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A year without

Recalling "Bandit" in a trip to Disneyland, as grief slowly begins to receed. Credit: Courtesy Matt Fikse

This one is personal. Yet shared by many others in their own way.

One year ago my sister died, unexpectedly. In the past few weeks, as the anniversary of her death approached, anxiety came with it. How would it be, a year later, to face reminders of such a gut-wrenching loss?

The calendar is relentless with both holidays and emotions. Last December was a snowy, teary blur of raw emotion mixed with endless somber details to attend, the flurry of tasks that press when someone dies without warning. The hazy exhaustion of that time makes it difficult to remember anything particular about last Christmas or New Year’s and yet here they are, in the proverbial blink, back for another round.

For more than 30 years my sister lived with bipolar disorder and schizophrenia. Through the decades she triumphed in ways one might consider small but that are in fact huge: new roommates, getting her own apartment, balancing her checkbook to the penny every single month (the only person I’ve ever known to accomplish this feat). Making friends. Coming to peace with life as it is instead of how we wish it were. Having fun along the way. Always finding ways for her true self to come through.

Over these years “we” — meaning society — also made progress. The stigma associated with mental illness was severe in the 1970s and 1980s. It made everything unnecessarily difficult. Difficult to get information, difficult to understand what the doctors told us, difficult to talk about with our family and friends. We made it through even though we were all flying blind.

Treatments improved, new medications were invented, progress came in small steps that accumulated greatly. Engagement, support, and consistency were the things that made the difference — and the things that the mental health “system” has the hardest time figuring out. In recent years we worked hard to find quality continuing care in a system profoundly out of touch with client realities.

My sister’s death was sudden and natural but likely the result of decades of powerful medication and their side effects going unnoticed and untreated. Where are the mental health care providers that integrate management of whole health side-effects with the effectiveness of the meds themselves? Where are the providers willing to take the time to look for the things they might miss in their hurry to increase their patient counts? How can a physician give a physical and miss something so major?

And don’t even get me started on the tobacco companies and their mental health “target market.” Schizophrenia patients are three times to five times more likely to smoke, and represent billions of dollars of tobacco company revenue — and profits — each year.

But one cannot change the past. Reflecting on my sister now unearths pleasant memories that are like the best old friends. Years ago we all decided that what we really needed were code names. I think it was about the time she got her first laptop computer and started using email. She was “Bandit,” I was “Scoop,” and we called each other that ever since. Memories return with laughter. Grief shrinks in the rearview mirror as life drives the road ahead.

Somber notes remain for the larger challenges that are still and nowhere near being met. For too many mentally ill people the barriers to care remain too high. Access is denied. Systems are needlessly complex and compartmentalized. It’s far too difficult to navigate the bureaucracies. Getting coordinated, effective care still requires a fight, and it’s more than one person can do on their own.

The surprise of this anniversary has been the arrival, for the first time, of a sense of recalibration, adjustment — is it acceptance? It is certainly not “closure.” The TV talk show idea of closure has always seemed suspect. Why on earth would one want closure on something so important? Why not keep something of it around as long as one can, in the healthiest way one can manage? “Closure” feels like putting it on a shelf to gather dust. No thanks. Better to go for acceptance instead, even if it takes longer and is harder to achieve.

I think Jeri was the strongest of us all. She found ways to make progress, teaching me some of my most important lessons. Never give up. Stick up for yourself. Let go of the unimportant stuff. Laugh as much as you can.

There is a cadence to loss, a pace to grief. The intense crescendo of pain followed by a longer movement that is more complex. Spontaneous phrases of memory with a rest at the end of the measure — always. Full stop. The person you love is not here anymore.

But she was. We knew her. She was unique, wise beyond her 49 years. Her challenges made her tough as nails yet she was forever ready to laugh a true laugh. We loved her, of course. She will inspire us for years.

I wish you could have known her.

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