The Real Truth About Brain Injuries

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Hello, my name is Ryan Alex. On May 12th 2001 (Mother's Day) at the age of 16 I experienced a severe tbi. I wrecked a motorcycle doing (from what the police said) anywhere from 75-120mph head on into a ford f-550 service truck. I was in a severe coma for 3 1/2 weeks and literally died 4 times throughout the initial hours/days in the hospital. I was in the hospital for approximately 4 months total. Including the inpatient rehabilitation center. I had to learn EVERYTHING down to tieing my shoes but for some reason maintained a two year college level reading ability....i have a hard time remembering much of anything before that wreck happened to me, except for triggers that once in awhile t bring back memories. sometimes I wonder if they are actual or fabricated by my brain. Because a lot of times my friends or family don't even remember them happening. I personally lived through this life altering event. I had a girlfriend at the time of the accident that dumped me soon after because "I wasn't the same person as before the wreck" I lost ALOT of "friends" because they weren't sure how to act around me, or other various reasons they all came up with. I suffered from severe depression for years. If I don't wake up in the morning with something hurting......something is wrong....I've also been through 16 major surgeries involving bones I've broken ( getting hardware installed and removed) and that is not counting all of the cosmetic surgeries I have had to endure. I can't even begin to explain how frustrating life in and of itself became after my bike smashed into that truck. I felt like nobody understood me, like I was going to be alone my whole life afterwords, because in my mind...I was some freak and I hated myself for being who I was. I could never see that I was still me due to the fact that coming out of that coma. I didn't even know who I was or who I was supposed to be. I tried so hard to be the Ryan I knew. A lot about me did change, and I hated it. I hated it so much that I tried to end it all for myself twice (unsuccessfully). I just couldn't handle being so "different" and I didn't stop to think...how "different" could I be when I had absolutely no idea who I even was before the mishap. I cried for God, I plead with him, I screamed at the sky in tears many a night trying to figure out my purpose. But in all reality of the situation. I never had taken a step back to look at things and realize that maybe, just maybe. My purpose wasn't in my hands at all. It is now 9-22-14 and I am still here to tell you that recovery has been very long and difficult...I still struggle with anger/temper issues as well as impulsive decisions I make without thinking things all the way through before I move forward with the decision. I am a single father at the age of 28 raising a beautiful 8 year old son, I have an associates degree and am working a job that brings in close to 70,000 dollars a year. Now, with that. I am by no means trying to brag or flaunt about my success but rather provide inspiration to victims of tbi and families of tbi victims showing them that everything can work out to be ok. With my personal tbi, I had what you would call a subduralhematoma with my brain hemoraging (bleeding) inside my skull with no room to expand due to it being a closed head Injury. The doctors put a drain into my scull to relieve the preasure until swelling and bleeding subsided. I still have a large problem relatively often with my short term memory but it has improved over the years and I am still at high risk for having seizures. (Haven't had one yet) but in closing, If you are a victim of a tbi or family of a victim of a tbi (traumatic brain injury) reading this comment. DONT LOSE HOPE!!! DONT GIVE UP!!!! PERSEVERE THROUGH IT!!! It may not be the end all be all! Everything happens for a reason!!! You may never understand why,so don't even bother wasting your breath asking yourself that over and over and over. Just see it through. I hope everything works out for you as it has for myself.....and don't ever doubt the ability you posess to see it through to the end. If you do,Say a prayer! I will say one with you! I'm sorry you have to/are going through this. Either way you look at things...it will all work out. God bless you!
Thank you for posting this article. I'm glad to read something about TBI that happened years ago yet still there issues. Everything I read is about the first year or two after the accident, but nothing long term. My son's accident was 10 years ago and we deal daily the grind of care giving. He has no physical disabilities, it's all mental. I sometimes think, is this still from the TBI, or is this just all mental illness now? It's both!!! Thank you again.
I am responding to the caregiver who commented on October 14th about her son's mental issues after TBI. If she or anyone dealing with these sad results of head injury want to share, my email is debam52 @ gmail.com.

From someone that has suffered with TBI for 3O years. Thank you Dixie It's good to hear the point of view of a care giver. My mom has tried to get me help, taken me to psychiatrists and put up with my behavior which she has not understood. I know that it has been frustrating for her the lose of jobs, every ones expectations of me to live a normal life; it has been hard on her but she is the only family member that hasn't shut he door in my face. My marriage fell apart after I was hit by a carload of drunken teens. I lost someone very close to me my step daughter. I fell into a big depression and quit my job at the water department and when I couldn't pay my bills I started steeling to make end meet.(stupid) I feel like I could write a book about all the crap that I have been through. It's good for me to read about others that have had the same problem. I wish you well in the recovery and after math of your son's tragic accident. I know that it is hard on you at times just from what I have seen my mom go through. I pray that you don't ever give up on your son.

D.C.

Thank you for honesty. I have found most people only want to know the positives which can make the caregiver feeling even more alone because we feel we can't be honest. Feeling the negatives doesn't make us any less grateful for what we have it just makes us human. In our situation there is a sliver lining, we were already growing apart and still struggling with the death of a child when DH had his stroke. Through this we have grown closer and have been able to appreciate each other more. Fighting through this together helped us to heal not only our marriage but, also from the grief of the loss of our child. Whenever we get down, we allow the sadness for a short time then focus on the positives again otherwise we could easily sink into the pits of despair.
Being the mother of a Son with a brain injury, I have to also be truthful about your final chapter. Something's are better left unsaid. Not everyone feels the way you do, for many there is always hope and continued faith. This only serves to be negative to those who hold hope, not only because of your disdain over the situation, but because your initial story was to be healing and uplifting to those on your journey. If it was a lie and a cover up from what you really felt, then maybe the least you could have done is spare those that you gave hope to.
Sometimes you just have to let it all out! Thank you for doing so. I could have written that myself, every last word. I am almost 3 years post op with my son, Samuel, who will be 18 on Saturday. He had a brain tumor removed and things went from bad to worse after surgery. Though cognitively he is all there, he is still dependent on a vent at night and cannot yet swallow. Hope and faith is all we have for these things to come back. God Bless you and all who live with a TBI.
I like you try to see the positive but its not going to go away we have to live with the mood swings, paranoia, anger and yes the laughter and joking. It is tiring and no one understands or wants to hear it anymore. It's been over 12 years and we always felt so blessed and then we were hit with another complication that changed his mood just when we got used the the person he was post injury. We tell ourselves that for 12 years we've been blessed and lucky but now we have to adjust to this new person that is not as nice as the last person post injury. Losing our son twice makes me angry and sad and depressed but I can't show those emotions I have to smile and act like we're ok and he's ok and wait for him to get better again if it happens. But I have faith and I keep praying and giving myself pep talks otherwise how else will I manage.
I too am a TBI survivor but I don't have any negativity. It hasn't quite been a year but it took work HARD to get back like I was. I was as close to death as humanly possible. But I can and have worked back positively. I have lost my marriage along the way basically because I wanted to live. And do things. Some semblance of a return was all I wanted. But I was places as "all the rest" and it was assumed I had an attitude issue. I take it from reading too much negative. Trust me when I say we all aren't like that. Yet we get plagued by those that are. Please, we are going through enough. Can we please not add to it? Luckily I'm strong and have the truth on my side. But I wouldn't want someone worse off to go through what I did. They may not be able to handle it as well as I did.
Dealing with the TBI is in a lot of ways harder than dealing with my sons all 3 born with autism because you get to live in the reality of normalcy before your child receives a brain injury. You get to experience what your son was like as a typical child. That loss I think is harder than for your child to be born with an intellectual disability. The road to acceptance for that would be very difficult, but what I do understand is the caregiver role. It is unrelenting and I don't think very many people understand how intense it is but at the same time the fact that your son has moved out of your house is something I will never be so lucky as to have happen for my three boys. The caretaking will never end for some of us as our children were born with their disability and will die with their disability with no hope of progress, independence is not a possibility....so while I respect your struggle with BI, I hope you also appreciate the truth that for some of us caregiving never ends, but there is always love and thats the silver lining for us. Warm Regards Lori

Dixie, if I were to sit here and type until the end of time, I would not be able to properly express my appreciation for your having written this article!! My husband suffered his TBI falling from a ladder as a self-employed sign maker 7 1/2 years ago...he too is considered "lucky" as he is high functioning, the majority of the changes are only seen by me and my daughter, when he turns into the Tasmanian Devil who swears A LOT, and he's really mean!! So I find it difficult at times to read/hear all the "rah-rah turn it into a positive"...your article has given me the much-needed permission to CUT MYSELF SOME SLACK and realize that I am not a horrible ogre of a wife...and I REALLY needed that!!

I tried the Support Group route, but I felt guilty complaining about his bad temper when others were dealing with more complex physical challenges...by comparison, my life hadn't "changed" as much as some others...you've helped me tear up my scorecard (i.e. gonna stop comparing myself to others!) and just keep doing the best I can with what I got! Thanks again for lightening my load...have a great day! P

:)

Thank you to everyone responding here. Sometimes I never know who to talk to about having a TBI. I usually don't tell anyone, because they just don't understand. I certainly don't tell employers. Reading Dixie's role as caregiver helps me understand what it must have been like for my mom. I truly believe my mom is the one, who saved my life. Mom, Cynthia, literally moved into the hospital with me. She asked to have the catheter removed, and changed my sheets and pajamas if I wet the bed! Of course, I remember nothing of the 1 1/2 month hospital stay. I do remember waking up from the coma not knowing who I was, where I was, what had happened. I don't really recall feeling anything to see that I was bald, and having had really long hair, I must have noticed.

It has been 30 years since the car accident, where I was thrown into a rock ledge, face smashed, semi-paralysis on my left side. BUT here's the good news, if there can be good news with TBI,...things will get better. It's mostly attitude.

My heart breaks for those as caregivers coping with severe cases of TBI. As a care provider myself to the elderly, the compassion shown, care provided, emotional support to the patient is all very draining. Not to say any less well intended, but providing care to others is a huge responsibility and a heavy job. So many cheers to those parents, spouses, children rendering aid to someone with TBI.

Even after 30 years, and a miraculous recovery, albeit long recovery, there are still challenges. Reading and writing is tough, although easier with a computer. Mailing a letter! It is so hard for me, and I don't know why. I still have issues with people, but then who doesn't? Course, I am cross-eyed, and I see double of everything, and I can't believe how stupid some people can be. If you could see me, there's little evidence anything ever happened, except for my looking cross-eyed. Oh, and the little evil monster ( I call it) >depression< It will rear its ugly head sometimes. Got to get right on top of depression and kick it out!!!!!! I won't take any meds (period!) Go for walks, find good news, anything to rejoice in.

Thank you all for sharing your stories. write to me anytime. HUGS>Melanie

thank you , it has been 10 years for my son and sometimes the sadness of his future overwhelms me.
Thank you. You wrote exactly how I feel. I am angry, sad, and at times feel guilty for feeling that way.
I am so afraid of the future for my son. He does things that further injure his brain and he does not really learn from his mistakes. He gives in time and again to alcohol and drugs to dull the pain of what he is now. Although he is better off than many more disabled brain injured people, he is lacking in maturity, wisdom and humility. His medications, doctors and family provide enough support to keep him alive but his own nature, frailties and confusion may win out.

Dixie,

I read your son's story and tears came to my eyes, as they have reading many stories from the Mother's point of view regarding their child's TBI experience.  I just want to hold your hand and cry with you, for you and your family.

The beginning of my son Brett's story is very similar.  My son's incident (I don't say "accident" anymore because people assume it was a car accident that caused his injury.)  When Brett was 13, he had a knife in his pocket that shot open and severed his femoral artery, he bled out.  He was in a Coma for 3.5 weeks, with our Neurologist asking if we knew who Terri Scheivo was, and that we were "not even going to get that."  My pen was on that paper to take him off life support.  My ex-husband refused.  Thank God.

Here we are, almost 8 years later and currently, my son's future does not look so bright.  We went through all the recovery aspects that you described in your story, wheelchair, walker, cane, Rehab of all kinds, non-stop...all on my own since ex-hubby decided to step away and live his own life.

During the first 6 years or so, EVERY thing Brett did was a milestone....a lot of "firsts" like a new baby.  First time to see the ocean, the first concert, the first date, the first time for EVERYTHING!!!  Just so grateful that my son is still on this earth to experience ALL life has to offer.  The first 6 years were for Positive thinking, healing, developing and believing that he was left on this earth for a reason!  He had purpose!

But for the last (almost year now-my son is 20, almost 21), he is changing.  Now he is mad, mad that he LIVED, mad that he is different, mad that it was HIS life that changed so much.  He was able to deal with his friends slowly tearing away from him, the fact that he was mobility impaired and walks with a limp for the rest of his life, that he spoke differently, slow and monotone....(we practice pronouncing continually), just so STRONG that his life had changed so much but he was going to overcome!!!

Now, he has a deathwish....He does not want to be here anymore, does not see a positive future, does not care if he lives or dies, actually HOPES his time is short.  He is preparing me for his "end."   He feels, "is this as good as it gets?- forget it." 
I have contacted his new Neurologist (me moved to a different city so he is starting with a whole new "team") for help.  Hopefully I can get him some help before it is too late.  His impulsive behavior has become extreme recently.  I am terrified I am going to get THAT call again, any minute.

The worst part is, I am on my own.  My family has always been a little emotionally "dead" and I guess they just don't know what to do.  My son's Father is currently in jail (AGAIN) for drug and theft charges....and since he decided 8 years ago to live that kind of life, he has not had much contact with Brett.  His Uncle and Aunt have become quite distant since the divorce, and not much contact with Brett either except the annual Christmas card and money.  My older children live in other states, with their own lives,  Actually, Brett's older brother, I believe has felt somewhat "abandoned" since Brett's incident because unfortunately, from that moment - May 19, 2007....it has been ALL about Brett, his survival and his recovery.

Personally, I am at my wit's end.  I am exhausted...drained of all energy, emotion, money etc.  I spent the last 8 years dedicated to helping Brett revive to the fullest.  I felt we were special because God didn't "take" him.  Brett had a special purpose, and I was assigned to make sure he fulfilled that purpose.  I have been financially, physically and emotionally devistated, but kept "chugging along" for Brett to reach his FULL potential.

And now he wants IT over??!!??

I am happy that your son sees his purpose and realizes what a gift he was given.  Being at death's door and given another chance is such a gift.  Have you experienced any of this with your son.  It would be inspiring to read that there may be light at the end of the tunnel.

I read your post and am amazed that you have made it as long as you have without blowing up! Now, as Frustrated as you sound, I am a Survivor of Brain Surgery nearly 4 years now. What would you think of I told you that what you are going through is normal....try going through the Actual Process as a Survivor...the Guilt you feel for having to rely on others to do the most basic things that you know, you used to do but can't do any more. The frustration we feel Trying hard as hell to get better FASTER, so that we won't be a BURDEN on the lives of our Families and Friends. The ENTRAPMENT, ISOLATION, CONFUSION and EXHAUSTION we go through on a minute by minute basis because our Memory has dissipated into oblivion yet, at times, it appears.... Just to know when you fall asleep from exhaustion..complete and utter mental exhaustion, and wake up...we have to begin All over again. Forgetting how old we are, what day of the week it is, watching the time tick away and there's nothing we want more than to be our old selves again. Imagine the Frustration You Feel ....Multiplied by 10...being TRAPPED by your OWN MIND that won't Heal Fast Enough, NOT JUST FOR US! BUT SO THAT WE DON'T HAVE TO CONTINUE TO BE A BURDEN ON OUR FAMILIES. Your frustration is at least something you have the mental capacity to spew it out and release all of the negativenrss that you are feeling. You have the ability to sort it out...because you Brain Functions Properly. We have what you call, Survivors Guilt! Knowing this is putting a hardship on our Families and Friends. Just to keep it in perspective, We Didn't Ask For This either. We feel sad to be Sooo reliant on others. Your Frustration is valid....but walk in my shoes for a day. You might just feel Blessed, to be able have your Son around. God Bless! Be Well..... Sparks
I just wish I knew if and when it will be okay to grieve, It's been 5 years and that person he was is gone. I really love who he is now but oh my God, I miss my son too. There was no funeral for all who loved him, especially his sisters. To even think it feels like a betrayal but our other son truly left us that day. His injury was one of the bad ones. We've just kept doing what had to be done, no choices. Deepest sorrow hits me sometimes. I can't let him see.
Dixie - I dare say that YOUR story sounds almost a duplicate to my own mother's story. There are no adequate words to describe this TBI experience and we live it every day. Even those well intentioned family and friends who try to provide comfort fall short in their empathy.....they cannot know or understand the daily heartache. Added frustration comes when family will infer that we are somehow enabling our loved one. This is an indescribable journey, but what I have learned is that I believe the journey says far more about ourselves than the one affected by TBI. How will I handle it all? What does it say about MY character, MY patience, MY strength, MY faith. This event has changed the lives of everyone connected to my son. As a mother having gone through it far more closely with him than anyone else I am grateful (yes, grateful) for the daily rigors. I am also human and are there days when I am angry?? You bet.
Thank you. We are 3.5 yrs post, single mom of a 16 yr old survivor. You literally put into words all I feel day in and day out. I appreciate you writing this. As its hard for me to talk about still. And I'm forced into it. Thank you
I'm a TBI survivor and can only get through one page right now, due to focus issues... but I love this so far. Great writing style, real and raw!
Love love love this. My 28 year old so. Was injured in a bad accident that was not his fault. I am devastated by it. It has turned my family if 6 upside down. I feel like something is wrong with me. Other people deal with tragedies and this has unhinged me too. I look at pictures of me before and now I'm different it forever altered my life. It is the worse thing that ever happened to me and it didn't happen to me. It is painful to watch your child struggle through brain injury which are often accompanied by physical too. Makes me feel like I'm not the only one responding this way. I can spin it too but it's a devastating life altering occurrence. My youngest just turned 18 now my oldest who has the TBI is dependent again. My friends are marrying if children having grand babies and empty nest... I don't see that.
Thank you so much for this.
I found the last writer's comment, "it's the worse thing that ever happened to me, and it didn't happen to me" to be so right on! Ten years of it "didn't happen to me, but it happened to me"! I don't know how much longer my husband and I can deal with head injury and mental illness. We deal with it every night. The ranting, the denial, the paranoia and delusions, are bringing us to our knees. Medications have not been the answer since 2014 when he was more stable. Haldol and fluphenazine are the drugs tried and don't seem to be working now. My son has been good about taking his meds but they are not working on the mental illness. Anyone else dealing with these two difficult issues?
I will add my thanks to your brutal honesty. My husband acquired a brain injury 12 yrs ago. I hate it. I miss my friend, my partner, my lover. He is very functional now but he is not the man I married and never will be again. Gone are the long talks, understanding the financial problems, fixing and maintaining things in our home, etc, as the list goes on and on. I am a jack-of-all-trades now-I can't afford to hire people, and family and friends are "too busy". But isn't it great when they always say "if you need anything, just call!" Most of all I miss a hug now and then. I need someone to tell me I'm doing a good job, that's it's OK not to like my life. I have 4 grown, married children whom I love dearly, but still don't "get it". Oh, they say they do, but they don't. If they did they wouldn't criticize me. I'm not allowed to be mad, depressed, angry, or God forbid if I lose my patience. No one lives it 24/7 like we do. I should be planning my retirement now, not wondering how many more decades I have to work and will anyone keep me that long! Where are my friends? Where is my smile? I don't laugh much either. But I'll see it thru-for better or worse stinks! Moping in Maine.
I've had multiple concussions, with the worst being a sub dural and gcs of 6. I was also boxing at that time and had to quit. Many head injuries were before I even started boxing though and I never got knocked out or even a headache. After the gcs of 6 though I boxed secretly and every punch caused severe pain, headache and jarring feeling. Now its 26yrs later I'm 45 and am in incredible shape. I want one more try at it! If I would have told the doctors of my previous history before I started boxing they wouldn't have allowed me to ever start in the 1st place so I may fly under the radar and monitor myself. Maybe it's been long enough with no head injuries now. I loved it so much!
Being a survivor of a moderate to severe T.B.I....I truly was appalled at the descriptive word "tainted" used to describe how you're son's tragedy affected the rest of the family, sweet.
There has to be more out there for family's who support family members with Brain injuries. It's hard dealing with it on any level and the frustration they entail on a daily basis. My son is in his second year of PCS and no sign of him returning to his normal life, work and going out with friends. His friends seldom come around, as he doesn't want to engage in there conversation about work etc. He finds it depressing. So he chooses to stay in and play video games most of the night and day. We need support groups to help the care givers to get through this. Tough love has helped and meditation and Reiki has helped me the mom through this journey.
I am recovering from multiple tbi's & cptsd on welfare in Uk, no support & a daughter who probably has tbi & cptsd. I am trying to write & need some sort of job but hard to know what. We have a very difficult relationship esp since the tbi & the house etc is too much as is school etc. I do not drink or see anyone as all alcoholics & nasty. I find everything hard. It is such a challenge at home & out in world. The GP has been abusive etc. I need to get a life which is not find a boyfriend as everyone including state & my daughter is saying. I hate the responsibility of parenting & the house. I wish I had a different life but not sure what at moment & so difficult to organise anything or make decisions.
I am new to the TBI world, my husband sustained his injury in November 2015. Thank you for your honesty - I thought I was the only person feeling this way, like I was selfish and should just be happy he survived. Knowing that others feel the same way gives me strength, and makes me feel a little less alone. Thank you.
Thank you for saying so concisely many things that I have thought but never put to paper. I had to laugh about the one way ticket to Hawaii. Mine is to be a hermit in a hut on a beach in Mexico. I say it all the time, and I preface it with "I'm only half joking".
You said how "you wished to write a Love story"? Well, I can tell you right now, You just DID it! And it is Amazing! Your heart and soul just poured out every ounce of love that you and your entire family have endured since TBI entered your life. It is a true love story, and testament of faith and strength that your family has endured and has hung in there thru this. I once heard that people are best at writing what they know, and You and I both have walked this path, and I believe that sharing the challenges of this intense love through our writing is helpful to others . . . and to ourselves.
OMG you have said the truth and hit the nail on its head!. I have been through so much misery over the years with my husband.It is so not rainbows and unicorns because they survived. I am dealing with the financial fallout he caused and its actually a relief he is in a nursing home after a new TBI from falling after a seizure while on blood thinners. His bad self is finally gone. I too have fantasized about running away. I have a passport and credit cards. I am however way too responsible and love my dog and grown kids too much. Also very tired of hearing how strong I am. I'm just practical.
Thank you for sharing your story. Your story touched my heart and made me cry - probably because most everything you have said rings true for our family. My son, 18, was in a serious car accident in December (fell asleep at the wheel). It is so heartbreaking when you look at your child as this is not the life you had dreamed for them. I am suffering as well from PTSD ,as we were at the scene of his accident (took over an hour to extract him) . When he didn't come home we went looking for him, only to finally have his girlfriend's parents find him 4.5 hrs after the accident happened on a rural road - no street lights as we live in the country (5 minutes from home). I live with the guilt daily that we drove past him and didn't see him down there. To be unable to find your child and to finally get the call that he was found but they were not sure if he was alive is one of the worst things a parent can experience. He finds it hard to make new friends (as they do not understand and he doesn't like telling them the details) and I to feel a disconnect with my friends and family as they don't understand TBI. He walks, talks and looks the same - but he isn't - people do not understand it. Some days I just want to scream and throw things (and sometimes I do). This journey is a roller coaster ride - you just never know what a day will bring. God Bless all of you caregivers and survivors.
Hello, I enjoyed reading this. I am too dealing and struggling with my sons TBI. It had been a year since his accident. We are all still adjusting. I too felt and went through all of what you wrote. It's always nice to hear other family's stories.

February 13, 1994.   The day that changed my life forever.   My 4 yr old son and I were victims of a 70 mph (combined speed), head-on collision.  My gut was severed at the common bile duct and my son suffered extensive TBI.  Frontal, temporal, occipital lobe sheering and a brain stem hemorrhage.  Truly by the grace of G-d we have survived - transcending any noticeable debilitating physical injury.  Bona fide miracles - both of us. But it's been a very, VERY long, hard road for both of us.  He went through puberty at 8 yrs old - something about the pituitary having been affected somehow.  He has no noticeable defects (unless you really get to know him and discover his lack of common sense and empathy).  He holds a job.  Shows up everyday like clock work.   I know, I know, I'm very blessed.   But what I didn't tell you is that he has a volatile temper (if you happen to hit one of his many buttons).  He doesn't seem to know how to truly love.   His world revolves around himself.  He can't manage money.   He spends every penny and then looks to my wallet.  His comfort is his primary concern.   He's 26 now and just impulsively moved to Florida (from our home in Connecticut).  Here's where it REALLY hurts - he got himself a wonderful dog - a rescue -almost 3 years ago.   He treats the dog like a possession and not like a friend. He's a control freak.   His dad and I have spent most of the time with his dog and he really only had him on weekends and evenings.  So the little dog got lots of attention, walks, runs, good food, and play time with us.   Now he is taking the poor dog to Florida.   FYI - he won't take the dog out to do his business nearly often enough.   He won't buy treats for the dog or allow him to wear the sweater and jacket I bought for him to wear in the cold up here in CT. He is already talking about going on long excursions in Florida and leaving the little dog with his roommates (4 young guys in a band.)   I can't imagine what's in store for this dog my husband and I love so very much.   If I step in and take him, I will never see my son again.  I will, most likely, get arrested in the process.  I'm sure of it.   However I can't stand by and watch his cold, controlling behavior and  negligence of this poor little guy.  He's coming back in two weeks with the dog and I need to have a plan in place by then. 

I know that short of a miracle, my son will never be able to give or understand unconditional love, selflessness, or altruism.   

I believe that my son has actually begun to devolve in his TBI recovery because I remember he was not nearly as evil ten years ago.  Something has changed.   He uses the little dog as a weapon because he knows I love him so.  I have to come to terms with losing my son to save the dog from a lonely, neglected life.   

At this point, I'm ready to do it.  

Tired of being extorted in CT.

Thank you for sharing your personal story. My son was in a motorcycle accident seven months ago, and he was wearing a helmet. His injury were severed. Everything you talked about touched me personally. And I'm just getting started, I still have a long way to go. Your experience let me know I'm not alone. Thank you so much.
Thank you, I felt like you were telling my story the difference is I only have 3 children and I was in the middle of a nasty divorce. My son was 14 and on his brand new bike. This March it will be 12yrs. Yes, hes a miracle. He was dead at the scene and coded more times then I can remember before arriving by helicopter. I needed this today. My heart breaks for him daily. He knows he's different then most 25yr olds he's also aware he could be much worse. Again, I thank you for saying the things I've only thought.
Thank you for your honest writing. Our family tries to just "embrace the suck". But it's exhausting. Let those feelings out. There may be no "silver lining " but honestly expressing yourself hopefully makes your heart a little lighter in the moment. Thank you for sharing.
my name is mark, our stories are so close its chilling and the way you feel is how i have not been able to express to my wife, she had a massive stroke at 22 years old, 14 years ago, after giving birth to our second child, our 1st and 2nd are 10 months apart, it has been a roller coaster in free wheel mode with no brakes. after 4 months sleeping on an icu floor, a left leg amputation, multiple surgeries to remove the clots her stay at the hospital was over, but our war had just begun. i never knew what the feeling was i just knew it was there, i tried everything the doctors recommended and stuff i thought out on my own. it completely consumed me, my life was her and the kids and the house and the doctors and the medicine we couldn't afford but got by any means necessary, the food we couldn't afford the relationship we couldn't have, my wife and my kids.i felt so alone so far removed from joy, the simple joy in life, my light was gone. and as the saying goes" it gets worse before it gets better" , i had my accident 2 years ago, almost killed me, a steel pole wrapped in concrete rolled off my truck at work and hit me in the back, fractured vertebrae in my neck, shattered my shoulder blade into about 18 pieces, broke ribs, lacerated lung and lacerations over the left side of my face. as i lay there gurgling my own blood my first thought was is she going to be able to be there for me like i was for her, i thought how crass, but then well i did it for her. my hospital stay and next few days were a dream state. now 2 years later. i struggle with being a husband and caretaker to my wife, a father to my kids and my own caretaker, nobody sees it, no one understands it, all they know is dads not the same, hes changed, hes the problem. the same people who i did the best i could for cant even give me a break, i say i'm fine i say alls well, shes doing great they are great kids, and as always i get lost in the shuffle, peoples sniffles supersede my ptsd, family get togethers and parties are more important then my migraines and anxiety. i've been to counseling and have gone the route of explaining some of my triggers and how i handle them seeking acceptance and understanding and instead am met with anger and bitterness, you need to change, your the problem, your the cause of what's wrong with the family, i feel so bad cause i knew we would have issues having one parent with a tbi and physical limitations but know both of us are going through it and even worse i feel i'm doing it alone by myself, i love my wife, i love my kids, but at this point i don't know if i have the strength to keep fighting this battle on four fronts! i've endured 14 years of this, one day at a time, one mountain at a time, one ocean at a time while keeping the 3 of them afloat, i'm just so tired! the home situation is not getting any better and i honestly think if i remove myself i may be able to make myself a better me which can make me a better dad and maybe a better friend then a husband!

I sit in my world of white noise, confusion and feel I am enveloped in black cotton wool. I hear myself ranting at everyone over trivial matters and can't stop. I hate the indecision and confusion I go through every day. I lie to everyone "I'm fine no problem" but my world is like a black and white movie but played too fast.

Most of the time I try to stay positive but find myself apologising for my TBI. I hate it with a passion, tried to grieve but find myself looking back to the good service engineer, the compassionate manager, the brilliant salary and all the travel. Oh well life goes on and on and on.

It was 7 years for us on 9/13/16. Although we do not experience the exact same issues, thank you for writing this. My son is in Long Term Care. He is now 40 and he needs care 24/7. He is hemiplegic and gets no therapy since medicare says he must be in a geriatric nursing home. He only had 1 1/2 yrs of brain trauma care. He previously was an Ironman Triathlete. His wife divorced him and my ex-husband has moved on, as has his older brother. I have no family support to speak of. I became his legal guardian. The guilt I feel that he must be in the nursing home is tremendous. Of course I see him several times a week. My life has changed forever and i have become a grieving introvert. No one I know wants to talk about him. I think of you often Dixie. You have every damn right to be overwhelmed. I'm sorry this happened to your son and I'm sorry it happened to you. Sending lots of love.......

Thank you so much for sharing that.  It is SO GOOD to finally hear someone talk about the bad side of things, about all the bad that comes along with a TBI.  You could literally have written this piece about me and my life.  My husband suffered a VERY BAD TBI about 11 years ago, and we had NO IDEA what was ahead of us.  This trial and error process has been a very hard one for us both.  We were only kids when this happened, so we didn't know anything about any of this.

But now sitting here, dealing with these same struggles every day, its hard.  It gets overwhelming.  I love my husband until the very end of time, but some times i wonder how we will get through just another day, yet alone the rest of our lives.

Thank you for sharing your story. 

I'm sorry but I couldn't continue reading because it is very heartbreaking. July of 2013 my kids were getting ice-cream when my son almost 10, my daughter 12 ft behind him, and me watching from the front porch. A 21 y/o driver that I never saw coming hit my son. He wasn't breathing and I remembering grabbing my daughter and praying. After what felt like forever the color returned to his ear. I thanked God that I had a chance. I forgave anyone who wronged me including the driver. My son was in a coma, had half of his skull removed, and a kid known for his smile couldn't until much later. I put a rock in my pocket and thanked God all day and night for healing, as if it was already given to him. About day 4 I didn't want to listen to 90% of his doctors opinion so I didn't. (What did it matter?) I focus on the good and my son always said "If you believe, you receive." ( He used it for Santa lol but I have used it almost 4 years) I get upset when people tell me that I need to stop him from saying Mom so much. ( I prayed to hear the word Mom and I'm so grateful considering the bleeding was over the speech and short term memory. Besides it is usually to say Mom, I love you) I tell him he can quit, but I will Never give up. I am his voice and my daughter is a huge help everyone else has moved on. I wish I could help everyone on here. I can tell you its not easy but Everything is Possible. Yes it is heartbreaking at times, but the greater the challenge the sweeter the victory. I'm going through battle fatigue myself just to get people to stop doing me wrong. I've given up my life (Yes plenty of people tell me I shouldn't but as an unlicensed speech, Motivational, physical, occupational, researcher, etc with OCD & ADD LOL) its the hand I was dealt. I'm in the middle of finding pictures online for motivation and encouragement to hang on the wall. I never imagined this and didn't know you would need to learn how to hold your head up, walk, talk, think, act, and things people don't even think about. If you are playing a game of spades and you were dealt diamonds and clubs you can still win the game. It's never too late. I'm sorry for the spouses who threw in the towel. My ex left me for my friend and I didn't have a brain injury. I was devastated but I thank God for that too LOL. Funny when he wanted me back... ummmm how about NO. Look at Nick Vujicic that was born without arms or legs and overcame his inability ( Sorry, I don't like the word disability ). He lives an independent, rich, fulfilling, and “ridiculously good” life while serving as a role model for anyone seeking true happiness. He is an internationally successful motivational speaker, that spreads faith worldwide. Try YouTube motivational speaker videos all day but please Don't give up. It's tough but possible. You never know what God has planned! At home I have used Oils, homemade devices. bilateral beats, an Electronic muscle stimulator ( That could be a call to DCF lol JK) some $400 oxygen thing at target, even had to use yo momma jokes for speech, vitamin E and fish oil, and the list go on and on. I've seen people on hospice with a funeral planned and 15 yrs later talk about it. Miracles happen daily so today can be your turn! Hopefully God helps out with the Golden Retriever (Just like the one at the hospital) Service/Therapy dog I want for him and a HBO home unit because the 33k dog and 8k for the oxygen treatment is not in my $200 budget.... Hopefully the dog can drive, cook and clean too. IDK Anyone with a connection PLEASE Contact me. 

I Pray this message helps even one person!! XOXO Jamie

Do you have an update on how your son is doing now?

My son suffered a severe brain injury 17 yes ago he was 21 I'm so sick of reading story's about other people who have suffered my son can't walk talk I take care of all his needs he screams for at least 6 to 10 hours daily while kicking and thrashing himself about in the bed he's got scratches all over him this is day and night everyone I wish someone could see my life then they could write a book that would really shock people

I am a Survivor of a Traumatic Brain injury. It happened in a car accident in1970, 3 brain surgeries, 3 weeks of non induced coma, hemoplegia, hemiparisis, long term memory issues, short term issues...can you imagine the frustrations I have, and do encounter? The guilt I have towards what I put my large family through is almost unbearable. Mama just passed away at 96 and Papa died 9 years ago...another dose of guilt is not what I need.

Dear Dixie, thank you so much for your inspirational letter, I have a brain injury as a result of an op for treatment of a colloid cyst , after the op I was in a coma and left hospital in wheelchair unable to walk, talk or feed myself. I have the most wonderful husband in the world. When he brought me home from hospital I told him to leave me as I was no longer the person he had married, but he,like you said we are married for better or for worse and he has had to be carer to me and be both mother and father to our two wonderful children, I have always appreciated what he has had to do for us especially, having to still work at the same time, but reading your letter has made me more so. I love him dearly for this. I also understand what you have gone through by comparing your journey with his role although no one can fully understand unless they have been in your place,so I thank you Dixie for writing your experience and I trust that you and your son will continue to grow stronger through your ordeal.

This is the first time I have read something that is exactly what I feel everyday. That someone totally understands what I feel as a mother of a TBI. Thank you!

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