Survivors SPEAK OUT! Deb Brandon Ph.D. and Author
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)
Pittsburgh, Pennsylvania, USA firstname.lastname@example.org
3. On what date did you have your brain injury? At what age?
March, August 2007 I was 47.
4. How did your brain injury occur?
Brain bleeds and subsequent brain surgeries
5. When did you (or someone) first realize you had a problem?
In the spring of 2006, I had some fleeting symptoms (dizziness, poor balance, vertigo, tingling in my arm). In September 2006, I mentioned them to my doctor at my annual check-up. She sent me for tests, including a brain MRI (magnetic resonance imaging). I was diagnosed with bleeds from cavernous angiomas (tangles of thin-walled blood vessels in my brain). The following spring (March 2007), I suffered from loss of hearing and experienced a seizure. That night, I came down with the worst headache you could imagine, which was when I realized I’d suffered another bleed (confirmed in the Emergency Room).
6. What kind of emergency treatment, if any, did you have?
I had a CT (computerized tomography) scan, which was followed by an MRI in the Emergency Room. I was then hospitalized for a couple of days, during which time they did routine tests.
7. Were you in a coma? If so, how long?
I was not in a coma.
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?
After the acute bleeds in the spring of 2007, I underwent outpatient physical therapy to help me with my pathetic balance. After the two brain surgeries to remove the bleeders (the only known treatment for cavernous angiomas), I spent a week in inpatient rehab, at which time they worked on my balance, problems with my eyes [nystagmus (rapid, involuntary movements of the eye), double vision, and weakness of muscles in my left eye], and I had occupational therapy. At the end of that week, I suffered a seizure, which led to a third (emergency) brain surgery. I never underwent rehab after that, except for stuff I was doing at home (video games for the brain, exercise).
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
I have problems with balance, memory, attention span, sequential thinking, vocabulary access, and task initiation. I also suffer from vertigo, paranoia, debilitating fatigue (which exacerbates all the other symptoms), crippling headaches, sensory overload, seizures, anxiety, severe depression, and (occasional) suicidal ideation. There’s probably more, but I can’t remember right now. 🙂
10. How has your life changed? Is it better? Is it worse?
My life is harder, but much better.
I divorced my husband. My relationship with my daughter (13 at the time) suffered (although over the last couple of years, we’ve gotten closer), but my son (15 at the time) and I got closer. I am a professor at Carnegie Mellon University, and I went back to work full-time two years after the surgeries. I am a mathematician. Afraid to mess-up in the classroom, I stuck to teaching the lowest level classes we teach – calculus for the humanities students (which I came to love and now teach on a regular basis). But, several years later, I found that between fatigue and headaches, I had to cut back on my teaching load.
On the other hand, in addition to the losses I suffered, the “bloody brain” (as I refer to it) led to some wonderful gains. From a socially awkward mathematician, I became better able to connect with people and formed deeper bonds. I am much more outgoing. I now have a supportive and caring community around me. I became a much better teacher, and, whereas I liked teaching math in the past, now I am passionate about it. I also discovered a new passion – writing. To better understand my experience, I started writing an account, which later grew into a book (“But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury”) that I hope will reach as many people as possible to raise awareness of brain injury. From a journal writer, I became a published author of a book I am proud of. I figured out that I was a lesbian, a realization that filled a hole I hadn’t been aware existed.
I’m more aware and self-aware. I’m a more authentic version of myself, more me. I’m more comfortable in my own skin. I am a better person. I’m more empathetic – more willing to reach out to anyone who could use a shoulder or a hand. I’m a much better listener.
I feel that the gains far outweigh the losses. I wouldn’t want to repeat the experience, but I don’t regret it. It brought me to where I am now.
11. What do you miss the most from your pre-brain-injury life?
I miss my daughter’s uncomplicated love, though we are heading for a closeness. I miss being able to multitask and being more productive. I miss having no issues with sensory overload, seizures (though those are mostly under control now), and horrific headaches. I really and truly don’t miss them, though. I like my life now much better than my past life.
12. What do you enjoy most in your post-brain-injury life?
(See my answer to question 10.) I enjoy my environment, teaching, deeper connections with people, forming and reforming new connections, and writing. I also travel a lot (much more than I used to) – both inside the US and abroad – despite the fatigue it causes. I refuse to give in too much to the bloody brain. I want to LIVE.
13. What do you like least about your brain injury?
I don’t like my fears of repeat bleeds (from my remaining angiomas) and subsequent surgeries, anxiety, and depression.
14. Has anything helped you to accept your brain injury?
My life is fuller now – my relationships, my closest friends, i.e., our interactions no longer revolve around the bloody brain. My depression and seizures are pretty much under control.
15. Has your injury affected your home life and relationships and, if so, how?
Because of issues with fatigue, in many ways I live like a hermit. I very rarely have a friend over, and I rarely attend social occasions. I often have to hide in my bedroom to avoid sensory overload. As a result, my casual relationships are more virtual much of the time. My closer friends understand, and, if we do get together, we choose quieter settings. They know that, when fatigue strikes, I have to leave (or they have to leave). A couple of close friends are always there for me. My bonds with those friends are very strong – stronger than they were before. (See above for more details.)
16. Has your social life been altered or changed and, if so, how?
Though I have firmer connections with people, my social life is fairly minimal because of issues with fatigue. I have to pick and choose. However, I make more of an effort to accept invitations – mostly by past and current students. I have no interest in socializing with colleagues. Most don’t really understand my issues. And life is too short.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
A good friend, Joyce, is very important to me. She helps me clean, cook, and do laundry. She also provides better judgment – for example, insisting I rest when I’m falling off my feet or making sure I have everything when I travel. When I wasn’t allowed to drive, she acted as my chauffeur. When she goes away, I flounder after a month – I’m too tired to work and maintain a normal household.
18. What are your plans? What do you expect/hope to be doing ten years from now?
Even after the reduction in my teaching load, working is rough, though I enjoy it very much and love the challenge. In the distant future, I expect to spend time writing and (public) speaking about brain injury.
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.
- There is one issue that took me a few months to understand and a few years to effectively address it. Even now, I sometimes slip-up. I have trouble dealing with high volumes of incoming data, whether sensory, emotional, or cognitive.
When it comes to sensory input (noise, crowds, bright colors), I try to avoid difficult situations (parties, sports events). Also, if I find a focus, an anchor (which can be the voice or touch of a person I trust), I regain my faculties. Unfortunately, that’s not always possible.
Emotional stuff is tougher. My damaged filters have mended to a large degree. I manage, but ultimately, you feel what you feel.
Cognitive input (when reading and listening): I have learnt to chunk it down – for example, work to absorb one line at a time. This has been useful in my teaching. When students have trouble with word problems, I show them how to address each chunk separately, and only then do I ask them to connect the dots and fill in the gaps to solve the problem as a whole.
Until I learned how to manage overload, I often ended up having a meltdown.
- Another issue that I didn’t identify as a symptom of brain injury for the longest time was task initiation. Though the end-result is the same, task-initiation difficulties are very different from procrastination. They feel different. Before my neuropsychologist explained it to me, I assumed I was managing life inadequately.
I explain it as follows: When you’ve just finished a long and involved project, it feels impossible to start the next project. In the case of brain-injury-related task initiation, there is nothing obvious that seems to be the reason behind it. It can strike randomly, and it can last anywhere from days to years. But, once you get started on the task, life is good, and you’re off and running, as if there never was a problem.
- A sometimes-effective strategy is as follows: When you identify a problematic task, put it on a daily task list (which has no more than two items; otherwise you’ll become overwhelmed and freeze). Then block off time for each of the two tasks on your calendar.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
I found that neurosurgeons consider brain surgery a success, i.e., if you’re not dead or in a coma, life is good. Neurologists only seem to care about the physical symptoms (balance, vertigo, seizures, headaches).
Only neuropsychologists seem to care about the invisible side of your disability. I found my neuropsychologist very helpful. He labeled issues I didn’t understand (task initiation, sensory overload) and suggested coping mechanisms and compensation techniques – extremely useful information that improved my life, both practically and psychologically.
I did not have the opportunity to undergo rehab/therapy (physical, speech, etc.) after my third surgery. I did everything myself. I played brain-games on the computer, went for walks (later hikes), and exercised every day. I’m sure I would have healed faster and more effectively with professional help. I didn’t have the wherewithal to fight for it myself, nor did I have anyone to fight for me.
There is no full recovery from severe brain injury. There are always residual deficits that are exacerbated by fatigue. Pace yourselves carefully. Rest, rest, rest. But, don’t forget to live as fully as you can. Push yourselves as much as you can, but be aware of your limitations. Often it is a fine balance.
It’s an amazing journey of discovery and rediscovery.
Carpe diem within your limitations.
Life is good.
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