The Real Truth About Brain Injuries

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 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

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.

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.

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

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

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.