TBI – Survivors, Caregivers, Family, and Friends

  SPEAK OUT! – Ali Stretmater

by

Donna O’Donnell Figurski

Ali Stretmater1. What is your name? (last name optional)

Ali Stretmater

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

Rockville, Maryland, USA     alicat012003@yahoo.com

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

I’ve had four TBIs: the first was at age 3; the second, at age 4; the third, at age 30; and the fourth, at age 37.

4. How did your TBI occur?

All four of my TBIs were due to blunt-force trauma. TBI #1 occurred when a friend went to hug me. I fell back against the hard wooden arm of a recliner and cracked my skull open. TBI #2 occurred when I fell from the monkey bars while playing on them. The details of TBI #3 are still sketchy to this day. Just before surgery, I fainted in the hospital from debilitating pain due to a spinal cord issue. I struck my head on the corner of a filing cabinet and then again on the floor. TBI #4 was due to an assault. I was unknowingly drugged in my own home. It’s believed that I passed out and struck my head on the bathroom sink. The details surrounding TBI #4 are still unclear. The only witness isn’t an especially reliable source, as that witness is also the assailant.

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

I was 32 years old and had sustained three TBIs by the time I was finally told I had a TBI!! My neurosurgeon and neuropsychologist were the ones who finally explained to me that I wasn’t crazy and that my behavior(s) was perfectly normal for a TBI survivor. Until then, I had no clue that I had a TBI. When I was growing up, it was common for doctors to “spare” the parents of a TBI-child by not telling them anything at all about it. I wish I knew I had a TBI when I was growing up. It could’ve saved me a lot of difficulties with school, work, life, etc.

6. What kind of emergency treatment, if any, did you have?

For the first two TBIs, I was taken to the hospital. For TBI #3, I was already in the hospital. For TBI #4, I had no treatment for at least a week. I wasn’t able to schedule a visit with my neurologist until then. That appointment was at the insistence of another doctor whom I ran into a few days after I had TBI #4. That doctor was alarmed by my behavior. (I was in a complete blackout from TBI #4 and unaware that I’d had yet another TBI.) The doctor called my neurologist and made an appointment for me.

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

Thankfully I never went into a coma from my TBIs. After TBI #3, I was in a medically induced coma for a few days. That was due to a spinal cord surgery. Because of the risk of paralysis, I had to stay completely immobilized. (The paralysis thankfully didn’t happen.)

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 had physical, occupational, and speech therapies after TBI #3. I had rehab as an inpatient for a month and as an outpatient for the next 3–6 months. (It’s hard to remember exactly how long I was an outpatient.)

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

I have vertigo, depth-perception issues, impulse control issues, moodiness, word-searching issues, insomnia, severe short-term-memory issues, overstimulation, etc. TBI #4 made all the symptoms worse, and it wiped out my short-term memory as well. It’s even hard to remember all the symptoms and issues I have from the TBIs.

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

Being a 4-time survivor is my greatest blessing and also my biggest curse – all at the same time! I almost died twice. That and knowing that TBI is about “forever” really changes your perspective. Forever is a very long time!

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

That’s hard to answer. I can only vaguely recall a time when I didn’t have a TBI. I guess I miss my career. I loved my job and my colleagues. It was devastating for me when I was told that I would have to retire and that I wasn’t ever going to be medically cleared to return.

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

I appreciate being given a second chance at life and love. By rights, I’m not supposed to be alive to begin with.

13. What do you like least about your TBI?

I dislike being exhausted all the time, the insomnia, not being able to return to work, and the stigma that comes with having a TBI. I often tell people, “I have a TBI; I’m not simple. There’s a HUGE difference!!”

14. Has anything helped you to accept your TBI?

I have been helped by talking to other TBI survivors and by knowing that what we go through is normal – that I’m not alone in this.

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

Yes!! I can’t begin to explain how it’s changed everything!! Family members treat me very differently. They don’t understand, since they haven’t lived it.

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

Yes!! You name it. For a long time, I was very isolated. Old friends didn’t understand how much my world had changed. It was (still is) hard to get out sometimes because I’m always so tired. I’ve had romantic relationships break up. My current boyfriend is always harping on how it was before I had TBI #4.

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

As an adult, I’m my own caretaker. When I was a child, my main caregiver was my mother. But, she didn’t realize the lifelong impact that the first TBI had (and still has) on me.

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

Good question. I just want to live a peaceful life and help other TBI survivors when I can, especially new people. I’m in the process of realizing a lifelong dream of moving to Miami Beach, and I’m working (slowly, but that’s okay) on a new career path of fitness- and nutrition-coaching. I’d love to work with other TBI survivors, since we have a statistically higher risk of getting diseases like Alzheimer’s, etc. as a result of having a TBI. Studies seem to show that being healthy can lower this risk. I’d love to re-marry again too, but any future husband would have to understand (as best he can) that I have a TBI and that he is aware of what that entails.

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 TBI survivors with your specific kind of TBI.

I’ve had both front and back TBIs, as well as open-head and closed-head injuries. One thing I’ve learned is that, when it comes to remembering things, develop strategies to make it easier (like reminder apps on your phone or putting things like keys in the same place each time, so they’re readily visible and you’ll have a starting point to look for them when you need them).

20. What advice would you offer to other TBI survivors? Do you have any other comments that you would like to add?

YOU ARE NOT ALONE!! The biggest key – and the best therapy – is talking to other TBI survivors. Just knowing that someone else understands what it’s like without a lengthy explanation is priceless. Reach out to others, and remember that, by sharing your story, you’re also helping someone else who’s struggling.Ali

 

Thank you, Ali, 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 Ali.)

 

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Comments on: "Survivors SPEAK OUT! – Ali Stretmater" (2)

  1. Jennifer K. Berry said:

    Your comment of “I wish I knew I had a TBI when I was growing up. It could’ve saved me a lot of difficulties with school, work, life, etc.,” seems hopeful, but I’d like to let you know that it wouldn’t have made much of a difference. The world was so far behind on TBI knowledge back then and little to no accommodations were provided unless there was someone in the faculty who had personal brain injury experience.

    I am only 37, and had 2 TBI’s at age 17 and the third TBI at age 35. Back in 1994 when I had the first two TBI’s, my public high school in Fond du Lac, WI was made aware of my condition, yet they miserably FAILED at providing me with any adequate provisions. They told my parents, “We’ve never had a student with Traumatic Brain Injuries before.” They failed to offer me an Individualized Education Plan or anything to help me finish the 2 elective courses I needed to graduate. (I was a genius and graduating early from high school when I had my first TBI in a car accident and 2nd TBI falling out of bed in the hospital when I came out of the coma from the car accident).

    Today, neurologists know that the brain needs sleep and time to heal. The brain requires a calm, peaceful and nurturing environment to neuroplasticity to occur. Without a proper environment, a survivor will be stuck in the constant fight or flight response and not recover. The neurologist I had in Fond du Lac, WI had recommended I go directly back into high school from the hospital with no rehabilitation programs or anything. This landed me in a constant state of anxiety for the next decade of my life.

    In that high school, I was on crutches and didn’t even receive an elevator key to access my locker. To this day I have a repetitive nightmare that I am in a high school situation and cannot remember where my locker is or what the combination is. As a senior who spent the first half of the school year in the hospital, I never had the option of purchasing a year book. For some strange reason, I became sentimental and wanted a year book to remember my “friends” from school. I asked at the office if one of the teachers would spare their own personal yearbook so I could purchase it from then, and was shot down. I was so overwhelmed with dismay at the attitudes and lack of love displayed by the public school teachers that I left the school for good. This is about the same time that all my former friends did nothing to maintain their relationship with me. My best girlfriends went on a planned trip to Colorado and didn’t include me. They never called anymore and acted very distant since I couldn’t jump in my car and drive their hippy dippy butts all over the state looking for parties.

    Thankfully I had near perfect ACT scores the year before my car accident, so I was accepted into the Catholic college in my town without a high school degree. The school knew that I had 2 TBI’s, and had it’s own special learning department. Yet they didn’t quite understand what it’s like for a newly brain-injured student to try to wake up early in Winter and get her butt to a world religions class taught from a Catholic perspective. Not a piece of cake! I ended up dropping out of college when I figured how much more money it costed than a state university that offered an even better education. It just wasn’t worth eating Ramen Noodles for years- in other words, I couldn’t afford college at the slow pace I was working at while trying to hold a job and finish high school in a book form for the couple credits. I had no vehicle either, so I was stuck on campus and that was not fun at the small school with nothing nearby.

    In the meantime, my friend figured out a way for me to receive free Hyperbaric Oxygenation Therapy while being a nanny for her daughter in Pompano, FL. The better weather of FL in the Winter combined with the HBOT did wonders for my brain. My creativity and art skills returned and I started seeing a real future for myself in health care.

    I got on the waiting list to attend technical college and be an Occupational Therapy Assistant, like the one I admired from volunteering at the health care center in my home town. At that point, my life started (again) and I met my (future) husband and we moved near my college. I was able to graduate from college on-time and ended up working LTE at the state mental institution. I got married and had 2 sons with whom I decided to stay home with after doing a clinical rotation at the local daycares.

    Unfortunately, I will never get to work again due to the intense chronic pain I suffer from daily. It started after the birth of my second son, who was an improperly medicated emergency C-section. My baby boy turned breach the day before my induction and the doctor never bothered to put his hands on my belly. (I am very pleased that insurances now cover midwives to assist women with their birth experience, unlike just a decade ago. Almost makes me want to have another one- lol).

    My point is that I’ve been around the block as both a patient and a medical provider and have the inside track of knowledge of health care. I know that it is driven by pharmaceuticals and it’s a rare occasions to find a provider who really has in mind your best interests and not ultimately their own financial interests.

    I really thing that TBI is not a big money earner for the medical field, like cancer, and will never get the attention that it deserves. Therefore the general population does not accommodate or know how to accommodate survivors. So knowing years ago what you were struggling with would have helped you personally deal with your life, but it would’ve probably made little difference in how you were treated by the majority of people.

    I would like to add, however, that with more of us survivors advocating for ourselves as a whole, we are drawing more attention to the need for education of the general public about brain injury. I wish that football would adopt TBI, instead of breast cancer, but that would obviously cause them negative publicity. In the meantime of finding someone huge to support traumatic brain injury, us survivors can wave our flags and use medical journal citings and laws that prove our point.

    There are quite a few books and books into movies out there which somewhat provide a slightly skewed view of brain injury, but point to the severity of the injuries. I love the movie 50 First Dates, though it could’ve used a real survivor writing the details of the brain injury that comedy revolves. And the book, The Vow, which was beautifully and poignantly written by the Christian lady who suffered a TBI shortly after marriage, was made into the worldly movie that forgot the point of the book. Her faith and love for God with priorities as a Christian wife are a good part of what helped Krickett Carpenter succeed (not the steamy sex scenes or skewed plot, which resonated more with viewers than the actual truth of living as a Christian with TBI). I just highly recommend that a person reads Krickett’s book before they see the movie, if they even bother to see it. The book is great and the movie was a poor Hollywood equivalent at best.

    I know most major cities have brain injury support groups and more of us are reaching out to other survivors in friendship groups. I was a part of Mayo Clinic’s Advocacy Program which opened my eyes to advocacy beyond the medical perspective. I reach out to fellow survivors on a daily basis on Facebook and choose to maintain friendships with other survivors- though it may be difficult with limited mobility and funds. I someday hope to facilitate a local, non-medical support group. Right now I am in the early planning stages of figuring out how to avoid paying the government fees to run a group and collect donations from friends and local businesses to keep the group afloat financially and not go broke making copies and providing refreshments and speakers.

    .

    Like

    • Jennifer,

      Thank you for your very well thought out comments. I’ve sent you an email. I will wait for your reply.

      Donna O’Donnell Figurski
      survivingtraumaticbraininjury.com
      donnaodonnellfigurski.wordpress.com

      Like

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