Kara Swanson's Brain Injury Blog

September 20, 2015

You Have Made Me Think and This Is What I Came Up With…

Filed under: Uncategorized — karaswanson @ 9:22 am

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.

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13 Comments »

  1. Another great post Kara.
    I found this line “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?” very representative of the issues I have been/am going through. Happy to see I am not the only one that expereinces these probelms.

    Comment by Mark — September 20, 2015 @ 9:37 am | Reply

  2. Mark, you are soooo not alone. If every fifteen seconds someone is brain injured, imagine how many people are going through exactly what you are. Too often your losses are not identified and given enough support and validation. It’s no picnic from where you guys are sitting now. The best you can do is to try everything and invest enough time to try everything so that you either make it work or determine it unworkable. You can live with yourself then and you will both be better for the effort and whatever progress was made. Good luck to you!!!!

    Comment by karaswanson — September 20, 2015 @ 9:44 am | Reply

  3. Hi Kara,
    How I needed this posting… thank you. In the last 11 years, I have adapted pretty well, but not in all matters. I cry easily (which my daughters hate) and I have certain ‘inabilities’ for which I have tweaked my own life for. For years I have tried so hard to not be resentful, but losing out on evening activities, etc. is not simple. Some things have gone OK. Others… nope.
    My family has moved forward. Much of the time without me. My spouse, while a nice person… has not adapted to my injury–he ignores it much of the time. There has been neglect at times. Recently, my youngest child and I have had falling out. My hope is to rebuild, but honestly I don’t know if it will happen. It has come to view that I have put so much more into my relationships than most of the other parties have. That is on me. But where to go from ‘there’ is unknown. It really hurts.

    This is one to be printed out, Kara. And reflected on, and learned from. I am so glad you are in a happy and healthy relationship. You SO deserve it.

    Hugs and admiration-always!
    Barb

    Comment by Barb George — September 20, 2015 @ 1:39 pm | Reply

    • Barb…You have always brought love and light to me and to everyone around our community. Your sweet heart shows through, warm and lovely. Sadly, there will always be people, often those closest to us, who will not choose to welcome us as we are now. That is on them but also on us, if we continue to go to them for needs we know now they cannot meet. I still do it in my own life. I do get it.
      But you deserve your needs met. You deserve to be honored and celebrated and cherished, even when you are crying for whatever reason. Hopefully those daughters will grow up a bit about the crying when it is such a teeny tiny thing. And I so wish for your husband to realize what a gem he has. He’s a lucky man and shame on him for not realizing it. You know how I wish you well. xo Kara

      Comment by karaswanson — September 24, 2015 @ 4:43 pm | Reply

      • Thank you my friend.

        Comment by Barb George — September 26, 2015 @ 11:00 am

  4. Kara,
    I don’t know how, but you so often manage to be perfectly in sync with my current conundrums. I’m five and a half years out and still “waiting” for my husband to recognize that the demands of my injury are not only placed on him. The reality of that magically happening is beginning to set in. This not only leaves me faced with a cruel personal reality but, seeing as I am not working and still participating in multiple therapies and rehabs, a practical one as well.

    If there is anything I have learned at all from this journey/ordeal it is that if you keep working, a conclusion will be drawn, good or bad. A conclusion of some kind is what I need to create a plan and keep moving forward.

    I truly appreciate your insight.
    Christine

    Comment by Christine — September 20, 2015 @ 2:37 pm | Reply

    • Hi, Christine! When you wrote that you need a conclusion of some kind, it reminded me of a particular moment in my own recovery that literally changed my life (again-ha!). I decided I was recovered. I decided the sick time was over. I decided that the symptoms refusing to heal were not going to. I simply declared myself well.
      Often our therapies and rehabs help but they also continue to feed a hope that we will be cured. We all must decide, on our own, when we ARE well. When we are ready to shake and bake and take on the world, as is. We always have room for improvement. I truly believe our healing continues for a lifetime on so many levels. But I think most of us wait and wait for someone to tell us we are ready. We are recovered. When, at the end of the day, only we can decide that for ourselves. I can tell just from your short note that you have a lot on the ball, Christine. Sounds to me like maybe you are ready to give yourself some credit, some freedom, some wings. Time to rock this life. Your life. It is positively delicious when we realize that, amid so much that was taken, nobody can take this. This power to decide for ourselves. 🙂 Kara

      Comment by karaswanson — September 24, 2015 @ 4:00 pm | Reply

      • I so agree Kara – I found it easier to say “this is me now” rather than endlessly waiting and seeing what my recovery would be. It is hard when people constantly ask “are you all better now?” – and I say, “well, I’m doing well, life has changed, but it is a brain injury, so….” – I feel like I disappoint people by not being “better”…. Now I just do what I can when I can and try to be happy with what I’ve got (which at 5 years post injury is getting easier).

        Comment by Jill — September 24, 2015 @ 8:15 pm

  5. Wow, I loved this post Kara. I’m nearly 5 years post injury and still continue to adapt and am still learning what I can and can’t do. But, luckily I have a great husband and kids who have adapted around me – and mostly I think they would say that we have a happier home because I’m at home. That’s not so say that I don’t struggle with what I’ve ‘lost’ – but I have a great psychologist who I see from time to time (and this helps my husband not having to listen to all my ramblings!). The people that understand me (and adapt around me from time to time) are GOLD and I appreciate them very much.

    Comment by Jill — September 20, 2015 @ 11:21 pm | Reply

  6. Wow, Jill, sounds like you and your family are lucky to have each other. Your post makes me so happy. Big smiles here. Thanks for another reminder that good and happiness CAN follow brain injury. Continued happiness to you and yours . Kara

    Comment by karaswanson — September 22, 2015 @ 8:08 am | Reply

  7. Hi, Jill. I was reading your comment about people always seeming a little disappointed that you aren’t reporting you are “all better now” and completely cured. Our brain injuries become a drag to those who prefer we have the neat injury, one that has a start and an end. A broken something that gets healed with a cast. A cold that gets better with chicken soup…
    People want us “all better” so we can go back to the roles we played in their lives. That’s not a knock against them. That is human nature. It’s hard for them to adjust, too. We all just want us to be back to “normal”….Sigh.

    Comment by karaswanson — September 25, 2015 @ 8:07 am | Reply

  8. HI Kara,
    I mentioned your blog on my blog today:
    http://www.lyndamcguirk.com/
    Love it! I’m cheering for you, Lynda

    Comment by Lynda McGuirk (@LyndaMc) — October 8, 2015 @ 7:59 pm | Reply

    • Hey, Lynda!!!! Thanks so much! Appreciate that. I’ll go check out your blog :))) Kara

      Comment by karaswanson — October 9, 2015 @ 7:24 am | Reply


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