I didn't sew because I wasn't home. For example, we will be going to the Netherlands to see my in-laws this summer. I know I won't sew while I'm there, and will have good and bad days, but it's a different animal than when I am home.

In short, if I was able to sew, the arrow points up. If I don't sew, for whatever reason, the arrow points down. I also decided that if the only sewing I do is the five minutes to make my daily goose, that won't count as a sewing day because unless I'm feeling exceptionally bad, I can make that happen.

As I've started this quilt, I'm also finishing the latest Bonnie Hunter Quiltville Mystery Quilt, Good Fortune.  One of the tips I learned from heris to save the clipped triangles from my geese to make half square triangles. 

I can't believe I found all the little pieces in the tote when I had the idea nine days into the year!

I'm thinking about using the HSTs to make chevrons for the border.

Another idea would be to put all of the like colors together at the end of the year to show how many of each type of day I've had. I'm leaning towards that idea at the moment. I've sewed together the chevrons I have so far, but they can easily be undone because I've written each day on the back of each flying geese and HST chevron.

Because I have the basic template for the quilt decided, I am sewing together each days block after I make it. The quilt will have 12 columns with the days of each month making up the rows. Each column is staggered to indicate the day of the weeks on which the month begins.

January starts on a Tuesday, so there is a 4.5" square block at the top of the column.

I also decided to set off the weekends with 1.5" x 4.5" strips because I want to see if there is a difference when my boys are around and we may or may not be out and about. 

The one thing I haven't quite figure out yet is how I want to indicate special days. Like today for example. I'm thinking I will either applique or hand stitch a 47 on today's center triangle. And the on the 21st is my big brain anniversary so I want to do something special there too. I have lots of special days, but I will limit to ones that affect my brain injury and quilting. So maybe I will find an icon to use when I finish a quilt. Any ideas?

A few tools that are going to make this project go smoother. 

1. Ultimate Flying Geese Tool. I bought this awhile ago and I am finally able to make perfect geese every time.

2. Craft Mallet. Not only is this a great tool for smoothing out thick seams, but it's also cheap therapy!

3. My chart! I keep this chart with my pre-cut fabric and color guides. I know that there will be times I get behind and between weather underground and this, I will be able to easily catch up.

TBI Tally, as of January 14:

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. To see what I'm currently working on, follow me at deJongDreamHouse.

Linked to:

Monday
BOMs Aways @ What A Hoot
Design Wall Monday @ Small Quilts & Doll Quilts
Main Crush Monday @ Cooking Up Quilts
Monday Making @ Love Laugh Quilt
Moving It Forward @ Em's Scrap Bag
What I Made Monday @ Pretty Piney

Tuesday
Temp Quilt Along @ Twiddle Tails (click here to see more temperature quilts)
Color & Inspiration Tuesday @ The Clever Chameleon
Linky Tuesday @ Free Motion By 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 Linky @ Silly Mama Quilts
WIPs on Wednesday @ Esther's Blog

Thursday
Needle & Thread Thursday @ My Quilt Infatuation

Friday
Of the Wall Friday @ Nina Marie
Whoop Whoop Friday @ Confessions of a Fabric Addict

Saturday
Show Off Saturday @ Sew Can She
UFO Busting @ The Madd Quilter