TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Traumatic Brain Injury Stories’

TBI Tales: SPEAK OUT! . . . . . . . . . . . Mansion Dancing Under the Stars

mansion-at-westport

 

David and I met on the dance floor when I was 16 years old. He was 17. We fell in love under a strobe light. Through our married years, we danced at weddings and at parties, but when David’s Traumatic Brain Injury left his body as limp as Raggedy Andy, I never dreamed that David and I would ever dance again. But, during a recent trip to Westport, Massachusetts, to spend time with our son, Jared, his fiancé, Emily, and her family, we found ourselves staying in a mansion … only feet from the Atlantic Ocean. Our host, dancers-thSusan, was beyond gracious, concerned about our every comfort. On our second night there, she threw a big family party on her extensive patio and even more expansive grounds overlooking the ocean; and she invited us. We stopped in about midnight.

 

The partygoers were huddled around the fire-ring … music still blaring. Jared and Emily began to dance on the patio. I swayed. David sat in a tall patio chair. Then the unthinkable happened. David asked me to dance. I hadn’t expected that! David can barely walk – dancing had not been on his radar for more than seven years. I looked at him expectantly. Was he kidding, being facetious? ballroom_dancing_stars_swinging_lg_clrNo! With a huge grin, I answered, “Yes!”

 

We didn’t Cha-Cha or Swing, as we had learned in our Ballroom Dance classes. We didn’t attempt the Fox Trot, or even the Waltz, though Paula, our dance instructor after David had his TBI (another story), would have been proud of us if we had. But, we did our own dance. We swayed back and forth – never moving our feet. We call it the “TBI Sway.” We swayed with my head resting against David’s shoulder and his hand gently placed at the small of my back. We swayed with David holding on to me for dear life … for balance. We danced under the stars to an old favorite, “Unchained Melody” by The Righteous Brothers, with the sounds of ocean waves lapping the shore, with smiles on our lips, and remembrances of days gone by … and the promise of our days ahead.

dance under stars

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(Clip Art compliments of Bing.)

(Photos compliments of ME.)

If you have a story to tell, please contact me at donnaodonnellfigurski@gmail.com

Survivors SPEAK OUT! – Lauren

SPEAK OUT! – Lauren

by

Donna O’Donnell Figurski

Lauren - about 4 days post TBI surgery

Lauren – about 4 days post TBI surgery

1. What is your name? (last name optional)

Lauren

2. Where do you live? (city and/or state and/or country) Email address? (optional)

Belfast, Northern Ireland

3. When did you have your TBI? At what age?

September 2012. I was 35

4. How did your TBI occur?

Playing roller derby

5. When did you (or someone) first realize you had a problem?

It was very sudden, I felt something wasn’t right in my head, then my vision went and I collapsed.

6. What kind of emergency treatment, if any, did you have? (e.g., surgery, tracheotomy, G-peg)

Ambulance to Accident and Emergency.
A CT scan, then a craniotomy

7. Were you in a coma? If so, how long?

4 days. It was medically induced because I kept wanting to wake up!

8. Did you do rehab? What kind of rehab (i.e., In-patient and/or Out-patient; Occupational, Physical, Speech, and/or Other)? How long were you in rehab?

No rehab to speak of, Out-patient appointments with Neuro every few months. I’m now discharged.

9. What problems or disabilities, if any, resulted from your TBI? (e.g., balance, perception, personality, etc.)

Initially I had palsy of the left eye. Most of my problems have been psychological. I also had fatigue for a long time. (It’s still here but not as strong.)

10. How has your life changed? Is it better? Is it worse?

How do you put this into words? My life has changed in many ways, I was very independent. Now I rely on my partner a lot, mainly due to anxiety and depression.

There are things that are better – the ability to let small things slide is easy. I have an appreciation of life. I know what I DONT want anymore. My BS detector is much improved.

The bad – feeling scared for no reason. Crying a lot

11. What do you miss the most from your pre-TBI life?

My independence

12. What do you enjoy most in your post-TBI life?

The slower pace; the ability to filter stressful people

13. What do you like least about your TBI?

Anxiety anxiety anxiety

14. Has anything helped you to accept your TBI?

Time, patience, writing, lots of reading and meeting other survivors

15. Has your injury affected your home life and relationships and, if so, how?

It has made us a lot closer. It’s not an easy ride. It can get rough, but we’ve learnt to communicate in a much more meaningful and honest way.

16. Has your social life been altered or changed and, if so, how?

Yes, I’ve become more isolated. My social circle reduced a lot post-injury. That hurt at first, but I’ve accepted it now. More contact with others would be nice though.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My partner, he’s great. He’s put up with so much. I have an idea of what he’s been through, but I’ll never truly understand how it feels. It is difficult and tiring.

18. What are your future plans? What do you expect/hope to be doing 10 years from now?

I hope to study again. I want to complete a Psychology or counselling course so I can help others. I want to be out in the world again, and most of all I hope to have my joy back.

19. What advice would you offer to other TBI survivors?

It’s hard but it will pass
What you feel is normal
Be kind to yourself, and you will also need plenty of patience!

20. Do you have any other comments that you would like to add?

Good luck to all TBI/ABI survivors. Remember you are never alone.

Lauren celebrating her birthday about 16 months post-TBI

Lauren celebrating her birthday about 16 months post-TBI

 

Thank you, Lauren, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

 

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.

(Photos compliments of Lauren.)

Survivors SPEAK OUT! David Figurski

SPEAK OUT! – David Figurski

by

david-running-in-hall

David about 3 weeks before his TBI – in brand new running outfit. David ran about 20 miles per week.

Donna O’Donnell Figurski

1.    What is your name? (last name optional)

David Figurski

2.    Where do you live? (city and/or state) Email (optional)

Arizona           dhfdmf@aol.com

3. When did you have your TBI? At what age?

January 13, 2005           Age 57

4. How did your TBI occur?

It was induced by my doing chin-ups.

5. When did you (or someone) first realize you had a problem?

I realized I had a problem when my vision deteriorated after doing chin- ups.  I knew I had a serious problem a couple of minutes later when I was talking to my wife.  I felt fluid filling my skull, and there was a lot of pain in my face.

6. What kind of emergency treatment, if any, did you have?
(e.g., surgery, tracheotomy, G-peg)

Ambulance from a 9-1-1 call.
Three surgeries
1. to evacuate the blood
2. to remove an aneurysm that was discovered in the first surgery
3. to remove an AVM (Arterial Venous Malformation) that was discovered in the second surgery.
Tracheotomy
G-Peg

7. Were you in a coma? If so, how long?

Yes, a little more than two weeks.

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?

In-Patient rehab for almost two months (phys., occup., speech)
Out-Patient rehab for almost sixteen months (phys., occup., speech)
Private physical therapy 2 hours/week for seven years

9. What problems or disabilities, if any, resulted from your TBI?
(e.g., balance, perception, personality, etc.)

Balance (can hobble indoors, but cannot walk outdoors unassisted)
Double vision (one image is tilted relative to the other)
Difficulty swallowing
Partly paralyzed tongue
Ataxic right arm/hand
Left arm/hand is not ataxic, but it’s not as good as it was pre-TBI
Less feeling in my right leg
Paralysis of the right side of my face

10. How has your life changed? Is it better? Is it worse?

Better –  life is slower
more time to spend with people
Worse – loss of independence
loss of mobility
unable to do things that I once did

11. What do you miss the most from your pre-TBI life?

Walking, running, driving, writing, reading, drawing

12. What do you enjoy most in your post-TBI life?

My computer, movies at home courtesy of Netflix, audiobooks

13. What do you like least about your TBI?

Because of paralysis of my mouth, I bite my lip or tongue many times each meal.

14. Has anything helped you to accept your TBI?

The positive attitude of my wife and all my doctors and therapists

15. Has your injury affected your home life and relationships and, if so, how?

My wife and I have always had a close relationship, but now I have more time to spend with her.

16. Has your social life been altered or changed and, if so, how?

Yes.  Though my wife and I go out less, we socialize a lot more at home.  I have more time now, so I have more friends.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My wife is my main caregiver.  She is also my cheerleader.  Yes, I know how much my wife has sacrificed to do what she does for me.

18. What are your future plans? What do you expect/hope to be doing ten years from now?

I plan to be able to walk outside unassisted.  My dream is to walk a 5K race in less than an hour.

19. What advice would you offer to other TBI survivors?

Have a positive attitude.
Be aware of the love of other people.
Do what you can.
Be patient with yourself.

20. Do you have any other comments that you would like to add?

You will probably never be able to do all that you once did, but life can be satisfying

David - 9 years and 3 months after his TBI

David – 9 years and 3 months after his TBI

 

Thank you, David, 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 this project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Photos compliments of ME.)

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