Kara Swanson's Brain Injury Blog

January 31, 2017

THAT’S when my brain was messed up…

Filed under: Uncategorized — karaswanson @ 4:10 pm

Today is the 21st anniversary of my brain injury and, as the years have gathered and clustered and bumped into one another, I have gained so much insight into what I’m celebrating and what the reality of my life was and is.

Most of us, I imagine, come from a place where we measure when we were well against that date we were hurt.  That date when our brains got messed up…

But I look back now and I was 31 and so successful and Society smiled upon me and told me I was thriving and climbing and I had this and that to hold up as evidence.   Nice house, nice car, nice suits, good money…

But, as I sit here today and look out upon that January snow coming down and I recall that day so many years ago now, I am more convinced than ever…

I don’t lament that time.  I don’t covet it.  I don’t long for it.  I realize now that-

THAT’S when my brain was messed up!

Oh my.

I was told when I was young that working those 80 to a hundred hours a week meant I was driven and successful and accomplished and goal-oriented.  Executing on four hours a sleep so many nights and changing in my car so I could go from catering director to coach and then back again.

I didn’t have time to even look at life.  To look at myself.  To realize how unbalanced and dysfunctional I was.   Here I was in a town I had moved to where I didn’t know anyone, far away from friends because I had left an abusive relationship.   I worked so much that I barely even decorated that new house.  When my mom started having her strokes, I didn’t take time off.  Instead I got up and went to the hospital at 6 in the morning, off to work at seven, sneak to the hospital after lunch events were done, back for dinner events, off to the hospital once more before heading back to set up for the next day’s events.  Walking in at three in the morning…

Everyone told me I was such a success when really I was just living a life of pretty chaos.

It didn’t take this brain injury to make my life fall apart.  It took this brain injury to get my head on straight and to start putting together a real life that I took the time to actually want.

Please don’t waste this opportunity!  Brain injury comes at us like the Boogey Man and it throws all sorts of horrific distractions in our way.  It makes us feel like it is the worst thing that could ever have happened to us.

In reality, these injuries of ours are crossroads.  Intersections.  Pivot points.  Yes, I get that, for so many, the devastation is beyond repair….But, for so many of us, it is our opportunity to walk away from what almost killed us and to actually, finally, start living.

I pray you are as fortunate as I am this day.  To know that it was that damned injury I have to thank for now 21 years of real success in things that actually matter to me.   Something of lasting value.  Something worth living for.  Love, peace, joy, doing things I love, being with people I love, appreciating life…

Happy Birthday to me.  To all of us.  To be born is to be given the gift of life and we have each received this now twice.  What are you going to do with yours?



  1. Happy New Birthday, Kara. You have come a long way. Thanks for sharing your insight.

    All best, Donna O’Donnell Figurski


    Comment by donnaodonnellfigurski — January 31, 2017 @ 6:31 pm | Reply

    • Thanks, Donna! Nice to “see” you :))

      Comment by karaswanson — February 1, 2017 @ 6:53 am | Reply

  2. Hi Kara,
    Thank you for your insight. I was 36 years old when I had my injury. My 15 year anniversary is on April 18. I use to think that was the day my life ended but I now realize it was the day I finally “woke up”. I realized who my friends were and all the people who helped me along the way. I still have some challenges but things get better everyday. I was fortunate to stay in the same career. Ironically I work with people with disabilities. I love what I do and would not change a thing. Happy New Birthday.

    All the best to you,
    Natalie DeLuca

    Comment by Natalie DeLuca — January 31, 2017 @ 8:30 pm | Reply

    • Hooray, Natalie!!!! :)))))

      Comment by karaswanson — February 1, 2017 @ 6:54 am | Reply

  3. Happy Bonkaversary my dear friend! So thankful for YOU.

    Comment by Barb George — January 31, 2017 @ 9:36 pm | Reply

    • And for you, Barb George….Love you. :))

      Comment by karaswanson — February 1, 2017 @ 6:54 am | Reply

  4. Ah, yes! I celebrate the anniversary of your awakening with you. We have talked about this, so I won’t go on and on. I pray those with brain injuries come to this point, cross that bridge and stand in the light with us.
    Well written!

    Comment by Lynn McIntyre — January 31, 2017 @ 11:30 pm | Reply

    • And so was your comment, Lynn. Nice!!! Thank you :))))

      Comment by karaswanson — February 1, 2017 @ 6:55 am | Reply

  5. It will be 7 years for me this summer and I have not yet arrived where you are. The good news is I am no longer angry, confused and completely depressed. And in many ways I can now realize I have many things to be grateful for. I am adjusting to my reality, to my new norm and I realized the other day I almost forget what my other life felt like. I maybe still grieving at times too. It is all a process. But when I wake daily I am thrilled for the opportunity…

    Comment by Elise — February 1, 2017 @ 10:04 am | Reply

  6. It sounds like you are on a terrific path, Elise. You are creating a happy, successful and grateful life. Thrilled for you. :)))))) KARA

    Comment by karaswanson — February 2, 2017 @ 8:46 am | Reply

  7. Such a nice thought. Yes, we all have to see, that by mAking it back from oblivion, we are truly a better person now than we were before the accident.

    Comment by Cheryl — February 2, 2017 @ 11:51 pm | Reply

    • I think the key is to realize what we have the opportunity to bring back from the oblivion. So often we just assume that everything was great then and everything is lousy now. I really believe it’s more complicated than that. While the injury changes our thinking, it also invites us to CHOOSE to change our thinking. I realize that not everyone is as fortunate as I have been with my TBI experience. For so many it remains a monster every day.I just think that, regardless of the measure of damage, the key is to realize we cannot live as if there is none. Miserable is the person who continues to try and be who they once were when they have a chance to be better than that person in so many fabulous ways. :))) Thanks for writing, Cheryl!

      Comment by karaswanson — February 3, 2017 @ 8:11 am | Reply

  8. Thanks for this! Two years out. Treatment helped a ton but was not a smooth road in regards to symptoms. My best days, I feel like you did in this post… Thank you!

    Comment by sidney — February 9, 2017 @ 11:29 pm | Reply

    • Hi Sidney!!! Two years out is a HUGE time during our recoveries. We come to the end of prescribed treatments and tries and rehabs and we begin to pull the curtains back on what we have now. You’re at a time when there is a power you have no idea you wield. With a brain that thinks differently now, you have the opportunity to take a different approach to how you succeed. The successes are just as sweet no matter how you reach them and create them. Know now that YOU will take the baton going forward. You may enjoy additional healing all your life and you should always welcome and seek it. But, two years into this, you get to realize just how much of your success going forward will be because you fashioned it. Because you figured out how to make new paths to get the things you want in life. Rock on, Sidney!!!! Take those reigns and choose your lanes. I’m excited for you. 🙂 YOu can do this!!!!!! Kara

      Comment by karaswanson — February 11, 2017 @ 11:19 am | Reply

  9. Hi Kara. My TBI happened way back in ’98 and I have just found this whole community of people like me, today! I have written the text for an ebook re my journey, and in taking the leap into the unknown of ebooks, had to wade thru the mire of making a blog… Then today I discover that there are others out there, just like me who have done the book thing too. I really want to help others who find themselves where I was, I have struggled along, learning things the hard way – when all this time there has been help right here! Do you have any advice about how to go about reaching out to others in this TBI boat, wanting help and support on their own exciting journey? I too, love my life now, and only see it as ‘different’ from my old one, not necessarily ‘less’ than what I had!
    I will add my blog site here, cos I can – as of this week! visitors are WELCOME!!!! Please stop by and see ‘me’, and leave a comment so I can learn how that part of blogging works… see you soon! 😉 JO

    Comment by andyetheregoi — February 19, 2017 @ 3:23 am | Reply

    • Sounds like you are orchestrating a great second life with a terrific attitude. Happy for you. You asked me for advice on how to go about reaching out to other in this TBI boat….you just did. :))) You’ve started a blog to help people. Maybe visit your local TBI chapter to see if you can become involved with their members and activities. Hopefully your state sponsors an annual TBI conference. I always found those to be excellent places to find people like us and resources there to help. You sound terrific. Good luck to you!!! Kara

      Comment by karaswanson — February 20, 2017 @ 7:55 am | Reply

      • I have no idea re a TBI chapter, I live in New Zealand… I shall endeavour to find more about a group of TBI citizens in NZ. Thanks heaps for your reply! It is very reassuring to get some positive feedback in these early stages!!! Cheers JO

        Comment by andyetheregoi — February 20, 2017 @ 8:26 pm

  10. oops, hahaha! You can see I have a genuine TBI! I forgot to put my blog site address in there!! http://www.andyetheregoi.com

    Comment by andyetheregoi — February 19, 2017 @ 3:25 am | Reply

  11. Hey JO! If you cannot find any local TBI chapters or a state conference, you may want to start a support chapter on FB. I’ve seen many there. Or begin one of your own. Meet at a park or a coffee house….YOu may be just what and who everyone there has been waiting for!!!!!! Kara

    Comment by karaswanson — February 21, 2017 @ 8:41 am | Reply

    • What a good idea! Your thinker is obviously working well when it can come up with ideas like that one! I might even look at opening a FB account for andyetheregoi… This technology thing is an amazing way to reach out, eh?!?! Jo

      Comment by andyetheregoi — February 21, 2017 @ 1:40 pm | Reply

      • Yes! We have so many ways to reach out now and be able to connect with people like ourselves. Good luck with a FB group. That will be great. :)) Kara

        Comment by karaswanson — February 22, 2017 @ 8:27 am

  12. It has been almost 12 years now (May 31, 2005) and it seems that everyone but us has forgotten about the accident, either by the passage of time or because of many new health issues for my husband. (Heart stents, now diabetes) Last summer he almost died from a very sudden septic infection and spent many months on IV antibiotics and leg sores that the doctors said were from fluid retention in his legs. (He was almost 400 pounds and cannot exercise due to on-going pain from leg surgeries from his accident.) Then about a month ago we found out that he is diabetic. We felt relief because now this last year had a name. And a plan to fight it. His memory is so bad that we are going to get him tested for dementia. Some of it, I am sure, is accident-related. In the past 5 years he has had a couple of neuro-psych tests but they tell us it is not brain injury; that he is just not facing reality and blowing it off. After 35 years of marriage we do not have a relationship. He is in his own world; short-term memory is very bad when it comes to remembering things in others’ lives, like our daughter’s prom and my son
    s graduation as they were approaching.

    After spending much time thinking how to escape this situation, I am thinking that might not be the best idea. For him anyway. He doesn’t have anywhere else to go and is not “ill enough” to live in assisted living. I do get out a lot, as I work full time and have an active support group that I go to. Life can sure throw curves, can’t it? I wish I could get him to go to the senior center for activities. He drives, (the doctor doesn’t want him driving) but does not want to give it up. Cant say that I blame him for that, but his reflexes and anger issues make him not very safe. I am very glad you do this blog. You probably get tired of hearing about family members complaining and they aren’t the ones who have to live with it, tho it seems like we do in a different way. Picking up the pieces and trying to juggle all of the balls. I am concerned because I am only 59 and he is 62 and I am getting to an age where I don’t know how much longer I can live with this. I don’t want to leave him; I just don’t want to live in it anymore. Our house is so small that it feels like there is nowhere to go for privacy except the bathroom!!

    Comment by keepmoving — February 27, 2017 @ 2:35 pm | Reply

    • No, I NEVER get tired of hearing from loved ones. I know full well that you have your own version of hell to deal with when TBI comes and knocks on the door. Your lives have been turned upside down just like ours. You are burdened with such a pressure to hold up the whole fort and everyone looks to you to keep it all together. I so respect and admire those of you who stick it out. I feel terrible when it feels like there is no other option for you. No one can judge or blame a loved one of a TBI survivor until they’ve been on that side of the coin. I helped to care for my dad for nine years after his strokes and small-vessel dementia. Even when he was a sweet little bird who was literally a joy to be with, there were days when my brother was supposed to be home by 6 and couldn’t handle it one more second. I’d go and sit outside in my car with the car on, just waiting for him to drive up so I could go go go. I know there are respite facilities for people in your situation who will take care of a person so that the caregiver can get some rest, go off for a weekend or just reclaim some strength and sanity. I wonder if your husband would be a candidate for something like that? Are the kids still living there? Kara

      Comment by karaswanson — February 28, 2017 @ 8:02 am | Reply

  13. Happy to say I feel just like you Kara. I’m approaching my 17th rebirthday & I wouldn’t change what happened.
    Thanks for your words 🙂

    Comment by jokeithelin — May 30, 2017 @ 4:05 am | Reply

    • Hey there, Jokeithelin….NIce to see your note! Congratulations on you rocking 17 years of this. Big smiles here. :))))))))) Kara

      Comment by karaswanson — May 30, 2017 @ 6:39 am | Reply

  14. Happy New Birthday Karaswanson, I pray for you that you continue to have a beautiful life.
    Unfortunately I have to write something here and I we would appreciate your support.

    Hello Dear Friend,
    Dear Mrs. & Mr.

    I am writing you as I am appealing for help and with a situation that has
    gone beyond my capacity to do this by myself .
    I need info afor Stem Cell Treatment for Traumatic Brain Injury and maybe
    a possibility to use a THOR Photobiomodulation Therapy.

    I am currently in Germany where I am caring for a very good friend of mine
    in gratitude for his assistance
    in treating my condition Some 20 years back
    I had synovial sarcoma with unfavorable prognosis.

    As a specialist Doctor in biochemistry, he helped me to treat my illness and
    prevented the option of having to ampute my leg.
    It’s been 20 years since my illness and I’m still alive today.

    Dr. Haas. is 75 years old today and in 2015 he suffered a brain impact.

    Since October 2015 he can not speak anymore.
    He can read and understands everything what we tell him and he can function
    alone with little help and partly write with left hand.
    I am taking care of him. I am however trying to seek a therapy for him so
    that he can talk again.

    I have found reports on “Ar-Turmeric and Turmeric compound boosts
    regeneration of brain stem cells”, “Stem Cell Treatment for Traumatic Brain
    Injury” with Dr Steenblock
    and I found different posts about Medical Lasers/Neuroscience:
    Photobiomodulation and the brain: Traumatic brain injury and beyond !

    I would be so appreciative if you can help me find this therapy for him or
    give me info where can I get such a therapy for him?
    Can an Photobiomodulation therapy Dr. Haas Help????

    I am appealing to you compassion to urgently help me help my amazing friend
    achieve a chance to restore some quality to his life.

    Unfortunately it will be realky challenging for me to travel with Dr Haas for treatment,
    would you be able to advise me if you are in contact with any specialist in your field in Europe that I can contact and maybe is it possible to get a device for treatment for Traumatic brain injury with THOR Photobiomodulation device.

    I am very grateful for your help

    kind regards

    Senad C.

    Comment by Senad — December 29, 2017 @ 7:43 am | Reply

    • Dear Senad C: I’m sorry to hear of Dr. Haas’ brain trauma. Very wonderful of you to help take care of him and to try and find some help for his inability to speak now. Bless you both. 🙂
      I’m happy to see that Dr. Haas has the ability to think still and to communicate his needs in a way that gets his needs met. I’m afraid I do not have any connections with stem cell infusions or experience with Turmeric to revive cells. I’m sorry.
      Besides my own brain injury, I also helped to care for both my parents after their 6+ strokes, both of whom experienced trouble with speech after. I found that both responded to music. My dad, who had only cawed like a bird for two years and didn’t speak, started singing along with us perfectly as soon as we sang songs from his youth. It was amazing after not hearing his voice for so long!
      Has Dr. Haas done any music therapy? Was there damage done to the mechanical parts of his vocal system or is it that the brain is not sending the correct messages?
      I wish I could help more. I’m glad, in the meantime, he is able to communicate in some meaningful way. All I know is to try music. It helped with my own speech problems. Just playing different kinds of music to help ignite different areas of the brain and singing along as much as I could in order to gain rhythm to my speech again.
      After seeing how music helped my dad to speak after two years of not, I never give up hope for anything. I wish you both the best of luck. Please wish Dr. Haas my best.

      Comment by karaswanson — December 29, 2017 @ 11:10 am | Reply

      • Hello dear Kara,

        Very wonderful to get your writing. Dr. Haas has read your text. Thanks so much!

        I am sorry for my english and I hope you can understand. As I’ve already mentioned I am caring for a Dr. Haas since 20 October 2016 in gratitude for his assistance 24 hours a day alone.
        In October last year, I have to communicate with Dr. Haas. His was in a nursing home. His general condition in the nursing home was totally bad without life. With hand sign and finger up for YES and down for NO.
        He wanted to get out of the nursing home. Ok, I help him !
        Some 20 years back I had synovial sarcoma (cancer) with unfavorable prognosis and Dr. Haas as a specialist Doctor in biochemistry,
        he helped me to treat my illness and prevented the option of having to ampute my leg.
        It’s been 20 years since my illness and I’m still alive today.
        I say to him, ok I will help you with the hope that he can speak again.
        Unfortunately, he has temporarily fallen into depression because he has a Legal guardians are legal representatives of the persons concerned
        and she does not care for the interest of Dr. Haas.
        I try to do everything possible that he feels well.

        Unfortunately, there damage of his vocal system is it that the brain is not sending the correct messages and he can not speak. He can speak when you remember him with a sentence.
        Unfortunately, he dont like to listen to music or watch TV and I can not force him to do that.

        I have found reports on “Ar-Turmeric and Turmeric compound boosts regeneration of brain stem cells and Stem Cell Treatment for Traumatic Brain Injury with Dr Steenblock.
        But, it will be really challenging for me to travel with Dr Haas to California for treatment. The Stem Cell Treatment is certainly very expensive and flying to California with Dr.Haas almost impossible or very difficult.

        As very pleasing I found info and poss about Medical Lasers/Neuroscience therapy with photobiomodulation in Traumatic brain injury and beyond!

        For this I find info about very good therapy with Cerebrolysin 20ml per day infusion and subsequently 1 month course of Phenotropil or Semax 1% combined with Photobiomodulation a new and promising way to enhance brain function. The following is written “Within this context, photobiomodulation (PBM)–low level light therapy (LLLT)– is attracting much attention these days as a promising new way to enhance brain functioning. PBM involves delivering light to the cells (including neurons) that modulate tissue functions.”

        When I was sick 20 years at the cancer I never gave up hope to save my leg.
        I have myself operated my leg with a knife and soldering iron!
        I can send you video from my surgery!

        I have to try first finds devices for Photobiomodulation and then combine that into a therapy with doctor and medications.
        For all please who are reading this, maybe they have contacts to persons which have such devices for Photobiomodulation and maybe I can provide me this.

        Dear friend Kara I never give up hope for anything. I wish you both the best of luck.

        Please I submit best wishes from Dr. Haas to you an you Family and and everyone people in the world.

        Peaceful New Year for all


        Comment by Senad — December 30, 2017 @ 10:54 am

  15. Dear Senad and Dr. Haas: Thinking of you both. I was struck by the one sentence about Dr. Haas being able to speak, at times, with cues. I’m an eternal optimist so that tells me there is some capability there and that the damage is not complete. I sense that part of the problem is likely that, with such a brilliant man stuck in a place where even his guardians don’t put forth great effort, that there must be some hopelessness in there. I know I said this in my last writing but I truly believe that the brain can work its way around the damage and create new paths that work. I understand that Dr. Haas does not enjoy music or TV but the learning of a language is one way to encourage the brain to light up new pathways. Music is considered a language. When I first was injured, I sang a very difficult and challenging song over and over until I could keep up with it. It took me more than thirty tries but I did it. It helped me to keep the words coming instead of getting stuck in there where my brain was struggling. I have found that, often, our answers are not found in doctors’ offices but rather in our willingness to try every new thing. To think of our brains as having doors closed off to us. We have to walk down those hallways and fling those doors open in order to receive additional ability from our brains. I’m hoping Dr. Haas will not give up the idea of music. I know travel is difficult but a trip to a nearby symphony or community choir or even high school musical can help light up the brain and encourage its growth. I’m wishing you both good progress and sweet hope in the new year. You both have been through a lot. I am wishing that, together, you can engage in new activities and find, maybe, some enjoyment and fun this new year. Trying to sing each day, along with a song being played in order to keep up, may help and it may not. But bringing music into your heart will always help. Truth!!! Best to you both. Kara

    Comment by karaswanson — January 1, 2018 @ 12:18 pm | Reply

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