The Move

After the doctor left with the agreement that Mark’s update reports would take place in the conference room in the future, I returned to his bedside. I held his hand, hoping to feel his spirit. Where are you Mark? Are you trapped between two worlds? Am I going crazy and imagining movements just because I want to see them? A thought came to mind, or possibly his spirit answering me, all energy is going to fight the infection and blood clot. Maybe, a coma is the best place for me right now.

Intermixed with all the worries, the improving numbers in his red and white cell counts were triumphs in my mind, along with his temperature and heart rate going down. With each passing day I was getting more and more anxious to move Mark to a rehab hospital closer to home.

The therapists were getting Mark out of bed two or three times per day now. After several weeks of lying in bed it was refreshing to see him sitting in a reclining wheelchair. Sometimes when his eyes were open, there was a blank stare. Other times I could see he was focused on something. However, every time he was moved, his eyes grew wide and he looked terrified. I felt and understood his fear. He had no control over his body and where it would land. I knew he was aware of the movement; I saw it in his eyes. In a soothing voice, I tried to reassure him everything would be okay.

One day I walked from one area in his room to another and noticed his eyes followed my movement. I walked a little farther away and lost his focus. When I got closer to the bed, I knew he could see me again and as I moved from the left side of the bed to the right side, he lost focus again. As I watched him from his right side, it appeared to me he was searching the left side to find me. I tested this a few times, moving from one side of the bed to the other. I was positive he could see me on the left side, but for some reason could not focus on me when I was on his right side. Every day I read to him and we listened to his favorite music on cassette tapes.

Christopher and Katie were now out of school and my mother was with them most days, but on the morning of June 12, 1991 she came early to be with me for the doctor’s report. Quickly walking towards the conference room she said, “Hi Mark,” as she walked past his room. Mark turned his head towards the door, obviously recognizing his name and her voice. A nurse was following behind her and somehow missed seeing his reaction, or at least wouldn’t admit to seeing it. In the conference room Mom told the doctor she was sure he recognized his name and her voice and he responded. The doctor and nurse would not agree that Mark’s response was worthy of any progress notation.

I was anxious to move Mark to Western Rehab Hospital for several reasons. It had a wonderful reputation for specializing in spinal cord and traumatic brain injuries and it was close to home. They only had a few beds available at the time and I was worried they’d be full when the doctor released him from McKay-Dee Hospital. The sixty mile daily commute to and from the hospital became increasingly difficult with the kids out of school and the frustrations the doctor and I felt for each other were becoming intense.

“When will Mark be released to go to Western Rehab,” I asked again.

“I don’t feel he’s should be moved yet.”

I reiterated my reasons for being anxious to move Mark and recounted all the positive improvements we had seen in the past ten days, including the response my mom had just had.

Exasperated, he said, “Well, if you’re so smart, why don’t you take him out yourself?”

Surprised by his statement, I asked, “Can I do that?”

“Yes. I don’t recommend it and you’ll have to make the arrangements yourself, but you can do it.”

“I’ll do it,” I exclaimed.

I was elated when I called Western Rehab to verify they had a bed for Mark. They helped me arrange for an ambulance to transport him there and requested the medical records from the hospital. I hadn’t been this excited since the car accident. While Mark was sitting up in the reclining wheelchair, I trimmed his beard, shaved his cheeks and gave him his first haircut since they shaved half of his head for the shunt placement, which had now been removed. All trimmed and shaved he looked better than he had in seven weeks and I was confident he was ready to move on to this next stage of his recovery. That night Dad came by the hospital and I asked him to give Mark a special blessing that all would go well with the transfer.

Saying good-bye to the Call family, whom I had shared the McDonald House with and the Peek family, who were residents of Ogden made leaving the hospital hard. These two families had become my hospital family. We spent many worrisome hours together in the waiting room while our loved ones were in ICU. We ate meals together, attended church services at the hospital and shared tears over concern for our loved ones. I knew I’d miss their love and support.

I didn’t take my decision to move Mark from the hospital lightly. I wanted to make sure everything went as smoothly as possible and was hoping I could ride in the ambulance with Mark to Western Rehab. Mom knew of my desire and was supportive in every way, so the next morning she drove me to the hospital and waited with me for the ambulance to arrive. Two EMT’s came to the room and with a white sheet under Mark’s body, they pulled him from his hospital bed onto the stretcher. The IV bag was moved to a pole on the stretcher, while his trachea tube was attached to a portable ventilator, which was placed at his side.

“May I ride with him in the ambulance,” I asked.

“Yes,” said one of the EMT’s, “you can ride in the passenger seat.”

As excited as I was to get Mark out of this hospital and closer to home, I felt intense gratitude towards the team of doctors and nurses for saving his life. I thanked each one of them as we gathered his medical records and packed up the last few personal items before walking out the door. I was leaving the hospital a changed person, realizing Mark’s life and recovery was now my responsibility. I was confident in my decision, but the accountability weighed heavily on my mind.

The Benefits of Support Groups and Conferences

Photo from Brian Injury Alliance of Utah Newsletter BIAU 2013 Conference

I haven’t forgotten the first time I was encouraged to attend a class on understanding brain injury at the hospital. I thought, no way. I’m overwhelmed as it is and I don’t need one more thing to do. Besides I’m dealing with the effects of brain injury on a daily basis and this is not a class I want to sign up for.

I went to my first class kicking and screaming inside, I don’t want to be here! I don’t want to deal with this injury nor do I want my husband to have it. All the wishing it wasn’t so and disliking the situation didn’t change the fact that Mark had a traumatic brain injury and I had to learn to deal with it. I came to the conclusion I’d better learn all I could to help prepare me for the time he woke up from his coma. I wish I could say the things I learned in those classes made it less frightening, but I don’t think it did. However, I did find comfort in being in a room with others who were dealing with the same devastation I was and the information was helpful.

Over the past twenty-three years Mark and I have continued to go to support groups and the annual conferences. We haven’t gone every year, but when we do go we benefit from other peoples’ experiences and knowledge, as well as the resources that are shared. Now days it’s easy to look up information on the internet, but then you’re missing out on connecting with real people. Whatever health issue you or your loved one is dealing with, I hope there is a support group, classes and conferences that relate to the problem. The human experience plus the information and resources I’ve gained through these avenues has made the time invested worthwhile.

As an example, the Brain Injury Alliance of Utah had their annual family and professional conference on October 24, 2014. This year it was held at the Ogden Eccles Conference Center. The conference was full of information, with two sessions offering four classes to choose from. It began at 8 am with registration and a light breakfast. There was an hour to eat, look at exhibits from the sponsors and pick up information from the resource tables. Always a favorite is the silent auction. There were tables full of homemade items, books signed by the author and even airline tickets to bid on. The silent auction and resource tables last throughout the day and can be viewed and bid on between the sessions, with the final bidding after the second session.

This year’s conference theme was Life Will Go On. Every year the theme is different and after breakfast a keynote speaker bases their talk on the theme before breaking up into the first session of classes. After the first session there was a delicious lunch and recognition awards given to five individuals for their contribution to the brain injury community. The categories were: Survivor of Brain Injury, Family Member, Educator, Professional and Lifetime contribution.

After lunch and the awards, the second session begins. Afterwards, the final bids are collected for the silent auction. This is a favorite at the conference and all of the raised funds from the auction go to serving the Utah brain injured community.

Last, but not least, there is a panel discussion. Many people do not stay for this last hour, however, I have always found it to be very informative and I enjoy the interaction of the discussion. The panel usually consists of four to six people who sometimes are all professionals or family members to discuss the conference theme. I’m grateful for the knowledge shared by their experience and take away so much good information. I leave with renewed hope and support from the conference. On a daily basis I can be consumed with worry and overwhelmed with responsibility and my world can become inward and small. It’s helpful to get out and see others in a related situation and it always builds a desire within to reach out and help another. There is strength in numbers and encouragement that comes from being with others who are dealing with the same chronic illness or injury.

More Than a Survivor

Mark and I with Ron Roskos, who received the Lifetime Achievement Award.

Over twenty years ago I was introduced to Ron Roskos, then president of the Brain Injury Alliance of Utah, a non-profit organization. The group helps community members affected by brain injury by providing resources and information to survivors and their families. They also educate the community on preventing brain injuries. They have an annual conference every fall which brings together healthcare providers, educators, families and survivors. We appreciate the information given at the conference and enjoy seeing therapist and nurses who have worked with Mark in the past. It also appears to give them pleasure to see the progress Mark has made over the years. During the conference lunch they award five individuals in the following categories: Survivor, Family Member, Healthcare Provider, Educator and Lifetime Achievement. Mark was nominated for the Survivor award and we were thrilled to see him receive it. A month ago I was informed Mark was the chosen nominee and they wanted it to be a surprise for him. It was hard to keep the secret as I prepared for the celebration. I believe Mark’s survivorship has been based on the support of family and invited them to join us at the luncheon. Since Mark’s mother and sisters live out of state, it took more planning and time on their part to attend. Mark’s mom flew in from Washington to be at the luncheon and his sister, Karen, and brother-in-law, Mark Ray, flew in later that evening to celebrate with us. It made for a wonderful and memorable day. Our daughter, Katie, and I wrote the following introduction, which the presenter read when announcing Mark’s award. Mark Wilson survived a Traumatic Brain Injury due to a car accident he was in with his wife, Barbara, in 1991. He was comatose for three months and hospitalized for eight months. He is wheelchair dependent and struggles with memory and epilepsy. What a great example he is, especially to his wife and two children, who were ages seven and eight at the time of the car accident. Mark demonstrates the value of perseverance as he pushes through strenuous therapy relearning to speak, write and regaining the ability to feed himself. His ultimate goal is to walk and after twenty-three years he remains hopeful. With the assistance of a walker, his wife at one side of him and a friend at the other, he practices walking at least twice a week with determination. He’ll often look at the two people assisting him and jokingly say, “This is really hard. Must I drag you both along?” He shows burdens can be lightened and joy can be spread with a sense of humor. He enjoys making others laugh with what we call “Markisms,” like telling others that the scar on his stomach from the feeding tube he had is really a second bellybutton, which makes him “twice the man.” Despite many obstacles, he chooses to be happy by looking for the positive in every situation. He is forgiving and thoughtful towards others. Mark is patient and never demanding. He enjoys being productive and looks for ways he can help. He expresses gratitude often for what he has and for the help he is given. Mark once said, “Adversity is the exercise that strengthens the muscle of character.” His muscle of character has Hercules’ strength. He’s more than a survivor – he’s a THRIVER!

Mark and I with Mark Fox, the award presenter.

I’m so proud of Mark and believe he deserves the award for the way he cheerfully handles his difficult, unexpected, unwanted and painful life. I’m blessed to be his wife and caregiver. I loved what the presenter, Mark Fox, said after handing Mark the plaque. “I have to put in a side note…I was relatively new in my career back at the time Mark had his accident and was working in rehabilitation at what is now called HealthSouth,but was then Western Rehabilitation. Mark was at the center for a long time. He had speech impairment and you really couldn’t understand anything he said. Being a young clinician and seeing how hard they work for a long time in rehabilitation with limited progress in speech intelligibility, I really didn’t believe he could ever be verbally understood. But he was always determined. Several years later I saw him at the community rec center. They were doing exercises in the pool and he said, ‘hi’ to me. I about fell over. He was so clear. So, if you get an opportunity, I strongly encourage you to have a conversation with Mark. He is a wonderful man with a wonderful family.” In looking back, I was naively optimistic about Mark regaining all his abilities, but the determination and hard work has paid off. I’m grateful for Mark Fox’s statement recognizing his continued improvement even after his rehabilitation. Gratefully, Mark has never given up and a professional healthcare provider acknowledged it. There are only a few people who have been with us from the beginning of Mark’s traumatic brain injury and they are the only ones who can fully realize and appreciate how far Mark has come. We love to surprise them and see their joy in what he has accomplished. Life can be challenging. We don’t expect it will get any easier as we age, but it’s rewarding to overcome hardships. I’m grateful for organizations like the Brain Injury Alliance of Utah which provides support, education and shows us we’re not alone in our journey.

Marks mom, Wanda with Katie

Eldin with Steve in the background.

Dianne, Mick, and Mom

Dad

Mom, Katie, Eldin, Rosanne, Dianne, and Mick

Missing picture of Ruth and Steve who were also there, but sitting at a different table. Don, Klint, Jerrie and Jon were unable to attend due to work. We also missed our son, Christopher, who wasn’t there due to new employment which has taken him to Washington to live:-( We love and appreciate our family and their support!

Four minute video of the Survivor Award

Enjoying treats and our visit  at Sundance

Weekend fun with Mom W, Karen & Mark Ray

Mark lovin’ his root beer

After a fall ride on the Alpine Loop we enjoyed a picnic at Sundance