Has this happened to anyone else?
 

I am visiting my parents out of state and last night my mom suggested that I go through some family pictures to put into a frame she bought me that I can take home with me.

I opened the box of pictures and found two of me when I was younger, one at maybe age 10 the other at 17. (I had my accident at 28).

I saw the happy, confident girl in those photos and it felt like I was looking at photo of a relative who has died long ago. Like that the picture wasn't a picture of me, but of someone who doesn't exist anymore.

Not only was that alarming for me to think about, but I really feel like I'm never getting that happy, confident part of myself back and it scares me.

Sorry... just needed to vent where someone might understand.

I TOTALLY understand what you're saying and I can see how the pictures triggered your feeling of, well, alienation.

Before my horrendous MVA, I was a professional writer. When I look at my previous publications, I can't even imagine how I wrote them. They are the product of a subtle, deep thinking, nuanced, intuitive and highly structured mind. I'm not that person. That person died in the MVA.

I found just having my old work around so depressing that I finally gathered it all up and burned it. In a way, my mind got the cremation the air bags denied my body.

I'm sorry if that sounds black, but that's the way I feel.

I have met TBI patients who have no insight into their current condition, and think that they are 100% okay. Maybe they're the lucky ones.

I tossed all my work in the hope that not being haunted by the ghost of my old self, would help me come to terms with living with the new one. Will it help? I don't know, but, as I've got obligations to my nearest and dearest, I have no alternative but to try and move forward.

Smiling eyes,

Just had this conversation with husband last night.

He has gotten all my folders of pictures on one laptop finally. I have thousands and they are all organized but were spread among four laptops.

As we looked through them I realized how different even my vibrancy is. I look so happy, confident, put together...now I struggle to dry my hair.

I does hit me at times. I want my old self back for me badly, and for my daughter. My husband is thankful I've come this far and I didn't pass from the accident.

I'm still left wanting more. Not to work 50-60 hours a week life before, but to be sure of me, confident, at home in this new skin, able to be in public more, think and respond faster, drive-not far, just around town, and have ME time. Be with my family on outings, sports events, hikes, mountain climbing, swimming, playing, singing and dancing, cooking by myself, cleaning my house from top to bottom (May sound strange but it's soothing for me), reading.

It's really like changing a lot of who you have been and making a new life.

Smilin, I understand, and I am extremely thankful to have you and others to confide in and celebrate, commiserate, and just Be among as I am.

Months ago I read a post for a more elder member and she said she needed a break from here. She thought emotionally it kept her in a certain frame of mind. I don't remember her words exactly, but I thought I should do the same and she if I am any different.

Nope. I wasn't more positive or less focused on what's happening or more. I missed the companionship and feeling that people 'get' me.

I am going through stages on acceptance about all this I guess. I'm farther along than I the first few months, but as everyone says, this is a long path I'm hiking. I have no idea where I'll end up.

PM me if you want to chat.

Peace and wellness,

Jace

I think it's natural to go through a mourning period. In fact, I think it's necessary.

It all happens so suddenly, doesn't it? There's no getting used to the idea. On second I was an active, athletic professional, then I opened my eyes and I was some stranger battling profound physical and cognitive challenges. Not much chance to get used to the idea. It was like waking up on an alien planet - minus the probing. ;)

There seems to be stages in the emotional recovery. The first, for me, was denial. I just thought I could will myself back to my old self. Well, that was a disaster. :thud:

I think, now, I could be reconciled to my situations if I could just be a more positive presence for the people around me. It bothers me that I can no longer contribute an income to our family. I hate myself for the outbursts of temper.

I know! I know! I'm struggling with trying to think through if I can return to work. I can't really read more than 30 minutes at a time. I can't really write or think like I use to (I'm a university professor). I'm not dynamic thinker anymore.

The person I use to be is no longer. It's now almost 2 years-I'm no longer in mourning. I'm too fatigued to be angry. I marvel at the energy I use to have.

I'm not quite angry-not celebrating the little things. Suspended somewhere in between.

I can do more than I could before (which is great!) - but I doubt that I can do all that I could before.

But I saw ambulances and police cars surround someone laying on the playground today after picking up my kids. I don't mean to be morbid - but if anything this pcs has taught me is that it all could have been much worse.

be well all of you- this community has given me so much. has affirmed so much.

I can't thank you guys enough.

I've been at this now for over 3 years. Berkley- your description is exactly how I feel right now.

I'm thankful for the progress I've had, like being able to start back to grad school one course at time. I know I should be grateful for this opportunity because many have it much worse than me. And I'm thankful I'm alive. But the never ending severe fatigue and the flat affect that I honestly haven't felt true happiness in over three years, its just so overwhelming at times.

I've gone through the cycle of stages of grief. I guess I didn't expect to be caught off guard like that. But like someone said, the vitality that was there, the confidence, the happiness, it's gone. And I don't think it's coming back...

Interesting post SmilinEyes.

I was just recently backing up my computer and pictures and found some pictures from about 4 months before my injury, of me riding a horse in the rocky mountains and was startled when I didn't recognize myself.

I mean, I knew it was me, but like you described, it was like looking at a different person that no longer existed. Yes, the pictures are now 2.5 years old, but that's not THAT long ago and I've not drastically changed my appearance (not gained weight, changed my hair style or colour, etc).

But when I compare that picture to myself now, while they are similar looking, they are very different looking people... its very strange.

I also showed my husband the pictures and he immediately also noticed the difference without me saying a word, but could not really put his finger on what's different either... the only things he could come up with were "you carry yourself differently now" and "you have a different look in your eyes".

He also went onto say that no one goes through 2 years of constant pain, exhaustion and struggle without being changed somehow.

It was and is disconcerting though. I've mostly spent the last 2 years trying to survive, fight and somehow get back to where I started, I think the reality of my situation is just starting to really sink in, even though my health care team has been trying to manage my expectations from the beginning, there's still a big part of me that refuses to accept that, so seeing the pictures was a slap in the face for sure.

My thanks for posting this topic... always good to know we're not alone.

Starr

If you don't mind me asking, what's your subject area? I'm married to a professor.

When your whole life in based on your cognitive abilities and, driven by your intellectual curiosity, I am sure that it is exceptionally difficult to come to terms with a TBI. A brain injury is a challenge to every patient's sense of self,but that must be doubly true when your identity is so inextricably entwined with your intellect.

I feel for you.

Hi Ladies,

It's amazing how your words sound so familiar. Plus husband to husband. My husband looked through the photos with me Thursday night and his heart sank seeing the difference.

Like one of you said, it's not a physical thing. It's your presence, your light, confidence, it's not the same. I miss being a leader, the organizer, the social event planner, all of it.

I'm not that woman anymore. And where do I belong now? My fellow teachers are all masters of the above and I'm not registering anymore. My friends all work, run a household, are very active. Limbo is right.

I can't maintain all the relationships prior to the accident. I have two besties that stay in close contact with me and one of my former Principals I worked for that emails me EVERY night. He's a good man.

Thank you for sharing those raw emotions ladies. I know here that my alone feelings calm because others understand.

Peace and wellness,

Jace

Ah, thanks to all of you and your kind words. They soothe this soul.

I teach East Asian history, mostly modern Japan. Although that all seems like a lifetime ago. Last year I got proofs back for a book I was editing and I cried because not only could I not read it (double vision-), I could not understand it.

I can't even fathom teaching - the course syllabus seems foreign - but it's the energy levels and the fatigue and the pace of it all. Every day I can sustain maybe one hour of activity, before I wilt and my brain shuts down.

I know that once I have the energy and then the vision improves then perhaps I can begin to put the pieces back. But I'm not there. Maybe I won't be there for a long while. I don't know.

I know life is always changing, and we are adapting. WE are in transition. Hugs to you all-

I understand where all of you are coming from.

Hugs back B. :hug:

Hi Everyone,

I just read this post, and I know exactly how you all are feeling. I have improved with my Neuro rehab, and I am so grateful to have been able to participate in a wonderful program. I am a medical professional who had 18 years of practice before the injury. The Neuro rehab team thinks I can eventually return to work (initially thought my former profession), but now that they have done other tests with processing speeds, visual-spatial activities, multi-tasking, and visual motor skills they do not think this is possible at my current status.

I also told them I do not feel capable of direct patient care anymore, and I feel I would be putting them at risk, which they all agreed was true. It is hard to accept giving up a career I really enjoyed, but I know the potential danger in returning if I am no longer capable of helping people.

I also have not returned to my musical outlet because I am not capable of playing guitar or singing for more than 2-3 songs, and I played and sang in 2 bands where we would play up to an hour to 1 1/2 hours ( about 12 songs) with little to no break.
I can't even consistently sing along to songs in the radio as I once loved to, but at least I can sing and play for even a short time.

It is hard to accept the visible and "invisible" changes brought on by a brain injury. I find it especially hard to continue to "press on" when it seems like I have reached a plateau in some areas. This injury is much harder to recover from than others, because there is no set time limit or expectation of recovery period. And I find it particularly frustrating when I seem capable of doing a task one day, then incapable of doing the same thing on another day, like taking down important messages for appointment dates and times. I messed this up so much, I begin not to trust myself.

I am not losing hope, I am simply trying to find a place of internal peace which says I am where I am now, and if it never changes I can live with it. I am always hoping for healing, but I found a journal from last August, and I couldn't believe how much had changed, but also what really hasn't changed for me. Had one of those moments that you all felt when looking at pre-injury pictures.

I am in the process of getting a referral to a Neuro-optometrist to help with my visual-spatial deficit (tested 6% last week out of 100%-yikes!). I don't know what will come of this. Also doing multiple tests to find out about the nature of "spells" which have sent me to the ER by ambulance twice within a month. It's a never-ending doctor's appointment, but I am grateful for the ability to get referral to the doctors and try to figure out everything.

I am mostly grateful for the recovery I have had, but struggling with accepting what might be permanent losses and the new me, too. Such a fine wire to walk across. Please take care, everyone. I am grateful to have you all to commiserate with.
M-i-m

Hockey-

I totally feel for you. I was working full time and going to grad school full time prior to my accident. Straight A student all my life, over acheiever, etc. That's what's hard for me to reconcile. If I wanted to do well before, I just worked even harder, (although I now realize this wasn't emotionally healthy all the time). Now if I do that, I pay for it for days, even weeks. The end of my fall semester & a term paper resulted in 3 seizures over Christmas break.

I've been able to recover a lot of my academic skills through cognitive therapy with a speech therapist and accommodations via the university's disability resource office. But it's annoying because people in my master's program, (in SPECIAL ED), think there is nothing wrong with me and think I'm "cheating" or getting special help that I don't deserve, because I have extensions for some of my work or take exams in a private area to deter distractions. I HATE that I can't perform at the intellectual level I used to.

SEM,

You may need to create a distinction between your intellectual performance and your academic performance. Intellectual performance may have minor deficits while academic performance suffers greatly. You may have the same intellectual skills but need more time to use them. Academic performance is very comparative within a standard protocol of comparison, such as test taking and time to write a paper.

We often can not maintain the same performance time wise or in a large room with others taking a test and the ambient sounds and sights of such a room. We need the distraction free environment and maybe a bit more time. It does not mean our intellectual skills are less.

I am surprised that others in a special ed program are questioning your needs. They are studying to accommodate the needs of persons with special learning and testing needs. Are they just getting the additional degree to qualify for better pay or do they have a true desire to help those with special needs ?????

Your life experience will give you a very special insight into the needs of others.

My best to you.

[QUOTE=Mark in Idaho;1067425]SEM,

You may need to create a distinction between your intellectual performance and your academic performance. Intellectual performance may have minor deficits while academic performance suffers greatly. You may have the same intellectual skills but need more time to use them. Academic performance is very comparative within a standard protocol of comparison, such as test taking and time to write a paper.

We often can not maintain the same performance time wise or in a large room with others taking a test and the ambient sounds and sights of such a room. We need the distraction free environment and maybe a bit more time. It does not mean our intellectual skills are less.

I am surprised that others in a special ed program are questioning your needs. They are studying was to accommodate the needs of persons with special learning and testing needs. Are they just getting the additional degree to qualify for better pay or do they have a desire to help those with special needs ?????

Your life experience will give you a very special insight into the needs of others.

-------------------
Mark-

I agree with you about intellectual versus academic functioning. It was hard in the beginning to accept accommodations, but I know that without them, I can not give my best work.

I think it goes back to this being an "invisible" injury. A lot of people in my life judged me prior to this by my academic/intellectual abilities. Now that I need accommodations to show my best intellectual ability and people can't see how bad I'm suffering on the inside to have the same academic abilities, (via accommodations and the help of a cognitive therapist), I feel like I'm not good enough. (I have always had very low self-esteem and this has really shook me even more).

And yes, it makes me sick that many of the people in my program don't understand my need for accommodations. Our program is mostly full of people who work for nonprofits, so money is not the motivation for completing the program.

My first professor when I started back, said that he didn't really feel my "accommodations were necessary" when I handed him my letter from my disability resources office. A class later, a classmate asked me how I got lucky enough to get out of taking exams, (but I was really taking them in the academic testing center instead of with my class). And this past semester, someone asked me if I visited my Dr. in jail now because they consider me disabled and have provided paperwork saying so.

But the BIGGEST blessing, is that I now understand so much more what my students go through, especially those with autism who have sensory issues. It's going to make me a much more compassionate, understanding therapist when I hopefully can return to the field when I finish my degree.

Why are the "caring" professions filled with so many uncaring people? :(

Me Too
 

I cannot even respond like I want to because I will get upset. I just want you to know I can relate. It is very hard to deal with.I had to let the Higher Power take over and form this new person I am becoming:grouphug:

Oh gosh yes... though it's a couple steps worse for me, I suppose, because I also feel this way about thoughts and memories. They're still there for me to access, albeit without anywhere near as much ease, but they feel foreign. Formed and stored by a brain so significantly different to the one I have right now that they may as well not be my own. Weird to describe.

Welcome, Puppeteer!

Yes, I know what you mean. The memories are yours, but not yours.

Do any of you feel like you're just going through the motions emotionally and not really connecting, like you used to?

I love my child, but she feels I'm distant - and I think she's right. :( It never occurs to me to be spontaneously affectionate. I can't seem to describe it. I'm just not a complete, integrated personality. It's like I'm watching my life, rather than living it.

I can relate to this for sure. I find this with my husband. I have to make an effort to be affectionate and kind of go through the motions, even though I don't feel it, for his sake.

Like remembering to kiss him when he gets home from work or hug him when he's feeling down or hold his hand if we are sitting together on the couch. Those things used to come naturally because I wanted to, not anymore.

And things I used to like, now kind of irritate me. Like he'd put his hand on my back and rub if I was upset, now I can't stand that. Its not comforting, it just makes everything worse. It's ok if he'll just put his hand on me and leave it still, but there's something about the movement that I just can't handle.

I've told him many times about how this now bothers me, but he doesn't seem to get it and continues to do it. I don't know why this changed, but it did.

Same with holding hands, he always wants to move his thumbs around on my hand and I can't stand that either. Just hold still, that I can tolerate!!

Starr

OMG! I feel the same way about being touched. If my husband strokes my arm or head, I put my hand over his to still it. I just can't stand the movement. :eek:

I understand the touch thing. Also, I used to sleep with my hands clasped together (like I was praying), and now I can't stand to do that. It just feels so weird. I don't even know how to describe the sensation or repulsion that I feel when I try.

Mine isn't so much touch, but that I startle like crazy. If my boyfriend taps me on the arm to get my attention, and I don't see it coming, I gasp loudly and jump and I feel extremely anxious.

The other day, I was facing my house and my neighbor said "hello" and I gasped so loud that he apologized repeatedly for having "scared me". I felt so silly!

Yep, I've got the exaggerated startle reflex. It's pretty common in TBI patients - but it drives my husband nuts. :(

I've also got the crazy startle thing going on ... to the point sometimes I startle so badly it makes me cry. Doesn't that make me feel like an idiot?!

It used to make my husband and my grown daughter nuts (before she moved out on her own) but after over 2 years, now my husband just rolls his eyes and says "Can't you get over that??"... Umm, no... I can't... I don't startle on PURPOSE!!

The only improvement with the startling I've been able to make is to occasionally control the outburst of swearing that accompanies it. Sometimes I can manage to control the volume of the swearing and at least not yell obscenities and sometimes I can manage to curb them before they get going.

The swearing is new with my injury and very out of character for me and would have never happened pre injury, so it is incredibly embarrassing and alienating to people around me. I've managed to learn to stop it in almost every other situation other than the startling situations, but I keep working on it.

Who knew falling on my head would bring out my inner sailor?? :o
Starr

Hi everyone,

This subject gave me a really good chuckle!! I was so sensitive to my husband's touch initially. I'd startle, then want to slug him! Now I can tolerate him touching my back or holding and rubbing my hand, which he used to do a lot before the injury.

Just took a little time and healing, I guess. I don't startle as often as I did, either.
Take care, M-i-m

OMG, my accident made me a potty mouth, too.:icon_redface: I didn't use that sort of language before, but I'd heard a lot of it in hockey dressing rooms.

I have tried everything to stop myself. I tried putting a dime "fine" in a jar every time I cussed. However, I abandoned the effort when I realized I was going to be able to pay off the U.S. national debt.

yes, a potty mouth, and I have no filter. A bad combination around my 3 children.

But it all makes for some laughs!

Yes, very familiar with the lack of filter and potty mouth combo! So not good!

But its important to me to be able to TRY to fit into social situations... its bad enough that loud noises, background noise, bright lighting, florescent lighting, not being able to remember people's names or other personal details, feeling miserable with a constant headache, lurching around with an odd gait walking with my cane, crying easily, being easily angered, laughing inappropriately interfere with my ability to socialize, I draw the line at blurting out swear words in the middle of conversations too!!

So I have worked hard at trying to at least minimize this really alienating behaviour... and honestly its hard... the lack of filter makes it difficult.

The things that have helped a bit are:

-- practicing "normal" conversation at home before hand. Things that might come up during that particular event and the appropriate response to common questions that are likely to be asked. It seems the swearing comes up more when topics come up that surprise me or get me riled up.

-- practicing "stop and think" before answering. (I got this tip from one of Mark's posts! :) ) There's no need for an immediate answer when someone else says something. There's ALWAYS time to just take a breath and consider what you're going to say.

For me, this also seems to help minimize the swearing... in a few ways. The surprise factor, as above, gives me a chance to try to get that under control and also with word finding... because it seems if I have trouble word finding, then my brain fills the blanks in with swear words.

It also gives you a chance to try to really think about what's about to come out of your mouth and try to practice "installing the filter" again.

I've been practicing this for well over a year now and honestly its still hit or miss, but I try hard and when I'm focusing and I'm not too tired, it does make a difference. I find it exhausting though and I had hoped with practice it would get easier, but so far, not so much, but I keep at it.

I figure its just part of the rehab process, just like working on learning to walk properly again... which I've been working at for over 2 years now. :o

Starr