Donna O'Donnell Figurski's Blog

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TidBits About Donna #41 Living Nightmare — TBI

Living Nightmare  — TBI

I’m living a nightmare and I’m glad that I am. Sounds strange . . . huh?  Who would want to be trapped in a nightmare every waking moment? Well, I don’t want to be trapped here, but here I am nonetheless. I would prefer to take my happy, secure life back with my husband, David . . . taking long walks each evening after dinner, going out on the weekends for our Friday and Saturday night dates. Strolling . . . forget strolling . . . he never strolled, through the parks on Sunday mornings in all seasons to our favorite breakfast restaurant, The Petite Café. But on January 13th, 2005 our lives burst . . . when something burst inside David’s head. The doctors call it a TBI, a Traumatic Brain Injury. I call it a Living Nightmare.

If I weren’t trapped in this nightmare, it would mean that David did not survive. Then it would be another nightmare altogether, but a nightmare just the same. So that’s why I can say that “I’m living a nightmare and I am glad that I am.” I can’t imagine life without my husband, and although David is with me, life has changed.

David wasn’t expected to survive his first brain surgery. His head filled with blood. He was in excruciating pain and the paramedics rushed him to the nearest hospital – well, they didn’t exactly rush him. Weren’t they supposed to? In every movie I’ve ever seen, the paramedics ran. They always seemed to have a sense of urgency about them and the situation. Our paramedics ambled. They ambled around their truck to get some equipment. They ambled slowly, oh so slowing up the stairs to the bedroom. Slowly, oh so slowing, they asked David what was bothering him. I wondered why they couldn’t comprehend the urgency. David was unable to speak. He was writhing on the bed, holding his head, sweat pouring from his body, and he was screaming. When they finally placed the oxygen mask over David’s face, relief came. He became silent and I was grateful. He looked peaceful, but I later realized that he had slipped into a coma. This was bad, but at least it brought him some peace.

When David arrived at the hospital emergency room, the doctors assessed the situation, sent him for a CAT scan and decided to perform immediate surgery to evacuate the blood from the massive hematoma. But there were more surprises in store. An aneurysm was found, which needed to be removed. An AVM (Arterial Venous Malformation) was also discovered. This also needed to be excised. Three emergency brain surgeries were performed on my husband in less than two weeks.

For each surgery I was told that David had a small percentage to live. He may not survive. Still, I had to sign on the dotted line. Me! David’s life was in my hands. A very scary thought! His life was in his surgeon’s hands, too. Many of the doctors that worked on David at Columbia Presbyterian Hospital in New York City were former students of his. During medical school they had taken his Med-Micro course. (Microbiology for Medical students) I remember thinking. “I hope David taught them well and I hope that they learned well. For now David’s life was in their hands, too. I wanted to ask David’s opinion. Did he want this surgery? We always confer on important decisions, and this seemed to be the most important one of our lives. I wanted to shake him awake from his coma. I needed to know if I was making the right decision. I needed him to help me, but he lay sleeping in a coma and he remained that way for nearly four weeks and I had to make the hardest decisions of my life – alone. And so I signed – over and over and over again. I had no choice. If the operations were not performed, David would surely die and I could surely not live if he did.

Although David is a survivor, he battled three brain surgeries, the nightmare continues. The brain trauma affected all of his motor skills and has reduced his motility to almost an infantile stage. He has to relearn to walk. His balance was and is still greatly affected. Although he has made significant gains in this area, he still has a long road to travel. For the first month after the surgeries, David remained in the NICU (Neurological Intensive Care Unit.) While there, the right side of his body was paralyzed. Within four weeks he became more aware and he slowly regained some movement. Then he moved to the Kessler Rehabilitation Center in East Orange, New Jersey, where he began the struggle to relearn to walk. At that time the best way to describe David was like a rag doll. He had as much balance and coordination as Raggedy Andy. Even with a walker, David could topple over with a breeze. When, nearly a year later, he began to use a four-pronged cane, he was still very shaky and needed to be shadowed wherever he went. Now David is gaining strength and progress is steadily being made, though it is taking a very long time. David is able to walk on his own, but picture Star Wars CP3O. His walk is very robot-like and so concentrated. He is still unsteady and can easily lose his balance, and still needs someone to shadow him in the outside world, but he is able to maneuver himself around our home rather freely. That’s not to say that I am not worried every waking moment.

David’s speech was also very affected. It was near impossible to understand him after they removed the trache. His voice was raspy and his words were garbled. Fortunately, today, although his voice is still gravelly and his speech is still very pronounced, he can be understood, but he may never regain the same beautiful voice he had before the TBI. Sometimes, I call him marble-mouth or marshmallow-mouth because sometimes it seems as if his words are climbing over marbles or marshmallows to get out, but that only happens when he is really, really tired or when he is actually eating marshmallows. “It’s hard work to talk,”  he tells me. I know! I see his silent struggle. Most folks take everything for granted. It’s natural. It’s normal. It’s not until you lose something, that you realize how valuable it is. It’s not until you have to struggle to attain something that its meaning is redefined. It’s hard work to open a door or brush your teeth when your hand won’t cooperate – when it shakes uncontrollably with ataxia. It’s hard work to stand up, or sit down or take a step when you have no balance. It’s hard work to take a sip of water, eat a bowl of ice cream or even sleep when you can’t swallow properly; when you fear aspiration or choking to death. It’s hard work to see double, blurry, tilted images 24/7 . . . well maybe 17/7, (I don’t think David dreams in double, blurry, tilted images) or it’s hard work to read a computer screen with the font raised to 24 with the images bouncing around the screen. Make them Stop! It’s hard work even going to the bathroom – judging the time – since it takes so long to get there (balance) unfastening the belt ( ataxia.) Throw in a little neurogenic bladder disorder and paralysis and it makes for a lot of uncertainty. Living with TBI Traumatic Brain Injury is simply HARD WORK!

Dr. David H. Figurski Professor – Columbia University talking about Actinobacillus actinomycetemcomitans or A. actinomycetemcomitans (“Don’t ask me. I haven’t a clue. I can’t even pronounce it,” said Donna. “I just call it by its short name — AA.”)

David recently presented an hour-long speech at a scientific symposium in Colorado. It was very well received and he enjoyed many compliments, not only on the results of his work and that of his students, but many of the scientists made a point to tell him that he was completely understandable. One professor even invited him to speak at her university in the near future. That was the final vote of confidence. Then shortly after David’s  Colorado talk, he also presented his work at a scientific symposium at UCSD the University of California at San Diego in honor of his post-graduate mentor, Dr. Don Helinski. Don was retiring after 41 years and David, as well as many of Don’s students and post docs gathered at the university to honor him in retirement. David received many accolades as many professors, some friends, many colleagues in his field congratulated him not only on his presentation and his delivery, but also on his determination, motivation, and progress through this very difficult and trying recovery time.

David also struggles to overcome ataxia in his right hand. He recently met and shook hands with each of my first graders. They laughed, all in good humor, while he tried to steady his hand long enough to grasp each of theirs. That hand is so out of control.

Then one night after dinner, I laughed as I watched Monique, a friend of ours, and David try to put together three magnetic rods and three magnetic balls to make a triangle using ONLY his right hand. I laughed as his hand jiggled all over the place and the balls rolled away from him; and I laughed as Monique slapped my hands when I tried to help him catch the balls. I laughed as I tried to do this task and found it not as easy as it sounds and David laughed at me. I laughed and Monique laughed and David laughed. And that’s how we get through life in the Disability Lane. Without a sense of humor, this nightmare would be unbearable.

David has a good attitude and he rarely lets anything get him down. (Oh, he does sometimes, but it’s rare. I even lose it sometimes, too, but don’t tell anyone.) A good attitude is essential because there is no easy, fast way out of this abyss. I glimpse a light at the end of the tunnel. It’s dim for certain, but I do see a glimmer. It’s just that I have no idea how long this tunnel is.

I think of this nightmare like a traffic jam on the interstate. You are driving along at 65 miles per hour – maybe a little faster – cruising – taking every bend and curve in stride. Life is good!  Then POW! Hit those brakes, switch gears and wait. You know something is ahead – an accident, construction,  a little glitch in your day/life. You know you will get to your destination, though you may be a little late. It’s just an annoying interruption in your trip and you know you have to wait it out. You know you have to inch along. You just don’t know how long the interruption is going to take. And so you wait – patiently or maybe not so patiently, but you wait nonetheless.

In David’s case his jam is his brain trauma – a major accident – and it’s going to take a LOT of reconstruction of brain cells and nerve cells before he maneuvers his way out of this jam. Patience is key. It’s not easy, just as it’s not easy to sit in a traffic jam not knowing when you will arrive at the end of the glitch, and be able to smooth sail again. And so the tunnel is long – long, like the Lincoln Tunnel in rush hour traffic; long, as I peer around the edges of the cars and busses in front of me; long, as I strain to see around each bend in the tunnel longing to see the light; long, when I finally do glimpse light only to realize it is a reflection and not REAL. LONG! LONG! LONG! – but knowing that it is there somewhere in some time.

And so, David and I continue to travel this long road of disability until we reach the light at the end of our tunnel.

Donna and David enjoying a little Mexican food and atmosphere in Encinitas, California Summer 2006

And so the nightmare goes on and on and on, but through it all we have each other and for that we are very fortunate. BUT, we won’t accept this plight. We will battle and we will fight and we will WIN!

So THERE!

(Photographs compliments of ME.)

(Clipart compliments of Bing.com.)

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August 5, 2011 - Posted by | TidBits About Donna, Traumatic Brain Injury - TBI | , , , , , , , , , ,

13 Comments »

  1. Surrounded by his supportive family and friends, David will not only continue to survive, he will thrive! Lots of unused brain cells in all our heads, waiting to be trained to take over for the damaged ones.

    A beautifully written piece. Thank you for sharing with us, your readers.

    Comment by Kathleen Richardson | August 5, 2011 | Reply

  2. Thank you, Kathleen, for your kind words.

    Donna

    Comment by donnaodonnellfigurski | August 8, 2011 | Reply

  3. I completely understand. My husband has no physical disabilities from his TBI, but he does still struggle. He isn’t the same man that I married. But in some ways that’s a good thing. In the other ways, you just learn to adjust. There is no point in wishing the old husband would come back because he is gone forever. Now, I get to enjoy the miracle that God has given me instead.

    Comment by Casey Bachus | January 21, 2014 | Reply

  4. Casey, you have a wonderful attitude, and I agree. Though I sometimes find myself wishing my “old” husband would return, after 9 years, I’m not sure I’d recognize the former him. I like this new guy, but still miss the original mold – the one I fell in love with at age 16.

    Thanks so much for reading my post. There are tons more here. Best wishes in your “new” life.

    Donna

    Comment by donnaodonnellfigurski | January 21, 2014 | Reply

  5. I had a question for you in regards to the ataxia – what have the doctors said to you in regard to future prognosis specifically with the ataxia? (If you would like to reply to me privately, that is fine.) I ask because my doctors appear to have no real knowledge of ataxia post-TBI beyond naming what it is that is happening… I am presuming, like everything else TBI related, that each brain heals at its own time, in its own way, and to its own extent. However, any additional insight that you could give me would be appreciated!!

    Comment by Ellie | February 10, 2014 | Reply

    • Ellie, I am so sorry to not have gotten back to you. It’s been a crazy couple of weeks. I will as soon as things settle down.

      Donna

      Comment by donnaodonnellfigurski | March 1, 2014 | Reply

    • Ellie,
      David’s neurologist continually checks the strength in David’s right hand, the one affected with Ataxia. It’s definitely strong, but it has a mind of its own. As you probably already know, doctors don’t make predictions with brain injury-related disabilities. I think they truly do not know. I’ve been told that the brain can heal itself or more accurately it makes new pathways. Unfortunately the neurons grow so slowly and it takes a very, very long time.
      I wish I could offer you more knowledge on this facet of TBI, but I really can’t. Thanks for stopping by my blog. Check back often or better yet subscribe.

      Wishing you all the best,
      Donna

      Comment by donnaodonnellfigurski | March 3, 2014 | Reply

  6. I always enjoy reading your blog but this one is extremely touching. Thank you for reposting it. Give David our love. You are both amazing!!!!

    Comment by John & Patti Jug | March 1, 2014 | Reply

  7. Thanks for sharing. My husband too has a TBI and although he can walk and talk, the area damaged for him is the area that deals with short term memory and personality. Although he had changes at the time of his accident, he has chronic pain, headaches and I have noticed significant personality changes through the years. He had a crane hook and block fall on his head in 1992. It has been a long, hard, frustrating road when I times I wanted to quit but I can’t because I love him and our family and I can only pray everyday that we can through this. Thanks for sharing, it’s reassuring to know I am not alone in feeling that I am living in a nightmare but hopeful that it will get better.

    Comment by Michele | March 2, 2014 | Reply

    • Michele, what a terrible accident that has affected your life for so long. Each brain injury is so different. I’m sure you know that. You have been traveling this road longer than I. Though it is definitely frustrating, I am so glad my husband is still with me. He’s my best friend.

      All best, Donna

      Comment by donnaodonnellfigurski | March 3, 2014 | Reply

  8. I absolutely love your honesty and positivity! It is refreshing. My grandma had Ataxia….not TBI related. She died in 1999 due to complications. In 2000 a study was conducted that there is a link to Ataxia and gluten allergies. Her’s was a brain stem deterioration which they told us was hereditary.

    Comment by Bridgett Shoemaker | March 2, 2014 | Reply

    • Bridgett,
      Thanks you for reading my post and your kind comments.
      The connection between gluten and Ataxia is curious. My husband’s right hand shakes a lot, but he challenges it and continues to do things with it despite the shaking. It has improved some, but not to our wishes. Oh well, we just keep trudging on. I’m sorry about your grandma.

      All best, Donna

      Comment by donnaodonnellfigurski | March 3, 2014 | Reply


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