SPEAK OUT! – Kristin Olliney
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)
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?
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?
Thank you for this amazing opportunity to tell people a little bit more about our journey.
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.