Category: TBI Survivor's Stories Written by Survivor
Summary - the cause - the injury - today's quality of life?
Fell ten feet out of a tree while hanging upside down, so I struck my head directly on top and compressed my spine. This was 25 years ago - my parents did not have health insurance, so I was examined by a doctor at home. Lost speech for a bit.
My memory is horribly frustrating long term disappears and I can feel as I lost memories of important events in my life. I live in daily pain 24/7 - almost body-wide. I could not go to law school and had to fight for two years to be able to work 20-30 hours a week and a simple job. I love my life, but wish sometimes it could be a bit easier. I appreciate the little things in life and am thankful for that. If I could get rid of one: the memory loss or pain, I would keep the pain and get my memories back. I have none of my childhood and am losing those from my courtship with my husband of 3 years. I worry about Alzheimers. I have had several small head injuries since which made my symptoms get worse each time.
Please share your experience at the time you became aware of the injury?
I do remember a glipse of the moment it happened, but I have no memories of what led up to it or any memories from my childhood before that point, except those told to me and shown to me in videos. I remember hitting the ground. There was no pain, no sound, and I tried to yell to my mom in the house - I could see her in kitchen window and I realized I could not speak. I am told my older sister was with me the whole time - I have no memory of her being there. I remember being lied down on the couch.
Tell about the experience immediately after the injury. Surgery? Coma?
Foggy memories - did not go to hospital. Doctor was examining me at home for a while so my parents wouldn't be put into debt, he did not think it was too serious - had trouble with my speech and took a while of rehab to get that back. No surgery or coma.
Tell us about the hospital stay after the survivor was no longer in a coma
Tell us about the time in rehabilitation?
I did speech rehab. All I remember about it is being pissed I could not say refrigerator. It is still the first word I forget when I am tired or have a migraine -have to describe the cold box in there with the food. I have since been in physical therapy for my back and joints about half a dozen time. Never does much.
Tell us about coming home!
"Please type some single words that describe how TBI has touched your life. For example: Frightened, confused, sad, etc. Enter as many or as few words as you like. Separate each word with a comma"
Terrified, frustrated, blessed, enlightened, appreciative, pain, loss.
Tell us about life today?
I am pretty functional. My memory is progressively getting worse. I graduated college with a 4.0, and I remember NOTHING from it. I learn very quickly, but can not retain the info. long term. The more active I stay in learning something, the more it stays in my mind because my short term memory isn't too bad. I get lost a lot driving. I have no sense of direction to the point where I can go somewhere 10 times and then get lost the 11th. I was bedridden two years with spinal injuries and fought to come back to work 20-30 hours. If I overdo it, it takes days or weeks to overcome that. I am able to play on occasion with my dogs, but my husband and I have all but lost our social life. I feel guilty. My pain is getting progressively worse. I have 4 nerve rhizotomies on my neck a year - a blessing! The pain was also in my lower back and has now spread to my bid back. It is in all my muscles and my legs now. I have a short fuse and little patience. I cannot find the energy every day to do things like shower or prepare food.
What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?
Rhizotomy for nerve pain - a must. Do not be bullied into not using pain meds - whatever makes you functional!!! The danger is when you try to eliminate all pain - you cannot and you shouldn't. That is how addiction happens much of the time. I feel blessed to have my life slowed down so I could appreciate the little things in life and really nurture my relationship with my husband and boys. Keep trying new things - there is always help. It took me about 50 medications before I found an effective treatment for my chronic insomnia. It took me 5 years to find my pain specialist. You are the patient - you need to take control of treatment until you find a team that you can rely on and let them take over for you when you need it. Ask for help! I am still not good at that. Do not compare yourselves to others. As long as you are putting forth as much effort as you know you can - you are doing great! Be positive, don't allow your disability to define you to others, but also allow yourself to pout and mourn what you have lost, just not for too long. Give yourself time to say goodbye to the old so you can embrace the new. Do not allow medication "titles" to dissuade you from trying them. I do not have depression, but take two anti-depressants to help with my pain and insomnia. Good luck and try to enjoy something every day.