Survivors SPEAK OUT! Jennifer Stokley
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)
Kutztown, Pennsylvania, USA
3. On what date did you have your brain injury? At what age?
May 10, 2007, was the day of my traumatic brain injury (TBI). I was 42.
4. How did your brain injury occur?
I fell out of a second story window of my home to the sidewalk below. I did what I now call my “Amazing, Exotic Jeni Bounce.” I was home alone. Please don’t ask me how the fall occurred. I have no clue, other than I know that back then I was a hard-core alcoholic. My TBI cured me of that completely! No withdrawal. I just never desired alcohol again. Odd, but wonderful!
5. When did you (or someone) first realize you had a problem?
My ex found me on the sidewalk. He thought I had fallen outside (no external injuries, strange). I used to have a seizure disorder back then, so my ex and some friends carried me inside, up the stairs, and put me on the bed. Then I started to have trouble breathing. My ex immediately called 9-1-1. The paramedics arrived, took me back downstairs, across the street at night, and worked on me under a streetlight in a public park. They understood something was terribly wrong then.
The thing I find funny about the whole thing, though, is that the emergency folks cut my clothes off right then and there – for the whole city block to see me naked – under lights! I showed my butt to the city! (LOL) Thank goodness I don’t live there anymore.
6. What kind of emergency treatment, if any, did you have?
I had two cardiac arrests during the life-flight to the hospital. I had ruptured my bladder (which they had to stitch back together like a patchwork blanket). I punctured my lung, due to one of my five broken ribs. I had broken my pelvis in three places. I also had broken my neck.
The only things I remember for sure are a breathing tube down my throat, the surgery on my belly to put my bladder back together, and the two times they restarted my heart. The rest is unknown to me. I haven’t asked; they haven’t told. That is my past. I survived. I do not wish to relive the past while I’m so busy living my present and focusing on my future.
7. Were you in a coma? If so, how long?
I was in a full coma for three weeks. My coma was a 3 on the Glasgow Scale. It’s the lowest score before death. (A score of 3 indicates a severe brain injury.) After all my surgeries and the use of all the professional skills to save my life, the surgeon actually came out to my Momma and said, “We’ve done all that we can. Now it’s in God’s hands.” It literally was. One day prior to their disconnecting my life-support, I took my first breath on my own! They were able to take me off of life-support, knowing I was going to survive. To what extent, they still had no clue, but at least I was no longer in a coma on life-support.
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)?
First, I went to inpatient therapy from the Intensive Care Unit for two and a half months. I was taken to a rehab room (by wheelchair with my “fun-catheter” along for the ride) to exercise a bit and then attempt to stand. (They said my standing would never really happen because of my broken neck, but I showed them. I stand just fine now, and when I leave the house, I walk with only a cane.) Later, when I was discharged, I was in outpatient therapy for … I don’t know how long. There, I did physical therapy, speech therapy, and cognitive therapy. (Speech therapy was a hoot. The therapist would hand me things to read out loud. The problem was I couldn’t see! I’m legally blind now. “Come on. Read the medical records already.” LOL Cognitive therapy was just as much fun – pegs in holes I was unable to see. LOL That didn’t last too long.)
How long were you in rehab?
Inpatient, two and a half months; outpatient, more than six months, I think
9. What problems or disabilities, if any, resulted from your brain injury
(e.g., balance, perception, personality, etc.)?
I have a severe anxiety disorder, cerebellar ataxia, aphasia (not much now, but it used to be severe), bladder/bowel control issues, and taste bud issues. I’m legally blind. Memory issues are HUGE. My ability to smell has been affected. I have issues with concentration and making decisions. My personality did a 180 on me, and for that, I am actually grateful. I was not a very nice person prior to my TBI.
10. How has your life changed? Is it better? Is it worse?
My life is harder than it was prior, but it is also so much better than it’s ever been. I will gladly take the difficulties to have such a wonderful life. I had no difficulties prior, and I had such a horrible life. Go figure. I gladly take the trade I’ve been handed.
11. What do you miss the most from your pre-brain-injury life?
I miss the memories. I lost 42 years of my life. All my memories are gone – my childhood, my college, my graduation, everything – poof, gone in a second. When I woke from my coma, I was a stranger even to myself. I was literally reborn. I was no longer “Jennifer.” I was “Jeni,” a child. I didn’t know anyone or anything. I had to be taught how to eat, how to walk, how to talk – like an infant. I was told things about Jennifer, but they were all foreign to me – even to this day. (But I sure don’t miss memories of three ex-hubbies, so I guess it’s cool with me anyway! LOL)
12. What do you enjoy most in your post-brain-injury life?
I enjoy that I am building my life from scratch. I am building it in a way that brings me joy and peace. I have reconnected with my family, which never would have happened if not for my TBI. That I guess is the best part of this all! I have my Momma and my big sister in my life now, and they never were before. Now they love me, look out for me, and help me just because they want to. I love them with all my heart!
13. What do you like least about your brain injury?
I dislike my loss of independence and being legally blind. I will never be able to drive again, and, with my anxiety disorder, I can’t go anywhere without my family’s support anyway. So I can’t just get up and go, even if I feel like it. I have accepted it. But it doesn’t mean I always have to like it.
14. Has anything helped you to accept your brain injury?
Time and God have helped. Please let me explain a bit. It took me nearly five years to find my way through my “brain fog” to the light of awareness, where I could even look around and understand what the heck is even going on. When I mention “God,” please know I am not a believer of any formal religion of any kind. I sure wouldn’t understand any of it anyway. Sorry. I am fully a spiritual gal. I know God saved my life. I speak and pray directly to him privately. I believe in angels. I also feel that I am a part of all things of this earth, sky, and everything in-between. I do not, have never, and never will step inside any church. That is not something that my heart desires. My connection is full and complete. I need nothing more and nothing less.
15. Has your injury affected your home life and relationships and, if so, how?
I had a “love of my life” prior to my TBI. He tried – truly he did – post TBI. He stuck it out for three years, but I myself never emotionally reconnected with him. I do know he loved me. He used to come home from the hospital, walk half way up the stairs, and collapse in tears. He became my full-time caregiver and friend, but emotionally I was unable to love him back. So I personally set him free to find love again, and he has – with a baby on the way. YAY!
16. Has your social life been altered or changed and, if so, how?
My social life changed big time, but it improved big time. My social life had been with drunk folks at the bar and such. I never drink at all post TBI. I never miss drinking for some strange reason. So that circle of folks is no longer in my life. At first, my social life consisted of “my dad,” a neighbor who just cared so much that he would spend about an hour every day with me. Sometimes he would take me places. He always made sure I was safe. My social life now consists of wonderful, caring neighbors who accept me knowing my limitations. They help when needed and spend time with me “just because.” My biggest social life consists of my family, who, for 30+ years, really weren’t much of a part of my life at all.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
I am and have been my main caregiver for six years now. I had no one after my ex-boyfriend/caregiver left. I was completely alone. I do, however, understand in many ways what it takes. Many of my dear friends who I know so well on the Internet are caregivers of survivors. They fill me in totally and honestly. I also help them to maybe know what their loved one is thinking when a reaction occurs, things that may stimulate the survivor, things that the survivor may enjoy, etc.
18. What are your plans? What do you expect/hope to be doing ten years from now?
My life will be pretty much what I do now – “pay my life forward” to other survivors and caregivers by helping them – sometimes with info or sometimes with laughter, music, inspiration, joy, etc. I am permanently and totally disabled, so I truly believe that “work” is out of my future. That’s okay with me, truly. I love what I do now, and, as my father used to always say, “If it works, don’t fix it.”
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.
Realize it is what it is!
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
Please never rush it. You’ll get there when you’re ready to get there – not a second sooner. It may take years and years, but when YOU are ready, you’ll know it.
Tell folks to get over themselves and their ignorance if they ever say, “Just get over it.” It takes a lifetime!
If you’re unable to do something right now, always say, “I can’t do it AS OF YET!” It leaves room for possibility and hope for your future!
(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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