You never fully understand TBI (Traumatic Brain Injury) unless you live it.

No matter how much you read, you don’t get the whole picture unless you witness TBI firsthand. As we began our education into how the individual is affected, we also learned that it is a life-long learning process. TBI affected our whole family immediately after David’s accident. Since no two traumatic brain injuries are the same, we had to learn patience with not only him, his caregivers and doctors, but with ourselves.

Initially, The Brain and Spinal Cord Injury Association of Florida supplied us with information about various agencies and websites, but along with everything else going on it was confusing and overwhelming so we put it aside. We were still dealing with shutting down and monitoring his company closure. We often talked about ‘while David was sleeping’ we were busy changing his life as he knew it.

In the first book of The Whisper Mystery Series, my character Ellen was told that she had to leave the life she knew to live a new one; that her family would have to do that if they were going to survive. In reflecting back on this time, we were likely going through the grieving process and the emotional roller coaster that followed was hard to deal with. In essence, we lost our son the day of his accident…but a new person was taking his place and we were determined to love him no matter what. And we were just beginning to think about what that meant.

It was February 1, (almost 5 months after his accident) when I spoke to David’s case manager from our home in the north. They were conducting ‘pudding trials’. David had not eaten by mouth for months and the facility was unsure if he could swallow without choking, so they slowly introduced soft foods.

Several days later, David’s wife called in a panic because the facility wanted him moved. The 100 days of skilled nursing was over, his medical insurance will cease payments, and we need to find another place for him. This information was not consistent with their Monthly Client Assessment Reports. What they didn’t tell us was there were ‘cabins’ located on the facility grounds that were used for ‘step down’ patients. They didn’t have room for David…but we convinced them (via his insurance company) to keep him in the acute-care section until one opened up for him…and miraculously – one did the next day!

By the end of February, my husband agreed that I should return to Florida to keep an eye on things. My sister and I wanted to be present for David’s appointment with his neurosurgeon, anxious to know there was progress. We wondered what the rehab facility was talking about, because the CT scans showed a marked difference from December to now!excercse room

In the exercise room, David’s hand was no longer ace-bandaged onto the handle and he looked more content, followed directions, and smiled when he recognized us; but the progress was agonizingly slow! I felt an overwhelming sense of pride because David was fighting to come back so he didn’t remain a prisoner of his injuries.

The facility gave us the cold shoulder and we chalked it up to the medical insurance company, our requests, and questions, but when we located his case manager, he said David waved at him yesterday…and gained a pound.

I equate David’s being held captive in the facility and in his wheelchair (and perhaps his mind) to what my character Ellen felt like (in book one: The Ancient Whisper) when things were so out-of-control for her. In David’s case, we saw the spark in his eyes, his determination to move forward. We also witnessed his frustration with physical therapy and we wondered why they were not working more with his legs.

We didn’t want to think ahead to the ‘what ifs’, nor did we (is this denial) want to believe David would not recover, so we mustered on, one day at a time.

Rehabilitation; the start of a long journey for the TBI (Traumatic Brain Injury) Survivor and Family

Three months after the accident, we had no idea how long David would stay at the facility, but we felt that it was important that family visit him often so he didn’t feel abandoned. We brought little things to jar his memory, played board games, took CDs for him to listen to, and encouraged walks outside in the sunshine.

We looked beyond the previous setbacks and stayed involved in every aspect of David’s life away from us by monitoring medications and demanding answers to our questions. Because of the near-mishap (hydrocephalus), his wife wanted him moved. The reality of this – was there was no other place equipped to handle traumatic brain injury any closer.

Although barely visible, David was making progress. He moved from a high-back chair with wheels to a wheelchair, where he was strapped in with a seatbelt attached to an alarm. The staff explained that it was just in case he tried to stand up and his legs wouldn’t support him.

In the 10 page monthly CLIENT ASSESSMENT REPORT; specific goals for each therapy were broken down using a 7-point ordinal scale with a summary of each at the end along with a doctor’s assessment. And each month, just like clockwork, his insurance company had to be convinced to keep paying for his rehabilitation. Our expectations far out-weighted what the facility was doing. Their colorful brochure showed a multitude of treatments, a woodshop, a swimming pool, and horses out grazing in a pasture. They were fun-looking activities, activities that didn’t match what we saw and experienced.

The facility provided David with 24/7 care with therapies scheduled 3 hours a day. He liked most of them and often laughed with the therapists when teased about his ball cap (which he never removed except at bedtime). Since his injury was on the left side of his head, the right side of his body felt the deficit and his right hand was ace-bandaged onto a rotating device for exercise. But when it came to pphoto 4hysical therapy (PT), he absolutely abhorred a contraption known as the ‘stander’. He yelled obscenities (although no one knew what he was saying at the time) and often howled to make them stop. His legs continued to contract and he lost weight at an alarming rate.

During this time, my husband and I flew back and forth from our home up north. The possibility of what to do if the insurance company stopped paying for rehabilitation loomed large. He was not ready to come home…who would care for him? He was wheelchair bound, incontinent, unable to talk, and had a feeding tube. The reality is that caregivers of TBI survivors carry a tremendous responsibility. They have to let go of the past, fight for the present, and plan for the future…all at the same time.

As I continued to document David’s journey, I discovered that it also provided a sense of peace when I wrote things down. The difficult decisions we made for David mirror the difficulties Ellen faced in The Ancient Whisper. In a way, when I wrote, it helped to work out and dissipate some of the anger that we felt when we eliminated David’s inventory, (equate this to Ellen’s possessions being sold without her permission) because we needed money to pay his creditors…a sad task for any parent.