Interview with Emma Perepelkin
Please tell me about yourself.
My name is Emma and I'm from British Columbia, Canada. I am 29 years old and a stay at home mom. I used to be an equipment operator at a local sawmill. My partner and I share a daughter, Ava, who is 2 years old.
What is the nature of your injury and how was it caused?
On July 25, 2022, I was 31 weeks pregnant when my partner and I decided to go for an e-bike ride around the neighborhood. In my neighbourhood there is a steep hill, and when I was coming down the hill my brakes failed. I looked down at my speedometer and I was doing 30 km/h with no brakes. There was a blind corner coming and I was freaking out. I looked ahead and there was an oncoming car. So, my partner starts to panic and I realize I need to figure out how to crash without hurting myself or the baby too badly or if I'm going to ride out the rest of the hill, and then it goes black. Apparently, according to my partner, I was screaming coming down the hill and crashed head first into a cement barricade, and went flying over and landed on my head. I was unconscious, foaming at the mouth in front of him. Thankfully, I didn't get hit by the car! We had a bunch of neighbors come and help out. Thankfully, there was a nurse that was there to calm him down. My head was facing downhill and they thought that if I might have internal bleeding, they should reposition me in case there was blood pooling in my head. Then, the ambulance came and rushed me to the hospital. I had a bunch of CT scans done and then they transferred me to a bigger hospital. I was airlifted to Kelowna hospital with the HEART team, where I stayed there for 5 weeks. So, I spent my entire last trimester in the hospital; and, the baby was okay and thriving this entire time!
At the end of it all, I had 3 brain bleeds, a broken collarbone in 4 places, 2 compression fractures in my spine, a dislocated rib and a cracked rib. Because of the brain bleeds, I was paralyzed on the left side of my body for almost a month. Once the swelling started to come down in my brain, I had to relearn how to walk and how to use my left hand again.
Did the doctors know that the paralysis was temporary?
They weren’t sure. They thought it was possible it could be temporary but at one point, they thought I was having something similar to a stroke. In total, I had 6 CT scans, a few to make sure I wasn't experiencing something similar to a stroke, and a few to see if there were other causes, everything but the bleeds eventually ruled out. It was determined that the paralysis was due to the brain bleeds. They said when the swelling came down, it might return back to normal.
I only really remember the last 2 weeks I was in the hospital, it was a slow go trying to get my hand to work again, and it's still recovering. I had to slowly learn how to use it again, even after 2 years, it still has a couple of quirks. For walking, I had a dream that I was able to walk and then I woke up from my sleep and I was determined to walk. So, step by step and very slowly, I walked and I shocked my entire medical team. It was so emotional and wild for everyone. It was an overnight thing for my legs to get back to moving, slowly.
Do you still experience any symptoms from your injury?
Yes. The biggest symptom I struggle with daily is impulsivity. I also get overstimulated. I can get very angry and emotional and irritable and my left hand still does some weird things. I make poor judgment calls, I find I'm lacking empathy, I get thunderclap headaches and when I am really fatigued, the symptoms will get worse. I have brain fog and my short term memory has been affected. My mental stamina has improved a lot but I still need to take a nap during the day. My left side still gets fatigued. If I am out for a walk, my left leg will start to drag. My balance has improved quite a bit thanks to occupational therapy and vision therapy, those two therapies are a game changer. Also, when I get overstimulated, I get this feeling of a rock or a grain in my left eye and it hurts really bad. So, I have to wear my prism glasses to help it calm down. I was also told that my emotions now are similar to a toddlers’ so when I laugh and cry, I laugh and cry really hard. I also have no filter, so I just say whatever comes to my head. I am trying to work on this as well as being able to control my facial expressions.
Where exactly did you sustain your injury to your head?
The right side of my head was injured which is why the left side of my body was affected. It was the frontal lobe and the parietal lobe. I had one big brain bleed on the top of my head, one a bit below and another one on the front.
What are your routines that have allowed you to cope with your symptoms?
I rely on schedules, routine and making lists. My calendar and notes app on my phone are always full. I also find it helpful to repeatedly write out a list. So, I will have a list on my phone as well as on a sticky note so I don’t forget. My prism glasses, supplements, taking naps and listening to my body all help too.
What were/are steps you are taking to recover from your injury?
I have done occupational therapy on and off for 2 years. I actually graduated a couple months ago from my occupational therapy which was a big win! I am also super thankful for social media. I created a blog which was very helpful for my mental health. This was definitely the biggest first step. I also recently created an instagram profile so people can follow my journey. The instagram community for TBIs and concussions is amazing! It is so important to get your story out there. Through this, I learned about vision therapy, which was a game changer. I did 10 weeks of this therapy and my overstimulation has decreased, and my mental stamina has improved. Before vision therapy, I was not able to drive to Kelowna from home which is about 4 hours. Just the drive alone would make me exhausted for 3 days after the trip. Now, I can go to Kelowna, go to my appointments, go shopping, come home and only be down for the count for about a day. When I hit my head, the Vision therapist thinks I overstretched my left eye which resulted in my left eye working harder than my right eye which is why I would experience overstimulation. Getting the prism glasses to address this was a huge help. I also had some balance issues. When I got out of the hospital, I did have a cane for a few weeks. I couldn't walk up and down the stairs properly. I always needed a hand railing. With occupational and vision therapy, my balance is better than it has ever been.
I am also a part of a concussed moms support group that is run by the Concussion Legacy Foundation. Once a month, they hold a zoom meeting to connect concussed moms from around the whole world where they rotate one mom having the opportunity to share their story with everyone.
Other than your partner, is there anyone else that has supported you through your journey?
Yes! All of my close friends have been amazing and I am so incredibly grateful they have accepted this new version of myself because I am still trying to accept that. My parents have been so amazing. They were bedside with me in the hospital the whole time as well as my partner. My parents live really close which is so good. They have been over the top amazing! I aspire to be as great a parent as they are. My sister, and my in-laws have been amazing too. I am just so lucky to have them in my life as well. And just my whole family too. I have got cousins, aunts and uncles that live nearby and they all have been very supportive and helpful as well.
One of the lessons I have learned from this experience is that you can't take family for granted because they are your saving grace.
What is the biggest difference before and after your accident?
Before, I was all about work. I loved my job and now I can't do it anymore. I was an equipment operator but my left hand isn't working properly and my spatial awareness is not good either, and you need to have those things in order to do my job. It was a big part of my life before. And obviously now I'm a stay at home mom, so momming & recovery is my new life.
I have also learned to say no. I have learned to listen to my body and if I am not feeling it and think I will use up all of my “spoons” for the week, I will say no. Whereas before, I was a big people pleaser and wanted to do everything. Now, I need to be able to scale back to make sure I am my best self at home and not be an “angry write-off” for the week.
Looking back, is there anything you wish you had known at the time of your injury, or anything you wish you had done differently?
It is really hard to say, I was in big-time survival mode from the accident while also learning to be a mom. It was really a whirlwind where I don’t even really remember the last 2 years. If I could tell myself something 2 years ago, I would say, “give yourself some grace” and “it does get better.” I don’t think I would have done anything differently, I think it has all played out in the best way it could have and it could have been much worse. I am just grateful to be here.
How did you process the emotional aspects of living with a brain injury?
I talk about everything with my partner, we have a very communicative relationship. I tell him exactly how I am feeling and he actually has a brain injury himself so he is very helpful and understanding. I also see a counselor once every couple of weeks. I honestly just make sure to talk about it. My daughter doesn’t understand it yet, but when I am having a hard day, I try and explain it to her so that she knows even if she doesn’t quite understand it yet.
I also started acupuncture a month ago to reset my nervous system which has been very helpful. Everything that has been “swept under the rug” has now come up and I am dealing with it.
Next week I start somatic therapy. It’s another nervous system reset. It will relax me and help me make new connections surrounding the accident to help me process it.
Brain injuries can be hard on your mental health. You may look normal, but most days you don’t feel normal.
What was the timeline regarding your accident and the time you had your daughter?
I was originally supposed to have her in Kelowna hospital and wait until I was 38 weeks to have a c-section. They were under the impression, based on my injuries, that I would be in the hospital and have my c-section there. They thought that I could possibly be in the hospital for years as they just were not sure about anything. But because I was progressing so fast after having that dream and getting up and walking, they moved me down to rehab and I stayed there for only a week. Then, I was released because the doctors thought it would be better for me to have 2 weeks at home to prepare myself mentally. So, I had my daughter at 38 weeks, in the Hospital at home, 2 weeks after I was discharged from Kelowna hospital.
While in the healthcare system, was there anything that you wished you had access to or was difficult to gain access to?
I guess the only things I can think of would be that there would be more funding available for high functioning brain injury rehabilitation. The therapies that helped the most, we had to pay out of pocket and weren't actually covered by benefits. I am grateful for Acquired Brain Injury Services, they have been super helpful setting me up with an OT and a neuropsychologist though but yeah, a little more funding options and maybe a bit more information and direction on how to navigate being “high functioning”. I had to advocate for myself a lot and look into all of these therapies. There's no TBI handbook, support group for high functioning survivors or like a list of things you should do once discharged. Once you become an outpatient you kind of have to fend for yourself I guess? I mean it probably wouldn't be the case if I wasn't functioning as highly as I am, and I'm not sure if this is the same case for everyone that's high functioning, but this is what I've noticed anyway! I can only imagine how hard it is for the health care system, because there are so many people with so many different injuries. For me, it has been good for the most part. My doctor has given me anything I need and has been so supportive. The only thing I wish I could do now is get an MRI to see what the swelling and the blood residue in my brain looks like.
The link to Emma’s Blog: https://emmaperepelkin.wixsite.com/tbirecoveryandmother
Emma’s Instagram handle: tbi_mama