My Journey, by Sheila Kennedy
My brain injury occurred in December 1982 when I was 15 years old after I was misdiagnosed with lymphoma. I actually had a bacterial heart infection that eventually entered my bloodstream and caused a cerebral aneurysm that was leaking blood into my spinal column. Surgeons repaired the leak and as a result I have 5 metal pins in my head and I’ve lost the peripheral vision on the right side of both of my eyes.
When I was discharged from the hospital I was told that I was “fixed” and that I would never have to think about this again. I had no idea that this would affect my life every day after. Before this happened, I was on the volleyball and basketball teams. I was tall so I did pretty well—NO MORE! Reading became a challenge because I would tend to read the same line over again. My ability to recognize where I was in relation to my surroundings changed. I would run into things on my right side and sometimes on my left. I got confused in crowds. People thought I was ignoring them when really, I just didn’t see them. I can’t see my right hand when I write. I can’t see someone’s whole face when I look at them. I always try to sit on the far-right side of a room so I can see everything. My memory is terrible, especially short-term memory. I’ve learned through the years to adapt to these deficits as best I can while trying not to let anyone know.
A few years ago I was noticing some changes in my vision. I saw a neurologist. A CT scan revealed that I had a “dead spot” or area in my brain that was no longer getting any blood flow and would eventually, with time, get larger and cause symptoms that resemble Alzheimer’s. I started to subconsciously prepare to literally lose my mind. I’m only 50 years old and my hope for my future was gone and I became very depressed. Don’t forget, I thought I was “fixed” and would never have to think about this again and yet, years later, sometimes all I can do is think about it!
One day at work my boss showed me a flyer he received about the BIANE Conference to be held in Kearney. I looked into it further and saw that “cerebral aneurysm” was listed as a type of brain injury. I had never thought of it that way before. I was excited to learn more about what was going on with me and my husband, who has been unwavering in his support of me every step of this journey wholeheartedly encouraged me to go. Particularly cathartic was taking part in the “Unmasking Project” for the traveling exhibit. I created a mask that showed how I felt about my personal journey with a brain injury. I left that conference even more excited about what I had learned and what I realized was certainly part of God’s plan for my life! I have started attending the support group here in Kearney and I am so grateful to have somewhere I can go to talk to others that have the challenges I have. It makes me cry just talking about it!
I am DONE hiding my brain injury and I am ready to use this experience to give hope to others. I know that my fellow group members will become friends as we continue our journey together. I look forward to what we can all learn from each other. I have HOPE again and I’m ready to take my life back!
Seeing Double, by Ruth Hamlin
My name is Ruth Hamlin. My story is no different than many others who experience a brain injury every year. I was driving to work when a vehicle entered the interstate and hit the side of my car, pushing me into the guard rail. My car bounced off the rail, spun across the freeway and hit the guard rail on the opposite side. The car was totaled and I was pretty shaken but there were no broken bones or gashed limbs. An MRI indicted there was no internal bleeding and I should be fine in a few days. I returned to my home and immediately went to bed. I slept for 32 hours.
About 3 weeks after the accident I started having trouble reading. Considering my age, I assumed it must be time to start wearing reading glasses. During the exam I told the doctor I felt as if my eyes were not working together. She asked if I had been in an accident or hit my head? For the next 4 years I went through multiple exams, eye therapy twice a week, and wore glasses with black tape, clip on prisms and various other methods to help improve my vision. I struggled to do computer work, read basic print, and made a lot of mistakes. I felt overwhelmed, helpless and began to doubt myself in every decision I made. I was frustrated and in denial, which lead to depression.
At the time, I had a promising career as the Executive Director of a foundation as well as a partnership in a jewelry business and small boutique. I was making a good income and life was good. Over the next couple years, I relinquished my share in the business and eventually resigned from the foundation as the stress of the mistakes I continuously made were creating problems both emotionally and mentally.
In 2017 I was referred to an ophthalmologist that specializes in brain injuries resulting in vision loss. He was the first person that made me feel empowered and as if there was hope for me and my situation. Over the next year I worked with him, purchased several specialized pairs of glasses and did numerous tests to track my progress.
While my eyes are in no way healed, today I can read if the print is magnified, and I have learned coping skills to overcome the double vision. Financially, I am still in debt and diligently struggling to climb out. However, I know that I will.
Since the accident, I have started a vision support group to help others with vision issues. My partner and I are creating a new nonprofit called Martinwood International that works with family caregivers and their loved ones. After years working with family caregivers, I now know what it is to have to rely on others to accomplish my goals. Through this journey, people have come into my life that were unexpected and yet have made all the difference in my recovery. Without discounting the difficulties, I have to acknowledge the blessings.
What I have learned is individuals with vision and balance problems resulting from a brain injury can regain their self-confidence, learn new skills, and return to a happy, productive, and fulfilled life. We may need time, support, effective treatment and certain accommodations to heal but together we can find our new normal and regain our life.
A brain injury does not mean your life is over. It means your life has changed. It may end up being a change that gives your life an even greater purpose.
To learn more about Martinwood International or the Vision Support Group please see our webpage www.MartinwoodInternational.com.
My deck, shuffled By Andy Sigler
The analogy I use to describe suffering my Traumatic Brain Injury is that it’s like I was at the poker table and the dealer shuffled my deck and before dealing me a new hand, he removed all the Aces and most of the face cards. The analogy the neurologist used was not so delicate. He said what happened to my brain was like going through the windshield of a car.
In early May 2005, I had a sinus infection. I worked as a bartender, which meant I had plenty of contact with all the nasty germs brought in to the restaurant. At least a couple of those germs were bacterial meningitis and infected sinuses are pay dirt for bacterial meningitis. The disease scampered into my skull and caused the formation of abscesses on my brain while I suffered a series of mini-strokes. Along with causing several cognitive dysfunctions like considerable short-term memory loss and deficits in information processing, the trauma also left me with a wicked stutter and damage to the optic nerve in my left eye, which left me partially blind. I underwent a craniotomy to remove the abscesses before my skull was stapled shut again and my family and I engaged in a waiting game to see how much brain damage I would live with or the rest of my life.
Less than a month before I got sick, I had been a full-time reporter for The Reader newsweekly in Omaha. I was engaged to be married. I rented a house with my fiancé that we shared with our two dogs. By the time the clock struck midnight on New Year’s Eve that year, I worked 10 hours a week doing menial labor between trips to the rehabilitation facility, Quality Living Inc., trips to the 13 doctors involved with my recovery, walking my dog and sleeping. After my engagement dissolved, I moved into a 1 ½ room apartment and was waist-deep in drug and alcohol addiction that would last 8 more years.
After another failed relationship with another alcoholic that left me homeless, I faced two options: substance abuse treatment or life on the streets. In my moment of clarity, I opted for treatment and have been sober for 5 ½ years. My stutter has largely stopped, due to relearning how to speak. I compensated for the memory loss by always keeping a pocket notebook handy until the smartphone Notes app came along, though I still leave myself written notes all the time. Along the way I developed a passion for working with animals which progressed to online veterinary courses and a job as a veterinary assistant. After all this time, I have a found a calling I like, a partner I adore and other sober friends and it often seems like that medical affliction that swallowed my life 13 years ago happened to a completely different person. I recently started getting involved with the Brain Injury Alliance. I’ve been going to TBI support group meetings and I will be trying to persuade other TBI survivors to tell their story at the state-wide Brain Injury Alliance Conference March. In doing so, I hope to encourage TBI survivors to get involved in their own recovery through the various avenues offered at the conference and through the BIA-NE.