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:
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!
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.
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!
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.
- 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.
- 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.
- 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.
- 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.
- 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!
This. Is a wonderful post. Thank you all for sharing your experiences, I wish you well.
Wonderfully encouraging post. I think you are all persistent super heroes, and salute you !
It’s great to hear about your experiences, including how it’s interacted with your sewing. My brother has an acquired brain injury (from a near-fatal motorbike accident) and it’s astonishing from the outside to see how it truly impacts every part of his life, and how much the effects and magnitude differ from person to person. Much love to you all.
Thanks everyone for sharing your stories.
I LOVE this post. I have learned so much – not least of which is that invisible illness is outrageously prevalent. I do not have an acquired brain injury but my brain works within the prism of dysautonomia and CNS dysregulation causing significant pain, arrhythmia and tremendous over-stimulation (to entirely understate the situation). This ain’t my brain on injury – this is how I’m wired. Sometimes I wish I could accredit it to something hazardous that has occurred to me because it’s hard to be different for absolutely no good reason. But I’m so happy that people are speaking out because it makes me aware that, no matter the cause, I’m not alone in my experience.
When you are ready, I would LOVE to have you write a post in this Who We Are series about they way you are wired, and how you are figuring yourself out over the years. You write about it so well on your blog! I completely sympathise with you wishing there was some clear reason for your struggles – I’ve wished that I had a broken leg instead of a squished brain, because people could see and understand it!
Thank you so much for that offer – I don’t know that I have enough perspective at this point but, hey, that’s what this year has been about and I am so truly grateful to have the space to think. I do get concerned that I sound very miserable on the blog sometimes 🙂 and that’s not the vibe I’m going for!
All your stories are amazing. Thank you for sharing. Wishing you constant enjoyment as you sew.
Thank you for all those fascinating stories. I just wanted to point out that one of my favorite kntting designers https://kddandco.com/ transformed from an academic to a knit designer when she had a massive stroke at 36. Many interesting posts about her progress in her blog.
Have you read Kate’s book Handywoman? It’s life changing and I’m not exaggerating. I do hope she’s back to posting (and good health) soon. That’s the thing about brain injuries – they can be very sneaky.
What a great post! Brain changes and challenges are often misunderstood, especially in adults. Thank you again!
Absolutely brilliant post. Thanks so much for sharing x
Thanks for sharing your stories and experience with living with an ABI. I have one also (‘bad’ reaction to a travel vaccination) and it affects every aspect of life, an invisible disability.
Inclusivity has become a recent ‘buzzword’ but I’m feeling increasingly excluded as the world has gone crazy with noise (and light) levels and things that ‘flash’ 🙂
Thanks for the kindness shared here.
Thank you for writing this. I am a Recreation Therapist and have been working with people with brain injuries for many years. I especially appreciate you supporting the classification of concussions as brain injures. So many still believe concussions are no big deal when in fact they can cause very serious issues that don’t just go away. The idea of sewing being a major factor in recovery and finding “normal” again is exactly what Recreation Therapy IS! Really love that this conversation is happening!
Not me, but my husband is an amazing example of brain plasticity. A couple of years ago, he was diagnosed with a brain tumour (benign, thank goodness), and our lives fell apart. He was told that it has grown too large to be operated on by laser reduction, and if it wasn’t removed, he’d be dead in 10 years or less (he was 47 at the time). He had an operation 2 months later to remove it, and during the course of that operation, the main nerve to the right side of his face was accidentally severed (it’s a known risk in that kind of operation), leaving him completely paralysed from forehead to chin on the right side of his face, including the inability to close that eye. 6 weeks later, he was back in surgery for a groundbreaking operation to connect a jaw nerve into the disconnected facial nerve. He has since had to completely relearn how to speak, use his facial muscles, and blink. This involved re-training his brain to understand that clenching his jaw muscle on that side would result in him smiling, blinking, and so on. It took around 12 months, and when we look back at a couple of videos he made of himself immediately post-operation, it’s absolutely amazing how far he has come. Anyone looking at him now wouldn’t know how immovable his face was.
It’s not a easy journey, I understand everything!
My brain injury is due to extreme hypoxia and a prolonged high fever caused by septic streptococcus pneumonia that progressed to ARDS. Two weeks on a respirator changed everything. I got a bit weepy when I read how many others have problems with noise, light, and too many people. For me, it’s relearning complex knitting that’s helping. I do have brain fog from an autoimmune disease and I’ve had to learn that it’s better to take a break than try to bull my way through, it’s not being weak, it’s actually being strong.
Let me say first how sorry I am that this happened to you and my best wishes for a speedy recovery! I had 2 strokes 12 years ago which I have made a recovery from and would like to give you some suggestions that worked for me. Go outside every day for a walk if you can. Nature is a great healer and gives you a good perspective on life. Write down everything. Memory loss is so frustrating, and leads to an emotional distress that can seem overwhelming. Be kind to yourself, you cannot speed up the brains’ healing, it will form new pathways but this may take a long time, but it continues to happen. Sewing is great hobby, however some of the demands make it difficult to achieve success. Use every tool that you can to help you. Seam guides, brighter lights for your machine-around the area, marking off each item as you go-each step will help you. Some days it will work, some days it will not. Keep trying, this is the most important thing. Each week, try one more thing that was not achievable before .Lean on your family and friends for support. Surround yourself with people who understand your injury and support you. Good luck! I learned to quilt after my strokes and sure didn’t achieve perfection but keep trying to learn, the brain is an amazing organ.
It was nearly 2:00 am when I saw your post in my email…it was PERFECT timing! Several years ago I suffered a severe concussion. Though late at night, I had just finished writing a friend a long list of things to be aware of around concussion: that very day her mother had received a Gr. 2 concussion. My friend mentioned how her Mom wanted to return to work within a couple of days – Yikes! I attached the blog’s web address of the post to my message, and sent it on to my friend.
This blogpost summed up so very much: sometimes to hear the struggles others have had helps the reality and magnitude sink in as to what a brain injury is truly like. Hopefully she will learn to be gentle with herself.
Thank you for this blogpost: God bless all you ladies for sharing.
That is so lovely to hear!!! I hope she recovers quickly, and is kind to her brain!
[…] Sorry for the foggy details – you’ll understand if you’ve read about my slow concussion recovery! […]
I was hit by a truck on my bike. Right leg was broken, my helmet cracked, bruises and scrapes all about me. My concussion wasn’t address for a month!!! When I was sitting in the Dr’s office and he said “I’m here to talk about your head injury” and then went on to list off the signs of a concussion. My adult daughter started crying, “why did it take you so long to say something about it!!! She thought she was going crazy!!!!” Had my head injury been addressed at the same time as my broken leg/knee/life I would have done many things different. The good news is that our brains heal a bit, it takes time. Thank you for addressing we “You Look Fine” part of an injury. Best wished to you!!
Thank you for sharing your story. As a brain injury specialist care provider, we are very vocal in raising awareness. So the more you share, the better for everyone else who may have to go through this experience. Keep well!
[…] affect your sewing?”, and boy did you have answers! We have already shared posts on “Coping with Acquired Brain Injury” and “Every Brain is Different“, and here is our third […]