Q1: Has your life been touched by a Traumatic Brain Injury?
Q2: How have you been touched by a Traumatic Brain Injury?
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
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: firstname.lastname@example.org
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