The Tumultuous Years of Ambiguity (Part 1): In Search of a Diagnosis
My husband’s 5 weeks in the hospital marked the beginning of a four year slice of life I call The Tumultuous Years of Ambiguity.
What caused the deterioration which landed Caleb in the hospital was a mystery. After his discharge, he required one more infusion of blood. His weight finally stabilized and over the course of a year he slowly regained strength. We continued our hunt for answers, going from specialist to specialist – blood tests, EEG’s, EKG’s, scans, studies – all “negative”.
I hated the news that this illness or another was “ruled out” . . . even the scary ones. I just wanted to know so we could move on and start to deal with it. Not knowing was the worst part.
Caleb’s short term memory was not good, so I needed to attend all his doctor visits. . . going to several visits per week and managing the investigation was like another job for me. I was working full time and our two, five, and ten year olds needed more attention than I was able to give them.
Caleb finally talked his doctor into allowing his return to work. He was going stir crazy at home, but within a few months of working his brain injury symptoms dramatically increased. He would get so absorbed in a project that he would forget to go to work. He sometimes got lost. He became almost obsessed with taking things apart. Our house became littered with computer and flashlight parts, among other things. His thoughts were disorganized and his environment was chaotic.
In the sixteen months back at work before retirement, he was on disability leave for over two months (not consecutive) and he never managed to work a full 40 hour week. After about nine months, his boss and I began to suggest retirement. He refused to even consider the notion – until another blood in the lungs episode.
Caleb wanted to keep working – to support his family. That’s what any husband and father wants. But what if it was in his family’s best interest to retire?
His symptoms were worse when he was working . . . and that put a strain on the family. And his health was not improving – there was not even a diagnosis – which put him in danger of losing his job anyway. At least retirement would bring an income.
Even though it went against every fiber of his being – and he fully expected to be viewed as a social outcast – he chose what would be best for his family. It was one of the most painful and self-sacrificial things he has ever done!
The process of applying for and receiving disability retirement took about a year. I (mistakenly) believed that once he was approved for social security there would be resources available to us – assistance with housekeeping and going to appointments, etc – so that I could continue to work and not have a nervous breakdown.
When I found out that there would be no help I cried for a long time.
We were nearing the end of our investigative journey. A few months after his retirement was finalized, we finally saw the specialist who gave us the diagnosis . . . a neuropsychiatrist.
He said there had been numerous onslaughts to Caleb’s brain over the years, from multiple concussions in the army, to drug abuse and pain, and finally the period of time he went without oxygen before I discovered him drowning.
But he also said that Caleb had the highest level of stress that he had ever seen in a patient. He felt the stress was making the brain injury so debilitating and causing the physical symptoms of anemia, weight loss, and even the blood in his lungs.
Finally! A diagnosis! A prognosis! A course of treatment!
As great as that was, nothing really changed the next day, or even the day after that. We still had a long road of acceptance and adjustment to travel – but now at least we could begin!