To start, would you be able to tell us a little bit about yourself?
My name is Puja, and I live in Alberta, Canada, and I am a psychotherapist over here. I just had a little one two months ago, and that's what I'm really focused on, trying to adjust to this new life while having symptoms, learning when to pace, and also being there as a proactive mom. I have been an advocate for persons with disabilities for over 19 years. A lot of my work has been in helping people with developmental disabilities, acquired disabilities, and brain injuries, and giving them a place where they can express their voices and creating inclusive communities for them. So that's always been my pride and joy, and it's really helped me through my own concussion experience as well.
Now I’ve experienced what being pregnant and postpartum while having a concussion is like, and it is something that I want to support other people in, so that they can have a relatable space to come to.
I forgot to mention that I am a children's book author. It’s a hobby that I really enjoy and I'm trying to publish another one. When I struggled to write during my concussion, poetry and reciting words were very therapeutic for me, so my husband helped put down those words for me and we created a book together. Words are always so therapeutic.
Would you be able to share whatever you feel comfortable about the nature of your injury and how it was caused?
It’s been a long road with my injury! I’ve spent 7 years recovering from PCS. Let's go to 2016 when my concussion happened. It was a compounded injury, and so I hit my head several times, as an adolescent playing sports. Never had a concussion previously but 2016 was the last straw for my brain. I had so many symptoms at first, but over the years I started to get stronger, and that’s when I decided to get pregnant. However, five days before I was going in to deliver my child, I hit my head, so I reconcussed. It was the most devastating point of my life, because I thought to myself, oh my goodness, I have five days to deliver via C section. How am I going to do this? I was nauseous, I was dizzy, and all my symptoms came back, ranging from visual disturbances, light sensitivity, migraine, to blurry vision. I couldn't use my phone, couldn't read, couldn't write, everything came back, and I thought, “Okay, you gotta really brace yourself”.
Luckily I found strong nausea medicine that they give to pregnant women, which helped my symptoms. However, I delivered my baby with a migraine, and that was the first time in my seven years of history that medical staff were so kind to me. Unfortunately, previously throughout my concussion, I didn't receive the right support from medical professionals. Neurologists would often tell me, “it’s anxiety” or tell me “there's nothing wrong with you”. But during this time, when I was pregnant and about to deliver, I had the most amazing amount of prayers and support, so that really got me through it, and I think that's why it was a quicker recovery.
I'm still having to go through various therapies again. I kind of put that on the back burner because I'm going through postpartum. I had to remind myself that I’ve been here before I’ve got the tools. This doesn't have to be a life sentence or another seven years of recovery. You can do this within a couple of months. When I first got concussed, it was so frightening. I took away the fear this time, because I realised that just held me back.
What were some of the routines that were helpful in managing your symptoms during your recovery process?
During the first concussion, I built a tool kit which I am relying on to get me through my current concussion. But during that time, it was very, very tricky to find support. And that's why it was really prolonged for me, because there wasn't support till the end. At the mark of five years, I found vision therapy, got it into a proper acupuncturist, and learned about cranial sacral therapy, which is still my healing modality today. I have to get really immersed into vision therapy because I know I need it a lot. It was getting my neck strengthened and finding the right physiotherapy that helped me a lot. It took me about five or six years to find the right physiotherapy who trusted and believed in me. Being believed is so crucial. Continue to believe in yourself and others will eventually believe in you. There's so many people who would tell me, don't fake your symptoms or talk about secondary gains. But I wasn't. No one wants to live like that. I wanted my life back desperately.
Eventually, things became more advanced in my city, and I got the right supports at the very end, and I'm going to continue those supports. I really love somatic therapies. During my first concussion, I took upon myself to learn somatic therapy to rid my body of the trauma that I know it was holding on to, especially my shoulders were always really raised, and that was my body protecting me during that time. I had to consciously lower my shoulders and work on my nervous system. I became trained in that as a mental health therapist, in helping people with concussions. Now I want to help moms with concussions go through the healing process, and really becoming friends with your body, because you become so detached from it when you have a concussion. Talk therapy didn't work for me, but body oriented types really worked.
You mentioned that at the beginning of your journey of recovery, there was a lack of support from the healthcare system. How do you think that the healthcare system can be improved to better support individuals recovering from brain injuries?
I think it's so important that there's education. Because what ends up happening is that family tends to listen to the healthcare professional. They're seen as the authority, they're the ones that are all knowing in their field. But the fact is, it's not true. There's very little that some professionals know about concussions, and it's important that you're listening to the expert, and that's the person going through the situation. Listening to someone's lived experience is really powerful in leading them in the right direction of care. It comes down to knowing that this is a multi disciplinary method of healing, and knowing the right referrals if it is not within your scope of practice.
Are there any important insights that you've learned from your journey of recovering?
There's a lot of grief. With a brain injury, there is a loss of identity, a loss of dignity, and a loss of sense of self. There's so much rebuilding that has to happen. Take time to see a psychologist who deals with the trauma and the grief that might be holding you back from your recovery.
Take pictures of your progress because I think it's really important to understand the strides that you're making. Also for family members to take pictures of the time that you're missing out on, which will help with the grief, because you can go back and you can relive those moments vicariously through those pictures if you were unable to be there. The whole idea of picture therapy is so important, because you're able to see the bigger picture, when you're looking at pictures in front of you. That was really powerful piece for me, because I couldn't look at visual stimulation for six years, and when my brain got better, I was able to see what my family had done in that time. It helped me understand their own grief and help me make my way through everything that I missed.
Another insight I learned is about your support system. You need a variety of people in your life - someone who's a doer who can do tasks for you and someone who's a listener in your life. The caregiver piece is big, and it’s an ambiguous loss for that person in your life. You’re physically there but you're psychologically not there, due to your injury. It's important that caregivers bring a piece of you when they're out, whether it's verbal, whether it's something that you own, a reminder that they're bringing your spirit with them. They're bringing your spirit alive, that they're still connecting to you, which. is really important for caregiver burnout, to keep that person psychologically still very present for you.
It's helpful to revert back to what worked for you, even in your childhood. For me, it was returning to creative outlets like poetry. I always say, like when life falls apart into pieces, you know that's your opportunity to collect those pieces and create a masterpiece. This is your opportunity to be as creative as you can in your healing. I see people with brain injuries as the most creative people because we have to learn how to work around life. We always have to invent a new way of doing, of living and being. Sometimes your pain is the greatest source of your power, and that's what I found. Stay creative, you will find a new way to live and there's always a different way to live again.
Is there anything else that you'd like to discuss that we maybe haven't touched on quite yet?
Find a community or anyone out there with a concussion. That's really important. That really saved me a lot, the community on Instagram. It was so beautiful because I finally found people who were like me and who had PCS. I wasn't an anomaly. I was just being compared to the wrong group of people. I was able to use my phone again. I started to see a community of people, and it was so supportive. That community helped me learn that recovery is not a linear process. It's got a lot of windy roads, but you will get there.