Paula Christensen and Bill Bom both have brain injuries.
Paula suffered three TBIs: Two severe diffuse axonal injuries (DAI) and her third was frontal lobe damage. Bill has chemo fog which is diminishing his brain little by little. They met three years after Paula’s second when she was still having seizures and learning to walk etc. He was her caregiver for twenty years and now, they are each others.
Paula answered these questions.
What is the hardest thing about living together when you both have brain injuries?
Everything. I tell people we are the like Gorgon Sisters. We share one broken brain (mine) between us and a lot of important things get forgotten. I’ve had to setup most of our accounts on auto-pay so that the bills get paid. Unfortunately, one of those accounts was hacked and the stress it caused me to try and straighten it out was, to most people trying to understand, unimaginable. To help people understand: I was putting myself through college as a bookkeeper but now numbers make no sense to me, and Bill who was a math wiz is struggling too.
What daily struggles do you both have and how do you help each other with these struggles?
We don’t adult very well some days and we are learning to recognise it. We then take a step back or walk away when it is happening so that we can work through a given situation. I’ve forgotten to take my medications on a more regular basis because I have to remind him to take his, even though we both have alarms set to remind us. On the upside, because I had to learn so many workarounds over the past twenty five+ years since my second brain injury and the seventeen years+ since my third, I am teaching him what I learned to compensate for the many cognitive as well as physical deficits.
How is your communication?
Extremely difficult sometimes. I notice that my aphasia is happening more and more and he is starting to deal with the same issues too. The plus side though, because we have been together for twenty three years he is able to figure out what I am trying to convey. However, when I am trying to understand him he still has to find the right words, because I would never figure out what he is trying to tell me otherwise. It’s nuts. Having a sense of humour is the greatest gift we have.
How much do you understand about one another’s brain injuries?
He is learning more and more about my life’s struggles now that he is dealing with similar deficits. He is actually working harder on our relationship now than he did in the past.
What is one thing you would change if you could?
I wish I didn’t have all of my physical disabilities.
What do your friends and family think of your living situation?
I don’t have any friends, and neither does Bill, because of me. Bill’s family was accepting for the most part but they still don’t understand the struggles we are facing. Though recently, it became necessary for the oldest son to help bring the groceries into the house because Bill just can’t do that anymore.
What little things do you do for your partner to improve their day-to-day life that they don’t know about?
I’ve taken on more of the workload around here since his job position was changed a few months back. He used to get three days in a row off. Now, he gets a day off every two or three days. He keeps working because it’s good for his mental health… And mine.
How has your financial situation been since your brain injuries?
Paycheque to paycheque now. I’ve had various businesses over the years that I built to accommodate my many physical disabilities but had to stop because Bill’s cancer is too much.
Did you meet each other before or after your brain injuries? (If after do you feel that’s better than not knowing the old them?)
We met after mine and before his. I like the new me better and am glad he never knew me then. However, I did know him before and he was less understanding than he is now.
Have you learned anything from each others brain injuries while living together?
He learned never to take your life partner for granted because one day you might become dependant on them. And, I’m struggling to learn the new him.
What are the positives of living with someone who also has a brain injury?
It’s like being two aliens dropped into a foreign environment. We have this weird disjointed language we barely know, and we have to rely on each other for almost everything, if we hope to accomplish anything. If that makes sense.
What advice do you have for other people in similar situations?
I don’t recommend it. Lol. Learn each other’s strengths and weaknesses, because even as physically broken as our bodies are we are still broken in different ways. We are able to use those differences i.e. to read with right understanding the instructions to put together elevated garden beds (for me) and build a deck enclosure (for me) and take care of all of the many other jobs running a household requires. And develop a good sense of humour because the stress that living like this puts on us just makes us laugh until we hurt some days. But, it’s a good hurt.
This is part of a new project to raise brain injury awareness and to help others with a brain injury. Living with someone who has a brain injury: A series of guest blog posts.
Ask the person you live with to answer the questions listed in this post, you can find a copy of them here, email answers to firstname.lastname@example.org, the answers will then be shared on the website along with others.