TBI – Survivors, Caregivers, Family, and Friends

SPEAK OUT! – Marie Cooney

by

Donna O’Donnell Figurski

 

Cooney, Marie Sailboat

Marie Cooney – 1st Sail post-TBI

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

Marie Grace Cooney

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

Saint Paul, Minnesota, USA

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

June 29, 2005, at the age of 44

4. How did your TBI occur?

I had been a professional stagehand for approximately 20 years. We were setting up for a Carlos Santana concert. Years later, I learned that it was a very unusual setup, where two diamond-shaped trusses were to be built onto the stage. But when they were flown out, they extended over the audience. A co-worker had just yelled that it was a very dangerous situation. As I crossed from the stage-left side of one truss to the other side towards center, I noticed in a flash that there wasn’t any stage below me. A friend told me that I tried to cover my head protectively as I flew off the edge. I landed head first on the cement floor of the Xcel Arena, and many people thought I was dead. Another friend jumped to my aid to slow down the profuse bleeding. When my body went into seizures, those who witnessed the injury knew I was not dead. Thank God, the paramedics arrived within minutes, and I was transported to Regions Hospital’s Trauma Center.

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

Apparently I yelled out a horrible cry, which got the attention of everyone within earshot. My friend Colette, who tried to warn me of the imminent danger, closed her eyes and prayed, “Please God, don’t let Marie die!” Years later, my friend Michael told me that he heard my head crack like a bowling ball being smashed on the ground and that I “danced the Mariachi without the music.” My friend Melissa jumped to my aid to slow the bleeding. Aaron assisted her when I started to come to and tried to get up. Jeff, Chip, and other stagehands told me not to move – that I was hurt. I later learned some were afraid I might have broken my neck or injured my back. Matt was the first stagehand to reach 9-1-1 on his cell phone, though I understand that many others tried simultaneously. I do NOT remember any of this, though I have been told by friends that they will never forget.

I realized there was a serious problem when I opened my eyes at the hospital and saw my friend Sherri. “What are YOU doing in a hospital?” I asked. “No, no, no!” she corrected me. “I’m here to get your keys!” “Why?” I asked. “I need to take care of Tucker….” “You’re not going anywhere!” she explained. As I touched my head, I felt tremendous pain and saw blood on my hand and myself. I realized I was the one in the hospital!

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

I was transported to the Regions Hospital Emergency Room. There I was stitched up; they did scans of my head; and I had X-rays taken of my neck, back, and hands. I was then transferred to their Trauma Center, where a nurse was always in my room. Unfortunately, I was only kept there for two days because I seemingly made sense, which I don’t remember, and I could go to the bathroom by myself. I also think they might have thought I lived with a person – instead of my dog, Tucker! Melissa and Sherri kept asking if they could call my Mom. I was too scared to tell them that all I could remember was the picture of the rotary-dial phone we had when I was a child and the number. I could not remember where my mother or either sister lived. I didn’t know I had such a thing as a cell phone and hoped I’d figure it out when I got home. I kept repeating over and over, “I had a previous head injury. My records are at Noran and Abbott.” Then I’d fall asleep again, only to tell the next person the same thing at the next location.

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, physical, speech, or other)?

I wish I had done rehab at Regions Hospital. But when the doctor wrote orders for physical therapy, I asked if I could go to some place closer to home – to where I could walk. I wish he had had the sense to tell me I had a serious injury and needed a hospital familiar with TBIs. I also went to counseling in the town in which I lived. I eventually went to a work hardening program, where they evaluated both my physical and my cognitive conditions. As an outpatient, I saw a neuropsychologist and speech therapist at Regions. I was also treated by a neurologist, physiatrist, migraine specialist, urologist, optometrist, psychiatrist, neuro-ophthalmologist, and various counselors who included EMDR (Eye Movement Desensitization and Reprocessing) and PTSD (Post-Traumatic Stress Disorder) therapy techniques and DBT (Dialectical Behavior Therapy). Eventually I was a resident at Courage Center in Golden Valley, Minnesota, as part of their Chronic Pain Program. A number of months later, I also participated in the Community Reintegration Program (for people with brain injuries) for only four of the typically six-month program because of medical denials by State Fund Mutual, the workers’ compensation insurance company.

How long were you in rehab?

I am nine years post-injury. I see my neurologist and my psychiatrist   approximately every six months. I also see my neuro-ophthalmologist as needed for optic-nerve injections for eye pain.

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

I have severe sensitivity to lights, sounds, crowds, and chemical smells. A visor and dark amber, Churada-framed, protective eyewear are essential parts of my daily wardrobe. I carry various types of earplugs to dampen what is called “auditory discrimination” – the inability to filter out foreground and background noises. I’ve peed in my pants in the presence of Clorox. I have been told this and the extreme nausea could have been the results of petite seizures. I am, or have been, on various anti-seizure, anti-pain, anti-depression, and anti-anxiety medications. I have also been treated for migraines. My balance has been helped and my pain has been lessened by pool therapy. I have experienced many emotional changes throughout my recovery process. I would consider myself among those with heightened emotions post-TBI, as opposed to having dampened emotions. Greater self-awareness and an ability to deal with fluctuating emotions have come with time.

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

At first, “everything” was worse. I wanted the “old” me back, at least some of me. I didn’t ever want to be a stagehand again. Then I wanted to. Then I was afraid it could kill me. I thought the oversensitivity ruined “everything.” I used to sail competitively. I wanted to be able to sail, but I knew a knock to my head could kill me. I wanted to move back to the East Coast, where I was raised, but my medical treatment and my legal help were here. I was a ship without a rudder, lost at sea, and escalating depression was overwhelming me.

Things have gotten better, as I have learned to use compensatory strategies to live my life as it is now. I have had many supportive people who have helped me with many aspects of my life. “I have reclaimed my life!” I proclaimed one day. “Work comp no longer owns me!” I told my counselor, “I bought a sailboat!” Although I didn’t return to competitive sailing, this was an extremely important step for me. In ways I was now capable of, I was reclaiming parts of my life that I had loved before. I wasn’t afraid of denials or surveillance by workers’ compensation. I was choosing life for me! And now, I have a wonderful new partner, Nanette, who loves me just the way I am and is supportive in every way, without being “my caregiver.” We care about each other tremendously.

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

  1. Sailing competitively with my friend Steve and others at the Wayzata Yacht Club.
  2. Working in theater, especially running a spotlight and seeing all types of shows!
  3. Friends and family. I missed my nieces growing up. I lost touch with too many friends, until Facebook.
  4. Being “fearless,” not in the sense of being cocky, but rather in being totally comfortable and at ease.
  5. The wonderful sense of spontaneity. Also not being so tired so much of the time.
  6. My dog, Tucker!
  7. The feeling that I could do anything I wanted and go anywhere I liked.
  8. It is hard to be a high-achieving person who is really smart, but who has a TBI and feels so dumb.
  9. I started arguing with people I love. I felt so misunderstood, especially in the first few years.
  10. Writing plays and being active in the arts community, in addition to my theater career.

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

  1. Choosing to sail again and sharing that love with others.
  2. I didn’t know if I would ever have a partner again. Amazingly, I met Nanette! There is hope – even if relationships end.
  3. My dog, Rico, and Nanette’s cats, Shiloh and Hildy!
  4. Making new friends; getting back in touch with people I thought I’d never see again.
  5. Hugs and kisses. Forget formalities! Let me hug you tightly! So many friends have been hugged or have hugged me, now that I have returned to stagehand work in a very limited, but fulfilling, capacity.
  6. Joy in life again – even if it is simpler. (A brush with death makes simple things seem to be much more!)
  7. Renewed relationships with my family, who didn’t understand so much at first. I traveled to Ireland with my Mom recently.
  8. A spiritual awareness that we are not alone. I “experienced” my Dad during my first head injury, even though he had died years earlier. I would not admit this at first, but now I do freely.

13. What do you like least about your TBI?

Extreme hypersensitivity, fatigue, predictably unpredictable days, difficulty making plans.

14. Has anything helped you to accept your TBI?

Time, time, and more time. Rest, rest, and more rest. Others with TBIs. Courage Center friends and staff. A sense of humor. My lawyer, Gerry, who helped put things in perspective when “everything” seemed out of control. Writing a blog for Lash and Associates. Co-facilitating a brain injury support group. Reclaiming scripts.

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

I lost my housing multiple times. I didn’t know if landlords were trying to get around service animal laws, if my anger was too piqued, or if I lost my sense of diplomacy. Courage Center and HUD tried to help me, but I still had to move, which was a bigger mess each time. Now I can take partial responsibility, but it is really important to know your rights, the laws regarding reasonable accommodations, and anti-discrimination laws. Losing my housing caused extreme difficulties with my family and some close friends. I felt blamed and condemned for things that were not my fault.

Now I live with my partner, Nanette, in Saint Paul. We also have my sailboat in Duluth, where I can sail within the safety of Duluth Bay or out on Lake Superior, depending on the weather and my crew. My relationships with my family have improved with time, and I’m back in touch with various friends. However, I have also lost some friends, which is sad. As Nanette says, “Communication is key!” Try to keep the doors to communication open, no matter what part of the TBI equation you find yourself in.

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

It is hard to make plans with others. For the best results, they need to understand and accept that I might become extremely fatigued, need to take medications, rest, or even go to sleep. After six years, I have been able to attend some theater shows. I ask people to stay, even if I need to leave, so I can live vicariously through them. Loud music, concerts, dances, and strobe lights are all OUT! Quality time with smaller groups is better than lousy time with large groups. At family events, I plan breaks and rest periods.

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

I am a person with a Traumatic Brain Injury, and I am my own caregiver. Through others I know, I have learned to understand and appreciate the dedication, love, fatigue, frustration, and various emotions that caregivers also experience. Nanette is someone who cares deeply about and for me, as I also care deeply about and for her. But it is important that we each have some sense of autonomy and a shared life, without Nanette’s being in the role of “caregiver.” Having said that, I must also confirm she is the most understanding, accepting, and supportive person in my life.

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

Marie Cooney Playwright

Marie Cooney – Playwright

We laugh about this! I love Nanette, but I absolutely cannot tolerate the Minnesota winters. She has been telling me it’s okay to leave and calls me her “Wandering Pirate Girlfriend.” I finally believe her. I plan to spend as much time as possible doing things we love together, especially attending many smaller theaters and dance productions, which are not as assaulting. I enjoy traveling between Saint Paul and Duluth and will be getting away for at least some parts of the winters. I want to return to being a playwright, to participate in the Playwrights’ Center in Minneapolis, and to travel to wherever the production of scripts might bring me. In ten years? I will be almost twenty years post-TBI. I could be doing almost anything – with rest, as needed!

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.

Don’t be in such a rush to get back to your previous life or move on from your injury. Time, time, time! Take the time you need. Rest, rest, rest! It’s a long road to recovery. Laughter truly is the best medicine. There will be good days, and there will be bad days, and there will be good ones and bad ones again. Stay in the hospital or in rehab as long as you can, and get as much help as you can from the people who really know about brain injuries. (People who say they are “experts” aren’t always telling the truth.) Get a great QRC (Quality Rehabilitation Consultant) who is recommended by your lawyer, not by the workers’ compensation insurance company.  Don’t take it personally – you are in a system that is designed to cut you off as soon as possible. “Powerhouse” attorneys can be “slaughterhouse” attorneys. Get personal recommendations. A great TBI attorney will listen to and respect you, not treat you as someone who doesn’t know anything. Offer reasonable accommodations, as needed. If an attorney won’t work with you, he or she won’t work for your greatest good, so run the other way.

20. What advice would you offer to other TBI survivors?

Get all the help you possibly can from every source possible. A physiatrist or a PMR (Physical Medicine and Rehabilitation) specialist is an important part of your team. If you don’t have one, get one. Keep a sense of humor. Admit when life’s unbearable. Believe that it will get better.

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

Cooney, Marie Sailboat 2

Marie Cooney – Skipper – pre-TBI

In our support group, NOTHING IS OFF THE TABLE! Everything is open for discussion, no matter what. Some thing you are afraid to discuss might be the very thing others need to talk about. Take chances. Share all your feelings. Accept tears of sadness and tears of laughter. Both are welcomed and accepted, as is everything in between.

 

Thank you, Marie, 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 Marie.)

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.

 

 

 

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