Survivors SPEAK OUT! Juliet Madsen
Donna O’Donnell Figurski
2. Where do you live? (city and/or state and/or country) Email (optional)
Parker, Colorado, USA email@example.com
3. On what date did you have your brain injury? At what age?
I had three strokes (2004, 2009, and 2010), and I have a traumatic brain injury (TBI). I was 33 in 2004.
4. How did your brain injury occur?
My brain injuries are complex: heat strokes complicated by a traumatic brain injury in Iraq in 2004. I was being moved to a secondary location because of a heat injury, when there was a series of explosions on the highway. So, I have the illustrious honor of having both a brain injury as a result of heat injury and then a traumatic brain injury. This creates a problem for the doctors because I do not fall into any one category. I have very complicated neurological issues.
5. When did you (or someone) first realize you had a problem?
My family and the people I was stationed with in Iraq realized there was a problem. I was not making much sense when I wrote patient notes and when I wrote letters home. Then my speech was becoming garbled. I exhibited a halting speech pattern, in which I had trouble “spitting out” words. I also had tremors, which made even the simplest tasks difficult. Manual dexterity issues, massive migraines, and balance problems caused my unit to put me on night shift and to adjust how and where I was living in Iraq. Then I was being transferred north where I could work in a more controlled environment when we were involved in a series of vehicle explosions. After that event, I was sitting with a few of the guys at the chow hall, and I said that “I didn’t feel well.” I suffered a seizure in the chow hall, and that started my slow trip home.
6. What kind of emergency treatment, if any, did you have?
I had emergency care to stabilize me in Iraq, then in a C-130 flying from Iraq to Kuwait, then again from Kuwait to Germany, and again to Walter Reed, and then to Ft. Bragg. Although I know I had care to treat seizures and stroke, I only have very few bits and pieces of my memory from that time.
7. Were you in a coma? If so, how long?
No, I was not.
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 have had rehab both as an inpatient and as an outpatient. I am in and out of occupational, speech, physical, and recreational therapies even today. I have gone in and out of these therapies, as my TBI symptoms change over the years. I have often described my TBI as causing “rolling blackouts.” The polytrauma team that treats me has been really good about getting me in to see the appropriate team.
9. What problems or disabilities, if any, resulted from your brain injury (e.g., balance, perception, personality, etc.)?
That is such a loaded question…. Initially I had left-sided weakness from the stroke, difficulty talking, balance issues, drop foot, short-term memory loss, major time perception problems, migraines all the time, and ringing in my ears. I was sound-sensitive. I have constant neck and head pain. I have hearing and vision changes (which the doctors tell me are a direct result of the TBI). I absolutely have personality changes. I was someone who always got along with people, worked as a paramedic, and did research. Now I have no concentration, I am angry with everyone, I am short with people, I cry easily, and I feel very defeated. Even with all of the incredible accomplishments in my life, I am disappointed in the perceived failures in my day-to-day life. I have had times since my brain injury when it is like I forgot who I was or what I have always stood for, and I hurt the ones who have always cared for me. I have major learning disabilities. I can’t do anything with numbers or time, and learning new information is extremely difficult – this from someone who graduated from college with honors. Concentration and accomplishing simple tasks are often very difficult.
10. How has your life changed? Is it better? Is it worse?
My life has changed 100%, but I can’t say that it is worse because I am still here. So, that is a good thing, but it is very different. I was a paramedic in the United States Army. I was always busy working, and now I am retired. I become tired and overwhelmed far too easily. I quilt for a living, and I make quilts for programs across the country. I am on the Board of Directors of a national non-profit organization that works with programs for the families of military and veteran personnel with TBI/PTSD (post-traumatic stress disorder). The organization provides other programs through recreational and activity-based services. This is a very different place from being a paramedic and saving lives.
11. What do you miss the most from your pre-brain-injury life?
I admit that I miss who I was before I was hurt. I miss being able to go to the store alone. I miss being able to be trusted with my own finances or being able to read a recipe and understand it the first time I read it. I had a very definite plan for my life, and my injuries changed all of those plans. I miss feeling like I really contribute to my family and to the world around me.
12. What do you enjoy most in your post-brain-injury life?
I try to enjoy simple things: butterflies, the pure joy of my dogs lying with me, my kids telling me that they love me, etc. I like learning new recipes, listening to music, or holding hands with my husband in case I can’t tomorrow. Basically, I try to enjoy this moment because I know that tomorrow isn’t promised.
13. What do you like least about your brain injury?
I would give anything to trust my memory and my body again. But, if I could have one wish, it would be to have my memory back. I have no memory of any of my kid’s proms, their birthdays, their graduations, etc. I wish I could just remember these events for their sakes.
14. Has anything helped you to accept your brain injury?
My family has helped me to accept my injuries because, although we joke around, they accept me for all that has happened. I was so angry and really emotionally crushed when I first came home. The only thing that I can always count on is my family, no matter what. The only other thing that has probably helped is time.
15. Has your injury affected your home life and relationships and, if so, how?
My husband, Peter, and I are so lucky to have each other. After twenty-three years together, I am thankful that this injury has not torn us apart, but it came very close. A TBI is exhausting for everyone involved, and I think that the first few years are spent in emergency mode – performing triage. Then as we started to get comfortable with how things were going, my brain “kicked us” – I suffered another stroke. We had a whole new series of issues and rules to learn. Peter and the kids have been incredible at supporting me. Although it has been a really rough road, we have been through it together. We are stronger because we are always together, and that part I am thankful for.
16. Has your social life been altered or changed and, if so, how?
Yes, I have actually lost friendships because of my TBI. I describe myself as a “golden retriever.” (I am excited to see you, but if you leave the room and come back in, I don’t know how long you were gone, but I am still really excited to see you.) It is because of this lack of the concept of time that I have lost friends. Also I wasn’t good enough at keeping in contact. I had a friend call me and tell me that I wasn’t an attentive enough friend. So now, I tell every potential friend this cautionary story. But to be honest, I don’t really try to make friends any more. Most people don’t understand me – or our family. Because of that, we are very private people. We don’t do a whole lot with others. It’s just easier that way. We would prefer to have lots of friends, but it just isn’t that easy.
17. Who is your main caregiver? Do you understand what it takes to be a caregiver?
My husband, Peter, is my main caregiver. I am so very thankful to him, in love with him, indebted to him, sorry, and every other adjective I can think of. I have moments of clarity when I see how terribly hard all of this is. It kills me that I have become a burden, and yet I am still his wife. I’d also like to say that I have had to watch my kids become my caregivers. They have taken care of me on too many occasions to count. It is incredibly hard on the entire family. They all suffer from PTSD as we go through this process. They all deserve so much more credit than they get for surviving this experience.
18. What are your plans? What do you expect/hope to be doing ten years from now?
I am ten years out from my injuries, but I am light years from my initial injuries. I hope to continue my physical improvements, and I would like to recover better in terms of my learning disabilities and mental health. I would like to go back to school and get a degree in Art Therapy to help other veterans and their families with TBI and PTSD. In ten years, I would really like to be working with military families through art in my own program. I would also like to have published my own quilting book.
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.
There are so many setbacks during the recovery process. I never seem to be where I am supposed to be. But, I never stop because there are no set rules and no one is saying where you have to be. So, just keep going – never give up.
20. What advice would you offer to other brain-injury survivors? Do you have any other comments that you would like to add?
I think the worst thing I do to myself is to constantly beat myself up about what I could have or should have done to either prevent this or to change it now. It kills me to know where my family is and how my family has been changed forever because of all of the things that happened since 2004. I would give anything to change it, but I can’t. On good days, I can accept it and move past it, but on bad days, I can’t. It hangs over me and suffocates me. It is my wish that others out there like me hold on and cherish the life you have because no one can live it like you can.
(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 Juliet.)
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