Survivors SPEAK OUT! Ventura Manzanares
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 firstname.lastname@example.org
3. On what date did you have your brain injury? At what age?
I was poisoned by carbon monoxide between the ages of 4 and 9. The poisoning was from low-level dosages over time (five winters in Colorado). The rest of the year, I often played in the basement – near the pile of coal. Coal dust has arsenic. Furthermore, the heat pipes were wrapped in asbestos paper. I remember that, when the furnace was hot, little silver specks would pop off into the air. So, I got a triple whammy – carbon monoxide gas, arsenic dust, and asbestos dust.
4. How did your brain injury occur?
When I was one month old, I was abandoned by my parents. I was raised by my step-grandmother. I was sometimes beaten and sent to the basement to shovel coal to warm the house.
5. When did you (or someone) first realize you had a problem?
All through school, I remember being on-edge, fighting, and having rage blackouts. My brain would “spin.” (When you drive down the road and look at the wheels of the car next to you, every once in awhile, you get a glimpse of the hubcap. That was how my brain functioned.) I didn’t know at the time that I had brain injury. After many years, I just ignored it and tried to fake it until it passed. My brain injury wasn’t diagnosed until 2010 – during a check-up when I was living in a homeless shelter in San Francisco. Then I found the carbonmonoxidesurvivor.com website.
6. What kind of emergency treatment, if any, did you have?
I was never treated until 2011, fifty-nine years after I was poisoned. I was given an experimental drug – Depakote (a mood stabilizer) – for one year. It worked immediately and had a lasting effect. I still feel good to this day.
7. Were you in a coma? If so, how long?
No, but at times I did fall asleep. I remember waking up on the dirt in the basement. I also had the most painful headaches – cluster headaches on the right side of my head. My headache would last for days and take days to go away. (Cluster headaches last for periods of time. They are among the most painful types of headache known. Typically, they occur on one side of the head.). The headaches lasted from my teens into my mid-30s. I lost my life – my wife and daughter and also jobs – from those days.
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 have gone to a psychologist for most of my adult life, but the carbon monoxide poisoning was never addressed. My therapy now is EMDR (Eye Movement Desensitization Reprocessing) as well as binaural beats (non-musical sounds that can get your brain into a variety of desired states) and Hemi-Sync (an audio-guidance process that results in the left and right hemispheres working together) brain entertainment programs that I have installed on my smartphone. I can use them anytime I need throughout the day.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
Tinnitus is a major issue in both ears – the ringing in each ear having a different frequency and volume. I suffer from throbbing and a sudden high-pitched ring that makes me deaf. I have to create a vacuum with my hands and pump out my ears to make it stop. I also experience nausea, dry heaves and a bubbling belly, and diarrhea – sometimes daily and several times a day. I get a feeling like I have an attached entity – like a heavy darkness – on the top of my head and on my face, throat, and chest. All these come in waves and last hours to days. I had always felt overwhelmed and stressed out. I could never keep a job for very long. Violence in my relationships and at work was my way of life.
10.How has your life changed? Is it better? Is it worse?
As I’ve gotten older, I have eliminated as much stress as possible. But, my family (three ex-wives and two daughters) all hate me. In the 90s, I was a lot worse. I would wake up sick for hours at a time. It is not as bad now after the Depakote treatment.
11. What do you miss the most from your pre-brain-injury life?
I missed out on everything. I don’t have many good memories of my childhood. I don’t remember Christmases, my birthdays, or Thanksgivings. School was a blur of time. I do remember getting beat up by bullies. My second marriage was horrible. I was out of control and violent. I was stressed to the maximum of my mind.
12. What do you enjoy most in your post-brain-injury life?
I like that I have gotten smarter and more calmed-down. I want to live now. Before, I just wanted to be dead. I’m happy for the first time in my life.
13. What do you like least about your brain injury?
I dislike the tinnitus for sure. I get really tired of the throbbing and hearing the ringing. It wears me down. I also don’t like the nausea and the dry heaves, which have me gagging all the time.
14. Has anything helped you to accept your brain injury?
Yes. It has helped to know what caused it – carbon monoxide gas. I’ve also been helped by the carbonmonoxidesurvivor.com website. I thought I was insane, and so did everyone else. I finally have a reason why I have had so many problems all my life. I was a bad person with a bad brain. But, I knew I was a good person. I just didn’t know how to do life, until now.
15. Has your injury affected your home life and relationships and, if so, how?
Yes. Everybody hates me. They won’t accept the truth about carbon monoxide poisoning. My family life is destroyed. I haven’t seen my youngest daughter for sixteen years.
16. Has your social life been altered or changed and, if so, how?
I had no social life before because I was overwhelmed. I was like a leaf in the breeze – drifting and lost. Now I feel like getting out more. Also, I have met many wonderful, supportive people in the TBI (traumatic brain injury) networks on Facebook.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I have myself as a caregiver. I was employed as such when I was going to massage school in the early 90s. I did massage for twenty years. It gave some balance to my spinning brain.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I am in the process of writing a book about my life with TBI. I hope to enjoy my retirement and my pathetic social security money. Maybe I’ll be living on a friend’s ranch and be at peace.
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.
Seek help immediately – no matter how little something may seem. Don’t take the “You’ll get over it” answer from anyone. You know what you need. Go get the answers, and save yourself.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Be gentle with yourself. Surround yourself with gentle, supportive people. It’s okay to do it alone sometimes. In not talking and dealing with others, we can hear ourselves. Go with your cravings – eat when you’re hungry and rest when you’re tired. Sometimes your body knows better than your mind.
(Disclaimer: The views or opinions in this post are solely that of the interviewee.)
If you would like to be a part of the SPEAK OUT! project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.
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(Photos compliments of contributor.)
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