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Survivors SPEAK OUT! Courtney Clark

Survivors SPEAK OUT! Courtney Clark

presented by

Donna O’Donnell Figurski

 

Courtney Clark Photo 2

Courtney Clark – survivor of Brain Injury & Motivational Speaker

 

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

Courtney Clark

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

Austin, Texas, USA

3. On what date did you have your brain injury? At what age?

In the spring of 2011, at age 31, I discovered I had an AVM (arteriovenous malformation).

4. How did your brain injury occur?

An AVM is a congenital birth defect of the blood vessels. I actually had no symptoms and no warning signs, but I had been living with it for 31 years when doctors found it.

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

My oncologist actually found my AVM at my 5-year cancer-free scans! Because I didn’t have any symptoms (usually symptoms are headaches and seizures), I had no idea that I had it. I also learned that three aneurysms were within the AVM. Any one could have ruptured at any time.brain-20clip-20art-brain4

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

I flew to New York to be seen by one of the top neurosurgeons I could find. I had three brain surgeries.

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

I wasn’t in a coma. I woke up from surgery the first day, but I struggled with consciousness for almost two weeks.

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 didn’t have to do rehab, but I did have to teach myself how to read again over the course of about a month because I really struggled with comprehension.

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

visionThe main issues I struggled with right away were visual issues. I had a problem with depth perception, and, because of that, I couldn’t walk for several days – I could only walk a few steps at a time. For the next several months, I also had to work on reading and anything else that required visual comprehension.

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

My life the first year was painful. I was running a small nonprofit out of my home, and I found that I could barely stay awake long enough to do any work. I felt completely helpless. (I couldn’t even take myself to the bathroom.) Now, I’d say my overall life is better – going through this with a supportive husband by my side has shown me I chose the right partner (the second time around). Also, I have even more perspective on life.

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

Yoga! I am NOT a natural athlete like everyone in my family. But, in yoga, I had mastered the headstand. I could do not one but two cool headstands! I felt like a rock-star athlete for the first time in my life! When my neurosurgeon told me that I could no longer do Yoga th-1headstands (it sounds obvious now but caught me completely off guard at the time), it was the first time I really, truly wept. Like, I’ve been through so much, and now I can’t even do this ONE THING that brings me so much joy and makes me feel like a beast!

In a larger sense, I also miss that feeling of immortality that we all have when we’re young – when we think nothing bad could ever happen to us.

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

I’m so much more appreciative of my husband, my loved ones, and my life! Because of everything I’ve been through, I now get to research, write, and speak on resilience, and I love traveling the world to get to help other people.

13. What do you like least about your brain injury?

These days, nothing!

14. Has anything helped you to accept your brain injury?

One of the main things that helped me was volunteering and giving back to other people. (It’s a strategy I ALWAYS use to help me when I’m struggling with something.) Research shows that volunteering is one of the best ways to get perspective on our struggles.

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

My relationship with my husband, Jamie, has been affected – because I feel 100% certain that I’ve chosen the right life-partner. When I was diagnosed with cancer at 26, my then-husband wasn’t as supportive as I would have liked. The push in the direction to end my marriage was painful, but necessary. Jamie, my second husband, and I hadn’t even been married a year when the AVM was found. I was so worried that having to take care of me – take me to the bathroom, etc. – was going to hurt our new marriage. But, Jamie was, and continues to be, a most-supportive, caring partner.

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

I feel very lucky – I didn’t have any long-term changes to my social life. Short-term, yes; but long term, not really. I will say that, after my surgeries, I have a “life is short” feeling – I don’t put up with a lot of BS or unkindness from friends.

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

Image result for Free Cartoon Clip Art love life

My husband was my main caregiver. I don’t know if anyone can totally “get it” until he or she has been through it, but I always say that in some ways it’s almost harder to be the loved one than the patient. It was especially difficult for Jamie to deal with me because I had experienced the world of cancer also! Jamie didn’t always get to be the one to choose the treatment plan, but he had to just go along with whatever I chose. And, I got wheeled away, and I slept through the 10-hour surgery, but my husband was awake, pacing the floor the whole time!

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

Ten years from now, I want to continue traveling and speaking to groups to help them gain resilience and handle change and challenge.

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.

My biggest helpful hint is that helping someone else is a tool that EVERYONE can use. So often, we think that, if we’re struggling, we have nothing to give. And, we may feel drained, exhausted, or like “Why do I need to help somebody else? I’m still getting help?” or “How could I even help someone, with my life the way that it is?” But, giving doesn’t have to be directed downward – to someone less fortunate. When I was sick the first time, I kept up with my volunteer activities, and I found that it gave me a sense of personal power and accomplishment, even when I didn’t feel like I was accomplishing much in my everyday life.

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

My best advice is that healing and recovering from a brain injury isn’t a linear process. Before your brain injury, maybe you were like me: go-go-go, getting everything done, climbing the ladder, all about success. You can’t just “bounce back” after something like this. It’s a long, slow trudge, which our society doesn’t glamorize. But, the slow journey is really the only option, and that’s not all bad. It’s an opportunity to reprioritize and savor the smaller things (which I used to ignore).

 

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Courtney Clark – Survivor of Brain Injury – will be Keynote Speaker – BIAAZ Rays of Hope Conference – May 17, 2019, Phoenix, Arizona

 

Learn more about Courtney Clark on her website, Courtney Clark – Accelerated Resilience.

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Survivors SPEAK OUT! …….. Alan Gregory

Survivors SPEAK OUT! Alan Gregory

presented by

Donna O’Donnell Figurski

 

Alan Gregory 2

Alan Gregory – Brain Injury Survivor

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

Alan Gregory

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

Charlevoix, Michigan, USA     ajgregory@chartermi.net

3. On what date did you have your brain injury? At what age?

January 5, 2016     I was 52 at the time.

4. How did your brain injury occur?

I slipped on ice in our driveway while going to move my wife’s car. I had just gotten home from work on a Friday evening, and I went to get into her car. I stepped on a patch man slips and falls in waterof ice and flew up into the air, landed on my back, and then hit the back of my head on the concrete. I still remember that awful “Crunch” sound.

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

I had suffered a concussion when I was hit in the head by a softball while coaching, so I knew the symptoms and the feeling. My wife is a Registered Nurse, so she knew I had to rest, and she kept checking on me all the time. After a trip to the Emergency Room, I expected the symptoms to go away in a few days or so. The ER doctor said I would be OK in a week at most. I returned to work on Wednesday (four days after the fall happened) because I had so much work to do in my job.

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

I went to the Emergency Room at the time of my fall. I was released with orders to just rest for a few days and stay in dark, quiet areas. That was my treatment … nothing else.

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

No. I was only knocked out for a second or two.

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 did outpatient rehab at New Approaches Center. I had physical therapy, occupational therapy, speech therapy, and cognitive therapy. I was at New Approaches as a patient for almost a year, with visits three times/week.

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

I have a balance problem, which is even worse when I “crash.” In the beginning, my crashes would happen randomly, and I would get severe dizziness, nausea, and confusion. Over time, these episodes started to spread apart, and now they hit when I am fatigued or overstimulated – usually 3-4 times/week at least. When I crash, my wife helps me into bed, and I usually nap two to three hours. Sometime, I wake up and feel good to go; sometimes, I am still very listless, and my brain feels like it is operating at about 20% at best.download_image

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

Ha! Does anyone every answer “No”? Yes – life has changed dramatically! There are lots of adjustments and lots of compromises, but we do what we can do. First of all, I lost my job after 30 years with the same company. What really ticks me off about that is that I worked at home (company laptop) for five months after my traumatic brain injury (TBI). I tried to return to work, but the lights and general office-noise just hit me hard, and twice they found me on the floor throwing up. After that, I was told not to come back until I had a “clean bill of health from a doctor.” Yeah, right! I would work as long as I could on the laptop (30-40 mins at first) and then go lie down in dark and quiet. I would then come back later and try some more work. I was able to keep things going and get my reports out on time. I even helped do the monthly closing for each month, and I got things done in a timely manner. Sometimes I would work until I threw up, rest for a while, and then come back for more. I did everything I could and was assured by Human Resources that my job was safe. I asked about coming back part-time (as my doctor recommended) or even about working with no bright lights or noise, but I was told the company did not do that! So, I hit the 6-month mark from the date of my last work day IN the office (not counting my work at home – since I was told that “no one asked me to do that”), and they put me on disability. I was told I had 6 months from that date and I would be released. I was improving, but at a relatively slow pace. I could come back and try full-time – something every doctor and therapist said was a bad idea. But, if I did that, I lost all disability claims for the future. So, they let me go and dropped my insurance, and that was it.

My life may have changed for the better. I think I am a much more patient and caring person NOW. I stop and think about how people might be feeling and how I can help in some way. I am not stressed-out like I was because of my job … but my family has struggled financially from my losing my job. Life is different. I struggle to move on totally, as I still have a lot of deep-seated issues with people who did not help me at my former employer and with “friends” (at least I thought they were) who have nothing to do with me after my TBI. That is probably the next biggest thing – how people treat me or avoid me. Why? What did I do? You think I like being this way? I wish I could go back to work.

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

I miss my pre-TBI energy level … I felt like I could work hard for 9-10 hours in my job and then come home and help around the house. Now, I have to watch what I do and know that I may crash later.

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

I like having more time with my family. My get-so-caught-up-in making a living and doing my job meant that life just got away from us sometimes. It has been nice to get to spend more time with my wife and my boys – even though one is now in the Army. I feel like we have a better relationship.

13. What do you like least about your brain injury?

I used to consider myself smart and very good at my job. I was an accountant, and I worked for years to get to where I was. I went to night-school for over ten years to finish up my Bachelor’s Degree, and I was three classes into my Master’s schedule. I had a 3.98 GPA when I fell.1440606034164831363did-you-know-auditors-are-usually-accountants-work-in--809089-hi

14. Has anything helped you to accept your brain injury?

Reading books from people like Amy Zellmer and so many other wonderful people helped me to know that I was not alone. But, joining Facebook groups like Amy’s “TBI Tribe” really helped so much. I get to talk to people, and I always get their suggestions and ideas on things to do. Dr. Glenn Johnson and all the therapists at New Approaches helped me so much.

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

Of course. My TBI has changed the way my wife and I do things – simple things, like mowing the grass or shoveling snow. I have to watch what I do and be honest with myself on how I feel. I do think the TBI has made me open and easy to talk with.

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

Yes. We go out with a very small group of friends, and we had to prepare them in case I crash. They have all witnessed it now, and some are very helpful. Some also just kind of back-off. I am 6’2”, and my wife is only 5’2”, so she sometimes needs some help with me.

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

thMy wife is my main caregiver. She is amazing, and I would be lost without her love and support. She is my rock. I know the things to do as a caregiver, but I also know how hard it can be.

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

I take things more as one day, or maybe a few days, at a time now. I am much more flexible, and I do what I can each day. I hope I am still improving and helping others in ten years.

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.

BE PATIENT, so give yourself time. Learning to live with a TBI takes a while … not days or weeks … but longer. Love each other.

Alan Gregory 3

Alan Gregory – Survivor of Brain Injury

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

My advice is to not take personally the actions of others, but it’s easier said than done. I still feel bad that people whom I called close friends treated me like I had the plague after my fall. But, they just don’t get it. WE do! So, look to people who really understand and get it.

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Survivors SPEAK OUT! . . . . Robb Anthony Filippes

Survivors SPEAK OUT! Robb Anthony Filippes

presented by

Donna O’Donnell Figurski

 

Rob Filippes 052018

Robb Anthony Filippes – survivor of brain injury

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

Robb Anthony Filippes

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

Evansville, Indiana, USA

3. On what date did you have your brain injury? At what age?

May 22, 2016

4. How did your brain injury occur?

I had a full cardiac arrest.

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

I realized I had a problem when I woke up, and I had to go to HealthSouth Deaconess Rehabilitation Hospital.

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

Well, I was on life-support … cartoon+infus

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

Yes. One week

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)?

Yes. I was an inpatient at HealthSouth.

How long were you in rehab?

One month

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

I lost my short-term memory. Balance is a problem. Sometimes I need to use a cane or a walker. My personality changed; I became nicer.

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

My life is better.

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

Nothing. I was a drug addict for 35 years. (I’m 51 years old.)

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

I greatly appreciate that I’m still functioning. I’m very lucky.

13. What do you like least about your brain injury?

I dislike my short-term memory loss.

14. Has anything helped you to accept your brain injury?Shrink 2

I still have a hard time accepting my brain injury. I go to a “shrink” now.

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

My brain injury actually made my home life better. I was about to lose my marriage over it. (I lost my first marriage from it.)

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

Robb Anthony Filippes & Wife

Survivor – Robb Anthony Filippes & wife

Yes. I don’t see anyone.

17. Who is your main caregiver?

My wife

Do you understand what it takes to be a caregiver?

Not really. She does everything for me and our family.

18. What are your plans?

I hope to help others with addiction.

What do you expect/hope to be doing ten years from now?

Rob Filippes Survivor 2 0520118

Robb Anthony Filippes – survivor of brain injury

I hope to still be alive and to have helped people, even if it’s one person.

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.

Get counseling right away

20. What advice would you offer to other brain-injury survivors?

Never Give UpDon’t give up!

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

All brain-injured people are in my prayers.

 

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Survivors SPEAK OUT! Kuna Williams

Survivors SPEAK OUT! Kuna Williams

presented by

Donna O’Donnell Figurski

 

Kuna WIlliams1. What is your name? (last name optional)

Kuna Williams

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

I currently live in Tempe, Arizona. At the time of my accident, I was a homeowner in Surprise, Arizona.

3. On what date did you have your brain injury? At what age?

I received my traumatic brain injury (TBI) on July 27, 2006. I was 26 years old.

4. How did your brain injury occur?

I was involved in a motorcycle accident a couple blocks up the street from home. I was on my way to play a game of billiards.

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

When I was hit, a gentleman found my cell phone and called the phone number titled “Mom.” My mother and my father drove from Glendale to the scene of the accident – Surprise. I was taken to the hospital while in a coma. The following morning my mother was advised that, among other injuries, I had received a traumatic brain injury.

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

I received emergency treatment and was ambulanced to the hospital. I was unresponsive at the scene of the accident, and therefore I was intubated. My left lung was collapsed (left pneumothorax) for which a chest tube was inserted. My left wrist was broken. (I had an open left distal radius and ulna fracture.) It was repaired with multiple screws. An EVD (external ventricular drain) was made for a closed head injury and remained for two weeks. I received a trache (tracheostomy tube) and was placed on a ventilator. (A tracheostomy tube is inserted into the trachea for the primary purpose of establishing and maintaining an airway.) A GJ-tube (gastro-jejunal tube) was also inserted. (GJ-tubes can be used to bypass the stomach and feed directly into the second portion of the small intestine.)webpage-clipart-hospital9-1

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

I was in a medically induced coma for twelve days. About four months after my accident, they put in a ventriculoperitoneal (VP) shunt (which redirects excess fluid away from the brain to the abdomen, which can more easily tolerate surplus fluid). They also installed an inferior vena cava (IVC) filter (used to prevent blood clots from moving through the blood into the lungs), which will stay inside for the rest of my life.

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 both inpatient and outpatient rehab. Inpatient rehab was for three months and included physical therapy, occupational therapy, and speech therapy. Holistic outpatient rehab included physical therapy, occupational therapy, cognitive therapy, and speech therapy. Holistic rehab was for a total of eighteen months. I continue to see a neuropsychologist.

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

Due to my TBI, I have memory issues, changes in the speed of processing, a field cut (vision loss), and balance issues.

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

Certain aspects of my life are better. I have more of an appreciation for what life has to offer, and I am more optimistic about what can be achieved. My feeling of optimism comes from my Faith, the many resources that are provided, and networking.

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

I miss cruising custom cars.

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

Kuna Williams and Evie

Survivor of Brain Injury – Kuna Williams & wife, Evie

I enjoy spending time with my wife, drawing, attending brain injury events, participating in church, and – best of all – being a caregiver and helping others who have physical and/or mental challenges.

13. What do you like least about your brain injury?

I don’t have much that I don’t like. It’s just sad how it took an accident to bring this new outlook on life.

14. Has anything helped you to accept your brain injury?

What helps me with acceptance is that I realize It can always be worse. I attend support-groups. Others with the similar conditions share with you their compensations, and you share your tips and tricks. You feel good about how you can help someone. I accept my challenge and realize I can use compensations. Acceptance is tough, but, once you have accepted your circumstance, think Oh well. Move on … things WILL get better!

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

Yes. What has changed is that I’m not out gallivanting and abusing substances. What has also changed is my financial life and spending tactics.

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

See my answer to the previous question.

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

I am a survivor, but I also work as a caregiver. My main consumer has a TBI (just like me), and the other gentleman was born with challenges and wasn’t expected to live as long as he has. I treat them as friends that I can relate to. I don’t make their challenges a characteristic.

logo18. What are your plans? What do you expect/hope to be doing ten years from now?

I have previously done computer-aided drafting before and after my injury occurred. I also worked retail before I got back into drafting. After my TBI, I was no longer good at drafting. But, I am good at talking to people, and I love to draw. So, that is what led me to being a caregiver part-time and designing T-shirts part-time.

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.

Kuna Willaims & Evie 2

Survivor of Brain Injury – Kuna Williams & wife, Evie

Survivor of Brain Injury – Kuna Williams & wife, Evie

I’ve learned from my rehab that “Things Take Time.” Don’t rush things, but keep trying. Show steady persistence until you develop a routine for something. Find something you are good at or something you want to do.

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

Find your Niche!

 

You can learn more about Kuna at the following sites.

SortaFixd

weremovingforward

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As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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Survivors SPEAK OUT! . . . Su Meck

Survivors SPEAK OUT! Su Meck

presented by

Donna O’Donnell Figurski

 

 

1 Su Meck 10862625_10204051895112757_5004286472948685848_o

Su Meck – Brain Injury Survivor & Author of “I Forgot to Remember”

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

My name is Su Meck.

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

I currently live in Northern Virginia (USA) outside of Washington D.C.

On what date did you have your brain injury? At what age?

3. My brain injury occurred on Sunday, May 22, 1988. I was twenty-two years old at the time.

4. How did your brain injury occur?

A ceiling fan in my kitchen fell and hit my head, knocking me down. As I fell, my head hit the kitchen counter, and then hit the floor.ceiling-fan-clip-art-1160226

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

My husband, Jim, was sitting right there at the kitchen table reading the Fort Worth Star Telegram when the ceiling fan fell on me. He saw the whole thing.

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

Jim called 911 right away. The ambulance came and took me to the closer (smaller satellite) hospital. But it was quickly determined that I needed to be at the bigger downtown Forth Worth hospital because that hospital actually had an MRI (magnetic resonance imaging) scan machine.

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

Whether or not I was in a coma depends upon which pages of my (handwritten) medical records one reads. I was definitely in and out of consciousness for a few days, but I am unsure as to if I was in an actual coma.

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?

Rehab? In Texas? In 1988? LOL! The “rehab” that I had was terribly inadequate, especially by today’s standards. I was assigned a physical therapist and an occupational therapist, but it is unclear what specifically those people did with me.

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

The most significant loss for me was experiencing total retrograde amnesia, which means I lost all of my memories of roughly the first twenty-two years of my life. Initially, both short- and long-term memory were affected. I did not recognize my husband, my two children (ages 2 and 1), any other family members, or friends. I also couldn’t walk, read, count, brush my teeth or hair, feed myself, etc. My personality post accident is the opposite of my personality from before the accident.

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

My life totally changed. Better or worse? It’s way more complicated than that. I don’t personally know what my life was like before the accident. I have to rely on the memories and stories of others who knew me. Which, by the way, really kind of sucks.

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

I don’t have any memory of anything from my life pre TBI (traumatic brain injury): all of my childhood/teenage/early adulthood memories, learning how to ride a bike, birthdays, grandparents, learning how to play piano and drums, vacations, my first crush, my first kiss, pets, losing my virginity, college-looking (the first time), sorority rush/initiation/parties/friends, meeting and falling in love with my husband, my wedding, the pregnancies of my two boys and their first years, and so many, many, many more …

12. What do you enjoy most in your post-brain-injury life?Speaker

Advocating for my fellow TBI survivors. I love speaking to groups of survivors, caregivers, and anyone really about what it is like to live with a TBI.

13. What do you like least about your brain injury?

Nearly everything else

14. Has anything helped you to accept your brain injury?

Even though there are still some days that I feel as though I can’t do, or understand, or remember a damn thing, the process of writing my book helped me to come to terms with how far I have actually come since my accident.

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

Oh yes! I don’t feel as if I am part of my family (my parents’ and siblings’ family). I think of my kids as more like my siblings. And my husband? Well … We are still married (33 years) … But since my accident, there have been some genuinely shitty times!

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

I’m sure it has changed in many ways, but one thing that comes to mind (and the thing that was most noticeable when I was in college at both Montgomery College and then at Smith College) is the fact that I feel way more comfortable around people in their 20s and 30s than I do around people my “real” age (50s).

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

Jim, my husband, is my main caregiver now. But at times, my children often took on the caregiver role because Jim traveled so much.

3 Su Meck & Jim 10835181_659603147482572_2314662174685025134_o

090518 PressKit_DonnaODonnelFigurski dmf3 091218

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

Wow! This is a tough one. I would love to continue writing (and publishing) stories, essays, lyrics, whatever. I always wanted to be part of a working/performing rock band, playing drums as well as singing. I want to become more proficient on the guitar, uke, and piano. I’d love to travel around speaking and educating people about what it is like to live in this crazy world as a TBI survivor. I’d love to move back to New England. I want to ski, and hike, and learn to swim. I’d love to have a dog (a service dog would be great to keep me from wandering). I want to take long extended vacations to Australia, New Zealand, England, Ireland, and even Canada.

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.

Be happy with who you are now, even if you are one hundred percent different from the person you were before. Be honest with yourself and others. It is okay to ask for help. Graduating from Smith College in 2014 was a huge accomplishment for me. In fact, Smith almost did me in physically, mentally, and emotionally. But Smith also gave me a tremendous gift: An enthusiastic love of reading and learning. Keep learning!

I forgot to Remember Book Cover20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?

Please buy and read my book, I Forgot to Remember: A Memoir of Amnesia. (I’m shameless!) And, if you like it, please write a positive review on Amazon and/or Goodreads. (Yes, I’m truly shameless!)

 

 

Please check out Su Meck’s book. It’s a great read!

 

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Survivors SPEAK OUT! . . . Gage Mabry

Survivors SPEAK OUT! Gage Mabry

presented by

Donna O’Donnell Figurski

 

Gage Mabry 1

Gage Mabry – survivor of brain injury

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

Gage Mabry

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

Missouri, USA

3. On what date did you have your brain injury? At what age?

October 24, 2015  I was 20 years old.

4. How did your brain injury occur?

I was working, and a fifteen-pound scanner fell from a twelve-foot ladder overhead. It landed on top of my head.

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

Immediately. I knew that I took a good hit to the head. It was like being a cartoon character in a slow-moving cartoon.

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

There was no emergency-care immediately after the accident. I continued to work the rest of my shift. I was disoriented, my vision was blurry, and I developed a massive headache. It wasn’t until my mom tried to wake me up that we realized there was a problem.1304_Symptom_12

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

No

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 was sent to a company doctor, who at first diagnosed my injury as a concussion. When my symptoms continued to persist and worsen over the next few weeks, the company sent me to have a CT (“cat”; computerized tomography) scan, which showed no abnormalities. Over the next three months of “rest,” my symptoms continued, and new ones developed. So now, my brain injury was diagnosed as Post-Concussion Syndrome. I was sent for neurological testing, which showed deficiencies in brain function. I was then referred for further treatments to involve pain management, balance therapy, and counseling. But, due to the situation, I never received any treatment other than what my family could try and provide. Now after two years and an independent medical exam, I’ve been diagnosed as having “Diffuse TBI” (traumatic brain injury).

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

headacheI have severe migraines that last for days, photophobia, sensitivities to loud sounds and to certain smells, and balance issues. I also have issues with depression, anxiety, anger, and fatigue that are so bad that I can’t even function some days.

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

This is a hard one. My old life is gone, but my new one is filled with good and bad … it’s a work in progress!

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

Activities I used to do; my friends.

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

All the possibilities

Gage Mabry 2

Gage Mabry – Brain Injury Survivor

13. What do you like least about your brain injury?

The headaches

14. Has anything helped you to accept your brain injury?

My mom!

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

This has been a roller-coaster ride. It has devastated my family financially, but it has brought us together – with more love and support for each other that we had before. My friends and girlfriend have their lives to live, and I just wasn’t part of their plans anymore.

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

This difference has been the hardest for me to accept. I went from being a popular, outgoing, and athletic person to a withdrawn, angry, and depressed person overnight. Social anxiety has been the hardest things to try and overcome, but I’m doing it day by day. Finding humor in that anxious setting has been the best medicine ever! I explain it to people as an “EMP” … electrical magnetic pulse … when I can’t remember my left from my right or forget how to speak. It eases the tension.

Mabry, Darlene Watson Caregiver

Darlene Watson Mabry – Caregiver

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

My MOM! And, yes, it has been so hard for her. I don’t know how she does it. She’s a

superhero to me!

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

I still have my dreams that I will fulfill. They have just been altered. Instead of a “Game Designer” … it’s a “Game Broadcaster”; my physical-fitness regimens have been modified to walking instead of running. “Compromise” is what my mom calls 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.

You may have setbacks, but that doesn’t mean the game is over!

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

Never give up – regardless of how bad it gets – because you belong to a special group now … you are a Survivor!

 

Gage’s mother wrote a moving “Faces of Brain Injury”  Click to read

Please leave a comment/question. I will respond.

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Survivors SPEAK OUT! . . . . . . Deb Brandon Ph.D., Author

Survivors SPEAK OUT! Deb Brandon Ph.D. and Author

presented by

Donna O’Donnell Figurski

 

Deb Brandon 1

Deb Brandon, Ph.D. Brain Injury Survivor Author of “But My Brain Had Other Ideas”

 

 

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

Deb Brandon

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

Pittsburgh, Pennsylvania, USA     deb@debbrandon.com

3. On what date did you have your brain injury? At what age?

March, August 2007     I was 47.

4. How did your brain injury occur?

Brain bleeds and subsequent brain surgeries

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

In the spring of 2006, I had some fleeting symptoms (dizziness, poor balance, vertigo, tingling in my arm). In September 2006, I mentioned them to my doctor at my annual check-up. She sent me for tests, including a brain MRI (magnetic resonance imaging). I was diagnosed with bleeds from cavernous angiomas (tangles of thin-walled blood vessels in my brain). The following spring (March 2007), I suffered from loss of hearing and experienced a seizure. That night, I came down with the worst headache you could imagine, which was when I realized I’d suffered another bleed (confirmed in the Emergency Room).

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

I had a CT (computerized tomography) scan, which was followed by an MRI in the Emergency Room. I was then hospitalized for a couple of days, during which time they did routine tests.

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

I was not in a coma.

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?

Deb Brandon Surgery

Deb Brandon, Ph.D. Brain Injury Survivor Author of “But My Brain Had Other Ideas”

After the acute bleeds in the spring of 2007, I underwent outpatient physical therapy to help me with my pathetic balance. After the two brain surgeries to remove the bleeders (the only known treatment for cavernous angiomas), I spent a week in inpatient rehab, at which time they worked on my balance, problems with my eyes [nystagmus (rapid, involuntary movements of the eye), double vision, and weakness of muscles in my left eye], and I had occupational therapy. At the end of that week, I suffered a seizure, which led to a third (emergency) brain surgery. I never underwent rehab after that, except for stuff I was doing at home (video games for the brain, exercise).

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

I have problems with balance, memory, attention span, sequential thinking, vocabulary access, and task initiation. I also suffer from vertigo, paranoia, debilitating fatigue (which exacerbates all the other symptoms), crippling headaches, sensory overload, seizures, anxiety, severe depression, and (occasional) suicidal ideation. There’s probably more, but I can’t remember right now. 🙂Droopy Flower

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

My life is harder, but much better.

I divorced my husband. My relationship with my daughter (13 at the time) suffered (although over the last couple of years, we’ve gotten closer), but my son (15 at the time) and I got closer. I am a professor at Carnegie Mellon University, and I went back to work full-time two years after the surgeries. I am a mathematician. Afraid to mess-up in the classroom, I stuck to teaching the lowest level classes we teach – calculus for the humanities students (which I came to love and now teach on a regular basis). But, several years later, I found that between fatigue and headaches, I had to cut back on my teaching load.

On the other hand, in addition to the losses I suffered, the “bloody brain” (as I refer to it) led to some wonderful gains. From a socially awkward mathematician, I became better able to connect with people and formed deeper bonds. I am much more outgoing. I now have a supportive and caring community around me. I became a much better teacher, and, whereas I liked teaching math in the past, now I am passionate about it. I also discovered a new passion – writing. To better understand my experience, I started writing an account, which later grew into a book (“But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury”) that I hope will reach as many people as possible to raise awareness of brain injury. From a journal writer, I became a published author of a book I am proud of. I figured out that I was a lesbian, a realization that filled a hole I hadn’t been aware existed.

Deb Brandon Book, But My Brain Had Other Ideas

“But My Brain Had Other Ideas”

I’m more aware and self-aware. I’m a more authentic version of myself, more me. I’m more comfortable in my own skin. I am a better person. I’m more empathetic – more willing to reach out to anyone who could use a shoulder or a hand. I’m a much better listener.

I feel that the gains far outweigh the losses. I wouldn’t want to repeat the experience, but I don’t regret it. It brought me to where I am now.

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

I miss my daughter’s uncomplicated love, though we are heading for a closeness. I miss being able to multitask and being more productive. I miss having no issues with sensory overload, seizures (though those are mostly under control now), and horrific headaches. I really and truly don’t miss them, though. I like my life now much better than my past life.

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

(See my answer to question 10.) I enjoy my environment, teaching, deeper connections with people, forming and reforming new connections, and writing. I also travel a lot (much more than I used to) – both inside the US and abroad – despite the fatigue it causes. I refuse to give in too much to the bloody brain. I want to LIVE.

13. What do you like least about your brain injury?

I don’t like my fears of repeat bleeds (from my remaining angiomas) and subsequent surgeries, anxiety, and depression.

14. Has anything helped you to accept your brain injury?

My life is fuller now – my relationships, my closest friends, i.e., our interactions no longer revolve around the bloody brain. My depression and seizures are pretty much under control.

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

Because of issues with fatigue, in many ways I live like a hermit. I very rarely have a friend over, and I rarely attend social occasions. I often have to hide in my bedroom to avoid sensory overload. As a result, my casual relationships are more virtual much of the time. My closer friends understand, and, if we do get together, we choose quieter settings. They know that, when fatigue strikes, I have to leave (or they have to leave). A couple of close friends are always there for me. My bonds with those friends are very strong – stronger than they were before. (See above for more details.)Fatigue

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

Though I have firmer connections with people, my social life is fairly minimal because of issues with fatigue. I have to pick and choose. However, I make more of an effort to accept invitations – mostly by past and current students. I have no interest in socializing with colleagues. Most don’t really understand my issues. And life is too short.

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

A good friend, Joyce, is very important to me. She helps me clean, cook, and do laundry. She also provides better judgment – for example, insisting I rest when I’m falling off my feet or making sure I have everything when I travel. When I wasn’t allowed to drive, she acted as my chauffeur. When she goes away, I flounder after a month – I’m too tired to work and maintain a normal household.

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

Even after the reduction in my teaching load, working is rough, though I enjoy it very much and love the challenge. In the distant future, I expect to spend time writing and (public) speaking about brain injury.

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.

  1. There is one issue that took me a few months to understand and a few years to effectively address it. Even now, I sometimes slip-up. I have trouble dealing with high volumes of incoming data, whether sensory, emotional, or cognitive.

When it comes to sensory input (noise, crowds, bright colors), I try to avoid difficult situations (parties, sports events). Also, if I find a focus, an anchor (which can be the voice or touch of a person I trust), I regain my faculties. Unfortunately, that’s not always possible.

Emotional stuff is tougher. My damaged filters have mended to a large degree. I manage, but ultimately, you feel what you feel.

Cognitive input (when reading and listening): I have learnt to chunk it down – for example, work to absorb one line at a time. This has been useful in my teaching. When students have trouble with word problems, I show them how to address each chunk separately, and only then do I ask them to connect the dots and fill in the gaps to solve the problem as a whole.

Until I learned how to manage overload, I often ended up having a meltdown.

  1. Another issue that I didn’t identify as a symptom of brain injury for the longest time was task initiation. Though the end-result is the same, task-initiation difficulties are very different from procrastination. They feel different. Before my neuropsychologist explained it to me, I assumed I was managing life inadequately.

I explain it as follows: When you’ve just finished a long and involved project, it feels impossible to start the next project. In the case of brain-injury-related task initiation, there is nothing obvious that seems to be the reason behind it. It can strike randomly, and it can last anywhere from days to years. But, once you get started on the task, life is good, and you’re off and running, as if there never was a problem.

  1. A sometimes-effective strategy is as follows: When you identify a problematic task, put it on a daily task list (which has no more than two items; otherwise you’ll become overwhelmed and freeze). Then block off time for each of the two tasks on your calendar.

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

I found that neurosurgeons consider brain surgery a success, i.e., if you’re not dead or in a coma, life is good. Neurologists only seem to care about the physical symptoms (balance, vertigo, seizures, headaches).

neurologistOnly neuropsychologists seem to care about the invisible side of your disability. I found my neuropsychologist very helpful. He labeled issues I didn’t understand (task initiation, sensory overload) and suggested coping mechanisms and compensation techniques – extremely useful information that improved my life, both practically and psychologically.

I did not have the opportunity to undergo rehab/therapy (physical, speech, etc.) after my third surgery. I did everything myself. I played brain-games on the computer, went for walks (later hikes), and exercised every day. I’m sure I would have healed faster and more effectively with professional help. I didn’t have the wherewithal to fight for it myself, nor did I have anyone to fight for me.

Deb Brandon 2

Deb Brandon, Ph.D.

There is no full recovery from severe brain injury. There are always residual deficits that are exacerbated by fatigue. Pace yourselves carefully. Rest, rest, rest. But, don’t forget to live as fully as you can. Push yourselves as much as you can, but be aware of your limitations. Often it is a fine balance.

It’s an amazing journey of discovery and rediscovery.

Carpe diem within your limitations.

Life is good.

 

Please leave a comment/question. I will respond.

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As I say after each post: Please leave a comment by clicking the blue words “Leave a Commentanim0014-1_e0-1 below this post.

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