Portrait: Kelly

Where Kelly’s story begins  

Once we were home for a few days, I noticed things weren’t right with me. I wasn't sleeping well, had trouble reading, concentrating and multi-tasking, among other things. The day I found out I also sustained a brain injury was a pretty low point in our recovery.  

I sat down and sobbed, thinking to myself, “I am trying to heal my family, how am I going to heal myself”?  

A connection between mother and daughter 

It turned out my injury assisted me in caring for her. As we all know, no two brain injuries are alike, and ours were certainly different, but there were some similarities. We both experienced word-finding issues, and I knew the feeling when I couldn’t produce a word. I gave her what I needed - time to think and process rather than speak for her. I stopped multitasking because when I did, I could concentrate on the one task I was doing. Fatigue was a hard symptom but, in the beginning, I would nap with her hoping to teach her to rest during the day. Fatigue is one of my biggest symptoms now, even 20 years later.  

It is difficult watching your child suffer, no matter how old they are. There have been so many days I wished I could snap my fingers and our injuries could be reversed.   

Current challenges 

My daughter suffers from severe migraines and we investigated many different therapies to lessen the pain and occurrence. There was quite a lot of trial and error, keeping food diaries and notebooks about when the pain was worst. She reduced the number and intensity of her flare-ups over the past few years through new medication.  

Taking care of her helped me to learn how to take care of myself. I advocated for her needs at school but never shared what I needed. Following our accident, I spoke to emergency responders’ groups about our experience and slowly broadened the net. I got more involved in my local and state brain injury organisations and learned how to advocate at a higher level for all those living with brain injury, especially families.  

Strength and solidarity 

These experiences gave me confidence. I realised our stories matter. Sharing our experiences is a way to educate and touch others. It has brought me to a new community. When I speak to a group, I see the empathy in their expressions and hear it in their words. So many have expressed how comforted they are to hear from another parent navigating this world. It’s a world without a map. There isn’t one route that works for everyone. Trial and error are the normal course. We all need others who can help us along the way, pick us up when we fall, walk by our side, cheer us on and cry with us when the battle seems lost. 

It took a long time for me to build these support systems into our lives. It also took me a while to speak publicly about my own injury. I realised over time if I didn’t talk about my own injury, what was I teaching my daughter? There isn’t any shame in having a brain injury. In fact, it’s a badge of honour because we survived, and we keep on thriving and moving forward. Some days we may only take baby steps, but other days we take leaps. It doesn’t matter how fast or how far, just as long as we keep going.  

My advice to other survivors 

My advice to anyone living with a brain injury or caring for a loved one is to try to laugh at least once per day. We can get so overwhelmed with all we need to do but we must look for those moments of joy. It can be looking out your window and seeing the birds playing, or flowers blooming. Remember these moments. Reach out to someone for support. A hug or a quick chat or text can do so much to lift the spirit.  

Before our injuries, I had visions of what our lives would be like in 20 years. Those visions no longer apply. In some ways, life has brought me to a new passion. I wrote a book and articles and I speak at events advocating for those with brain injury. I don’t know if I ever would have envisioned that for myself prior to our accident. I am not happy my daughter suffers from her injuries and wish I could erase it, but we have come to a point of acceptance and try to live each day to its fullest.  

Another quote I keep in mind as the years go by is: 

 “We must let go of the life we have planned, so as to accept the one that is waiting for us.” ~ Joseph Campbell 

Kelly’s story not only amplifies her voice, but also her daughter’s voice. As two brain injury survivors both navigating life, they are courageously journeying through it together. If you’ve been inspired by Kelly’s words as much as we have, please share this story so that we can spread the word about the impact of brain injuries.