The family atmosphere is a great challenge for the brain injury survivor. There is no way to convey how it feels to be a TBI survivor to your family. This is particularly difficult when you have been raised in a family that does not give you emotional support regarding your injury.
My family shows no interest in trying to understand my injury or help me with it. My mother is always telling me I must get a job although I am unable to work due to my dizziness which can be severe at times and other injuries I am still challenged by due to being crushed.
Getting your family to understand that you cannot work, you have a brain injury and just why can't they understand this is nearly impossible. It wells up in frustration and anger. You just want them to understand. You want them to give you a hug, tell you that it will be better and that you will get better with time. You just want support. I can't get that with my family.
It wasn't too long ago that my mother told me how much of a financial burden I was to her and that I needed to get a job at Wendy's. I was just shocked. After trying for the first 2 years after my TBI to tell her what it has done to my brain and how it has affected my lifestyle, I felt as if I had done nothing more than talk to a wall.
I have to accept, somehow, some way, that my family will never care enough to give me the support that I desperately need from them. We can't choose our families, therapists say. But I can choose how to deal with this effectively and not let it get me down. But it sure is difficult to do.
With my TBI, I feel as if I am on an island and no one understands how much suffering is involved. I feel alone at times. Sometimes I feel I am not even from this planet because no one I know has suffered a TBI.
I am still hoping that I will be able to be seen by a neurologist to get treatment. The cost is great and I do not have any income. I am hoping for a miracle. And I am waiting to go before a judge for my Social Security appeal. It's all I have for now. I won't give up. Someone has to believe in me, even if it's just me.
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I have a son who was injured in a car accident in Nov. 2006. His TBI has been difficult for our entire family. I would like to think that your Mother just doesn't know how to help you. One of my son't Neurophycologist's has reccommended a NentendoDS, and a program called Brainworks. I bought this for him. And he is supposed to use it every day. He did for a while, and then pretty much forgot about it.
ReplyDeleteI wish you well. Until a TBI comes close to your heart, people have no idea just how devistating they can be. Julie
My brain injury was in 1990, and many family members still don't understand what it is and how it affects me. Thankfully, I have a loving husband who put his life on hold to help me.
ReplyDeleteBeth
Hi I understandand my family expects so much from me like before, the things I cd do, and sometimes make fun of me when I try to explain, it was almost a yr ago today and tonight I smell weird smells again when I cooked for my husband and habe a distastful tasts in my mouth and cant eat what I cooked, it stinks, ... i will ask my Drm but I feel that no one undwerstands and i do get dissy and now I smell weird thin gs.
ReplyDeleteI can really spell better then that but I guess not tonight.
ReplyDeleteI thought you and your community might be interested in a clinical research study now enrolling people with a past head injury who feel sleepy during the day. This study is going on at various centers around the US; go to this website for more information: http://www.headsleepstudy.com/.
ReplyDeleteHello,
ReplyDeleteyou're not alone. I just wanted to say that.
I hope you are feeling better.
HMCraig
Hey I just came across your blog and I have a wonderful book for you and your mom to look at. It's called "Unthinkable" by Dixie Fremont-Smith Coskie. It's written in diary format from a mother who's son suffered from a head injury in 2001. It is real, powerful, and informative. She even gives helpful tips for all familiy members and friends who are trying to understand TBI. Tell your mom to check it out, seriously, it may really help -- I know that it helped me.
ReplyDeletewww.dixiecoskie.com
Good luck with everything and remember that you aren't alone with any of this.
I suffered a severe TBI on June 3, 2010 from a fall. I was hospistalized from 6/3/-7/7/10 (36 days w/3 wks in ICU. I also fell in th hospital on June 15. They did not have my bed alarm on nor my bed rails up as were specifcally ordered!! The nurse did not inform the charge nurse, any family or the doctor. It was only after 2 family members came to visit me & saw how badly my condition was. To make a long story short on this one, they raised "hell", finally the doctor was called (6 hrs. after my fall) a CT Scan was done and back to ICU I went. I remember none of this at all. After getting home on July 7th I suffer daily, I'm scared, don't know what to expect, etc. I will write more tomorrow as I'm getting so tired. I was so excited to find this blog. I have not had the chance to have anyone to talk to about how it "really" feels. As you said, "I feel as if I am on an island and no one understands". I'm applying for Social Security. I would love to hear more from others that suffer from TBI. I have no idea what to expect, I'm scared and I feel so alone...
ReplyDeleteI am so glad to see that others have the courage to speak out so now I do not feel alone. My accident was in November of 2009. Next Tuesday I am finally going to see a Neuro. My husband has been my rock, as well as my seven year old that has grown up so fast. When I really knew it was time to see the neuro was when my now almost three year old took my hand the other night and tried to help me walk. We have no insurance so I have been going to a wonderful clinic that has been treating me as best as they can. It is time to face my fear though. I have been told that since it has been over a year my TBI has healed physically as well as it is going to on it's own and it is time to see what a neuro can do for me.
ReplyDeleteI know that I do not walk this journey alone though and that through this I will help others who may suffer in silence. Every day I live and breathe and as long as I live and breathe I am going to win this. I give praise for the times I walk, talk and think well. When there are times when I struggle and the pain in my head is so severe I don't think I can stand it I stand a little longer. It is through the flames we are refined...... Don't stop fighting........ MaturoAndrea@gmail.com
we sadly lost our adult daughter recently. She suffered from TBI also. You were a great help in understanding her. My prayers are with you.
ReplyDeleteInjury prevention Toronto
I had a slip and fall accident shortly after the january 1st. I had bleeding in my frontal lobe and my brain was severely swollen. I am recovered rather well but I used hyperbaric oxygen therapy to help recover and it significantly increased my recovery time. I am no doctor but I can tell you that it helped me. There is a site that list hyperbaric facilities nation wide which can help people find facilities by them that give treatment. I also have found that there are portable chambers that people can buy and use in home. the site is www.hyperbaricnation.c.org I truly hope this can help someone as it did help me.
ReplyDeleteAwesome blog! I think empowerment is much needed when it seems everyone wants to support (aka promote) the injury. Well written.
ReplyDeleteIn 1998 my life took a huge change of direction in the form of a severe traumatic brain injury. Like everyone else with a chronic permanent condition, I was told I would never recover. Everyone has a story and that's where most stop. Very few make a full recovery so it's deemed impossible by the world.
Often we overlook the innate ability humans have the to overcome whatever challenges they may face. Regardless of the circumstances you can experience good health. There are multiple steps to good health, the first two are by far the most important. Step 1 is to consider good health a possibility. You must also develop the determination to maintain that belief no matter what you are told to the contrary. Step 2 is to neutralize emotional triggers and retire the dramatic details regarding the challenge. This will help you sincerely stop claiming the challenge as yours. Whatever you are going through, it is merely a challenge you can surmount as long as it doesn’t define who you are.
I speak from the experience of fully recovering from a severe chronic condition when I write to you, the path to full recovery and good health can be rather difficult and lonely. Almost everyone will see symptoms of your challenge as a sign of its persistence rather than an indication of goals for improvement. It took me roughly 10 years to get past a chronic condition because I was virtually alone. If you are anything like me the people closest to you may tend to support your injury rather than empower your pursuit of good health.
There were groups and educated professionals doing everything in their power to support the condition. All I really needed was someone willing to empower good health. The problem seemed evident with a simple solution. I started a conversation merely considering the possibility of good health. To facilitate the conversation I created an environment called http://www.ConsideringHealth.org which empowers people in their pursuit for good health.
I invite you to join the conversation and ask that you tell your friends. I believe in your ability to overcome whatever you are going through and I will assist you in living a life of good health. While dealing with a health condition can be difficult, full recovery doesn’t have to be.
Keep figthing. And our prayers are with you.Law Firm Tucson
ReplyDeleteGreat blog. Just read a book called Headache--How to Survive a Head Injury and the Headache Caused by Insurance Companies, Doctors and Lawyers by BJ Geisler available on Amazon.com in both electronic and paperback. Great reviews and the most informative brain injury book I have read. Please forward this to others with TBI.
ReplyDeleteI suffered TBI and recovered mentally and physically. Short daily meditation can support you I believe. The story behind S.N. Goenka was that I suffered headaches that he tried every known medicine to treat, with no affect. I started Vipassana meditation, and recovered, and now teaches this form of meditation at centers across the planet based on donations from vipassana practitioners. I've been to the Massachusetts center.
ReplyDeleteI would also recommend playing piano, yoga, and/or taking up basic charcoal drawing classes. Meditation, piano (motor skills and audo/visual coordination), yoga (motor skills and concentration), charcoal drawing (visual and motor skills, and patience) would all support you.
I was wondering if your Mom is still having problems understanding what you're going through? I noticed you wrote the blog back in 2009, so I was curious what has happened since then. I'm sure all the commenters would love an update -- especially if you won your SS appeal.
ReplyDeleteIt seems like awareness of the effects of TBIs is just not there for many people. As you said, many TBI victims look fine on the outside, and no one can understand what's going on inside the brain. There have been many media stories recently about the long-term effects of concussions and TBIs. Hopefully people begin to understand that they change lives.
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Sometimes, we just have to be our own hero.. Just be strong for yourself and never hate your family for this.
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Traumatic brain injury occurs when an external mechanical force causes brain dysfunction.
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