Who We Are: Coping with Acquired Brain Injury

Sewcialists logo with text reading: 'Who We Are: Coping with Acquired Brain Injury'

This topic is near and dear to my heart (or head?) because I received a concussion 5 months ago and life hasn’t been the same since. Until I shared my own story, I had no idea how many sewists have been through similar trauma, and how common long-lasting effects are! I’ve also received support from so many of you both personally and from your professional experience in many fields. Turns out, when the going gets tough, sewists are exactly who you need around!

Here’s my story, and then some experiences from other community members.

Gillian, Sewcialists co-founder and Editor:

Gillian (30-something, white woman with short brown hair and blue glasses) standing in the snow in a black dress.

I was rear-ended on the drive home from work late in October — my first car accident, and I didn’t quite know what to do! I ended up driving myself home, thinking that I was ok. Well, 5 months later, I’m still only able to work half-time, and not a single day feels “normal”.

In case you are worried, yes, I did go to Emergency that night, and I’ve done everything “right” ever since. For me, what sets a brain injury apart from any other health experience I’ve ever had is that there is no time line set in advance — no “You’ll get this cast off in 6 weeks” to keep you calm! Most people recover form concussions in less than ten days, but if it takes longer, it could be weeks, months or years. I first tried going back to work 5 days after, and didn’t last 20 minutes… and then 5 weeks later I tried “volunteering” at my own job… and got stuck at that stage for 3 months. (Here’s a post I wrote in February, thinking I was almost better… nope!) Every time I try to push, it makes everything worse (anxiety, depression, vision, cognitive ability, everything), but being patient is much easier said than done!

So how did my concussion impact sewing? Well, I saw double until January, and I’ve had 3 new glasses prescriptions. I’m also light sensitive, so screens, reading, and blogging were out for months. I struggle to multitask, I have poor long and short term memory, and to be perfectly honest, all of that makes an over-achiever feel like a failure. Who am I if I can’t work? Or sew, blog twice a week, and run the Sewcialists? I took pride in those things and they were gone.

That said, things have improved. Once I could see clearly enough to serge a seam (not precisely, but who is looking?) I suddenly had a useful, creative thing I could achieve. It made me feel like my old self, and I needed that. The Sewcialists Editorial team did an incredible job taking things over seamlessly for the first few months, and only let me take on small tasks again when I was ready. At this point, sewing and blogging as things I can do well because they happen in my quiet, dim house with no one around me.

I’m impatient to get better, but I’m also grateful for many things. I’m grateful for your support, for the kindness of my online friends, and that my injury wasn’t worse. If I take away anything, it’s empathy for other people whose brains make life harder — we are everywhere, and we don’t “look” sick but we are!

Two photos: Anita (40+ year old white woman with shaved head) hugging her granddaughter (under 10 years old, white girl) AND Anita sitting next to her brother (white man with bald head, white beard, and black glasses).

Anita says,

I’m left handed, which can be interesting when learning crafts. Most people hate teaching left handers as we have to find our own way to do things, and many a teacher has given up on me saying I can’t do things because I’m a lefty, like I’m socially unacceptable. But I’m determined, so I don’t let that stop me. I buy my sewing supplies online as I work long long hours, and have an acquired brain injury or two!

I learnt to sew through lessons around 2 years ago. At school I was deemed hopeless at craft, as the teacher took an instant dislike to me and made me stand in the corridor each lesson. I apparently looked like the young girl her husband had run off with! Such was the way in the large comprehensive school I attended; it never seemed to occur to any of the teachers who said hello to me every week for two years to ask why I was there!

Undeterred, once I had some spare cash as an adult, I found a local lady, Ginn, who ran an independent sewing school to help me. I had a weekly class, and told her I just wanted to be able to make an elasticated waist skirt, thinking I could just make them in all different colours. She smiled and said ‘I hope we can achieve a bit more than that!’ Now, with the help of sewing sites and youtube I make pretty much anything.

I acquired a brain injury through cracking my skull pretty much down the middle in a car accident; then went on to develop epilepsy which further caused me not-insignificant memory issues; and finally I got ME, so now I  get brain fog and sometimes struggle to think clearly . Some days it’s hard to get my words out, and the most bizarre sentences come from me, causing everyone quite a laugh. Inside I find it so embarrassing, but I’ve learnt to laugh and pretend it doesn’t hurt.

Working can be a saviour and a struggle. I run my own health business, but it means some days there’s nothing left for sewing. Those days I pore over ‘sewing porn’ as my husband calls it, and when I feel up to it, I can spend a couple of days of productive sewing. My recent makes are a Comme des Garçons-style coat and a velvet Victorian apron to layer over a chiffon top.

Sewing for me has been the biggest release, and most emotional and therapeutic experience. It has released all the thoughts of creativity I’ve had inside me for years, allowed me to enjoy my flamboyant dress sense, and given me freedom of expression and somewhere to hide. I lost my lovely big brother sadly this past Christmas morning, and afterwards, the only thing I felt I could do was sew, I couldn’t read or talk, couldn’t be with people, but I could sew. It was a sanctuary whilst I recovered from the shock. For that I will always be truly grateful.

Eve from @disabledmakers, says,

I”m very new to sewing and my biggest issue is brain fog (I often forget that the fabric goes in the machine away from you!) so I have to take things very slowly. I have spinal damage from a riding accident and have neurological issues — dysautonomia -— arising from that.

I came to sewing from watching Katie Lavelli in her Inside Number 23 YouTube videos. I love the idea of making my own clothes and having a smaller wardrobe made from ethical fabrics. Having clothes made by me and not in a sweatshop means more to me than store-bought, fast-fashion. Also, as I learn more about cotton production and disasters such as Rana Plaza, I am less and less comfortable with supporting companies using that model.

So far, I’ve made two tops (that don’t fit!) and I’m nearly finished a dress that I was planning to wear to a family wedding last year but didn’t manage to finish in time. I also make project bags and had half a thought about opening an Etsy shop to sell bags and needle cases to knitters, crocheters, and spinners, as that what I know best, but I need to figure out the legalities as I’m on disabled benefits here in the UK.

Light skinned woman with short dark brown hair wearing long robe-style coat that is black with red stripes.

Hilary says,

Five years ago I slipped on an icy footpath and caught my fall entirely with my head. I was diagnosed with a mild traumatic brain injury. I couldn’t stand any light or sound stimulus, lost all control of my emotions, and had trouble accessing my long term memory; my abstract reasoning was gone, and my short term memory was shot (I couldn’t follow the plot of a novel beyond a few pages). This was not only physically painful, but incredibly humbling — I am someone whose ego is very much attached to being smart and here I was with it literally hurting to think.  Recovery was slow and while the worst of the physical symptoms reduced within 2 months, the other thought-based ones took much longer. I did a check-in at the 1 year mark and concluded that although I was much improved, I was not myself, I had slipped into just surviving life not embracing it. 

I threw myself into research into how to recover brain function, and came across Neuroplasticity (the ability of the brain to form new connections and pathways and change how its circuits are wired). One thing that came up in the practical activities was the impact of learning combined with physical coordination, novel and enjoyable experiences, and repetition. Conveniently I just happened to have a hobby that could fulfil this — hello sewing! I had been doing bits of sewing throughout my recovery but I found I was more just plodding through the steps. I had lost some of the ability to problem solve, and flip back and forth between 2d and 3d in my head as I plotted ideas. I started with classes; the structured approach helped initially to rebuild my confidence and keep me focused. I learned to sew with leather, bra making, shoemaking, and a whole lot of new techniques, all with the similar familiar muscle memory of sewing but a new stretch.

Now, five years later, there are some things I still do differently. In sewing and life I like to outsource the “small thoughts” — meaning if there is an app that will help remember the small things I embrace it. Google Keep has become my best bud to track everything from to-do lists, through inspo pics, to my stash. If I need to remember it, you can bet it’s on a note. I also find I’m easily over stimulated. A lot of the background chaos I used to embrace to fuel my creativity has been tempered down so I can more easily focus on the task at hand. I’m back to embracing life. I’m not quite the same me but rather than feeling less than, I’m just different. Not only has my love for sewing grown even more, but in my pursuit for more knowledge I have discovered this wonderful online community which has also lead to great IRL folks too.

About me: I’m Hils, a Kiwi sewist living in Toronto. You can find me at @hilsyb on Instagram or www.tinkeringandtailoring.com!

Two photos: 12 year old white girl wearing pale pink dress, sitting on the floor, AND blue, knitted shrug with light golden colored dog in background.

Last but not least, Amanda shares her story:

My name is Amanda and I have multiple disabilities that affect my every day living, and as a result, my sewing and crafting.

I have post-traumatic stress disorder, sensory processing disorder, vestibular disease, multiple traumatic brain injuries, and rheumatoid arthritis.  Whew, that’s a mouthful.  Essentially I am a shaken baby and abused child that survived to adulthood.  There aren’t many of us out there, or so I’m told.  Most succumb in early adulthood to suicide.  Most that survive to my age (50 is around the corner) are disabled to the point of not being functional.  Naturally, this is all statistically speaking, as I’m sure there are many survivors out there like me who aren’t being counted or heard.  We’ve found our own way through the dark to function the best we can from day to day.  I’m a parent, a musician, a student, and a sewist.  While I do struggle to do these things because of my disability, I’ve found that doing these same things actually help me increase my functionality.

The brain is an incredibly plastic thing, changing and growing every time you learn something new or do something different.  Even a 20 minute walk outside can physically change your brain in positive ways.  There are lots of things I do to help my brain stay as functional as possible, and even grow new connections.  I’ve learned an incredible amount just in the last year  — I had to because I returned to university and had to learn new ways to cope with the extra load on my brain.  New things are being discovered regarding TBI every day, especially now that scientists are dedicating research to preventing disability in kids who engage in contact sports like soccer, boxing, and football.  I plan to share what I’ve learned on my blog, www.mydoglinus.com.  For this post though, I’ll share with you what I do to help manage crafting and sewing projects while coping with brain injury.

  1. I love Post-Its.  I use them to mark my music, my knitting patterns, and my sewing.  Because of memory problems, often coming back from a break in my sewing, even after just an hour, can feel like starting the project from scratch again.  What size was I making my daughter’s dress?  Where did I leave off in the instructions?  This is where post-its come in handy.  I’ll use one standard size post-it to list all the pattern pieces that are being cut from fabric; another standard post-it for pattern pieces that are being cut from interfacing, and a final post-it for those being cut from lining.  I stick these to the pattern instructions.  Then I cross out each piece number or name off the post-it once it’s cut out and marked.  When all the piece numbers are crossed out, I discard the post-it.
  2. Post-it Flags are amazing helpers too.  Before I walk away from sewing for a break, I’ll grab a post-it flag that I’ve labeled “next” or “stopped here” and stick it to the directions in the spot where I left off.  This saves me from having to read the instructions through multiple times to figure out where I left off.  I’ll also use post-it flags to highlight spots on a pattern piece where I’m grading from one size to another, so that they catch my eye as I’m cutting.  I’ll also use them to mark a size line on multi-size patterns if I’m worried that I’ll forget which size I’m cutting out.  Crayola washable markers or Papermate erasable colored pencils are helpful for this as well.  I use erasable pencil on printed pdf patterns and washable markers on tissue patterns.  If there is bleed-through, it easily washes out.
  3. Highlighter pens.  I use these for knitting, crocheting, and cross-stitch diagrams.  I highlight each row on the diagram immediately after completing it.  If I’m having a tough brain day, I’ll even highlight every few stitches as I complete them.  Not having to go back and recount my stitches multiple times saves me loads of time and frustration.
  4. When in doubt, make notes.  I do this with every knitting project.  When the directions say, for example, “continue this pattern for 10 rows,” I will actually write out in the margin of my instructions or on a post-it (there are those handy post-its again) or separate piece of paper, “p20, yo, k2tog,” 10 times.  Then as I complete each of the 10 rows, I’ll cross out a line of instructions.  It seems like extra work but it is much faster that having to recount my completed rows to figure out where I am in a pattern.
  5. Use a croquis.  This is something I’ve only recently started doing but I’m finding it very helpful.  For example, I’m making my daughter a dress for a music competition.  It has a main color, a contrast waist, a contrast lining, and a lace overlay on the sleeves and the waist.  To help me remember exactly what I’m doing and which color fabric is for which section, I created a line drawing of the dress, colored it in with pencils close to the fabric colors, and labeled each area that has a special design feature like the lace overlay.  I can even write in her current measurements on the drawing (she’s 12 and is constantly growing).  My favorite tool for this right now is MyBodyModel because I can put in measurements and it will print out a croquis with proper proportions.  Croquis are also very helpful for mash-ups and frankenpatterns.  I have planned a mash-up between the Paper Theory Adrienne blouse and the Halla Patterns Agnes dress.  So I printed out a croquis, drew the dress as I’m envisioning it, and made notes of where I’m planning to transition from one pattern to the other.

Thank you for reading all of our stories! As you can see, acquired brain injuries can have a huge range of impacts, from temporary to long-lasting. As always with Who We Are posts, I hope that reading gives you insight into other people’s lives, and also confidence to talk about your own experiences. Please share your thoughts down in the comments below!