Survivors SPEAK OUT! . . . Rod
by Donna O’Donnell Figurski
1. What is your name? (last name optional)
2. Where do you live? (city and/or state and/or country) Email (optional)
Coeur d’Alene, Idaho, USA
3. On what date did you have your brain injury? At what age?
April 1, 2016 at age 56
4. How did your brain injury occur?
A motorcycle crash – I wasn’t wearing a helmet, and my head impacted the asphalt when I went over.
5. When did you (or someone) first realize you had a problem?
A passing driver called emergency services.
6. What kind of emergency treatment, if any, did you have?
I was diagnosed as “brain dead” on arrival at the emergency room. I was placed on life-support, and my family was told they’d keep me on it for 24 to 48 hours.
7. Were you in a coma? If so, how long?
About three and a half hours after I was diagnosed as brain dead, my autonomic functions sparked back up. I was comatose for about six more hours before regaining consciousness.
8. Did you do rehab? What kind of rehab (i.e., inpatient or outpatient and occupational and/or physical and/or speech and/or other)? How long were you in rehab?
I was an outpatient for my therapy. I started with speech therapy to address my issues with communication. After two years, my doctor recommended the nearby clinic of a neuroscience institute, where I received occupational therapy and physical therapy. Occupational therapy helped me develop tools and approaches to reduce the negative impact of many of my new disabilities. During my physical therapy, I was able to use a DynaVision system (a light-training reaction device, developed to train sensory motor integration) to help redevelop my visual coordination and improve my balance issues while walking.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
• Sleep was my first battleground. Mental fatigue after poor sleep could make me completely dysfunctional – for example, unable to form sentences. I also had no buffer for raw emotions. They could make me cry or become angry with no warning and often for no obvious reason.
• Poor balance made me worry that people would think I was drinking. Therapy and a trekking (hiking) pole made a big difference for me. I’m able to go without the trekking pole most days now.
• My light-sensitivity has decreased over these last three years, but I still get overwhelmed all too often from the sounds in a restaurant or any room with multiple conversations taking place.
• My girlfriend calls me “Rod 2.0” because I’m so different. So, yes, my personality definitely changed. I used to watch TV and play video games every day; now I can’t do either one. Instead, I enjoy gardening, painting, sewing, cooking, and crafting – essentially any activity where I am creating something.
• I can no longer do math that has any complexity, and I struggle to read. I am so thankful for audiobooks!
• I’ve lost what I estimate to be upwards of 90% of my long-term memory.
• My short-term and working memory are both very unreliable now.
10. How has your life changed? Is it better? Is it worse?
My life is different, that’s all. I am a new person whose long-term memory loss means I carry very little baggage with me. My struggles have changed, but, from the stories I hear about how I was before, my quality of life has most certainly improved.
11. What do you miss the most from your pre-brain-injury life?
It would be nice to remember things when I try to, but, since I’ve lost most of my long-term memory, I don’t really know what I might be missing otherwise.
12. What do you enjoy most in your post-brain-injury life?
I enjoy the “in-the-moment” nature of my life as it is now. Mindfulness meditation was so easy for me to learn because it’s how my mind works now. At any given moment, I’d have to work hard to remember what I was doing five minutes ago, and I’m rarely certain of what I’ll be doing five minutes from now, but I am always aware of so much that is happening right now. This is likely a contributor to my high level of sensitivity to chaotic environments.
13. What do you like least about your brain injury?
Perhaps it’s the varying judgements I experience. Some seem to think I’m not as bad as I let on. Some express a little too much sympathy or “understanding.” Some base their view of me on my highest-performing moments, so they think I somehow plan when to be dysfunctional. This last one is the hardest, and it comes from those closest to me.
14. Has anything helped you to accept your brain injury?
I went from being a caregiver for my son when he returned from the military with a TBI (traumatic brain injury) to becoming a TBI-survivor. Without question, he’s the one who has had the most impact on me in this area. My girlfriend is as patient as I could ever hope for – enduring my personality change and my sometimes-volatile emotions. You feel like you can be more normal when someone treats you as though you actually are normal.
15. Has your injury affected your home life and relationships and, if so, how?
Getting things done is a huge challenge. The number of uninitiated and half-finished tasks around my home seem to increase over time. I have good spurts when I get one of them done, but ever more are piling up.
Relationships have changed much… I could write a couple of pages on this.
16. Has your social life been altered or changed and, if so, how?
I don’t socialize at all any more. I am a caregiver for a mother with dementia, so my time is limited. I spend some time each week with my girlfriend, but that’s about the limit of my socializing.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I am my own caregiver. I give special recognition to those in my life who are as patient as they can be with me. I was a caregiver for my son when he came home with his TBI. Back then, I was supportive and non-judgmental, and he’s that way with me now. Through my experience, I realize that I couldn’t come close to understanding what was happening in his mind when I was his caregiver. I think that’s something that only becomes completely clear if you have to go there also.
18. What are your plans? What do you expect/hope to be doing ten years from now?
Ten years from now, I’ll be retired – with a dog by my side and, if all goes well, some chickens, and perhaps even goats, to tend. I hope to garden much and preserve enough each year to fill my pantry and to share with others, to cook, and to work in my shop and become better at crafting.
19. Are you able to provide a helpful hint that may have taken you a long time to learn, but which you wished you had known earlier? If so, please state what it is to potentially help other survivors with your specific kind of brain injury.
I suggest you …
- … write things down.
I keep multiple dry-erase whiteboards at work and at home to keep track of things. When you schedule your doctor appointment, start your list of questions immediately, and keep it somewhere obvious so you can’t miss it when it’s time to go. (I use a list app on my phone, so I know I’ll have it when I go.)
- … be as patient as you can with those around you.
Unless they’ve experienced a TBI, they really can’t understand your struggles.
- … set rules with those who you spend time with.
For example, being able to say, “I need some time alone” and being able to find a quiet place without anyone taking it personally, asking after you, or chasing you down. (The latter was a big one for me. I often just need to escape for a short time.)
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Develop tools that work for you. I highly recommend doing occupational therapy. That’s where I learned to identify the issues that plague me the most and got solid advice on how to develop tools and strategies that make a difference in my life on a daily basis.
Learn how to eat properly to facilitate your recovery and to support your mental function in the long term.
Work with a trusted medical professional to develop the supplement regimen that is best for you.
Meditate. The single greatest impact on my recovery has come from developing a daily meditation practice. I encourage all brain injury survivors to explore meditation. Meditation is a simple and easy-to-learn practice that has been shown to make physical changes to the brain, and it has greatly helped many brain injury survivors.
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(Photos compliments of contributor.)
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