Survivors SPEAK OUT! … John May
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)
Boston, Massachusetts, USA firstname.lastname@example.org
3. When did you have your brain injury? At what age?
My brain injury occurred in 2007. I was 49.
4. How did your TBI occur?
This is a question that confuses me. My brain injury was not due to an accident, but to an infection.
5. When did you (or someone) first realize you had a problem?
I lived in Ft. Lauderdale at the time; I owned a house; I was a decorative painter; and I owned a tattoo shop. I, with the help of a partner (a world famous tattooist), did all the bookwork and the management of our employees. This was all possible due to my having ADHD (attention deficit hyperactivity disorder) because I needed only three or so hours of sleep a night. I got lost driving to the supermarket less than a mile from my home. That night, I went to sleep and never woke up.
6. What kind of emergency treatment, if any, did you have?
I was taken to the hospital in an ambulance. After a few days, my skull was opened. Most of my left temporal lobe and other areas on the left side of my brain had disintegrated. They cut out areas of my brain that were infected. My friends and family were told that probably I would never regain consciousness and that, if I did, I would never walk or talk again.
7. Were you in a coma? If so, how long?
Yes. My coma was for a few months. I was kept alive only because my family and my friends were fighting a legal battle over who had the authority to make the decision to end life-support. One court had given my family the authority to disconnect me, but my friends appealed this ruling because my business stated that I had given them the authority to make that decision, until there was a second option. While they waited for a new court date, I woke up with no past memory and with the intelligence of a three-year-old.
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?
Once out of my coma, I drove the hospital crazy due to my constant curiosity and the fact that I laughed at everything. I was put into a rehab hospital for about nine months. There I was taught the basics of life. I’m proud that, although I didn’t even know how to shave or brush my teeth, I never dirtied my diaper.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
My mostly always being happy was thought to be a symptom of brain damage, but it was eventually discovered that I’d been that way since birth. It was as though I was mentally challenged as a baby because I never cried.
10. How has your life changed? Is it better? Is it worse?
The struggle over me and my property went on. At the same time, the value of my real estate crumbled with the recession. I’m lucky enough not to remember my life before my injury. I have no clue as to what I owned, but it was battled away. I no longer speak with my family. They sucked me dry of my money and then put me into a homeless shelter. I have learned much in only seven or eight years. It’s not clear whether I have relearned things or whether I have simply remembered what I know now. As long as I have a hat on to cover the huge dent in my head, people wouldn’t know I had brain injury.
11. What do you miss the most from your pre-brain-injury life?
I don’t know my pre-brain-injury life.
12. What do you enjoy most in your post-brain-injury life?
I enjoy knowing I have people in my life like Ali.
13. What do you like least about your brain injury?
I wouldn’t know.
14. Has your injury affected your home life and relationships and, if so, how?
My true friends stuck by my side, but I kept a distance for a time while I relearned the basics of life. I now live in Boston and have a group of friends that never knew the old John May.
15. Has your social life been altered or changed and, if so, how?
I don’t have many people to interact with. As such, I spend a lot of my time alone.
16. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I am proud to state that I am my main caregiver.
17. What are your future plans? What do you expect/hope to be doing ten years from now?
One effect of my brain injury is that I have no conception of time. I might think that it is the 4th of July one minute and Christmas, the next.
18. 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 brain-injury survivors with your specific kind of brain injury.
I read all the brain injury sites and communicate with some.
19. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Don’t get angry with those who love you. They are having a hard time understanding brain injury. They need as much help as we do!
Thank you, John, 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.)
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.
(Photos compliments of John.)