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Forever Seeking "Normal"

Comments [32]

Kara Swanson, Brain Injury Blog, December 16, 2008

Forever Seeking
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In my travels around the country speaking to the brain injury community, and during the time I’ve spent counseling survivors on line, I’m so often confronted with people who are so heart broken and frustrated and angry because they are no longer “normal” and will, likely, never be.

I tell them how normal they really are. Normal that they would be frustrated and heart broken by an injury that takes so much. Angry. Scared. Brain injury is no gig for sissies.

But I remind them that they are normal in a bigger way. That NOBODY gets through life unscathed. Nobody. Everyone has or will have that condition, disease, accident, injury or event in their lives that knocks them sideways and turns their life upside down. It’s one of the prices we pay for the gift of living.

I tell them, “Don’t be normal. Be better than normal!!!” We haven’t been put into a box because of this; we’ve just broken out of it. Armed with a unique perspective on how quickly life can change and how blessed we are to still be alive, the survivors of this injury and like conditions/situations get to learn what many don’t learn until far later in life.

This is a gift. An opportunity. A door blowing wide open. It’s a chance to decide that life really is too short and that there is no time for bad relationships, grudges held and mean spiritedness. Truly. What’s the point? How many years is enough to stay in a bad marriage, to hate a loved one for a misdeed you can’t even recall, or to keep taking back that rotten bastard promising never to hit you again?

People are seeking the greener grass that doesn’t exist. Nobody is normal and everyone is. Nobody struggles like me and everyone does. It’s life. And sometimes life comes knocking sooner and sometimes later but it does come knocking. And it might wear a hundred different coats but eventually it breaks everyone’s heart.

Beginning to successfully recover from brain injury, regardless of how many symtoms persist, occurs in that moment when you lay down the anger because it no longer serves you. When you stop counting things lost and start noting things gained and left and still available. When you start laughing at yourself again.

I often think of brain injury recovery as waiting for a bus. You sit at the bus stop waiting and waiting and waiting for the bus to come. To be healed. To be returned to the life you chose. And then…one glorious day, you simply get up and start walking.

See more Kara Swanson brain blogs.

From Kara Swanson's Brain Injury Blog. Used with permission. karaswanson.wordpress.com.
 

Comments [32]

I had 2 Tbi behind eyes lost all peripheral vision then a big one in back right side of brain. have been working to drive again was doing lessons and on last one got into accident no body hurt just bumps and bruises waiting to see out come in did not see it coming until. last second. I guess I can only pray that I get another chance to do it over. I'm pretty upset about it all I was this close I want to drive safe it may be a while. going back to drawing board. will take my time it's a real pain but I have a good team of support my new wife. and my 2 daughters have really been there for me and countless friends. I will overcome because I am like never give up I'm amazed I can see walk. talk unresentfull almost happy mostly thankful to God for helping me with his strength and peace. to top it off I had heart attack in October. 4 stints later good as new

Sep 27th, 2016 10:17pm

I am a T.B.I. since 2013 auto. No one involed in accident but me. Don't have a clue why it happened, all blank. My big thing I struggle with is, feeling I owe everyone, yet I never ask for this to have happened. Oh please Know I Am Thankful. It just never ends, me needing help. I can't drive, so I must depend on help. Of course I live out of town and live in Michigan snow. How can I keep sucking up the thank you, or once helped one says "Can't you see all the help I do for you"? This is so hard. I do say thank you and ever so often I say how grateful I am. Sorry I am burning out / wearing down. Anything I can do to stop this feeling or sadness inside that I am a TBI Thank you

Mar 6th, 2016 9:41pm

...I am 4 years out from my TBI from a 350 LB 8' Tall A-Frame sign collapsing & taking me out as it fell, my 3rd severe concussion, PCS for the second time. Yes I survived! I am a different version of me, the amazing magnetic charming outgoing, confident person & personality that I was disappeared that evening. I've spent all of my older adolescence, from 19-37, dealing with intense illnesses, M.S. & Fibromyalgia, chronic pain & discomfort, oddly both 'Invisible' illnesses as well. Possibly preparation to learn to deal with this monster. I am now working hard to Re-Learn how to be an optimistic positive outlook & attitude having person again. Fortunately I am a very Spiritually guided soul & I live by my intuition I have tons of documented Psychic Abilities that I use to get thru, have since I was young, that's my blessing in this because as much of me that changed as in NEARLY EVERYTHING, my core did stay solid & true. The anger that showed up after my accident clouded my perspective for a long time though, I'd not just LOST my ability to be fiercely independent & work hard everyday, play hard, remember hundreds of killer jokes that people knew they could count on me for, I was reliable, to count on my idetic/photographic memory, to carry on 3 separate conversations while cooking a meal, to be confident in any given situation, I was so loved by many people in my life, I was the 'Go-To' Gal for advice on so many subjects, I was involved in my family, had a social life, I was not only independent but self reliant & damn resourceful & creative, I have a book in publishing (still in process from the time if my accident) I'd written 3 others & had begun negotiations for onceracts on 2 of them.... Now I can't focus to write & my once graceful flow is inhibited by a rusty faucet that won't open all the way & there's not therapy or rehab for this one, there's more, & as I said earlier I didn't just Loose these things.... They were TAKEN FROM ME, that's what hatched my anger. I have to recreate my personality, or do I 'Get To'? I have to RE-LEARN how to do life, as if that's not hard enough for us the first time around. My family doesn't know what to do with me, how to talk to me, stay in touch, how to react or treat me so many if them have chosen not to have much to do with me, many friends too. Makes me sad sure, but I am not willing to make things even harder for them by trying to force the issue of my wanting them around & even needing their support, when on their side of this its already so painful to see how much I've changed, how hard all those once "Simple" things are for me now, just to 'Hang-Out' & sit still & B.S. with a group of them, without becoming overwhelmed, over tired & able to communicate clearly. So I have learned & Re-Learned to let go & to even surrender that 'Old Me' & Lean into & uncover & develop the 'New Me' ..... One of a few truths, my pre-TBI lessons, will always be of great relevance in this healing & recovery journey .... *SUFFERING IS OPTIONAL* My hubby chose to stick with me & it's been rough at times, just as he has no real idea how really hard this is for me, I too, haven't a clear idea of his true challenges with me. I am able to care for myself physically, dressing & showering, toileting, mobility for the most part, but a lot of my other skills & abilities are gone, I can't work but i have disability, he spent 16 years with me, the 'Old Me' & now says he still wants to spend the rest if his life with me, this 'New Me' that is still being created. So hell yeah there's a blessing, a forced retirement in my 30's, a forced early mid-life crisis, a forced rebirth.... All that anger & bitterness is going to do is slow us down, on our way to recovery. That old self may or may not come all the way back. I decided a while ago to stop waiting to see what would happen & make my own way, take my healing & recovery into my hands & that's a heavy enough load to carry, leave the anger behind.... As you "Get up & start walking". What bus any way? Probably just a rumor or a guess like when the "Experts" say we won't know how things will go for you until "6-18 -24 months ish" from your injury when your Brain heals.... At least that's what they told us, just wait & see...

Oct 25th, 2015 6:32pm

I am one from the other side.  Beginning in 1995 my husband had a stroke, 1998 he had his 2nd stroke and spent several months in GFStrong Rehab centre in Vancouver Canada. ( covered by our medical).  In 2005 he had a heart attack and was rushed to Vancouver General for by pass surgery.  After all of these challenges, he fought hard and bravely for his recovery.  In small ways I noticed the changes in him.  Also our lives were changed greatly.  Many of the things we loved to do (going motor homing with our 2 small dogs, meeting the new people whilst doing this).  During all of this I need to add that my husband was a heavy drinker, and there were many unpleasant times that were very stressful for me, and left me with caring for him not just for the side effects of the stroke but for the unpleasant moments when he was drunk.  Once again, he suffered another stroke in 2014....and this one took him down hard.  He spent 4 months in a hospital where they continually told us that he would never walk again, and it was time he learned to grieve and accept his situation.  His emotions were and are still all over the place.  He sobs over even small matters ( they seem small to me,however are not small to him obviously).  The hospital discharged him after 4 months and said he is not sick so he doesn't belong here.  He could not walk, he could not toilet himself day or night. His speech was/is terribly garbled.  He was sent home to me to care for him.  We were waiting for Interior Health to approve his acceptance into a rehabilitation centre.  However for 2 months I was his soul care giver.  I bathed him (which was a struggle, as he could not support sitting up). I toileted him ( a task which has deeply clouded and possibly destroyed the sexual relationship between the two of us, for me.). I love my husband very much, but I realize that the man I knew is not the same.  I know he loves me the same, and he hangs onto me for his strength.  He is now in the rehab centre learning to walk, talk, toilet himself (although he still requires the condom catheters at night).  I needed to purchase a powered wheel chair for him, also 2 hearing aids for him to start his speech therapy ($8,000.00).  It is $2,000.00 a month for his care at  the rehab centre, where he has up to 2 years that he can spend for his recovery, then he is discharged to home.   This has hit us very hard financially as we are pensioners, we have a mortgage on our home and other monthly bills.  Therefore I am now supporting two households and the monthly costs far exceed our monthly income.  I have listed our home for sale and in doing so I need to try to do all the grounds keeping on the 1.5 acre property myself.  I can not afford to pay someone to help me.   I know I have babbled on about a lot of things here, but the point being that I am overwhelmed with all the everyday hardships that have now been placed on my platter.  My mind is in a whirlwind trying to settle so many things and still take care of all the matters dealing with my husbands care.  I am mentally exhausted (yes sometimes my mind just goes blank, no emotion).  I feel guilty when my husband calls me every day and starts to cry because he misses me and our life.  I know I can not change that, however I feel guilty because I know that after carrying for him in our home for those two months before he went to the rehab centre, that I can not do that again, I can not try to do the things that I am not capable of doing.  In my attempt to be the good wife and care for him, I almost ended up hating him, and myself.  I have so many thoughts about our situation, and I wonder if at the age of 73 that my life will no longer be about my dreams and desires, but will be about my husband.  And if so, my husband was blessed that he made it thru all of these strokes, ( yes with a brain injury).  However, this other person ( me), right now no longer exists. " Every" decision that I might need to make must accommodate his brain injury lifestyle.    Yes,  it is easy to feel sorry for myself, to also be angry about all our lost dreams, to be afraid about what is going to happen to us, to miss a social life, to get panicky about finances. To miss having a loving partner.  I am not the person who had the misfortune to have the stroke but I am very much a struggling victim also.

May 5th, 2015 10:50am

I packed up my two teenage kids and left my alcoholic husband of 22 years ONE YEAR after my stroke. I was sicker than a dog because of the stroke, not working and no money. He even came to church and took the vehicle I left with. I had made plans with a shelter so I went there. You see I surrendered it all to God and begged for help and guidance. Once I surrendered and start making phone calls. The doors began to open. Peace be with you. I know how you feel. Love and blessings. 💛

May 1st, 2015 8:46am

My heart is feeling pain now. As the mum of an adult son with an ABI, I read this article and felt encouraged that one day he will stop feeling so angry and be at peace with this altered version of himself. I have and will continue to support him wherever possible and always, always love him no matter what. I do have to be honest though, because I see so many posts where people who have suffered brain injuries claim that people have abandoned them. In some instances I'm sure this is true. I do wonder however, how many have simply become tired, stressed and edgy because, let's face it, even without a brain injury, it's hard to accept people for who they are when they do not accept themselves! The time it takes its going to be different for each BI survivor but please remember that we ourselves have our limits no matter how much love and time we are willing to give. Some .. simply run out of steam. Friendships and family are also lost to those who remain desperately loyal to their loved ones with BI because no-one understands the challenges either face. The emotional process of grief and loss, coupled with trying desperately to adapt, support and be non-reactive to the rage that often accompanies brain injury is all consuming and can feel like a bereavement in itself. I am incredibly lucky and blessed that my son survived and I want to feel this joy but feel hindered. Why, because he himself understandably so, does not feel 'lucky' at all. And why should he? He never asked for and does not accept the change. And there my friends is the conflict. The conflict between the immense gratitude loved ones feel at your survival and how you yourselves feel. The middle ground is very hard to find. For myself I can only say I have and will continue to support him in whatever small way that might be. No matter how angry or horrible he can be to me sometimes because he feels bitter. And mostly always, always love him. No matter what!

Apr 30th, 2015 3:15pm

This article leaves me with a lot of mixed feelings. I applaud and celebrate that the author can express herself so well...after this injury, and that is surprising in itself to me. Everyone has their stuff, but some seem to have more than others. I agree that life is too short...but I also feel that some of the layers of devastation of TBI for some cannot be glossed over. There are some survivors who have simply survived, but lost almost everything. I think there is a balance and this represents a part of the spectrum, but one in which even many survivors would lack the cognitive ability to understand. I am the mother of a survivor, and this article seems to paint the situation with a lighter brush than our reality. I do value the perspective though. 

Apr 29th, 2015 6:31pm

Well said :)

Apr 29th, 2015 2:34pm

Some parts of the article are good, but it does not address the caregivers who have also had their lives changed dramatically.  My son's TBI was 9 years ago.  I am his only caregiver.  I am in my 70s and when I am gone, I'm hoping someone will step up so he doesn't have to go into a home.  Selfishly, this is not the way I expected to spend my final years.  I love my son and will do anything for him and have.  I wish I could be the way the article suggests.

Apr 29th, 2015 1:21pm

I love the part about not waiting for the bus but just start walking. Walking may be the slightest baby step in new thoughts but it is going forward versus stagnating or becoming worse than before injury. Almost 19 years out from a large brain tumor removal with ABI, I totally concur that it is, or CAN be a gift, if you change your perspective from glass half empty to half full. I have my resulting deficits, but God had given me so much before and since then. It is what you make of it.

Apr 29th, 2015 11:06am

Does the writer of this blog have aTBI? My life was taken away by aTBI 25 years ago. I'm just now letting go of my anger somewhat. Ive struggled to get back to normal for 25 years but since that hasnt worked i have finally softened around my "prison" sentence. My issue with this article is that I am in a bad relationship. I can't just walk away from it because i can't work and support myself. I rely on this person to take care of my financial needs because i can't. You make it sound so easy to fix your life after TBI but it's not that easy. In fact your article sounds like a fairy tale with happy ending and I'm sorry but my life does not have a happy ending. I'm kind of pissed off right now at the authors flippant attitude that is so easy to choose your life and make decisions that make your life just what you want. I have lost the ability to make decisions that i might normally make if this hadnt happened to me. Walk a mile in the shoes of a brain injured person before you make such pie in the sky statements about how we still have the capacity to live the life we choose.

Apr 29th, 2015 9:23am

Greetings, it was a great article!  That being said it's easier said than done.  LOL :-)

Apr 29th, 2015 9:16am

Purty much suns up the past 6 years fer me. But as you say. Its a unique way to really understand how short life really is. It sets perspective of lifes events which very few will get the opportunity to realize at our increased abilities of emotions. its actually a gift in a philosophical sense. Mortalityx2. ;)

Apr 29th, 2015 8:37am

Thanks to all your comments struggling to see a way forward at the moment . Mildly affected but no longer myself and no one gets it everything is a struggle ..... It was nice to identify

Feb 18th, 2015 4:51pm

I am an ABI survivor - but hey a brain injury is a brain injury - I loved the blog.  I had never really sought to be normal even before ABI.  My uniqueness and my value comes from all of my experiences - the good, the bad and the indifferent.  As a child I loved Popeye the Sailor and as an adult with ABI I look back at him and can now say "I yam what I yam" and proud of it.

Jun 26th, 2014 7:16pm

Yep. She's on to something.This is my theme song.- Bruised Orange by John Prine. *** My heart's in the ice house come hill or come valley Like a long ago Sunday when I walked through the alley On a cold winter's morning to a church house just to shovel some snow. I heard sirens on the train track howl naked gettin' nuder, An altar boy's been hit by a local commuter just from walking with his back turned to the train that was coming so slow. You can gaze out the window get mad and get madder, throw your hands in the air, say "What does it matter?" but it don't do no good to get angry, so help me I know For a heart stained in anger grows weak and grows bitter. You become your own prisoner as you watch yourself sit there wrapped up in a trap of your very own chain of sorrow. I been brought down to zero, pulled out and put back there. I sat on a park bench, kissed the girl with the black hair and my head shouted down to my heart "You better look out below!" Hey, it ain't such a long drop don't stammer don't stutter from the diamonds in the sidewalk to the dirt in the gutter and you carry those bruises to remind you wherever you go.

May 26th, 2013 5:24pm

It's been almost 22 years... I ve been 11 days at coma after a tbi, life has not been easy at all, but the most important: never give up, at any price. Every day of my life is a gift and I will be forever thankful above anything in the world, never give up!

May 1st, 2013 2:20pm

I agree. I have constant head pain. I have dizziness, nasea, and fatigue daily also. Cognitively Disordered TBI survivor.

Apr 15th, 2013 6:15pm

I just wanted to be functional and I'm devistatingly afraid and depressed that I have now completly ruined my life beyond correction that I'm also unable to accept or adapt. Partially because the loved ones i CHERISHED ARE NOW SILENCED AND NON SUPPORTIVE. In some cases even abusive and detached from any discusson regarding the matter.

Jan 2nd, 2013 12:07am

I wish right now I could find my positive attitude. I\'m very new to my TBI, just a little over 2 months. I use to be a warrior mom for my daughter who has several mental disabilities herself, I use to be a foster mom, I had autistic children in my care, I would multitask like no other, I had a career in the medical field...now all that is gone. I can\'t foster parent, loud noises I can\'t handle. My FASD (fetal alcohol syndrome disorder, she was adopted when she was a baby, now she is guiding me through the maze of an injured brain. I am having a hard time accepting that. I am having an even harder time with this holiday season. I\'m the mom that does the meals, decorates, I make them special and I can\'t. In my therapy session yesterday, I cried like a baby, mourning losing my old self and I can\'t accept this new person. Just deep despair! But my therapist said to stop being so hard on myself and to learn to say \"I\'m ok\". How long do I let this despair go on? How do I accept the fact that my old self is gone? Yes, I count my blessings everyday, by all practical purposes I should be dead, head in collision, no seatbelt, didn\'t work. No broken bones, no internal bleeding, just a brain bleed, post traumatic amnesia and TBI. Yes there is a God and I know he loves ME! But how do I accept my changes and accept my losses. My memory problems, cognitive reasoning, my emotions are all over the place, it\'s a wonder my family doesn\'t think I\'m nuts. Diane

Nov 20th, 2012 9:04pm

Thanks for the beautiful article! It really hits the spot for me. I am in PCS for one year this week. Still living in the fog with daily nausea, dizzyness, headache, fatigue, and memory stuff. I am 58 years old, this fall has changed my life to say the least. Just saw a new neurology doc yesterday, same thing PCS, looks like I will be dealing for this for a couple more years, Can not really imgaine that! But, I did get off the bench last week! The bus never came for a year! I am slowly starting to "putter" around the house and yard! PCS if truly not for sissies! I am enjoying your site...Gayle

Apr 18th, 2012 12:39pm

I am nearly reaching 3 yrs post tbi and its been a long long road , I know now also that its a forever road , My wishes are with all of you x

Feb 27th, 2012 12:01pm

I would agree, most people are intolerant of people with tbi\\\'s. We are misfits forever trying to fit.

Feb 16th, 2012 5:28pm

To the comment posters - I see all sides of what you are saying. I have had a TBI for 7 yrs, the first half I wanted to make people pay, anyone and everyone. I was mad, hateful and misunderstood. It has been difficult and I can comfortably say my life has been ruined. However, we are all different, and brain injuries are individual to the person, so not all of us will suffer the exact same way or recover the same way. I enjoyed the article, and didn't feel the negative feelings some comments reflected, but after a minute I felt and understood where all of you are coming from! In the last year or so I am starting to see that I have gained a few things, it cannot ever compare to what I lost, but that is gone, I accept that and now cherish the few benefits - compassion, understanding... It isn't much I agree, but after losing so much it is nice to have anything "better" than before ;) It gets better with time, slowly. Peace

Jun 30th, 2010 3:04pm

I love it, so true!

Jun 14th, 2010 10:18am

While I do wholeheartedly agree that letting go of anger is required to move after brain injury, it must be acknowledged, and it is a process we absolutely must go through. Post injury, I was in denial for a long, long time. I did not acknowledge my anger, my long list of losses, and over time they have only become glaringly evident in every aspect of my life. I don't think it is fair to suggest people ought to feel blessed, or like they have been given a gift of some kind. I can tell you I don't feel blessed at all. I don't feel like it was a gift to be t-boned by a dump truck 3 weeks after I turned in my masters thesis. I do, however, feel very proud of the hard work that I have done in my rehab, and the hard work that I continue to do. I feel proud of the fact that, after years of tremendous fear, I can say out loud the words "I have a brain injury", without fearing the stigma attached to those words. I do appreciate life, love, and family. I did before my injury as well. I don't want to think that because I went through this trauma in my life that I know some secret that other people will never know in their lifetime. All that's important to me is that my core is the same as it's always been. I can do my part in showing people that some of the stigmas attached to brain injury are wrong in having the same passion for things as I always did. Maybe some of those things are different, but my drive is still there. In thinking like that, I don't scare people. I am comfortable sharing my story, but I can see that while some are amazed, others seem intimidated. I'm only honest in sharing my experiences, and i see a lot of people feel a sense of guilt that they've not experienced a huge trauma in their lives. This is why I don't talk about feeling blessed. I'm not blessed. I just live my life and hope that my hardwork and honesty inspire people.

Dec 2nd, 2009 1:10am

talk about the other side plz will ya?

Dec 1st, 2009 11:47am

One of the best articles I have read on the subject. YES!!! Kara!!! Blessings, Jennifer A. TBI Survivor

Dec 1st, 2009 9:35am

Love the positive attitude. I hold one myself, and it is A CHOICE....but it brings so much MORE back into my life when I put it out. And no, this is not an injury for sissies ;) It is hard as hell to get through the day, but we do...and when we do, let's look for the lessons, the gifts!!

Nov 24th, 2009 3:26pm

I no what u mean i have tbi and felt like a baby. I had to learn how to talk,walk,eat sometimes it feels like you just started a new life and maybe a little impulsive. the best thing is that were a still alive but in a new way. a way that teaches u to "never give up"

Nov 21st, 2009 7:21pm

While it gives one a fuzzy feeling. Honestly your article made me more depressed. It isn't as easy as waiting for the bus to show up. Who pays the bills in the meantime? Insular is not even addressed here because every single person I know is gone now because I am different. Most people are intolerant to brain trauma individuals...we don't fit in....

Nov 20th, 2009 10:28pm

Wonderful!!!! It says it all! mlw

Nov 11th, 2009 8:53am


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