Survivor Stories

11
Oct

You are in Control

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Q3: Summary – the cause – the injury – today’s quality of life?

On December 2, 2014 I was walking my dog for our nightly walk and as I was crossing the street IN the crosswalk a car did not stop and hit me as well as my dog. She was 2 years old, a black pure bred German Shepherd and did not survive.  I was left unconscious and rushed to the ICU. The next thing I remember clearly is waking up on December 23 in a rehabilitation hospital. I had difficulties swallowing, sustaining attention, staying alert/awake and I was in a wheel chair for 90% of the day. I do not have any memory from December 2-23. I stayed as an inpatient in this hospital until January 9. I was teaching Kindergarten at the time and it was recommended, by my neurologist, that I leave work for at least 1 year. I attended outpatient rehab for another 2 months or so. I then began Cognitive Therapy, which was not covered by insurance and cost me a pretty penny. I am in the midst of deciding whether to continue at this particular cognitive therapy center or move to another one. My fiance and I got engaged 3 weeks before I was hit by the car and we are planning our wedding for June 2016. We just recently moved away from the town where the accident was and we are feeling very positive about this decision. Today’s quality of life? I don’t know yet what my “new” life will become, so, I don’t know what to say about my life today. However, I do count my blessings, so I still have my wonderful fiance by my side, I can walk again and I have no physical evidence of the accident. Mentally and emotionally? I can’t comment on how that feels today because it changes frequently and it’s not so positive all the time.

Q4: Please share your experience at the time you became aware of the injury?

The first question I remember asking was “where’s Becca?” My dog. It was explained to me (probably for the second or third time) that we were both in an accident and she didn’t make it. If there was a bigger word than confused, that’s what I was. It’s really difficult to share my experience at the time I became aware of the injury because, to be honest, I can’t really mark the day I became fully aware. I remember Thanksgiving, then December 23…but I don’t know if on December 23 I became truly aware of the injury. I think I’m still in the process of becoming truly aware of my injury. It hasn’t been a year yet. I lost my mother to a brain tumor in 2008, 8 months before my college graduation. I thought that was my biggest hurdle in life. Until now.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

I was in a coma for maybe a week. No memory or full awareness until 21 days after the accident. No surgery. (the silver lining)

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

I stayed in the ICU at Westchester Medical Center for 10 days or so, then went to a rehabilitation hospital for the remaining time. I managed to climb out of my bed while at the rehabilitation hospital, thinking I could walk, and fell on the ground and was rushed again to the ICU. I have no memory of this event. I attended Speech, Occupational and Physical therapy at this hospital. I wasn’t allowed to walk on my own, I needed to be pushed in a wheelchair for my entire stay at the rehabilitation hospital. I was one of the youngest patients there, I am 28. A majority of the patients were over the age of 50.

Q7: Tell us about the time in rehabilitation?

It was a reality check. If rehabilitation doesn’t cause awareness of an injury then I don’t know what does. It felt like long days, no privacy, interaction with people of various ages, history, backgrounds. If I knew what jail felt like, I would say it felt like jail. It did feel like jail, but I don’t know what jail feels like.

Q8: Tell us about coming home!

Coming home was also a true reality check. No more doggie to greet me at the door. It was confusing, discombobulating, overwhelming and sad.

Q9: “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”

Confusion, depression, anxiety, hopelessness, isolation, fear, lack of motivation, empathy.

Q10: What year did the injury happen?

2014

 Q11: Tell us about life today?

Life today is still a work in progress. Life today needs to be organized. Life today is OK.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

Having supportive people by my side on a daily basis makes the biggest difference. Knowing I can bounce my confused, emotional, depressive thoughts off of someone without them judging me is a true fortune. It is difficult to offer advice or encouragement because I think I still need some of that myself. Just don’t give up. As much as it seems that giving up is the best option, it’s not. If one way doesn’t work, try a different way. If your therapist is making you feel inept, more emotionally unstable, or weak they’re not the right clinician for you. You hire the help, you can fire the help. You are in control of your recovery, your rehabilitation. Be the best friend, be the supportive friend that you need. When you feel like you’re in the midst of information overload, let it be. Stop. Sit down. Take a deep breath. Get up when you’re ready to go again and let it be.

 

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

01
Sep

Falls

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Other (please specify) Mom died from fall-caused TBI, caregiver of TBI survivor Dad, friends with

Q3: Summary – the cause – the injury – today’s quality of life?

I had 6+ concussions, 3 as a child, 3 as an adult. The 6th(fall on ice) was 20 years after the 5th(car-bicycle collision) but the last 2 each left residual cognitive challenges, worse after the 6th. I have impaired visual and auditory processing, short term memory deficits, attention, word-finding and vision issues. My career as a family doctor and medical clinic administrator ended, and I gave up flying my plane due to vision, spatial orientation and attention challenges. I miss the challenges and satisfaction I got from practicing medicine, but have replaced it with volunteer work educating the public and professionals about brain injury as well as being a full time caregiver for my TBI survivor dad. As I wrote in a piece for the Chicken Soup for the Soul, Recovering from Traumatic Brain Injury book, I believe that I’m right where I’m supposed to be.

Q4: Please share your experience at the time you became aware of the injury?

I was wearing skis but actually standing still looking at the beauty around me when somehow I slipped and fell backward, hitting my helmeted head on the icy ground. I hit hard, and had an instant significant headache. I wasn’t sure if I’d been knocked out, but some things were happening around me that made me suspect I’d been out or confused a bit. I was skiing alone, so had no one to check in with. I tried another run, but was beginning to feel nauseated so figured I’d been concussed. I drove 90 miles home and over the next week became increasingly more confused, developed double vision and eventually had severe PCS. After 2 months of being lost, scared and confused I was “found” by a case manager in my non-profit HMO and hooked up with outpatient rehabilitation. From there my journey to a new me began and continues.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

I used to tell folks that after hitting my head I had an alphabet soup of problems; CRS (can’t remember shi-), AD (Alzheimer’s Dementia), ADHD (Attention Deficit Hyperactivity Disorder), GAD (General Anxiety Disorder) and RLS (Restless Leg Syndroms). My journey did not involve any hospitalizations. I had an urgent care visit with a normal CT scan, and ER visit with another normal CT after worsening symptoms, followed by a normal MRI and a neurologist telling me I had PCS (post concussion syndrome) and that I’d know when I was better and when I was to return to my work as a family doctor. She gave me 2 weeks off of work and scheduled no follow up. I thought I was going crazy because I wasn’t getting better and didn’t know why. I’d just “rang my bell,” and expected full recovery quickly. Not!!!

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

none

Q7: Tell us about the time in rehabilitation?

I attended outpatient rehab at Mapleton Rehabilitation Hospital in Boulder, CO for about 6 months under the care of a PM&R specialist. There I saw a cognitive therapist and social worker, as well as participating in weekly hikes with a group of survivors and 2 therapy staff. I also was under the care of a neuropsychologist at Craig Hospital in Denver who evaluated efficacy of different medication trials. On my own I saw a optometrist I’d seen present at a state BI conference who did vision therapy with good help in reading deficits.

Q8: Tell us about coming home! never left that goodness

Q9: “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”

scared, overwhelmed, TIRED, frustrated,”stupid”,then adapt, adjust, accept and move on

 Q10: What year did the injury happen? 2002

Q11: Tell us about life today?

Today I am “retired” on private disability and a full time caregiver for my 83 year old TBI survivor dad. I volunteer as a presenter on topics related to TBI/BI and serve on the BIAA Advisory Committee. I am passionate about spreading awareness about TBI, as well as helping others do that. I’m leading a project of the Advisory Committee of BIAA to develop a National Directory of Speakers, “People with Brain Injury, Presenting Brain Injury” I also authored a book, “Brain Injury Survival Kit, 365 Tips, Tools and Tricks to Deal with Cognitive Function Loss.”

 

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

One of the hardest things to come to peace that you will not be who you were before, but you can be a great person going forward, sometimes even better than who you were. Find strategies and tools to assist you in the challenges you have from your brain injury, just as someone would do after losing a limb, their vision or their hearing. Take care of yourself, you are more than just a brain injury, you have all the potential health problems of anyone else. Good health helps you and your brain function best. Find support through others who are on the same journey, with local support groups or online support. It helps to interact with others who “get it.”

PAGE 8: About You
Q13: Please your name and email address

Name: Cheryle Sullivan
Email Address: cherylesullivan@nullyahoo.com

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

 

01
Sep

Violent Crime

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury? Survivor

Other (please specify) i am also a friend of several tbi survivors

Q3: Summary – the cause – the injury – today’s quality of life?

violent crime, head injury, post concussion syndrome, undiagnosed for 4 years, waking up to a new life

Q4: Please share your experience at the time you became aware of the injury?

i wasn’t sure how i knew something fundamental had irreversibly changed when so many other things still seemed to be in place. i felt denial, shame, and grief. i move among the latter two and acceptance and often appreciation and pride. everything is complicated.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

bleeding from two head wounds, scalp lacerations, sutures, taken to nearby er, tests done, sent home same night

Q6: Tell us about the hospital stay after the survivor was no longer in a coma never experienced coma

Q7: Tell us about the time in rehabilitation?

i never had inpatient rehab. i am currently participating in outpatient rehab. it is confusing. i see the benefits but it is also so limiting in terms of flexibility, creativity, and imagination. i am on the fence. transitioning to new things on the horizon.

Q8: Tell us about coming home!

i just came home from the hospital and since i didn’t know i was concussed i took an antianxiety/muscle relaxer to put me to sleep. it felt unreal even after i woke up. did it really happen? why? what was different. tried to resume life as usual. long process. many labyrinth curves and switchbacks. many beautiful mountainpeaks.

Q9: “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”

sensitive, uncertain, new, precious, spirit, complicated, layers, growth, pain, love, radicalized, politicized, broken, built, intention, community, connective

Q10: What year did the injury happen? 2010

Q11: Tell us about life today?

today was ok. i was tired :) and the air outside was delightful

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

it is important. you are significant. use the internet or get help doing so. find people. you are human. grief. newness. precious. heart.

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

 

01
Sep

Scared

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

 Q3: Summary – the cause – the injury – today’s quality of life?

Grade 3 glioma. I was 27 with 2 kids and a husband suffering for 3 yrs of autoimmune difficiency when they discovered it in an er.

Q4: Please share your experience at the time you became aware of the injury?

I was relieved and scared because I knew my life would be different from that day on. My brother and sister also have brain tumors, so I knew how it changed you and effected your family. God had me from the beginning though because I was diagnosed at the end of November and December 10th I was in UCSF being operated by the neurosurgeon who wrote the book on the exact type of tumor I had! I am now completely free of cancer, but my family and I still struggle because of how traumatic it was, as well as the lasting effects of brain injury. I get headaches, fatigue, spacey, crabby I also have insomnia. It depends on the day and the amount of stress too and the weather . They told me I had 3mo. to live & to prepare my kids for losing a parent. I proved them wrong!!! 15 yrs later I’m alive and living! So don’t give up!!!

 Q5: Tell about the experience immediately after the injury. Surgery? Coma?

I was in ICU for 1 night, my husband wouldn’t leave my side. I really don’t remember much except him being there and me not being all there. It took a good year to start getting back to a resemblance of myself but I will never be the same. I had 6 wks of radiation which made me lose my hair and my red blood cell count dropped so low I had bruised all over so they put me on a high dose of steroids.

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

Respondent skipped this question


Q7: Tell us about the time in rehabilitation?

Respondent skipped this question

Q8: Tell us about coming home!

At the time we lived in South Lake Tahoe elevation 6000ft. I had only been in the hospital 3 days, so there really was no rehabilitate for me. I couldn’t go home due to the increase in elevation as it made my head swell. Once I got home I really don’t remember

Q9: “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”

Sad, confused, frustrated, envious of others and their “normal” lives.

Q10: What year did the injury happen? 1999

Q11: Tell us about life today?

I volunteer at a pregnancy clinic 1 day a week. I have a very full life with my husband, 2 kids, whom are now 22 and 20, and a beautiful 2 1/2 yr. Old grandson. It’s a challenge living because of my pain, but my family keeps me going. I travel to different places annually and pretty much live a good life.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

Eat well! Get your rest! That is key. And keep the faith. I give God all the credit for my life and I wouldn’t be here if it wasn’t for my faith and the support of other believers and friends. Accept help and don’t beat yourself up for not being as you once were. God has done this for a reason. Keep on keeping on together we’ll get through this

 Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

https://www.surveymonkey.com/analyze/browse/1mwE_2BE6xM1L4zjZ0xctWAA0Ndq5klmZFp2efu2Qb5_2BY_3D Page 2 of 2

 

01
Sep

Falls

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor


Q3: Summary – the cause – the injury – today’s quality of life?

Two falls 1 1/2 years apart. First one , my sandal sole caught under the edge of a speed bump that was only pegged to the pavement. I was walking fast so my leg wristed in my hip turning me sideways. My momentum caused me to fly in the air to land ten feet away from where I tripped. I landed fully outstretched on my left side. Nothing broke but when I was able to sit on the macadam, I was totally puzzled about how I fell. I had no idea of how injured I was. I was alone. People nearby did not come to help me. I was in the parking lot of Fallon Community Health in Leominster, MA. The second fall in Dec., I was getting out of my car at home, not quite realizing how slippery the driveway was. My feet slipped out from under me. I landed on my tailbone, falling all the way back, my head hitting the icey pavement. Again I was alone. My home was in a semi-rural area. Even after 22 years, I have some fear of walking in unfamiliar territory, uneven ground and on snowy surfaces. There is an escalator in Boston, MA that I cannot go down because it faces the cavernous room of the T-Station. I was 59 yrs. young when I had the first accident; I am 81 now. Those injuries finally came back to bite me, requiring hip replacement operations; 2012 and 2014. An accumulation of smaller falls over my lifetime plus those big ones, I have lumbar spinal stenosis to deal with, modifying my activity. I did have a good recovery from the hip ops. From the head injuries, I still have some trouble with the cognitive and memory fragmentation that I was diagnosed having, 4 and 10 years post injury. That backwards sentence is one of my symptoms confusing what I tried to say. My health otherwise is very good. I am very fortunate to be disease free. My PCP says I could have ten more years. I told him I need 20 to finish all I am doing. By the way, those operations were the first and only ones I ever had. My only difficulty, in regards to them, was the after effects of the anesthesia or maybe it was caused by the whole process. I don’t want to write about that now. I am getting tired with all this thinking and typing. I have been trying to write a memoir of my recovery from the head injuries for a couple years now. The ops got me off track. I have been trying to get back in the flow of that writing. I have difficulty organizing all that I journaled that is the material for my Memoir. I wish there was someone who could help me. There is the Nat’l Assoc. of Memoir Writers but their yearly membership fee is $148. Not available from my income. So I search for all the free information and support I can find anywhere.

 

Q4: Please share your experience at the time you became aware of the injury?

I had been divorced for six years, graduated from college at age 57, for 2 yrs., into developing my home-based business, “Ele’s Designery”, doing clothing alterations and other sewing, plus, designing and home manufacturing children’s bibs. I had been in a new relationship for one year when I ‘flew in the air and landed ‘whack’ on the pavement’. It wasn’t long before I began to be aware that I wasn’t quite right. But, I had no idea why. My PCP at that time saw nothing wrong with me. My partner was frustrated by changes in my behavior. It was particularly difficult because he was my Business Consultant and we had been having a wonderful time getting to know each other. I really didn’t ‘get it’ that I had suffered a brain injury until after the second accident. It was 2 1/2 yrs. after the first when I went to a Massachusetts Rehabilitation Commission Conference in Boston with my sister. Listening and talking with people there, it finally hit me that I had a brain injury. I went to our hotel room and beat up a pillow raging at Dr. Coit for not recognising my injury and leaving my in physical, mental and emotional pain. A few weeks later I wrote a poem about all of this. I would like to share it, if someone who reads this will tell me how and where, contact me at < eg.gardenlady@nullgmail.com>. By the way, my injuries prevented me from continuing my business. I have tried to get help for it but without money, all doors are closed to me. Even Mass. Rehab. Comm. would not help me except when I was able to be regularly employed.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

The day I was first injured, I had just left the office of my PCP. As I have written above, I fell in the parking lot of the medical clinic. I sat on the pavement assessing what had happened and why, not understanding then what had caused me to take a flying leap of a fall. I was able to determine that I had no broken bones so figuring I wasn’t hurt too badly, I got myself up to stand. I don’t remember feeling dizzy then so I figured I was alright to drive home. I was concerned about the time because I had an appointment at home for my first customer for my business, Ele’s Designery. As I recall now, the drive home, about 2 miles, was uneventful. My customer arrived about 15 minutes after I got home. After introductory conversation, I set my full length mirror up against a door in the inner hall area, the only place I had to do this. When I turned around to talk to the woman, I heard a scraping crash. The mirror had fallen to the floor, broken into many pieces. I have evaluated this situation occurring because of the injury. I was not able to use good judgement and probably was beginning to experience some shock. I managed to finish taking care of my customer. After she left, while I was sitting, I began to not feel so well. I called my PCP, told the receptionist about falling but she did not have me return to the clinic. I was accustomed to chiropractic, so called and got an appointment in two days. No matter what I told my usual medical people about how I was feeling, what I was experiencing, no one believed me. It wasn’t until two years later that A physiatrist diagnosed the truth that I had suffered a brain injury. He prescribed a low dose of Ritalin to help me with concentration and focus issues. When my PCP found out, he objected and sent a letter to me registering his disapproval as well as his determination that I did not have a brain injury. This letter will be included in my Recovery Memoir, ” A Survivors Journey, Living with a Mild Traumatic Brain Injury”

Q6: Tell us about the hospital stay after the survivor was no longer in a comaI was not hospitalized. I only had x-rays and an MRI through the emergency dept. I really don’t remember clearly after 22 years.

Q7: Tell us about the time in rehabilitation?

I had very little therapy. A few weeks of P.T which caused me to be quite discombobolated during the days between appointments. I was unable to remain focused to accomplish anything, forgot I had food on the stove, forgot I had customers garments to work on, couldn’t find where I put them. When I did, I realized that I was experiencing out of sight, out of mind.

About 4 years after my injuries, I had a few weeks of Speech Therapy or Occupational Therapy for organization. Insurance limited to 8 weeks. All the rest of my recovery journey I have had to struggle through on my own with my own wits. I am fortunate to be strong with problem solving and a creative thinker because I am an artist with strong designing skills. I have had to advocate for myself from the beginning. My children didn’t see me often so did not notice the changes in my behavior. General thinking was, Mom is imagining things.

Q8: Tell us about coming home!

From June 1993, the first accident until sometime in 1995, I lived alone in my home. My partner was a frequent visitor, as I was in his home. But gradually, I was having more difficulty taking care of everything in my house. I was becoming overwhelming. I was also fearful of falling down stairs or anywhere on my property. No one would have heard me if I screamed or yelled, and no one came to visit. If I didn’t answer the phone, anyone would assume I wasn’t home at the time. This isolation became too difficult for me , so I began to spend more time at my partners’ home. There, I didn’t have to see all the things I couldn’t take care of. Life there was less complicated and I eventually moved in with him. I went to my house to do work for my business which I was trying hard to hold on to. Ultimately. I had to let it go.

Q9: “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”

confused,overwhelmed,fearful, angry, frustrated, sad, depressed, lost, dispair 

Q10: What year did the injury happen? 1993 and 1994, 1 1/2 yrs. apart


Q11: Tell us about life today?

My life today? I have worked hard to get where I am, accomplishing recovery of skills interrupted. I had enjoyed sewing and various forms of fancy needlework all my life. My injuries left me with some of the knowing but the inability to do them, sometimes it was lacking the dexterity, other times I couldn’t hold the count of stitches or place in a pattern for the seconds it took to look at the piece I was working on. I think it was around ten years after being injured that I began to get these skills back. Now needlework is a regular pleasure again.

I have had to adapt to doing many of my activities differently or in some cases not al all. Some because of loss of ability, and now I think I have to add, because of aging. I have about equal disability, cognitively as physically. They both are irregularly available to me. Even so, Other than the needlework, my life is wrapped around indoor and outdoor gardening, creative art designing and writing. For the later, I am a member of a writers and poets group, writing my recovery memoir, a collection of stories memoir, short stories and essays, and an occasional poem. I am also a member of the Gardner Area League of Artists. Currently I am preparing some of my Recycle Art Note Cards to sell at a Fall Fair.

 I am married to Fred since Oct. 2000. We met in 1992, and were enjoying our developing relationship when I was first injured in June, one year after meeting. In 1994, he was injured in an auto accident. Our life has been a rollercoaster of accidents leaving us with cronic pain from the injuries. We are constantly finding ways to cope with our losses through the activities we enjoy in our home.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

It took up to two years before I knew and understood that I had suffered a brain injury from the two falls. Something I read caused me to start thinking about who I was before injury. I asked myself, “Who are you? What do you know. What can you do?” My first accident generated a legal case. My lawyer told me to journal about everything; activities, and physical condition every day. I wrote a lot and those journals are the basis of my Recovery Memoir.

I journaled on those questions to find out what had not changed and what I could do about what had changed. I found there were facets of myself that I knew were who I was, and had always been. I explored my knowledge of things I had known how to do. When I was cut off from some, I found another way or let it go for a while. Some Activities I picked up later as I had healed physically or cognitively. So ultimately, I would focus on that which I could still do without too much difficulty, and gradually tested whether I could do things that I thought may be lost.

Because I had a mild T.B.I., I believe I wasn’t afforded much therapy. The health insurance governed how much for how long and what type. I had Physical Therapy which caused me confusing side effects which were not addressed by my PCP. I believe he wrote in my medical records that I suffered from some sort of neurosis. No matter what I told him about what I was experiencing or information I brought to his attention, he never diagnosed brain injury.

It wasn’t until I joined a brain injury support group at a rehab hospital and met a Physiatrist there that I received a diagnosis. After that, I received Occupational/Speech Therapy for daily and speech organization. This is when I learned that the injuries had caused some place in my brain to open up causing me to be using higher intelligence language.

As time passes, I recognised that when I was injured, knowledge of brain injuries was still limited. Great strides have been made just in the last ten years. Also, the Brain Injured Associations have become stronger advocates for all of us Survivors of any type of brain injury. I believe my story  would have been very much different if I had had access to the services and knowledge available today.

 

 

01
Sep

Twins

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Q3: Summary – the cause – the injury – today’s quality of life?

Difficult three day birth delivery; xray; doctor expected one child, xray showed two (twins); forceps delivery, visible bleeding from head.

Q4: Please share your experience at the time you became aware of the injury?

The birth event was hidden from me as it embarrassed my mother and my father agreed with her to keep quiet on what happened (a non-normal, three day complicated birth delivery, forceps injury delivery). I did not become aware of the injury which caused paying attention/inattention/working memory difficulties until I was in college.

Q5: Tell about the experience immediately after the injury. Surgery? Coma?

I was taken home from the hospital and my head was covered with a bonnet so the neighbors would not be aware of the forceps birth delivery trauma. My experience was not being able to view life along the lines of sustained attention. I was easily distractible with a very short attention span (both words/letters and numbers/digits); my attention span was not whole/not normal. X-ref: paying attention/inattention, processing, sustained attention, subtle working memory glitch, central auditory processing glitch, dyspraxia.

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

(See above – I did not have surgery, I was not in a coma; I did experience forceps trauma/bleeding from head).

Q7: Tell us about the time in rehabilitation?

Through a series of experiences over 21 (1967) to 27 (1973) years, I became aware that my paying attention/inattention challenge responded in a positive, real way to coffee/caffeine compounds/FDA approved alertness aids (Tirend, NoDoz). I was diagnosed with Organic Brain Syndrome, Inattentive ADHD including Central Auditory Processing and Dyspraxia.

Q8: Tell us about coming home!I tended to view life as seeing the trees (parts), not the forest (whole). Caffeine (Tirend, NoDoz – FDA approved alertness aids) allowed me to temporarily see the forest (whole) for 4 hours plus at a time.

Q9: “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” 

inattentive, distractible, unalert, memory, concentration, sequencing, continuity, initiation, visualization, thinking, cognition, perception, impairment, glitch, future, ADD, ADHD, APD, hearing, processing, communication, socialization, neurology, perplexing, baffling, mysterious, consciousness, apraxia, dyspraxia, hemiparesis

Q10: What year did the injury happen? 1946

Q11: Tell us about life today? 

Due to finding a medicine (Tirend, NoDoz) which helped aspects of my paying attention difficulties, I was able to survive; today, I am retired.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

For partial answers/insights into paying attention difficulties (neurology), read: Nerves in Collision book by Walter C. Alvarez, M.D., the How To Cure Hyperactivity book (1981) about Inattentive ADHD by C. Thomas Wild, and Remarkable Medicine book by Jack Dreyfus.

PAGE 8: About You

Q14: This information will be used to provide hope for others touched by TBI. Please indicate your permission to post your story on our blog and web site? Your name or email address will not be used with the posting.

Yes, you have permission to post my input

 

 

01
Sep

Life is Good

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Your Story
Q3: Summary – the cause – the injury – today’s quality of life?

Grade 3 glioma. I was 27 with 2 kids and a husband suffering for 3 yrs of autoimmune difficiency when they discovered it in an er.

Q4: Please share your experience at the time you became aware of the injury?

I was relieved and scared because I knew my life would be different from that day on. My brother and sister also have brain tumors, so I knew how it changed you and effected your family. God had me from the beginning though because I was diagnosed at the end of November and December 10th I was in UCSF being operated by the neurosurgeon who wrote the book on the exact type of tumor I had! I am now completely free of cancer, but my family and I still struggle because of how traumatic it was, as well as the lasting effects of brain injury. I get headaches, fatigue, spacey, crabby I also have insomnia. It depends on the day and the amount of stress too and the weather . They told me I had 3mo. to live & to prepare my kids for losing a parent. I proved them wrong!!! 15 yrs later I’m alive and living! So don’t give up!!!

 Q5: Tell about the experience immediately after the injury. Surgery? Coma?

I was in ICU for 1 night, my husband wouldn’t leave my side. I really don’t remember much except him being there and me not being all there. It took a good year to start getting back to a resemblance of myself but I will never be the same. I had 6 wks of radiation which made me lose my hair and my red blood cell count dropped so low I had bruised all over so they put me on a high dose of steroids.

Q6: Tell us about the hospital stay after the survivor was no longer in a coma

 Respondent skipped this question


Q7: Tell us about the time in rehabilitation?

 Respondent skipped this question

Q8: Tell us about coming home!

At the time we lived in South Lake Tahoe elevation 6000ft. I had only been in the hospital 3 days, so there really was no rehabilitate for me. I couldn’t go home due to the increase in elevation as it made my head swell. Once I got home I really don’t remember

 Q9: “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”

Sad, confused, frustrated, envious of others and their “normal” lives.

Q10: What year did the injury happen?

 1999

 Q11: Tell us about life today?

I volunteer at a pregnancy clinic 1 day a week. I have a very full life with my husband, 2 kids, whom are now 22 and 20, and a beautiful 2 1/2 yr. Old grandson. It’s a challenge living because of my pain, but my family keeps me going. I travel to different places annually and pretty much live a good life.

Q12: What do you want to tell others going through the same process? Treatments, understandings and actions that made a difference?

Eat well! Get your rest! That is key. And keep the faith. I give God all the credit for my life and I wouldn’t be here if it wasn’t for my faith and the support of other believers and friends. Accept help and don’t beat yourself up for not being as you once were. God has done this for a reason. Keep on keeping on together we’ll get through this

 

30
Sep
iStock_000019649544XSmall

Has your life been touched by a Traumatic Brain Injury?

Yes

How have you been touched by a Traumatic Brain Injury?

Survivor

Summary – the cause – the injury – today’s quality of life?

Difficult three day birth delivery; xray; doctor expected one child, xray showed two (twins); forceps delivery, visible bleeding from head. (more…)

21
Aug
Intravenous DripIntravenous DripIntravenous drip

Time is the key word

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Q3: Summary – the cause – the injury – today’s quality of life?

A car hit me while crossing street.

(more…)

21
Aug
Mediumxray

Sanctified

Q1: Has your life been touched by a Traumatic Brain Injury?

Yes

Q2: How have you been touched by a Traumatic Brain Injury?

Survivor

Q3: Summary – the cause – the injury – today’s quality of life?

Giant-powerful-Motorcycle accident

(more…)

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