SPEAK OUT! – Cezar Cehan
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)
Denver, Colorado, USA
3. When did you have your TBI? At what age?
4. How did your TBI occur?
My TBI wasn’t really an “injury.” I discovered a (benign) tumor (acoustic neuroma) inside my skull, due to some “weird” sensations, balance issues, vision disturbances, etc. But they weren’t so serious, and I opted for a radiation-type of intervention (Gamma Knife). However, the tumor was already large (3.5 cm), so the radiation did not stop the growth. When it got to almost 4 cm, I had to ask for a surgical intervention. That surgical intervention was the actual “injury.” I’ve been told that the surgery lasted more than 10 hours.
5. When did you (or someone) first realize you had a problem?
I first knew I had a problem in 2004, due to some (minor, but repeated) issues with balance, walking, and vision – especially when I was tired. (Since I had quite a demanding occupation at that time, the tiredness was almost continuous.)
6. What kind of emergency treatment, if any, did you have (e.g., surgery,
I had Gamma Knife. (They literally screw a metal frame into the skull, but it’s not as bad as it sounds.) I also had brain surgery to remove the tumor.
7. Were you in a coma? If so, how long?
8. Did you do rehab? What kind of rehab (i.e., In-patient or Out-patient and Occupational, Physical, Speech, Other)? How long were you in rehab?
Yes. I did both – In-patient and Out-patient. They kept me in the hospital for an entire month. (I actually had three brain interventions, besides the tumor removal itself. They also had to insert a shunt – a tube to help me with the hydrocephalus that developed.) Other patients left the hospital after a week. They also told me that I would not be able to walk all that much, given the state of my body. (I had taken steroids and stayed in bed without moving for about one year, so my muscles were pretty weak.) I’d been given a wheelchair and a walker (just in case I wanted to “be brave” and walk on my own). I had some great physical therapists – with huge hearts, who encouraged and challenged me to become a “walking” human being again. Fortunately enough, I didn’t have any mental impairments (at least from my perspective ☺). Also my speech was only a little bit affected, and I am actively working on that. (In the past, I studied Bel Canto, i.e., voice training.) After the “official” physical therapy ended, I continued at home on my own (since there wasn’t much I could do all day anyway!). However – being human – once I reached a level where I could function again independently, I slowed down my practice. That means that I would probably walk better (or even be able to run) and I would have improved my balance if I had continued the exercises with the same determination that I put in when I could not walk at all.
9. What problems or disabilities, if any, resulted from your TBI (e.g., balance, perception, personality, etc.)?
Balance is an issue that I have. Fatigue also. As for personality, I would say that the change was two-fold. On one hand, I tend (sometimes) to feel embarrassed and intimidated when I have balance issues in public. My self-esteem seems to want to be lower, and I want to apologize. On the other hand, all this happening is, for me, a “rebirth,” if you wish, a “second chance.” I feel now that it is “my duty” to “be the best that I can be,” to live by my values, to go for what I feel that my purpose is. I appreciate more “what is.” I choose to be present and expanded, since I’ve been given this “second chance” to experience consciousness with which to create my reality. I feel that it’s my duty now to create it – to the best of my potential – by expanding my understanding of the world. Whining, feeling self-pity, or focusing on shortcomings – these are not options that I entertain. They would be of no help anyhow.
10. How has your life changed? Is it better? Is it worse?
Both. I could call “worse” the fact that I have less energy (so I need to take naps during the day) and I get tired easier. Also my balance is “funny.” (Sometimes I carry a walking stick – which I also find “trendy.”) Perhaps my patience with other people’s melodrama and self-imposed limitations is shorter (but I’m already better with that). I could call “better” the fact that I feel that I am now “allowed” to focus on my values, on my purpose (the way I feel it). I feel more connected with “what is.” Considering that I have already been “on the other side of the fence,” fear is just a word for me now. (For most situations, of course, I am still human.) Even the fact that I am not able to do now the previous (money-making) activity that I used to do, it’s probably a good thing, after all. This “limitation” has the gift to guide me into doing what I really love to do – assisting people to let go of the limitations of their own minds and to become extraordinary in what they are.
11. What do you miss the most from your pre-TBI life?
That’s an interesting question – because it made me think. I didn’t think of this before.
Why would I even think of “what’s missing”? I choose to focus on “what I CAN do,” on “becoming.”
12. What do you enjoy most in your post-TBI life?
Somehow, in a weird way, I feel freer – of the cultural conditionings and of the “you have to do this because that’s nice and people would like you.” I am able to think in terms of the values that I have, instead of needing other people’s approval for what I do. I feel that I am “allowed” to be more creative. (Note: It’s not that somebody stopped me from being creative and living by my values before the TBI. But, weirdly enough, suffering frees people of their ego’s limiting stories that they “should do this” or that they “could never do that”!)
13. What do you like least about your TBI?
Again, a tricky question. One rule of my life is to only do things that would help me. Somehow, I fail to see how focusing on what I “don’t like” would be of any help – for me or for anyone else reading this ☺.
14. Has anything helped you to accept your TBI?
Meditation, acceptance, and NLP (neuro-linguistic programming). Also continuous reading, studying, learning, and maintaining a live curiosity about life. Never surrender on despair. I accepted the possibility of death. I mentioned that I was immobilized in bed for almost one year. All that time, I never stopped reading, learning, or, when my eyes would hurt, listening to books or audio programs.
15. Has your injury affected your home life and relationships and, if so, how?
Yes, it did, unfortunately. My income dropped dramatically. Also, this situation put my new wife through tremendously challenging emotional turmoil. For her, besides the pressure of having moved to a new country, living in a different culture, and not knowing the language well, was my health condition. No wonder she was scared, stressed out, and pressured. She took good care of me, but her emotional state was affected. I can see why. I’m also sure that (at least at times) I wasn’t the most pleasant sick person that one could meet ☺. So, all in all, our relationship suffered.
16. Has your social life been altered or changed and, if so, how?
I hear with only one ear now. So, loud environments make me really uneasy. I cannot hear properly what people say. Since my balance is “shaky,” I have to pay attention to the surfaces that I walk on. Uneven surfaces are not fun ☺.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
If by “caregiver” you mean someone who “takes care of me,” I don’t have one. I am alright on my own now.
18. What are your future plans? What do you expect/hope to be doing ten years from now?
I plan to get better and better at the things that I can improve – like my balance, my muscles, and speaking. Other than that, I plan to learn to live perfectly well with what I have and to be an inspiration for people who tend to let themselves down and surrender to the stories of their ego. I plan to learn from everything and everybody around me and to become the best that I can be (that is, there is no need to compare myself with others’ possibilities).
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 TBI survivors with your specific kind of TBI.
To be able to reach a destination, you need to know where you are now – and to accept that. If I want to go to Los Angeles, and it so happens that I am in New York, it makes no sense to start complaining and feeling bad about the fact that I AM in New York. It is only after I accept that fact that I am able to design a trip and to start going on that trip – towards Los Angeles. Similarly, I had a tumor. This was a fact. (Of course, I had my episodes of tears and “why me?!”) It took me a while until I took that fact as “what is.” But once I did it (experientially, not only logically or intellectually), a lot of things became clearer to me. This did not mean that I “surrendered.” Not at all – acceptance is not surrender! But I was able to “design” a path – a “trip” – in a detached manner, rather than in an emotional one (which never leads to good results – you know that!).
So, the lesson, the understanding, that I gained is this:
– if you feel and look THROUGH the life-situation you find yourself in, you’ll only create more of that.
– if you don’t want to create that, the trick is to accept that life-situation (that it does exist) and look AT it, as an observer, as a scientist of your life (that you are, actually, because you’re much more than the body you see in the mirror).
20. What advice would you offer to other TBI survivors? Do you have any other comments that you would like to add?
Besides the “lesson” above, consider this: all your life, you have experienced all sorts of emotions, sensations, situations, etc. You’ve been happy, sad, healthy, ill, energetic, and exhausted. You’ve experienced love and being out of love, etc. Beyond all that, is there a part of you that is constant among all of those things? Consider for a moment – what is constant all the way? Is it your emotions? Perhaps not. Is your energy level? Perhaps not, also. What is it for you? Get in touch with that. You may discover who you really are.
Thank you, Cezar, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
(Photos compliments of Cezar.)
If you would like to be a part of this project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.