TBI – Survivors, Caregivers, Family, and Friends

Archive for June, 2014

TBI Tales: Energizer-Ostrich

TidBits About Donna #49 Energizer-Ostrich

(Reposted from my other blog – Donna O’Donnell Figurski’s Blog Jan. 13, 2012)

 

What do you get when you cross a hyperactive rabbit with a pink-feathered bird on a beach? That would be ME – or in other words an Energizer-Ostrich.

I guess that warrants an explanation of sorts. But I will have to retrace my steps a bit – about seven years worth – to the source of what has changed me into a replica of an energizer bunny with her head in the sand.

Today, January 13th, seven years ago, David, my husband, suffered a Traumatic Brain Injury (TBI). If you have been following my blog, you already know this. If this is your first visit, you can learn the sordid details and do a cram course by reading the following posts. Or … you can just read on to get the Cliff Notes version.

Musings by Donna #39 TBI – Traumatic Brain Injury – One Size Does Not Fit All

TBI Tales: Bittersweet is Today


TBI Tales: A Fork in the Road to Recovery

This morning I woke with a start – at precisely 7:05 – the exact time, seven years ago that David and I began the journey of our new and unexpected life. Seven years ago we did not know what was in store for us. We didn’t even know if there was going to be an “us”. This morning, as I do each year on this day, I relived the moments of David’s TBI. From excruciating pain to a wild ambulance ride, to signing on the dotted line to taking a saw to my husband’s brain (I didn’t do that – the surgeon did.) to talking incessantly on the cell phone – arranging, arranging, arranging – flights, accommodations, squeezing David’s hand and promising him he would get better – when I wasn’t sure that he would, threatening that I would never forgive him if he didn’t fight to stay with me, telling the story over and over and over … of how he stumbled into our bedroom, his hand clutching his eye – then falling into a coma as the paramedics strapped an oxygen mask over his face.

After seven years I would have expected the intense memories to fade, but they remain vivid – with maybe just a few blurred edges. I remember many of the names of the nurses and caretakers. I remember the unwanted words of the doctor. I remember how family and friends converged on the hospital at all hours both day and … well into the night from all corners of the United States. I remember the day was one of intense fog both outdoors (and inside my brain). The outdoor fog caused airline flights to be delayed. The fog inside my brain insulated me from the tragic reality around me.

That same fog has dulled the pain over the years of watching David struggle to dress himself, to learn to feed himself again, to walk and talk. That fog blurs the hurt of seeing him hunched over his keyboard painstakingly tapping each key as he prepares another paper for publication or works on a book he’s editing for an international scientific journal or sends detailed instructions to his technicians in his lab about the next experiment to do. I welcomed the fog as I not-so-patiently waited for David to recover from a recent eye surgery.

I marvel at this man I call my husband. I’m proud of his accomplishments both before and after his trauma. I admire his patience, his persistence, his positive attitude as I watch him tackle life in the “hard” lane. He does it with grace, with no complaint, and with gentle optimism.

So, there is an “us” after TBI, though it’s a different “us.” We are not the same people we were before David’s trauma. I miss the before TBI “us.” Traumatic Brain Injury seriously changes the victim, but it also alters the spouse. TBI can rend marriages. It can tear families apart. Or it can make you stronger. See the New York Times article from January 9th 2012, When Injuries to the Brain Tear at Hearts.

David’s TBI tears my heart everyday, but each day, too, it gets glued back together with a kiss, with a smile, with a hug, with a laugh – but no tears. No, NO tears.

I still have not had a good cry. Life is too busy for tears. Besides, “Tears would make this too real – and it’s not … is it?” asked the Energizer-Ostrich.

(Clip Art compliments of Bing.)

Survivors SPEAK OUT! . . . . . . . . Danielle (Houston) Karst

                                        Survivors SPEAK OUT! – Danielle (Houston) Karst

                                    by

                                     Donna O’Donnell Figurski

Danielle after her Traumatic Brain Injury

Danielle after her Traumatic Brain Injury

 

 

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

Danielle (Houston) Karst

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

Burke, VA, USA         daniellekarst920@gmail.com

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

September 1997          16 years old

4. How did your TBI occur?

I was in a car accident.

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

Upon impact (I was unconscious and taken to the hospital.)

6. What kind of emergency treatment, if any, did you have (e.g., surgery,

tracheotomy, G-peg)?


G-tube (gastrostomy tube – a feeding tube that is inserted through the abdomen into the stomach)

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

Yes, 2 ½ months

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?

Yes. I had In-patient therapy (physical, speech, and occupational) for 5 months at the University of Virginia Children’s Hospital in Charlottesville, Virginia; In-patient therapy, but sleeping at home, by Mount Vernon Hospital in Northern Virginia; and Out-patient physical therapy at Mount Vernon Hospital.

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


Balance, a little perception, a little vision, handwriting, slow speech and typing, easily fatigued, seizures (though controlled by medication and calming techniques), anxiety

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

It drastically changed. I have a fabulous life now – a husband, a dog, a townhouse, and a wonderful part-time job.

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

I miss my athleticism and the freedom to have an independent social life. (I don’t drive, so I can’t really jump up and meet people anywhere.)

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

Happiness, my life, my work at a nursing home (helping with activities on the Special Care Unit)

13. What do you like least about your TBI?

I try not to think about what could have been.

14. Has anything helped you to accept your TBI?

I have a supportive family and friends. I am helped by thinking, “Yeah, this sucks, but what can I do with it to move past it and improve my quality of life?”

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

Yes, my old friends couldn’t see me getting better and didn’t want to wait around for me.

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

Yes. Pre accident, I was very social. Post accident, I hung out with my parents on weekends.

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

My parents were my main caregivers for 10 years – until my marriage. Now my husband is my main caregiver, with my parents consulting or giving their opinions when asked.

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

I hope to continue the work I am doing – helping in the nursing home and interacting with the residents, providing joy, and helping all those in need of care. Meanwhile, I will continue to advocate for people with TBIs, while writing my story and helpful ways to handle TBI.

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.

Yeah, this sucks. Try to accept what happened. Move forward and better your life. LISTEN, and don’t shut out others’ advice.

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

Never give up or get discouraged. God does have a purpose for doing this. Turn your crappy situation into a positive one. Listen to your parents and elders – they are only trying to help.

Danielle before TBI – on the Cheering Squad

 

Thank you, Danielle, 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.)

(Photos compliments of Danielle.)

You can read more about Danielle on her blog at Inside Danielle’s Mind.

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.

SPEAK OUT! Guest Blogger . . . . . . Cheri R. Hicks

SPEAK OUT! Guest Blogger Cheri R. Hicks

My Story

 

Girl Blogger cartoon_picture_of_girl_writingTo say that I’m a planner would be an understatement. I plan everything in my life. I always knew I wanted a second baby – and that too was planned. On June 18, 2013, we found out we were pregnant again. I was so excited. I had visions of what life was going to look like with two babies. As my due date drew near and we found out we were having a second boy, I visualized what life would be like around my house. The craziness and chaotic atmosphere of two little boys running around elated my heart. I told my husband all the time that we truly hit the jackpot.

Fast forward to February 18, 2014. I went for my last prenatal visit. This time it was different though. My blood pressure was running slightly high. My OB-GYN told me to check into the hospital because I was having the baby that day. But wait! That’s not how the plan was supposed to go. My son was scheduled to be born February 19th via C-section. I walked out to my minivan sobbing and called my husband at work. I met him at home where I packed my bag, and we were off to meet our second son.

It was hard to wrap my brain around the way things were going to look at home. My son was coming a day early, so I wasn’t quite as prepared as I thought. I recovered quickly from my C-section, and I was home by February 21st. The first week went smoothly. He was such a happy baby – a great baby.

On Wednesday, February 26th, I woke up with a headache. I remember being in my bedroom, and I felt like a bomb was exploding in my head. I called my husband into the room. He told me to lie on the bed. I just kept repeating, “Why won’t the pain go away?” We suspected that it was from the spinal anesthesia, so we called my OB-GYN. She instructed us to get a CT scan immediately and check into the delivering hospital. The CT scan came back “unremarkable.” They pumped me full of magnesium, which is the protocol for high blood pressure. They released me on Thursday afternoon. I felt completely normal again. That night was uneventful.

Friday February 28th was the day that my life changed forever. I woke up and noticed my vision was a little blurry. I took my blood pressure, and it was high. I lay in the bed. It all started happening as it did before. I felt like there was an explosion in my head. My neck became extremely stiff. Pain radiated down my spine. It seemed like my husband was moving in slow motion, and I felt like I was dying. He rushed me to the hospital again. My last memory of that day is walking through the hospital doors. I wouldn’t have my next memory for at least a week.

My next memory was being in a hospital bed with a bunch of tubes hooked up to me. I remember it was very hard to talk, so I had to write everything. Doctors would come in and ask me random questions, like “What day is it?” and “Who is the president?” This is when I learned what happened to me – a post-hemorrhagic stroke due to post-partum eclampsia. I had had a major brain bleed, and the left side of my body was not moving. I had just had a craniectomy. Those tubes in my mouth were a breathing tube and a feeding tube. I was in the ICU.

The ICU was trying to give me enough therapy to get me transferred to a rehab hospital. After 6 days, I was transported by ambulance to an inpatient rehabilitation facility. Luckily, I was at the best rehabilitation center in the state. They had to get me in and out of the bed using a sling. I was completely helpless. Everyone kept telling me, “Cheri, look to the left.” I had severe left neglect. My brain wouldn’t allow me to see things on my left side.

The hospital started therapy immediately. Therapy became my new job. Most days were the same. They would come get me in the morning, put me in a wheelchair, and whisk me off to the gym to do therapy. I made friends quickly, and I would introduce myself with “I’m Cheri, and I should not be able to say about myself that I’m 37 and survived a stroke.” I learned at the hospital that your mindset is your “golden ticket.” I quickly changed my mantra to “I’m Cheri. I’m 37 years old. I survived a post-hemorrhagic stroke, and I will walk again one day.”

I maintained a positive attitude. Sure, it was hard. I was away from my family and could not envision what my life was going to be like. Was I going to be able to take my boys to the park like I thought? This was a hard feeling to overcome.

On day 27 of 30 at the rehab hospital, I began to take my first steps. I had outgrown my sling, and I began transferring myself out of bed and onto the wheelchair on my own. Everyone told me I was making improvements very quickly. I told them I was going to be the fastest person they had ever rehabbed. By the end of therapy, I was walking. It was a miracle. I was a miracle!

On April 4th, one week before I was to be discharged from the hospital, I got the best surprise ever. My mom and sister and two nephews drove from Texas to see me for the weekend. It was great. My sister gave me a pedicure and a manicure. On April 5th, I got the first movement in my left arm. I attribute it to their coming to town.

On April 11, 2014, it was time for me to be discharged. My husband came to pick me up, and I broke out of rehab with my husband driving the getaway car. I was on my way home to see my boys.

I was scared at how life was going to be at home. I was still in a wheelchair. I could not use my left hand. Things went surprisingly well. We began to create a new normal, but it was great to be at home. I had outpatient therapy 3 days a week. More movement came to my left arm, and I got cleared to walk at Hicks, Cheri Before Tbi 050914home with a cane. This gave me much more freedom.

Now I was right back where I belonged. I felt like I had missed out on so much. Things are definitely different than what I thought. My mom always told me life is what’s happening when you’re making plans. I intend to continue to make strides. I will settle for nothing less than who I was before. I have my family and friends to thank for that. Through all of this, I realized I became a person who lives in the NOW and not in the PAST or the FUTURE. And I now know that even the best plan can be broken.

 

Thank you, Cheri.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

Caregivers SPEAK OUT! . . . . . . . . . Kristin Olliney

 SPEAK OUT! – Kristin Olliney

by

Donna O’Donnell Figurski

Kristin Olliney with her daughter, Isabella, (age 4 1/2) on the day Isabella woke up from her coma. Kristin says, “It was the happiest and best day of my life.”

 

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

Kristin Olliney

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

Just south of Boston, Massachusetts, USA

3. What caused your survivor’s TBI?

Sudden acute encephalitis of unknown etiology

4. On what date did you begin care for your TBI survivor? Are you the main caregiver?

Our journey began on November 25, 2010 (Thanksgiving night).

How old were you when you began care?

I was 31 years old, and Isabella was 4.5 years old

5. Were you caring for anyone else at that time (e.g., children, parents, etc.)?

No, I was a single parent to Isabella.

6. Were you employed at the time of your survivor’s TBI?

No, I was laid off about 18 months before Isabella got sick.

If so, were you able to continue working?

N/A

7. Did you have any help? If so, what kind and for how long?

I was a single parent from the day Isabella was born. I have always been her sole caregiver.

8. When did your support of the survivor begin (e.g., immediately – in hospital, when survivor returned home, etc.)?

Isabella was 4.5 years old at the time, so I was already supporting her.

9. Was your survivor in a coma?

Yes, Isabella was in a drug-induced coma and then her own coma. The total time was 6 days. On the 7th day, she woke up. That was the best day of my entire life.

If so, what did you do at that time?

I never left Isabella’s side. I spent the first 73 hours without sleep because, if she was going to die (which she was supposed to), I didn’t want to miss a single second. I eventually collapsed, and I was forced to sleep. After that, I lived off coffee, and I took sporadic naps.

10. Did your survivor have rehab? If so, what kind of rehab? (i.e., In-patient and/or Out-patient and Occupational, Physical, Speech, and/or Other) How long was the rehab? Where were you when this was happening?

Yes, Isabella went to In-patient rehab [occupational therapy (OT), physical therapy (PT), and speech therapy (ST)] for 15 days post brain injury. She was there for only 13 days, due to my insurance. I was with her the entire time. Isabella is currently still receiving Out-patient rehab for OT and ST. Her PT ended last summer. Isabella also did aquatics therapy for a few months.

11. What problems or disabilities of your TBI survivor required your care, if any?

Isabella requires 24/7 care due to her extensive medical needs. She has a cognitive disorder due to her brain injury. Isabella has debilitating hallucinations (not psychotic) and anxiety, which causes multiple panic attacks every single day. She has migraines and tics. Isabella has sensory issues and Obsessive-Compulsive Disorder (OCD). She has learning difficulties. Isabella has aggression due to her inability to control or regulate her mood, emotions, and behavior. Isabella has speech difficulties, especially in word retrieval and expressing herself. Isabella also needs help with daily living skills, such as using the bathroom, getting dressed, showering, using the stairs, teeth brushing, etc. Isabella also suffers from various types of seizures and many other things that require around-the-clock care.

12. How has your life changed since you became a caregiver?

I was already Isabella’s caregiver. Prior to her brain injury, she had some medical issues, including life-threatening allergies to food, an immune deficiency (and another more serious one diagnosed post brain injury), and a few other conditions. Once Isabella got sick though, everything changed because I was parenting and caring for an entirely different child. It was like completely starting over.

Is it better? Is it worse?

It is different. It is challenging. It is amazing. It is heartbreaking. I wouldn’t want to be anywhere else. I want to be the one caring for my child. She needs me more now than ever before.

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

I miss the Isabella that I used to have, although I love the Isabella I have now more than I ever knew was possible. I miss our carefree, social, active life. Isabella is worth it though.

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

I have learned the value of life and how in an instant it can all change. It is both a blessing and a curse to know how fragile life really is. I appreciate the small things that most can’t value unless they have come close to losing it all. I cherish each laugh, each silly joke, the smiles, hugs, and kisses, and hearing Isabella say “Mommy,” and I notice things like the sunset (or, in our case, the sunrise too), the way flowers smell, etc.

15. What do you like least about TBI?

It’s the one of the most rewarding, yet most heartbreaking, journeys that you can go on. I hate that it has robbed Isabella of the life she was meant to have. This journey is also extremely isolating. I chose to focus on the positive and the blessing that I have, which is Isabella’s still being here.

16. Has anything helped you to accept your survivor’s TBI?

I have always been a single parent, so I had no choice but to accept it from the start. I think that was a blessing. Writing my bi-monthly blog, “Mommy of a Miracle,” for the Brain Injury Association of Massachusetts has helped me give a voice to our journey. I also started a Facebook support group, “Parents of Children with Brain Injuries,” which has helped me know that I am not alone. I knew statistically speaking that I was not the only parent with a child who has a brain injury, and yet I couldn’t find anyone.  This group has been the most amazing support for me.

17. Has your survivor’s injury affected your home life and relationships and, if so, how?

Yes, how could it not? Brain injury changes not only the survivor but also the caregiver as well. Our home life is very structured and centered completely around what helps Isabella be successful. It has changed my relationships tremendously. In the face of a life-altering event, you learn quickly who is going to be there and who isn’t. I would rather have a few people whom I know I can count on than a whole lot of people who will just disappoint.

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

Yes. Isabella and I had a very active social life. We were never home. Friends and family were always a huge part of our life. Now it is not possible, due to the extensive care that she requires and her instability. I no longer have the time to invest in one-sided friendships. We are not able to attend parties, get-togethers, events, and the like. Phone conversations are no longer possible. I only get to see a friend or a family member if he or she comes by at night when Isabella is asleep in bed.

19. What are your plans?

I live day-by-day. I take each day as it comes. Looking beyond that is too difficult.

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

I hope that Isabella is doing better and stable. I hope that we are able to enjoy more things in life. Personally, I want to have a nonprofit organization to specifically help parents of children with brain injuries. I hope to be on the floor of congress advocating for change, for funding for research, and for additional resources for brain injury survivors and their caregivers.

20. What advice would you offer other TBI survivor caregivers?

Always follow your gut-instinct. You are your survivor’s biggest advocate. Stand your ground. Your survivor is not ever going to be who he or she once was. The faster you are able to come to that realization, the better off you will be. This is a journey, not a race. Take life one day at a time.  You are not alone.

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

Kristin Olliney with her lovely daughter, Isabella – 8 years old. 2014

Thank you for this amazing opportunity to tell people a little bit more about our journey.

 

Check out my blog: In An Instant Your Life Can Change Forever: Brain Injury Association of Massachusetts Blog – Mommy of a Miracle

Check out this video for Brain Injury Awareness.

 

Thank you, Kristin, 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 Caregiver Interview Questionnaire for a copy of the questions and the release form.

(Photo compliments of Kristin.)

Disclaimer: The views or opinions in this post are solely that of the interviewee.

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