This month we are living with fingers crossed.
Ben has had a close call, once again, with his symptoms of schizophrenia. We don’t know how it happened, but somehow in late May Ben’s med levels began to drop. We saw the usual warning signs (agitation, self-talk, lack of focus, too-forced interactions, loud and constant music in his iPod, lack of desire to engage, etc.) and yet he kept insisting he was “fine” and “nothing is wrong.”
But we knew. And we ordered tests. The test result? Med levels near to zero.
So we took new precautions, which unfortunately must include a lockbox for the meds. It feels like we have gone backwards in the quest for Ben’s independence. And ours.
What is the Cost of Schizophrenia Relapse?
For us? Trust level has dropped, supervision level must rise, and fears about Ben’s future have increased. But we’re used to the roller coaster ride. We’ve managed it before, we’re managing it now, albeit with disappointment. Ben seems to be back on track, and we remain grateful for days that are productive and hopeful. Grateful – and, of course, also guarded.
But what was the possible cost for Ben? The results are coming in now – in his job (he was close to being fired, as he was acting so strangely and customers were complaining), at school (for the first time in years, he did not complete one of the classes he took, and his financial aid could be endangered), and with his friendships (he became withdrawn, and his friendships only survived because the guys came to us to find out what was happening, and were willing to understand and wait for improvement in Ben).
Ben came this close to losing everything he has worked so hard to build – all in the space of one period of medication non-compliance, however it happened.
And now? We wait and see. And lock up the meds.
How Real are the Results of Schizophrenia Relapse on Perception?
On the TV series Perception, neuroscience professor Daniel Pierce (played by Eric McCormack) lives with paranoid schizophrenia, which often conveniently manifests as helpful voices which help him solve crime. In between cases, he manages to lecture to his college students quite coherently and entertainingly.
When not in “focus mode”, though, Pierce is bothered by hallucinations and often relies on his assistant , Max Lewicki, to help him keep his realities straight. FBI Agent Kate Moretti, his partner-in-solving-crime, also keeps an eye out and sometimes asks, “Daniel, are you having an episode?”. And now, the character Natalie Vincent(voice)/Dr. Caroline Newsome (real) observes Dr. Pierce having symptoms of relapse.
Of course, Pierce always answers, “I’m fine.”
That’s the problem – and so it is in our family.
I wrote about this series when it premiered last year, and now in Season Two, Dr. Pierce has returned from a psychotic break (at the end of Season One), hospitalization, and nine months of staying on his meds. As we pick up the show, he has stabilized enough to even begin a relationship. Things are good. But they don’t stay that way for long. Pierce believes he is developing tardive dyskenisia (rare with the schizophrenia medications he is on, newer atypical anitspychotics) and weans himself off, without consulting his psychiatrist. In fact, he no longer shows up for treatment.
That, at least, is all too real to us. And some of what happens to Pierce as a result also rings true, in ways – but we have to see if his non-compliance has any more devastating results, as it has had in our family. So far, the character has held on to his job, and his friends – but he has lost his girlfriend.
So we’ll keep watching. It’s not a fairy tale, so that’s good. And I think the writers are trying to be true to the facts of schizophrenia treatment. Pierce’s case may be closer to that of those living with schizophrenia with more success in functionality than Ben has had so far. (e.g. Elyn Saks, author of The Center Cannot Hold).
But, for us, the results of a relapse are far more devastating at this point. So we keep close
watch. And hope the day will come when Ben can accurately gauge his own progress and relapse.
No matter what you call it – relapse, return of symptoms, regression – one of the most difficult aspects of chronic illness is the need for constant watchfulness for signs of recurring symptoms, while trying to enjoy the good days of stability.
When you add the word “mental” in front of “illness”, often the ones who monitor those signs are outside observers – family, friends, and professional caregivers – because the nature of mental illness often obscures the ability to self-observe with accuracy.