After my traumatic brain injury (TBI), a trauma doctor, a neurologist, and a brain surgeon watched over me while I was in the ICU and trauma wing of the hospital. I am extremely grateful for their help during that fragile and scary experience. However, when I left the hospital, they largely left me in the dark regarding traumatic brain injury recovery.
With help from others (mostly my mom) I was able to connect with resources to help me face the challenges I was having. Lo and behold my challenges were very common for TBI survivors. I had no idea that other people were facing the same thing.
I wish my doctors would have prepped me better for what life is like after a TBI. If you are new to the journey of at TBI survivor (or still trying to figure things out), here are 10 things I wish the doctors would have told me about traumatic brain injury recovery before I left the hospital.
1. No Two TBI’s Are the Same
Even when people have similar challenges as a result of their injury, the speed of a recovery, how much a person recovers (50%, 70%, or 90%), which medication can help resolve symptoms (if it works at all), and many other factors vary widely from person to person. You can’t see a person who recovered 100% and say “that will be me”. You also can’t see someone who faces significant challenges after a long period of time and think that you will not make any improvement.
2. There Are Groups with Resources to Help TBI Survivors and Caregivers
Lots of them. In the US, the Brain Injury Association of America is a great resource with branches in many states. The branch in California put me in touch with a doctor that really helped me. Another good resource are hospitals. They often host support groups for TBI survivors and their families. If not, they will be aware of the groups that do meet in your area.
Please take advantage of these groups! Everything changes so much for everyone involved, especially the relationships between them. The support groups give you a place to vent your frustrations and get support from other people walking the TBI road.
For some help with exploring the new relationships, I’ve written two articles, one for survivors, and one for family & friends that highlight some of the big changes and give ideas for addressing them.
3. There Are Some Very Common Deficits after a TBI
Since a TBI affects your brain, it can ripple into every part of your life. Some of it also depends on the part of the brain that is affected. Nevertheless, here are some common ways that at TBI shows up:
- Memory problems, especially short term memory
- Bad temper/mood swings
- Balance
- Visual processing
- Motor control
- Depression
- Anxiety
If you are experiencing any (or several of) these effects after your TBI, know that it’s completely normal for TBI survivors. If you have any doubt about that, go to a TBI support group. You WILL find survivors there who will offer you encouragement because they dealt (or are dealing) with the same thing.
4. There is No Time Threshold for Recovery
The medical opinion used to say that said your recovery will happen within two years. It also said that whatever abilities haven’t returned by then will never come back. Some doctors who don’t specialize in traumatic brain injury recovery, continue perpetuating that myth. Over the last several years, doctors have found that our brains are capable of learning indefinitely after a brain injury.
I can tell you from my own experience that this seems to be true. My accident was nearly 6 years ago. Although my recovery was the fastest in the first two years, I still feel and observe occasional improvements in different things. Another example is of a woman I met recently at TBI support who is starting to learn to walk again. Her injury happened 13 years ago and has been confined to a wheelchair since then. It’s a long road. Don’t give up. Keep working at it.
5. Spend Some Time Investigating Alternative Approaches to Dealing with Your Symptoms
Medication did provide the biggest breakthrough to controlling my temper after my injury. However, I wanted to explore additional options to cope with it. I found exercising to be very helpful. Mindfulness meditation also provided some help. I still use both of these strategies on a regular basis. I haven’t used it myself, but some people in support groups mention that aromatherapy helps them. Explore the different options and listen to your mind and body to see what works best for you.
6. BEWARE of Overstimulation
Yes, I put beware in all caps. This is a big deal. I can’t believe that no one mentioned this to me when I left the hospital after my injury. Many TBI challenges are made worse once your brain is maxed out. An injured brain’s tolerance for stimulation is much lower than a brain that is not injured. Remember any outside input is stimulation.
For me, by biggest challenges were on my phone. Too much social media, YouTube, and too many games. I also watched to much TV. The stimulation from those activities accelerated me reaching my threshold. Once I maxed out, I became more irritable, had a harder time focusing on important tasks, and had a harder time remembering stuff. Give your brain the down time it needs to recover. Over time you will likely be able to tolerate more outside stimuli. But at the beginning, take it easy.
7. Balance Pushing Yourself and Allowing Down Time
I firmly believe that getting back to work quickly helped me recover as much as I did. However, in retrospect, I might have done it differently. For the first 6 months I didn’t know I needed to beware of overstimulation, so I would work like I was operating at 100%. But by 1pm everyday, I was maxed out, irritable, and extremely angry. Some down time during the work day, or taking on fewer projects would have helped me avoid that anger. Listen to your brain, your body, and those closest to you. Push yourself as much as you can, but back-off when necessary.
8. Physical Fatigue
Rebuilding a brain must take a lot of energy, because it can leave you very tired. During the first few weeks after my injury, I slept for 12-16 hours a day. I needed 10 hours of sleep per night until about 3 months after my injury. It’s normal, and it’s giving your brain the time it needs to heal itself.
9. You Will Be Living with an Invisible Injury
It’s quite likely that you have some physical injuries associated with whatever caused your TBI. Most of them will heal 6-12 weeks after your accident. Once the casts, splints, and braces are removed, people will stop asking what happened and assume that you are doing well. It’s hard to blame them, because there aren’t any visual cues telling them something is wrong. Any of us might do the same thing.
Of course, we know that we have an injury and we are healing. Since our injury is invisible to others, there will be times when we seem “off”. Maybe it’s a word that we can’t seem to find, or we are unusually forgetful or irritable. People will make a judgment, because they don’t have the whole picture. It’s tough to be on the receiving end of those judgments.
10. Accepting the new normal
After a TBI, we can’t hit an undo button. This is who we are now. I spent a lot of time worrying at the beginning of my TBI journey because I didn’t want to accept this. Once I accepted what was, it made it easier to look at what was in my control and start working with that. My post-TBI life became a re-start opportunity. Reframing the situation didn’t make my problems go away, but it did make it easier to face them.
Bonus: Give Yourself Time to Grieve
I nearly forgot to include this. The transition from the “pre-TBI you” to the “new-TBI you” is very real, and it’s a lot like mourning your own death. Sounds odd, I admit. However there is a real loss that happens after a TBI. Some of what we might experience includes the loss of cognitive function, the loss of your old personality, of your memories, the loss of physical abilities, the loss of relationships, the loss of employment, to name a few.
Note to the wives, mothers, girlfriends, etc of men who have experienced a TBI. Grieving does not equal crying. Crying can be part of the grieving process, but it doesn’t have to be. There are lots of ways to grieve. If your man grieves one way, and you grieve another, that’s perfectly normal. What’s important is that you support each other in the process, so you can prepare for the journey that is to come.
Note to men: Guys, we’re not always great about feelings. We’re tough, want to be independent, and have a hard time admitting when something is wrong with us. But this grieving process is important. It helps you process the changes that have happened, face what is, and prepare for the new journey into the future. And I am not telling you to cry. Crying might be part of your grieving (it was for me), but it doesn’t have to be. Find what works for you. If you’ve had a TBI, take the time to grieve what’s happened. It will do worlds of good to help you through the recovery process.
The grieving process also applies to those around us: spouses, children, parents, friends, and employers. You can check out this great article from Brainline about about the grieving process after at TBI.
Traumatic brain injury recovery is HARD, and it takes more grit that I thought I had. If someone had shared this information with me at the beginning, it would have really helped me regroup sooner, work smarter, and be more patient with myself.
Is there anything else you would have included on this list? Leave it in the comments below.
If you found this guide useful you can sign up here to get get ideas and support to help with your recovery from TBI. Starting tomorrow, you will receive my 4 part email series where I cover several techniques to help you (or your loved one) with the TBI recovery journey.
Really great article and some excellent advice, I have an ABI after a stroke and these points really resonate with me, especially the time to grieve the loss of my old self and the return to work,points, early is good but not too early, however it is what everyone focused on from family to doctors to therapists.
My husband had a massive stroke Feb.11/09 & spent 3 months in rehab. He is still paralyzed on his right side, uses a quad cane to get around a little. Has never gained his speech or able to write since his stroke. He is completely aware of his limitation & his sense of humour & knowledge is still there. He was extremely outgoing in natural with many friends & the last few years have been very trying with him mostly watching tv, no company or friends to occupy his time & doesn’t seem to want to participate in anything including going outside in our frigid winter. We have survived 10 years together at home with me being his full time caregiver & home care comes twice a week for his bath. No other resources are available in our town to help so I find I do get frustrated when he is unable to do anything for himself & am trying everything possible to keep us together.
Lynda,
It’s awesome that you have both come as far as you have, and it’s great that you continue to look for resources to support you.
I’ve written a few articles regarding relationships and brain injury. One from the perspective of the survivor, and another from the perspective of family and friends. You might find them useful.
If you find them useful and would like to go deeper, look into my coaching packages to get some support personalized to your situation.
Ihave spent more time then I’m able to explain here, just trying to figure out why I deserve this body? And being trapped in it. After 46 years of being free to go on adventures and finish many large projects. And now I get tired just taking a simple shower. Why isn’t there a pill that stimulates brain recovery?I’m amazed by the lack of great TBI healing methods.I’m sure some one is sitting on the cure today. But they must think that there is no money to be made. anouncing the discovery. Who knows, but I’m ready to be whole again.
Hi Randy, I’m sorry to hear about your challenges with fatigue. It’s a common side effect of brain injury.
There are some centers around the country that have made great strides in brain injury recovery. The unfortunate part is that, to my knowledge, they are not covered by insurance.
I am most familiar with Cognitive Fx in Provo UT, although I am aware of others.
These types of facilities are relatively new. Hopefully as their track record gets longer and better documented, insurance companies will see their benefit (even though it should be obvious) and start covering them.
You might want to look into neurofeedback. I am a practitioner and have worked with many Tbi clients to improve flexibility, resiliency and over all function. Addressing the cascade of neuroinflammation that only begins with the TBI is also a huge piece if the healing equation often never mentioned. For excellent results addressing this issue I recomend these products to anyone with head injury:
https://cart.lifevantage.com/US/shoppingcart/share/96df5257-a762-42e4-9b67-a5a58a1bdee2
Hi Duncan!
Thanks for commenting.
I’m sorry to hear that you’ve had multiple injuries. How is your recovery going?
How long did it take to grieve the loss of your old self? Did you feel weird when you started to express it in those words to others?
I know I did. As odd as it is to mourn yourself while you’re still alive, it’s extremely common, and an important part of the recovery process. It blows my mind how many doctors don’t tell their patients (and caregivers) to expect this to happen.
It sounds like you were able to go back to work after your injury. Congrats on that! How did you know the time was right for you to go back?
Great article. Sums it up perfectly. We struggled along for 13 months after leaving hospital with no aftercare at all. In desperation we contacted the charity Headway and this is when things started improving. At last we had people who knew what we were going through and came up with tools and methods to help us cope. During my recovery I developed a creative side which culminated in writing the words of a song all about missing my old self. A local folk singer put music to it and put it on a CD. If you would like a copy just let me know. The song was my way of grieving and saying goodbye to my old self.
Regards
Pete
Hi Pete, thanks for sharing your story. I’d love to hear the song! Can you email it to me?
I understand where you are coming from. Generally there seems to be no emotional afercare, only the physical care. I have found since discovering synapse, my world is soo much better, since being being a TBI sufferer. Thanks for your comments. It definately makes me feel not alone and not having a disabilty.Bonnie Bennett
Hi Bonnie,
I’m glad you found your way here. You most certainly aren’t alone. I’m not familiar with Synapse. I’d love to learn more about it. Feel free to email me at marc@recoveringfromtbi.com.
I would love to hear it too. Is emailing it a possibility??
I would love to hear your song too as that resonates with me too about grieving who we once were and would love to share it also with a friend who is grieving the loss of herself. Thank you if you can email it.
I’d love to hear it! Can I still get it & how??
I would love to hear your song also…
Thank you so much for writing this article. My husband fainted from the top of an 8ft ladder in January 2018 and fell head first into concrete, he sustained fractures to the base of his skull and eye socket but literally escaped with no other injuries. The skull fractures ended up letting air into his brain which needed to be surgically fixed (9.5 hour surgery). So we are now 7 months post injury and what you speak of is so true. We are still in the throws of continual doctors appointments and hospital visits but we are hopeful that the major work has finished. Im definitely going through a grieving process now that the dust is starting to settle. Your words have really helped us.
Marie, thanks so much for taking the time to leave such a nice note!
I’m glad the surgery went well and that the worst of it is over. How is your husband doing? Physically? Cognitively? And how are you doing?
It’s likely that this period of dust settling will find you both processing the current state of things and adjusting to the new normal. I hope things go well.
Your husband is lucky to have you.
Sometime tonight, you should be receiving a special email that might be helpful to you both. I’d love to know what you think of it.
Best of luck to you both through the adjustments you have made, and the adjustments that are yet to come.
Thanks Marc- he’s finding it tough at times when (what we call Abi) takes over. He’s frustrated because all he really wants to be doing is working. Physically he gets fatigued if he does too much outside, and he has a lot of trouble self regulating. This past week has seen me have a breakdown getting used to the new normal- it’s tougher now than it was when he was in hospital. I am so glad I somehow found your article this morning. I will definitely respond to your email as I think it will really help both of us. We also have a 5 year old daughter, a farm to run and I work 4 days a week- so there are a lot of competing priorities happening.
You guys have a lot going on.
Fatigue after a brain injury is extremely common. It’s surprising how much energy it takes to run a healthy brain, let alone one that is injured and trying to repair itself.
I think most survivors want to get back to normal as quickly as they can, but our brains have different plans.
Even if it’s slowly, I hope things improve.
I look forward to hearing back from you on the email.
having brain fatique is massive for me. It slows me down quite alot. It used to make me angry, but im now learning its part of the recovery. I suffered from a brain anerism that burst and i survived from.
Bonnie,
I wrote an article about respecting our limitations after a brain injury that you might find helpful.
I too fell from the top of an 8′ ladder onto the garage floor. I was “lucky” that I only had 2 small brain bleeds and concussion along with broken arm. Unfortunately living in a small area I was in hospital for 7 days but they were more concerned with doing surgery for my broken arm than the head injury. No neurologist was called in. We were told that I didn’t have a concussion. I had no treatment till a small stroke 3 months later. My husband took me to a larger city and my recovery began. Sending healing prayers for your husband.
I have had 2 TBI since the beginning of this year. I am still healing. This article has helped me so much. I was sad about the mood changes that are going on with me. I can’t concentrate, forget things that I start doing and what I am doing. I am with a headache that I have had for years since 2010 when I had the first TBI. I am sad at times but I have to remember that I have had TBI’S. I get lonely and frustrated when people don’t understand the hidden illness. I am gonna find a support group if there is one in the area. Jacksonville Fl.
Hi Yasmin!
It’s great to hear from you! Thanks for sharing part of your journey.
YES! Taking action to find the support you want is such an important and empowering step. Being able to talk to others who can appreciate what you’re facing can be really helpful. I found this page. It lists two support groups in Jacksonville. I hope one of them will be useful.
There are also a number of very good Facebook support groups for brain injury survivors and caregivers. Many of them are private, so you can vent and ask for support, and only the group members will see it. You can get to mine here. In addition to member comments, I also post articles from around the web that I think will be useful to survivors and caregivers who are traveling the brain injury recovery journey.
Whichever support group you choose, remember that sometimes your strength and example will support others. Through your journey, you have faced challenges and learned from them. Those experiences can help smooth the road for others, especially those who are just starting out.
Let me know if you’re looking for some other ideas and strategies to use in your recovery. I can send you some emails of things that helped me in the early days of my recovery. They were so helpful that I still do them.
Yasmin,
I fully appreciate your situation. Having an invisible situation is a “bear” to work through. I know first hand what its like to have NO support due to the fact that your problem is not physically observable. My previous employer allowed me to be verbally harrassed by coworkers, but when I said something that was misunderstood, I was let go. I had even asked for accommodation due to my situation, but it was ALL my fault.
I understand the loneliness, and the distance that you may feel. It is an extremely tiring and frustrating space to be in. My TBI occurred in 2007, and there was absolutely NO support. A site like this is a Godsend.
I am responding on this site to offer encouragement. I NEVER want someone to have the experiences that I had to endure. My wife and I weren’t given ANY help. My surgeon was only concerned about my physical well being, after 10 days in ICU. My Physician couldn’t understand why my recovery wasn’t following the textbook cases.
I found that people I thought were friends, weren’t. My TRUE friends stepped up and helped as needed, whether it may have been convenient or not. My wife could count on their help and support. Don’t hesitate to reach out to your closest friends. Having someone to talk to is an important part of your recovery. You may be surprised of the concern and love that you will get.
My closest childhood friend’s father called me the day I came home from the hospital. My memory has been scrambled, but I remember the concern in his voice. You do have people out there that will help, you need to ask. I know it may be a humbling experience, but you need to do it. I hope that they respond accordingly.
Feel free to reach out if you need. I wish you the best with your journey.
Lew
my doctor here in sweden will not even talk about brain damage only the whiplash and this happened to me at work ! Back in december 2015
Hi Russell. I’m sorry to hear you’re having a hard time getting good help in Sweden. While there are a lot of doctors in the US who take TBI seriously, there are still a lot of them who are misinformed. They are not aware of the challenges in the recovery process for survivors and caregivers. Doctors who specialize in TBI treatment have so many resources and therapies to help move people along in the recovery process. I hope you are able to find someone over there to help you out and point you in the right direction!
Yes! I wish I had known about all of these things early in my recovery as well. Thanks for writing this. I also wish someone would have given me some advice for how to help my 7 year old daughter cope with the throes of my brain injury. I wrote an article about this on my blog, if you’re interested: https://betterbrained.com/parenting-with-a-tbi-tips-for-helping-your-child-cope-with-your-brain-injury/
Hi Nicole!
Thanks for taking the time to reach out.
I’m glad you found the article useful. I included a section in my post Relationships and TBI: Tips for Survivors that address relationships with children after a TBI. I’d love to know your thoughts on it.
I’ll be sure to check out your article. It sounds like it is a great resource!
I am an American living in Sweden. The day after my work accident i went to my union ( if metall ) and was told the person who would handle my case was on vacation and would contact me. That did not happen for a couple of months. No one here has tried to help me – whiplash, tbi/abi and maybe ptsd !
I have been struggling/recovering from my surgical TBI for almost twelve years now. I wish this site had been available in 2007, especially for the medical providers. Everyone needs to know that surgeons aren’t usually aware of the post surgery effects. My surgeon’s PA told my wife that I should be “back to normal” within 3-4 months. That being said, she had an expectation. Well, I didn’t meet that, so therefore “I wasn’t trying”. Not only there wasn’t help for me, there was no help for her to cope with the new me. I had absolutely NO HELP from the “medical professionals”. My only savior was the therapist that we had been seeing. Surgeons are usually concerned about the physical conditions that are within their control, not the after effects. My own physician couldn’t fully comprehend my situation, although she was the one that found my Colloid Cyst.
A spouse or family member are the primary advocates, good or bad, that is how it is. Many have found out who our true friends are, and its a very eye opening experience for everyone.
Due to the fact that a TBI is not usually a visually apparent obstacle, it becomes a situation that is even more difficult to overcome.
Professionals need to be more informed as to our situation. I personally have had heated arguments with my Dr’s due to their “professional opinions”. We all have the battle to get through.
I am a veteran, not a combat veteran, thus I will not quit, no matter what. I had my DARK periods, but I don’t quit. My few friends have helped me more than anyone else. I was able to reach out and ask for support, and thankfully the responded accordingly. These are the times when true friend become apparent.
NEVER give up!! Don’t give the bastards the satisfaction!! Put your head down and plow them over! This has been my mantra for almost 12 years. If need be, make it a contest, DON’T GIVE UP!! It will get easier.
All physicians should be required to read AND understand this. This is an outstanding article for the caregivers that “we” rely on. My doctors didn’t comprehend what I may/did have to deal with. They left my wife with false hopes and expectations.
My brain surgery was in 2007, and it has been a VERY hard road due to the lack of information, and false expectations.
For all of us that have and will go through this, MAKE THIS MANDATORY!!!
There is nothing worse than trying your best to recover and having unrealistic expectations put upon you. We recover at our own pace, it isn’t a textbook situation.
Make them read this!!!!!!!!!!
My background doesn’t allow me to quit, others may not have this attitude, HELP THEM!!!!!
Be an advocate for a loved one, or your friend. They need it. DON’T QUIT!
Lew, thanks for sharing your thoughts on the article. I fully agree with you. If this article had existed at the beginning of my journey, it would have helped SO MUCH! Since my injury, I have been fortunate enough to talk with several doctors who are open to how little they know about brain injury. They have welcomed the information in this article and even said they will pass it on to patients.
There are good doctors out there who want to help.
Thank you. Yes, there are good doctors out there. I have made my doctor become more knowledgeable in the subject. That being said, there were times that my raised voice and visible anger were the indications that her knowledge required improvement. She has been my primary physician for 20+ years, and was the one who helped identify my colloid cyst. She also stated that her experience wasn’t familiar with all of the particulars, so we have helped each other to a point. We still will have an occasion where we butt heads, but that is me just looking out for myself, and what “I” need.
I now have a better understanding of what I need for my mental well being, and continue to work on my physical well being as she requests.
All along my journey, I have suffered significant personal losses, most of which were the supportive individuals. These were the people that made my days much better than I could have hoped for. True friends and close family members that actually cared and helped. The ones that stepped up to help my wife when needed. Those individuals are gone, so I also have their loss to deal with as well as my own.
I now have few that truely know what I have been through. It can be very tiring to continue to explain the situation to every person that you may have some type of relationship with. It’s a continual trek that I never wish upon anyone.
Lew
Excellent article. Thanks so much for affirming my own experiences. Your article is a definite keeper. I wish all neurology departments had a copy.
Barb, thanks for the kind comment. I’m glad you found the article helpful. I have found some doctors who have read this and said it was helpful to them.
How are you doing? How long ago was your injury?
Thank you Marc, for writing such a insightful article. I have experienced 2 TBI’s (2007&2017) and my daughter 6 (2016-2018). It has been a long road, with many many therapies tried, most successful to a point. I think it’s important to know when to try different therapies and when to listen to your gut about staying the course.
We are lucky to be in a time of research and understanding, still don’t understand, but most are open to new ideas if you present new information.
I have just gotten to a point of grieving, for a parent this has been a real struggle, as I deal with my own circumstances, I look at my child and I try to help with the ‘why me’, find the gift in the experience and understand I need to do the same. We have an opportunity to help, by learning and sharing our differences and our similarities, so we and other people living with these experiences, know they are not alone. When you no longer identify with who you are, it can be very lonely and isolating.
Hi Nicola, I hope recovery progress continues for both of you.
It is very challenging to get to know the new you and somehow convince others that you are a new version of yourself.
How are the two of you recovering?
My anxiety was and is still very high. It also took a little over a year for my TBI to fully happen/affect me. I felt when it happened. I was sitting in a chair at my computer and this feeling came over me: warmth, fast heartbeat, prickles, a screaming headache, and a feeling in the back of my head as if I was just hit with a baseball bat. I was never the same again. My first major reaction which started immediately (I was hit by a truck as a pedestrian) was the terror/anxiety/PTSD.
The headaches are awful. I had one that lasted 3 and 1/2 years, solid. I am afraid of myself and the inability to stay on top of my emotions/reactions and therefore have removed myself from a lot of life. I would be at physical therapy and have tears streaming down my face (for no reason) and a minute later I would want to wail the ball they had me throwing at the rebounder, at the therapist.
Thank you for including balance/coordination as an issue. That is in addition to the dizziness in my case. I cannot do escalators any more, I about had a panic attack in JC Penneys in discovering it.
In Michigan, I am having a hard time finding any help or resources especially to have some sort of employment or income. Also, the help with expenses… my auto insurance is supposed to pay but I have to pay up front and get reimbursed and they fight me so I don’t go to doctors or therapists because of the costs since the lawsuit is over. It has been 5 1/2 years since the incident.
It can feel like groundhog day, every day sometimes. Just yesterday I came up with a new metaphor for what it sometimes feels like for me: To be buried alive. My panic and the non-care of most other people it’s sad, lonely and can be terrifying. You feel like you’ve lost your own self in many ways. I feel too reliant on my husband. It’s getting better a little at a time but I have difficulties trusting my brain. My brain fog has lightened up a few times now. It used to be like trying to live in quicksand or to try to think clearly was like trying to see through a foggy windshield on a very stormy day or having the worst hangover without having drank mixed with the fuzzy cough medicine feeling. Things seem darker and slowed down for me to do. It WAS taking 3 hours to grocery shop. I was thinking slower, moving slower and distracted easily and often.
I do sometimes get the feeling like my legs from the hips down weigh a ton and are difficult to move. (I read someone else have that feeling, too.)
I have high anxiety with driving when I drive. The stimulation of people around me and lights and sights and sounds all get to be too much. I understand that in some states there is help with special glasses of a couple types and special earplugs. I also read that in some states people can get help with the driving factor (like a special drivers ed.) post-TBI/PTSD.
Where I found a lot of help and connection and validation was on sites online that discuss these things. Not just the sites but in reading peoples comments… they are a great help! That is partially why I wrote this. If it can be of assistance or even just validating it is a step in a better direction. I hope I am making sense as things come out kind of jumbled.
Hi Kathie. Thanks for sharing so much of your story. As you said, these comments are very helpful to others reading them.
Hi Marc,
I’ve had a severe TBI for close to 20years, I don’t believe the doctors forgot to tell you, as much as they don’t know enough outcomes. There just isn’t the data.
I know you have good intentions here, although I do like how you are paving the way negatively to bring out the positive – I am against messages of hate.
Really, you could’ve just been straightforward and say good points you: “Found On Your Own” or something. Don’t put other people down to feel good about yourself. imho.
Hi Shannon,
First off, I’m very glad that you’ve been able to hang in there for 20 years after a severe TBI. I don’t know anything about your injury, but it has almost certainly taken perseverance, patience and strength to keep moving forward.
I totally agree with you that the doctors didn’t forget to tell me. And the lack of information certainly wasn’t malicious. I agree that they didn’t know enough about TBIs to tell me the information I have posted here. My experience is not unique (see how many times this post has been shared?). I felt that it was my responsibility to write this article to support those who were also left in the dark by their medical providers. People from more than a dozen countries have seen this article and written me to thank me for the information. Thousands more have found it important enough to share with others.
The title resonates with people, because so many of them have experienced the same thing.
One last thing. I do not feel any hate at all for the doctors that first attended me. Sure if you’d have asked me 6 years ago, I’d have told you I was frustrated that their lack of knowledge delayed my recovery and caused me a lot of anger and tears.
However, since then, my overwhelming feeling is of gratitude for the acute care they gave me. They made sure my cranial pressure didn’t reach dangerous levels. They were ready to operate if I needed a shunt. I will always deeply appreciate it.
In the first paragraph I said “I am extremely grateful for their help during that fragile and scary experience.”
I hope this clarifies things a little. I’m not trying to put anyone down. Just offering information where it is severely lacking.
This sort of comment Shannon really annoys me. I’m the Carer of a young man living with ABI and associated conditions and disabilities. We have to talk about the negative and we also have to say how things really are so that peoples expectations of life after acute aren’t unrealistic. Here in the U.K. we have a massive problem with a stark contrast between the excellent experience of life saving and the appalling lack of support for living that saved life. Doctors don’t share info because they’re afraid of litigation if they get it wrong and also because there’s not enough time allocated to actually caring for patients. People are better able to cope if their expectations are managed in a real way. The biggest lie I was ever told was that We weren’t on our own. Positivity only lasts as long as people can see an outcome of their hope and effort. Keep telling it as it is Mark. Great article.
This was a great article and after almost 6 years from my ABI I had no help from the hospital about where to go for help and thanks to my mother we travelled alot of avenues for it but it was either groups or leaflets that we got for help and neither worked for me as I was 26 when I suffered mine but as I was fit I recovered quickly but like you said still even after 5 years i still notice certain parts of improvement.
The health care in Ireland is very limited and you really dont know where to go or what the options are but for me my rehab was training physically and time! I was self employed so i worked when it suited me and built it up from there and when i decided i could work again i did to get a regular wage! Still always tired but no supplement or medication will work so I just get over it and wont let it hold me back!
Thanks again for the article it would have been a great help for us all after discharging from hospital
Hi Mark,
Thanks for taking the time to reach out and share part of your story! Best of luck with your continued progress!
Have you found any gut issues? I understand new research shows a correlation between brain injuries and digestion and other gut issues.
Pat,
This is not something I have notice personally, but I have always been a moderately healthy eater. I have done some reading on this topic, and it seems like it could be important for some people. Like most strategies for recovering from a brain injury, each persons experiences are different.
How long ago was your injury? How is your recovery going?
Thank you for relaying your story. It did give me some insight into my own TBI (though l’ve been living more than half of my life with mine — l was hit by a car in December, 1985, was in a coma for a month & a half, and had absolutely no time to grieve as l was pushed directly into physical, occupational, and speech therapy).
I want to share your thoughts with a group on Facebook, because l think they’ll begin to see me differently; not just another ”wannabe loved” woman.
Thanks again, and l hope you have great days to come!!
Deb,
Please feel free to share with whoever you like! It’s important for us to advocate for ourselves about who we are and what we want from others after a brain injury.
If you are looking for information about relationships after a brain injury, I wrote an article for survivors and another for family members and caregivers. You might find them useful.
You omitted a great service available in Canda… stroke recovery groups, about 30 in British Columbia. Volunteer organisations encouraging peers to recovery with the help of speech pathologists, physical trainers, walking programmes, etc. They can be located by going to Stroke Recovery Association of B.C.
Thanks for sharing your story and ideas to help those struggling through their recovery.
Here in Logan, Utah we have a concussion clinic, a group of doctors and therapists that treat the many different aspects of the TBI. Early on I didn’t know what was “broken” until I tried it or until I questioned something being off (not able to put the dots together). This enabled me to have access to the right testing an treatment. I’m hugely grateful for all the vets and sports individuals that paved the path for these medical advances. I receive treatment for vision, memory, balance, behavioral, and migraines. One thing I will add to your list of treatments, BrainHQ is a program that gives you personalized or specific tasks you want the brain to rewire or learn and it has been hugely helpful with my memory, vision, and self esteem. It has the science and research behind it proving the brain can be rewired. I will also add from my balance therapist, don’t stop doing something because it causes symptoms, keep trying it to rehabituate your brain.
Thank you so much for this article. I had an hemorrhagic stroke March 8th 2018 and like you, I was in ICU 5 day’s and was watched carefully as they assessed all of my needs. I was not operated on and my neurologist says I am very lucky and should have been in a coma or at best in a wheelchair. I have no visible injuries. I had bad headaches which have subsided. The peripheral vision on the left of both eyes was lost and I was told I would not drive again. I am driving, Yet will probably never work full time again. I am very grateful I have recovered so well and considered a miracle. The invisible scars have left me feeling vulnerable and I am just different as a TBI survivor. Your article is very helpful. I have a tendency to minimize the trauma of my Injury yet I am coming to grasp with my limitations. I am learning to pay attention to my brain and body. Resting more often is needed and a support group would be helpful. I am told that they don’t really know what caused this to happen, maybe high blood pressure which I did not have prior to the TBI and the vision I have after a year is as good as it gets. I have most of my peripheral back and can surely live with this. I am extremely grateful. Thank you again for the article. Praying for your continued recovery.
Hi Michele! Thanks for taking the time to share your story! I’m so glad that you found the resources you needed. I was at the Utah Brain Injury Alliance conference in Provo back in October, and I was very impressed with the caliber of health professionals in Utah.
It’s great that you’re driving again. It’s wonderful to have that independence again.
If you are looking for a way to earn some extra money, you might want to check out this article I wrote. It’s a great opportunity if you meet the requirements. I’m helping a few other people get hired now.
Best of luck with your recovery – Marc
My friend doesnt understand this, so she blames those around her for not understanding her TBI. It’s complicated. It reminds me of someone with dementia, and she’ll argue till she’s blue in the face. And she blames us for not understanding when in fact we do understand. So this creates more than a few problems. She thinks no one understands TBI, or what she’s goin through. It’s hard, especially when she lashes out in angue.
Hi L. Herndon, you’re such a great friend for getting involved and helping your friend. Going through a tragedy like TBI often thins out the people who stick with you.
What you said about dementia is very interesting. Going through my problems with my immediate recovery after TBI gave me a whole new appreciation for my grandpa and his battle with dementia.
And I’d like to offer that word as a substitute for “understanding”: appreciation. You can observe the challenges your friend faces. You can see the changes in her personality, her memory, and her skills. You can acknowledge and appreciate that it must be very difficult.
All of that is true and very valuable. And you are a great friend for being patient and sticking around long enough to observe that. I’m sure many people in her life wrote her off quickly after seeing her increased arguing and other personality changes.
But just like I could not truly understand my grandpa’s fear and terror in the early days of his decline (before he was no longer aware of what was happening), I would say that it is nearly impossible for anyone to understand life after a TBI unless you have lived it yourself.
Physical injuries leave your personality and basic cognitive functions in tact. Even most mental health challenges leave your cognitive functions it tact while you conscientiously work to improve an aspect of your mental health.
A TBI is an abrupt traumatic event. Yes, there are physical changes to your brain. But it’s like re-writing (or altogether deleting) parts of who you are.
You have no input to the changes. You often aren’t aware of the changes until someone insensitively points them out.
Many of us lose who we were: personality, education, professional skills, social skills, likes, dislikes, etc can all be affected. Sometimes they can comeback. Nearly every time something is permanently lost.
Even among survivors, while we can better appreciate someone else’s challenges, we are very careful not to say that we understand them. Because we know we cannot fully understand the full extent of their challenges, even if they are similar to ours.
Again you are an awesome friend. You have stuck around when others left. You are seeking understanding and answers and ways to help your friend, even when it would be easiest to walk away.
I wish you the best of luck as you support your friend. I wish the patience to realize that even when she is abrupt and argumentative, she really needs a friend. I wish the patience to take it all in and not be offended. I wish the patience to listen more than you talk. And I wish the patience to help her see new talents and opportunities more than everything that was lost.
Best of luck to the both of you.
Thank you very much for the feedback. I can understand the complications you have so generously laid out for me. In addition to the personal details as well that they face without realizing things themselves, and everyone is different. Things that my not come back in ones everyday life, activities, likes, dislikes, personal choices and everything else. Plus, even if they’re not aware of these changes or responsible for such noticeable behaviors.
This is what is very hard to convey to my friend. I may not know what it’s like, nor completely understand things, however. I do know the changes, and see the impact of her life skills, communications, loss of wording, incomplete sentences, memory lapse, and long explanations and time consuming when she is trying to articulate or express her thoughts, or what she’s trying to convey. We can spend hours on the phone and she hijacks the conversation with repeated, repetitive explanations of one topic. As if to say “you dont understand this way, so I am going to stated this way” and it’s all the same thing. Then she’ll say she’s fine, and she’s not fine. It’s a vicious cycle, almost competitive cycle with herself. I am a very knowledgeable person, very well educated, understanding, but I do not claim to know as you mentioned TBI injuries. But I am not a stupid person, and for her, she thinks everyone is stupid, and doesnt understand her, that is far from the truth. This is the battle, and it’s started with her and from her. We’re of age, both of us, she’s 49, and her accident happened a year ago 2018, and I am 59. I have known her since she was 18 years old. It’s troubling, very troubling. I now will not speak very long on the phone, I will text so the conversation is at a minual, it’s a give and take process by text and she has to READ what is being stated, but therein lies another problem. Is she able to understand what she’s reading, and sometimes I can tell it just flew right over her head. So a simpler text will be resent. I do have patience, however, she has none due to her TBI. And yes, you’re correct, many have walked away and shut the door on her. She actually says “‘Ok there goes another one I need to put on the ‘list’ of those do not understand my TBI'”. When in fact they really do, but because everything turns into an argument, mainly implemented by her (but not her fault because of the TBI) they just get tired. She never realizes what she is doing to her friends, but that too is due to her injuries and TBI. So yes, it’s very complicated for everyone involved. Also, when I visit, I stay away from complicated conversations as well, and will not allow her to “go there”, anything that will trigger detailed input. I try to make sure we talk about the dogs, weather, cold, hot, cooking, what have you. Because everything else is a HOT topic and can get very complicated by her and then the anger sets in, and then long drawn out explanations. It’s nerve racking at best. Anyway, that’s my take on it so far, what I see and understand and can explain. Thank you for all the ‘patiences’ wishes. And sending me your personal insight and experience on something that is so complicated for loved ones, and friends alike to understand. But no matter what, I love her with all my heart, and she is a good friend, and will all ways be a good friend.
I think that you are a wonderful friend! I was in an auto accident nearly two years ago and am just now able to even THINK to look online for brain trauma issues and repair. It has been a long hideous road. I had to respond. I was unable to put my ideas into thoughts for over a year. If and when I did they were very juvenile and non-specific. I thought I was being extremely specific and was quite proud of myself for being able to get the information in my head out of my mouth. With that being prefaced; I have recently been able to form and convey more complicated ideas and everyday conversations. I am ashamed to admit that my dad and I were having a conversation last weekend where I did exactly what you described above. May I make a suggestion? I have found that this works for me. I was trying to convey something NEW. It was not in my old memories! Very important. I think I have more control over my conveyance and have more “NORMAL” responses when working conversations include those. I was trying to get my dad to understand a NEW issue that involved my brother that was extremely important and emotional. I know that I got caught on the “hamster wheel of communication”! I was very passionate about what I was saying and dad had been very patient. I literally could not make my mouth shut up! I knew it but I couldn’t stop until I knew he understood me. It was so bad that he had to pull over and stop at a Wal Mart to “let me get some things I needed”. He wouldn’t even walk with me! I knew that I had hurt his feelings. I never meant to. I told him all he has to do in the future is say “I will consider that”. It is a code word for us to let ME know he UNDERSTANDS me and we are good. I told him that I have zero control over my brain when it jumps on the wheel. I have what I call “Control words or Phrases” for others who have to talk to me. This makes it easier for all of us and shortens unnecessary repeated conversations as well as minimizing potentially hurtful conversations. It is hideous but I let new people know that if I repeat myself to just change the subject! We all laugh but it is brutally humiliating for me. I used to be extremely articulate and smart. I find that it is a lot less humiliating than getting caught on the hamster wheel. I keep praying for continued healing. I will lift everyone up that has commented here. I may not be able to work but I can pray. I will pray for all of you who are wonderful enough to continue to be our friends! Thank you.
In 2015, I survived a brain aneurysm rupture while on vacation at the beach. ICU, 3 surgeries, rehab, away for three months! MY Story of Survival (2-min video):
https://www.hackensackmeridianhealth.org/neurosciences/neurosciences-patient-stories/
Thank you!
Veronica James
Fabulous article, I am nearly 2 years post tbi after suffering a ruptured cerebral anurysm whilst at the gym, I’ve had an amazing recovery due to a brilliant neurosurgeon and rehab team and a loving and supportive family. I’m also fortunate that I am a registered nurse and my brother has the same many years ago. My issue is my workplace wouldn’t accept me back despite medical clearance and I have no deficits. So where to from here, hoping to raise awareness, would like to do some public speaking which I’ve done previously in my work
Hi my name is Shawn and I will be 39 years old in two days 8-22-80. I was in a very bad car CRASH not an accident. At the time of the crash I was 12 years old. I say crash because the lady knew what she was doing and had total control or choice. She made a decision to drive 80 mph down her own road because she was late for work. With that decision she ran a stop sign and hit no not hit ran through me wile my dad and I were on our way home that night. Now pitcher this, My dad and I were coming home from picking up my new go kart racing motor. I was so proud I was holding it in my lap as I sat in the front passenger seat. For some reason my dad said shawn you need to put that on the floor just in-case we crash it wont hurt you, so I did. As we drive home late this evening I fell asleep with my head resting on the side front door window. The next thing I remember is my dad yelling my name and I say dont worry I can get out. Not true the car has been destroyed and the door I was sleeping against has now been wrapped around me like a blanket. My front set has now been pushed to the back seats. There was nothing left of my dads car. We were in a small 2 door car and got hit by a big bronco full size. God was truly on my side this night. My dads car landed on a rock that said Jesus Saves You. Not to fair down the road a ambulance with a non emergency patient stops. They get to work on me fast. The do a emergency tracheotomy wile I am still stuck inside the car. My lungs where filling with blood and I was drowning in it. It took the jaws of life 45 mins to cut me out of the car safely. The next thing I can truly remember is in the helicopter waking up and they say put him to sleep now. I have severe head injury with the right side of my face taken out. Long story shorter they took some ribs out of me to make a new eye socket . I end up with tons of surgeries to many to list over 30 but since I had now brain swelling no body ever looked at my brain. Now to the reason why I am writing this. God may have saved me then but can he save me now? I have PDTBI just found out 6 months ago. ya 6 fucking months ago no shit look at the time line. 27 fucking years I have been living with this and wonder why i am the way i am. Lets be true I will end my life short due to this brain injury. Not a day goes by with out me getting lost or cant remember my own kids names I have 3 of them. Yes I am married and have 2 boys and 1 girl. my kids are the only reason I am still alive. My brain problems are so bad out off 100 people tested 100 being the best I am a 2 for my right side of my brain. where the fucking car hit me. I am thinking its to late for me to get better. I have been getting help for 6 months and there is not 1 sign of getting better. Just worse every day. I cant live with my self anymore or with my brain any more. When my time is up I will save my brain and it can be tested. I struggle so bad every day with all my battles in my head. I hear voices and since the crash I have been able to talk to the dead. Yes i have made total strangers freak out when I tell them stuff I would never know. But the pdtbi will end up wining this battle. So I said we landed on a rock saying Jesus Saves you. Did he really save me ? from my point of view I have been suffering ever since with no relief at all. So I ask again Did Jesus save me ? If he truly did why the fuck do I suffer so bad every day and want to die. I want to be normal again but I cant and I know I will never be. some days I wish i never made it out of the crash. Or may be I find the lady who hit me and make her feel what I have felt for all the years. I know her name and her address ………. but then I think about my kids and I stop my self. I love them more than I love my self. its sad to know that my kids see my fights and dont get what I have wrong even thoe they are 14 10 and 8 years old. Even my wife truly dose not understand what I go through just to be alive and some what helpful. To end my story I will say do not mess with your head keep it safe. You may not understand now but you dont want to live my life at all.
Also, the grieving process isn’t a ‘one-and-done’ deal; it repeats again-and-again, but it does get ‘easier’ (i.e. more-expected & thus easier to deal-with) each time … I hear.
It was a true and a real thing. My wife of over 12 years, fell down 16 stairs on her head, I still love her but they took her away from me. No matter how I tried to find her, she was gone. To me that was not fair. I suppose they figured I was not fit to care for her. I saved her life twice, but I am guessing that was not enough. Oh well, I will always love her forever and ever more.
I’ve had at least 11 head injuries from age 16 to 55. The docs never said anything. The worst was age 28, & the head injury wasn’t given much notice. Between age 41 & 60, I had many other head & neck injuries. When I was 50yo, doc diagnosed me with tbi, after 7yrs of psychiatric care. Didn’t really ‘do’ anything as it explained challenges that were being mostly controlled by meds. There were a couple of other things that caused me to be unable to work, & the tbi at 55yo was diagnosed as mild concussion, would resolve in a couple of months. It took me a couple of years to realize that I wasn’t functioning ‘right’. I contacted a brain injury association to help me to figure out what to do, how to start to get help with what I don’t know. I seem fine, but I’m not. There’s no help. No compassion. It’s ridiculous. I’m stuck. Recovery? I’ve only gotten worse. I’m grateful.
An absolutely brilliant article, thank you. An unprovoked assault in 2010 left me with a TBI and, like you, was largely left to deal with it on my own. ‘…mild concussion.’ – from which I was expected to make a full recovery. Persistence on my part & eventually after 15 months I was referred to a Consultant Neuropsychologist. I’m pretty sure that had it not been for five yrs of Trauma Therapy & the number of strategies shown & relearning of other skills, I would not be where I am today. Perhaps one of the hardest losses to accept is the fact I no longer have my eidetic memory. I wasn’t really one for Support Groups in the past, post TBI & I have found these to be very useful both online & in-person.
Whilst some friends & family have chosen to disown me or ‘test’ me, I have met some amazing peeps on my journey. TBI is very much a hidden disability and for those who want to know more, we must educate those peeps.
Thank you again.
Sue 😎
I got my my TBI after an overhead lamp at work came lose, swung down and hit me on the head and neck, knocking me to the floor. I am an American in Sweden .The doctors here did not even give me a ct scan the day of the accident and no doctors even said the letters tbi. I have had to research what I was going through and try to explain it to them AND the insurance company and my family. It is day to day. if i have too many people talking at once or in two different languages ( english and Swedish ) My brain sort of goes into overload and I have to go and lie down, no one seems to understand …..