Robin’s Story (by, Bill Hunt)
Written by my father.
Talking about Robin’s experience with anxiety, panic disorder and depression is tricky. When all was under control, most people just thought Robin was the most creative person they had ever experienced. When she was stricken with anxiety, panic, or depression, she was generally not open to letting anyone see that side, except myself and her daughters. Only her closest friends knew she had a problem at all. Others just thought something was wrong, perhaps with them. Or, perhaps, they thought Robin really didn’t care about them enough to let them in.
Make no mistake, of all of the physical problems Robin experienced late in life- the loss of her right ankle joint, the loss of both kidneys, and a final battle with ongoing infection that eventually made living a daily brush with death- were made worse by Robin’s anxiety and depression. Robin understood, as did I, that were it possible to defeat the anxiety and depression she would have handled everything else with grace and humor.
There are lots of tricky parts. Robin was such a walking paradox. The mysterious cause of the anxiety, also created in her a propensity for sensitivity to beauty and to the inside issues experienced by all people. Because of this, she was loved as much as she was misunderstood. That “fire” thing gave her a spirit that was hard to miss.
Robin wasn’t born with panic disorder. In fact, her best friend in high school, who had not seen Robin for several decades, remarked after her funeral that she never knew Robin had a problem.
That was a very interesting comment.
When Robin and I married in 1968, I knew that she was reticent about most things I thought were only mildly adventuresome. And for the first few years of our marriage, I felt constrained by Robin’s desire to stay home when she had so many opportunities to venture out by herself or with me.
But I really didn’t catch on.
Early in our marriage it was clear that to be fulfilled Robin was going to have to become a teacher. For some reason she needed to be a teacher to complete her identity (that was my view), and she was amazingly inflexible about that quest. Nothing else would do. I got the sense, and confirmed my thinking in conversation with Robin, that somehow, deep inside, she felt unworthy. It was as if, deep in her core, she felt “not ok.” I was never able to fix that damaged or missing spot. But it was clear to me that as a result of this deep self-denial she needed more external validation that most people. And she was willing to work for it.
She was always a good student, so in 1974 with me in graduate school and with our first child, Erika, in pre-school, Robin returned to college for the purpose of completing her teaching credential. She made it all the way to student teaching, and found the whole experience far more emotionally taxing than she expected. I don’t remember if she quit the program first, or experienced her first full-blown anxiety attack first, but the bottom line was clear. For most of 1976 Robin was physically incapacitated (i.e. on the coach) and mentally disabled (i.e. not able to do much about it). She had failed her first attempt to become a teacher, and most of the burden of taking care of our first born was on my shoulders.
Neither one of us had any clue what was happening. The anxiety response started like this: One evening, out with friends, Robin complained of crushing chest pain, and we went to the emergency room. We were told that it was just anxiety, but two weeks later we were back with the same complaint. Not long after, some psychiatrist admitted her for three days of observation, with heavy medication. But at discharge there was really no diagnosis.
In fact, in the mid-70’s there was little known about anxiety disorders of any kind. In those days women were still having “nervous breakdowns.”
In 1977, with Robin feeling better, we moved to San Diego where, among other things, we joined an organization that was devoted to solving anxiety and panic problems. We heard, for the first time about agoraphobia. Other terminology started creeping into our lexicon. The focus of the group was finding anxiety “triggers” so clients could be desensitized to the trigger. That seemed to work pretty well for members of the group with specific phobias, like driving over a bridge or riding an escalator, but it did not help Robin. Robin seemed to be afraid of nothing and everything, all at the same time. Over the years it became clear that Robin would experience a wave of anxiety and then her mind would focus on whatever she was doing or thinking about and that would be the reason for the anxiety. But the logic of the problem was simple. She needed no real reason at all to feel anxious. Her brain just needed a rationalization.
Counseling for Robin came and went from her life like chaff in the wind, and was largely ineffective. Through it all, I tended to benefit more than she did. Ironically, even relaxation techniques, which all anxiety suffers practice eventually, tended to make Robin anxious. Gads!!
Oh, I should point out that there were indeed specific phobias. She began, for example, to be afraid of medical doctors at the age of five, when she was first catheterized for a bladder infection. That would set up a chain of events that caused her to lose her kidneys when she was 57. Because of the “white coat” anxiety I accompanied her to most of her medical appointments after she was 40 or so, because the stress of the appointment would cause her to forget details about what the doctor said.
After her 1st failure to obtain a teaching credential she still wanted to teach. So she took a job as a teaching assistant in an elementary school, and did well. Once in the classroom with youngsters, the younger the better, she was completely at home. She took a break to have her second child (Sarah) in 1980, but as soon as Sarah was in pre-school, Robin started substitute teaching, and did well. After that she took a full time teaching job in a private school that did not require a teaching credential, and she did well there too. However, when she decided to go back to college again and try a second time for a teaching credential, she had to quit. The stress was too much.
Soon, though, she was ready to try the formal credentialing program again, a third time. This time she asked her doctor for Xanax. There had been a few Valium tabs in Robin’s life, but now was the first time that she was to take benzodiazepine daily to relieve anxiety and panic. She would continue to take benzodiazepine in one form or another until about two months before she died.
At first the Xanax worked like magic for Robin. She completed her teaching credential, and with her resume already loaded with teaching experiences, she began teaching first-grade in one of the best elementary schools around. From the very start, Robin excelled as a teacher, and from the very start I knew she was burning her candle at both ends.
That almost sounds like I was against the benzo, which is not quite true. It was a mixed blessing. Robin could claim her dream with her hand wrapped around a bottle of pills. The dilemma was fulfillment verses a lesser life. There would be immediate compromises for me. I’m not sure she could have been successful in the classroom without my help, as the labor associated with being a “perfect” teacher, as she really needed to be to get her full measure of external validation, was taxing beyond words. Sixty hour weeks were the norm and I was good for another 10 to 20 hours per week on top of that. Her daughters kicked in too, with hours of cutting out laminated everything.
And even though I knew that teaching was too stressful for Robin, the alternative was unacceptable too. Compromise or no compromise, there are hundreds of young adults who had Robin as a first grade teacher who would agree that she was a true gift to young learners. She taught them how to read and how to write and how to do math in an atmosphere of fun that seeded a joy for learning that could last a lifetime. Her students excelled at levels that astounded everyone, especially the delighted parents. She was so good I often felt jealous of the children. They were clearly getting Robin’s best.
But her herculean effort was not without problems. Not long after beginning Xanax Robin started complaining of depression. Depression had not been the principle complaint, not before. Now it was. It got so bad that Robin checked herself into a psyche hospital for 20 days, hoping they could find a fix. Boy, was that a waste of time.
And so, we began a fruitless search for a psychotropic medicine solution for depression. I grew to hate the trail and error process that underlies the reality of psychotropic meds. Some of it worked a little bit, but none of it worked well enough, long enough. Some didn’t work at all. Some had dreadful side effects. Eventually, after years of painful experimentation, we heard the word “refractive” depression for the first time, as a justification for the use of Ritalin. Other similar stimulants were tried, but Ritalin worked. It was even suggested, and then later dismissed, that she might have ADHD (Attention Deficit Hyperactivity Disorder).
She continued to teach, with both anxiety and depression under control. But as time wore on, doctors started showing their concern. She gradually needed higher levels of Xanax, which was matched, of course, with more Ritalin. At some point I remember the words, “fully compromised Gaba system” whatever that means.
Still, she was doing well when a complex ankle fracture dramatically altered her remaining 12- years of life. It would terminate her teaching career, and turn her into a pain management patient for the first time.
Let’s see. There were four ankle surgeries, the last one for a full titanium replacement. And there was a gastric by-pass in prep for the ankle replacement. All of that was followed by renal failure and kidney dialysis for three years, followed by a kidney transplant. There was radical bladder surgery in prep for the kidney transplant.
The kidney transplant happened in January 2007, and was truly an amazing story involving a truly courageous live donor. Those stories are always amazing. But while the new kidney worked really well, Robin was starting to lose her mental competency at a rapid pace, starting a few weeks before the transplant, I think starting with a bad infection in late 2006.
As an anxiety/depression patient, a pain management patient and a kidney transplant patient, Robin’s medicine routine was really complicated, and included a maximum dose of benzo, two other psychotropics, serious pain management meds, and all of the complex kidney meds normally associated with a kidney transplant, to include anti-rejection drugs. Powerful stuff.
The first year post transplant went reasonably well, but by the end of 2007 she had developed serious memory problems. She had a wonderful Christmas morning, for example, but could not remember a thing a few hours later.
Her family believed she was slipping into some sort of dementia. I thought it was a combination of Parkinson’s and Lewy Body Dementia, because my list of internet gathered symptoms matched so well. She had visual and auditory hallucinations, Parkinson’s-like symptoms, including slowed movement, rigid muscles, tremors and a shuffling walk. She was delusional, and she had Alzheimer’s-like problems to include confusion, memory loss and reduced attention span.
This trouble gathered steam rather quickly in the first quarter of 2008, and persisted. Overlapping the symptoms, and perhaps causing most of it, was an on going battle with infection as a by-product of the kidney transplant and her bladder surgery. But during Robin’s last year of life the symptoms seemed to be less about active infection and more about something more sinister. She was hospitalized several times. But her doctors felt that the root cause of her problem with memory, hallucinations, delusions and even difficulty walking and talking were all being caused by medicine that had turned against her. The chief suspects were the psychotropics.
I found that hard to believe, frankly, because she had been on the same meds for so long. I personally controlled her meds under lock and key, and I knew there was no abuse going on. But, nevertheless, not one doctor was willing to call Robin’s symptoms by any of the dementia labels, because they could not rule out drugs.
By January 2009 she no longer knew her husband (me) and one night she even called the police, convinced that I was an intruder who had already kidnapped her family. If you have ever been around someone is in a full-blown state of paranoid hallucination you might understand the situation. If you have never been around something like this, you can’t even imagine. It was dramatic.
Doctors had run out of solutions, so now what? Robin was lucid enough, periodically, to want to make one last run at a solution. She agreed to be admitted to a major psychiatric hospital for detox of all of her psychotropic meds, especially the benzodiazepine. They left the pain meds alone.
While in the hospital she had several teams trying to find a root cause of the problem. As per her many hospital admissions, every test in the book was conducted. This time, though, the tests were conducted while they also withdrew the meds in question. About 16 days later she was released, somewhat improved, but left with uncontrolled anxiety and depression.
But guess what? The dementia symptoms and the Parkinsonism disappeared. She was clearly better after the detox, and a half-dozen of doctors I thought were crazy were actually right.
But it was a hollow victory. In the middle of March 2009 she became short of breath, and started exhibiting a high pulse rate (tachycardia). The confusion returned and she was having difficulty walking, or even standing. I called an ambulance, and in two weeks my Robin was dead.
When she arrived at the hospital she was basically presenting symptoms associated with ARDS (Acute Respiratory Distress Syndrome). Conjunctive heart failure coupled with multiple organ failure. Known causes include infection, but they were not able to find anything to treat in the short time she gave them. During most of her stay Robin was comatose, and I am grateful for that. It was a hard way to die. Had the withdrawal experience made her vulnerable to some opportunistic bacteria or virus or other problem? We will never really know.
But that is Robin’s story in a nutshell. And through it all, it was also her family’s story. It was certainly my story.
