For all these years now, I have posted a blog entry almost-monthly, after which I receive personal accounts and questions and comments from people all over the world. They share how their personal situations relate to what I’ve written and, often, I reply to them aside from this wide-open forum.
Jerilynn wrote to me and stated that she wished I would share those replies because there are many more out there facing the same situation and are looking for answers.
Something about the vibe in her short note stuck with me. Touched me. Got me thinking. Thank you for that, Jerilynn.
For twenty years now I’ve walked a fine line on so many planes. I want people in my life to understand the implications of my injury and yet I don’t want to be considered less or to be seen as not able to make it on my own.
I want to write blogs that share the like threads of surviving our injuries and yet I don’t ever want to lump us all into one basket when our injuries are distinct and discreet to each of us.
I want to work and play and live and love in the “real world” outside of brain injury and yet there really are considerations and limitations that make my “real world” one that includes the permanent effects of my TBI.
Let’s break for coffee.
What I’m certain of for Jerilynn and those like her who love survivors of brain injury…
And what I’m equally certain of for myself and for those like me who strive to overcome the lasting effects of our brain damage….
Is that…while there are considerations and circumstances which demand “different” and “unique” in the relationships of survivors with people who are not brain injured, there are also strict and unwavering levels of behavior and care which both sides of a relationship must demand and strive for and not settle for failing at.
I’ve often said that, if you don’t want to live a brain injury-consumed life, then you have to live your life not consumed with brain injury. It is in our intimate relationships with spouses, partners, friends and family where we simply cannot fail to strive. We cannot refuse to change. We have to dare to get help. We have to force ourselves to clear away the denial of what actually is now instead of what used to be and what we preferred once was.
If we are going to enjoy successful, happy relationships, then the rules are universal to everyone on both sides of the brain injury fence and they are ones which we have to identify and embrace, adhere to and demand of ourselves.
I’m not talking about simple brain injury success strategies like making lists or taking naps. Those can be integrated seamlessly into any successful relationship.
I’m talking about the ingredients of happiness and togetherness and partnership which face every couple, brain injury or not.
Everyone who wants to be part of a successful relationship has to feel safe. Whether you struggle with brain injury rage or lack of self-awareness, whether the “governor” inside your brain is not working or you are overly burdened or stressed at work or under intense financial hardship or you struggle with alcohol or drugs or denial or a lousy childhood….
Whatever the case, every person, on each side of the relationship, deserves to feel safe and deserves to demand safety.
If you are endangered, threatened, frightened….If you are being physically or emotionally abused, mistreated, unsupported, disrespected, alone…
You leave.
Survivor, supporter, either one.
It doesn’t matter if you vowed to stay. It doesn’t matter if you feel guilt because your partner is injured, damaged or struggling or you are the survivor and you feel guilt because someone is taking care of you and stayed with you after you got hurt.
Life is too short and you are too important.
No one deserves to feel threatened or frightened in any relationship. No one deserves to be physically or emotionally hurt. No one deserves to be held hostage, manipulated, cheated, blackmailed.
If these are our most intimate, closest, most precious relationships, then we need to demand as much. We need to aim higher and highest. We need to gift ourselves that, at least. That, for our most precious relationships.
If you are a high-functioning brain injury survivor, then the stakes are high and the demands are higher. We don’t get to cut ourselves any slack if we are going to run with the big dogs. If we are going to aim to have healthy, happy, loving relationships, then we don’t get to play any TBI cards when it comes to the basic facets of a shiny, nurturing, healthy relationship.
Survivors: Don’t get bogged down with things like needing to nap or having to use lists or having to stay away from big crowds or having trouble multi-tasking. Those things may be symptoms of your injury but they are not deal-breakers for a healthy, happy relationship. If they are, then you are simply with the wrong person.
The things that ARE deal breakers for a healthy, happy relationship are the complaints I receive here all the time and ones that are valid and reasonable. No spouse or partner wants to be on the receiving end of your anger. Your feelings of being cheated in life because you are injured. No one wants to be the partner of someone who displays natural feelings of fear and sadness with acts of rage and violence.
Your partner will move on, eventually. If you want to stay back there and just choose to remain angry and resentful and refuse to try and embrace what you have and move forward and find new happiness, your partner will go ahead without you.
Brain injury can damage our filters, our ability to make reasonable decisions, our safety switches, our social behavior mechanisms. Partners have written to me to lament their TBI-damaged partner has gambled away the house, now drives 90 mph, has burned the house down, has taught the kids to smoke…
Learn your injury. Learn what makes it worse and what makes it better. Install strategies that make it better. Listen to what those around you are saying. Hear them. Trust those with no reason to lie or hurt you. Know that getting help does not make you weak. It makes you better. It makes you willing. It makes you mature. It makes you safe. It makes you part of an evolving relationship.
Those of you who are “well” and in a relationship with a TBI survivor, you have to learn the injury as well. Your life has been injured, too! And it’s important to realize and accept that the survivor is not automatically the problem.
Just as they have changed, so must you.
Knowing how the brain works and how the injury has specifically damaged your partner’s brain will help you contribute new ideas and strategies which can maximize cognitive potential and efficiency. If you used to run marathons with your partner and then they got their legs blown off in the war, you wouldn’t expect them to run marathons with you in a few months.
The same can be said for many of the activities you once shared with your now-injured brain survivor.
Is your household still chaotic and noisy and crazy with off-the-cuff activities and loud music and multiple TVs going and kids rushing in and out? Is the survivor back to work and coming home cognitively wasted at the end of a day and you are trying to get him/her to make decisions, participate in activities and talk about feelings? Are you giving him/her too many choices and then rolling your eyes when he/she cannot make a decision?
Are you blaming him or her because activities you once enjoyed, maybe together with other couples, are now unrealistic and you are feeling isolated and alone? Cheated at what you are missing out on?
Are you simply waiting for them to return to normal and not actively involved in creating a new reality that has a chance of making you both happy again?
Do you resent them now? For changing? For taking the old relationship you preferred? Are you having to make all the money now? Do all the parenting? Make all the adult decisions?
Are you getting help for any of that?
There are so many angles. So many issues. So many possibilities. This is a bugger of an injury. It’s not a broken leg where you just have to figure out how you are going to shower and maybe someone is going to have to shoulder the driving responsibilities and most of the errand running for six weeks.
This is a bastard.
Make no mistake about it.
I can ramble on for endless hours but the bottom line is this:
Brain injury sucks. It damages the brains of both partners in a relationship differently but in ways that can be equally-consequential to the partnership. Both partners have a right to be happy and a right to be safe. Both partners have a responsibility to change, to learn, to embrace a new direction. To create better in any form they can enlist: counseling, learning, medication, adjusting, accepting, adding new…
Nobody can walk in your shoes. Your particular shoes. Nobody can really know what intricacies are at play in any relationship. Only you can answer to yourself and to your partner. Only the two of you can vow to invest the best of you. To commit to evolving into a new version of you.
Just know that different doesn’t always mean worse. Brain injury is not strong enough to automatically doom a relationship.
I am in the most loving, healthy, nurturing, beautiful relationship of my life. It happened after my injury. It happens with my injury. Together we have integrated the lingering symptoms of my injury into our normal. The key, for us, is that we chose the right person. We identified what was important and my symptoms and challenges ended up pretty low on the list. Above that were safety and love and respect and attraction and unwavering support and fun and ease and friendship and the willingness to evolve.
Please don’t give brain injury the power to take more than it has already. Do what you must, enlist all the weapons at your disposal to put up the good fight. To battle for the relationships which once meant the world to you. To battle for your happiness, for love, for someone special to live your life with. Accept that sometimes the best thing you can do for a relationship is to let it go. And, if you can live with all your efforts and know that you did try what you consider to be everything, then you wish each other well and hope they can find their happiness with someone else. Sometimes that is the greatest gift we can give our partners.
I’m cheering for all of you. Wishing you a happy, fulfilling, fun life full of love and someone to share it with.
Kara Swanson's Brain Injury Blog 