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True bliss is living life at ease. This site is for all survivors of any type throughout all the world. |
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Below is my current online Survey Questionnaire. Now that I have finished my Poem Book, I am dedicating my questionnaire to the topics of recreation, leisure and hobbies. Please give me your feedback on the following questions. I will greatly appreciate your contribution. If you give me permission, I would like to post some of your answers on this site. Thank you!
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RESPONSES RECEIVED SO FAR...
Please feel free to email the individuals who have responded by clicking on their names below (if they have provided their email link, they welcome direct communication).
1.) What are some of the things in your life that make you feel stressed or under pressure?
Amy:
Knowing that there are somethings that I can not recall. Forgetting to do everyday things which I have done for years. Learning new computer programs that I should know how to use.
CR:
I FEEL STRESSED OUT WHEN PEOPLE PRESSURE ME INTO DOING THINGS LIKE SPECIAL OLYMPICS AND OTHER THINGS I FEEL LIKE A BIG TON OF BRICKS SOMETIMES.
Celeste:
The severe chronic pain that resulted from my TBI (Traumatic Brain Injury), my Mother who is aging and who is dependent on me for many of her needs, lack of money/resources, poor medical care.
GL:
Not being able to pass test so I can start my new career.
Martha:
coming to terms with this and accepting the reality of it all sometimes.
Robert:
not having enough money, not being able to work, trying to get Disability(twice), mental fatigue, hot weather, worrying about my kids, driving a 22 year old car, too much mental stimulation (music, light, television, etc.)
Vicki:
Having TBI & not being able to live my life like I was before the accident!
2.) Are you often nervous or uncomfortable due to life's pressures and things we must do in life (ie: paying bills, doing laundry, making dinner)?
Amy:
No just frustated because I'm not able to due them like I did before the accident.
CR:
YES I DO FEEL NERVOUS WHEN I GO TO THE DENTIST OR THE DOCTOR'S OR EVEN SINGING IN CHOIR.
Celeste:
I like to think that now that I am 7 years past my injury that the things that make me uncomfortable are quite similar to the things that make most people my age (42)uncomfortable or nervous. I find that I am more uncomfortable than I used to be with things I have no control over - the worst ones are things I think I should have control over, such as my pain and my ability to function normally. Daily tasks rarely freak me out, but in the first several years after my injury, daily tasks always had that effect on me because I was still trying to require basic living skills, so I over thought everything.
GL:
I never pay the bills any more because I forget.
Martha:
Every day things are now routine;however it's looking outside and not feeling like I belong anymore, that the world is just passing by.
Robert:
I get nervous about the "what if's" in life. What if my car quits running? What if I can't buy school clothes or Christmas gifts? I think you get the idea.I manage to keep the house clean because I have the luxury of time.Since I can't work,I don't do all the housework in one day.I do a little over a period of days.Grocery shopping can be demanding because of the lights(flourescent),the amount of products and colors,trying to figure out what the best buy is,a store that is too busy.
Vicki:
UNCONFORTBLE TOTALLY! not being able to do what others do every day.
3.) Do you consider yourself a creative person? What are some ways you express this creativity?
Amy:
Somedays. Ceramics, cross stiching, and my computer.
CR:
YES I DO, I DO SCRAPBOOKING I MAKE JOURNALS I CUT OUT OF OLD MAGAZINES AND THINGS LIKE THAT. I DO ALOT OF DRAWING AND WRITTING AS WELL
Celeste:
I consider myself creative in limited ways. In my early life (age 10 to 28) I was a performer (dance, acting). At this time my creative instincts apply more to daily living and recovery. Because I ended up with severe chronic pain following my injury and I have several medical conditions that prevent me from absorbing medication properly, my creativity has been applied towards making life more tolerable for me.
GL:
No I used to be .
Martha:
Playing the piano, the guitar. This computer keeps me going with or rather I should say the friends met because of this computer have kept me going.
Robert:
I like to write poems, but I have to be in the mood and my (mental)energy level is always best in the morning,then dwindles as the day goes on.
Vicki:
Creavtive? I use to be when I was able to use both hands. I can still use my right hand but not good like before.
4.) What are three things you enjoy ? How often do you get to do them?
Amy:
Ceramics every Tuesday. Try to excerise. try for 2 to 3 time a week
CR:
1. TROT; 2. CURVES; 3. CHOIR; I DO THEM ALL THE TIME AND I LOVE THEM ALL
Celeste:
1 - Reading (everyday); 2 - Hiking (as much as possible - unfortunately not much); 3 - Writing (everyday)
GL:
I like to work out in the gym, but never go any more. I like to paint never do it any more. I like walking never do it either .
Martha:
watching my tapes, being with friends, having something to do with music. fairly often.
Robert:
I enjoy that moment at the end of the day when I pull back the sheets on my bed, turn out the light and go to bed.
Vicki:
Wach my boys grow up - everyday CHRIS 17, JESSE 14 (TODAY) Wake up everymorning love seeing my family happy That I am still ALIVE!
5.) Do you belong to any groups or teams to take part in your recreation or leisure activity? If yes, please describe.
Amy:
No not really just my ceramic class
CR:
YES, I DO I'M ON A FRIDAY BOWLING LEAGUE I REALLY ENJOY THAT A WHOLE LOT
Celeste:
For the first few years of my recovery, I did belong to a brain injury support group, which helped me learn to communicate better. In terms of leisure or recreation, my hiking is mostly solitary.
GL:
No
Martha:
No.
Robert:
I have been a Little League baseball coach for the last 4 seasons,but I'm finding that each new season seems to be harder on me.
Vicki:
NO, BUT I would LIKE TOO.
6.) What would you like to see offered for those who lack pleasure or enjoyment in life?
Amy:
Frindship because I know that some people cann't handle the change that TBI people have to go through.
CR:
JUST TO ENJOY LIFE AND BE THEMSELVES AND BE GOOD TO THEMSELVES AND BE A BIG PRART OF LIFE.
Celeste:
If were talking about the brain injured community, then I would like to see better access to activities, especially outdoor activities. Other activities would include intellectual and creative pursuits. This should be offered at the inpatient level in order to get them started in a safe environment.
GL:
To have a half a cup of hope in life.
Martha:
The right to do what they want with their lives.
Robert:
I'm 45 years old and have a 13 year old daughter and an 11 year old son that I've been raising on my own for the last 10 years. I live on Welfare,so I'm at the bottom of the monetary list. I'm lonely and feel trapped because I'm embarrassed of my car and couldn't even take a woman on a date.
Vicki:
Just knowing they can / should love God. They wouldn't be here other wise.
COMMENTS TO PONDER
This feeling of guilt is overwhelming; it is all encompassing; "It is not your fault"; this is what I try to convey to my friends as well as myself. This Traumatic Brain Injury did not make us rotten, undeserving people.
This line spoken by Robin Williams, in the movie "Good Will Hunting", makes it all real. In the movie Williams is a Psychologist for Will Hunting (a troubled young man in a borough of South Boston) and in one of their sessions, Williams repeatedly tells Will that it is not his fault he is troubled and delinquent. His circumstances had robbed him of part of his life. This amuses Will at first, but after Williams' persistently repeats "it is not your fault", Will breaks down and loses his composure, crying and relinquishing his tough boy persona.
Back to real life. It is my opinion, and experience, that many TBI survivors, including myself, feel that we are not deserving of goodness in our lives. This does not mean that we do not ever feel good about ourselves or that we are not good people. Internally, I know I almost always do the right thing, and am constantly focusing on how to better myself and the world around me. It is only that there is something that holds us back from letting go; feeling that I do deserve to enjoy my life. Instead, many survivors make excuses to deny themselves of enjoyment or pleasure. A chance of feeling good or giving oneself a pat on the back.
I believe this could be out of guilt from our injuries or circumstances. We look at our lives and feel there is something wrong with us. We are shell shocked from what society has beat into our heads (that something is wrong with us, and that we are less than others). We might not look like, talk like, or even think like the general population; but it's not our faults. We remember our pre-injury lives and have trouble accepting the new us.
Like Will in "Good Will Hunting," we are scared, and need to let go of our burdens and live life with pleasure in our hearts. Accepting this new self means letting go of the old self. And admitting we are now different. Different, but not necessarily bad.
In fact, my pre-injury life was a great one; filled with many valuable interactions and fulfilling experiences. I often play out in my mind situations that made me feel good. I can actually remember plays from my football career on the Valley Cottage Indians; or how I walked down the hall back in High School. The memories from my youth are still fresh in my mind and indelible. I do have a good mind despite the gaps caused by my head trauma; and life remains grey, lacking flexibility, and thinking that is a higher level. I am a good person, and do deserve to enjoy my life.
Please feel free to submit your responses to my survey above if you think what I wrote applies to you, or if it doesn't, and let me know why or why not.
Thank you,
Dan
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Dan Windheim
739 Sierra Vista Ln.
Valley Cottage, NY 10989
(845) 786-3871
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