Personal Stories

Tapestry of Life

It’s 2 am, which isn’t unusual. Well - of course - it is 2 am every 24 hours! But I am up and online at 2 am, after a week of disrupted, mismanaged sleep. I know this isn’t good. So I will be quick.

Mental illness involves the brain and other parts of the nervous system. It remains very poorly understood and compared to fields like surgery - where the most advanced, flexible and effective tools are routinely discovered and made available almost as soon as they are developed. Because it is poorly understood and because psychiatrists are relatively poorly paid, the field does not entice the best of prospective doctors in medical school. Lack of tools, limited research, dull colleagues, poor compensation. Well, it should be no mystery why access to care is limited and the quality of care lags. We have a desperate need for sufficient, high quality, providers and a great deal more research into root causes and efficacious treatments.

I suffer from straight-up depression and bipolar depression. Sometimes they can’t decide which and sometimes it is both. It doesn’t matter to me; all I need is someone perceptive and experienced enough to help with care. I have a fabulous education including graduate school and I have worked at some of the U.S.’s most prestigious companies. But it has never been easy and I have almost never been completely honest about my challenges.

When I think about what mental illness is, I see an image of a tapestry. If you are really good developing a tapestry, your stitches will be neat and tidy, the same dimension every try, contiguous, working well to be a coherent whole.  

When you have a mental illness, creating the tapestry is a lot more difficult. Without completely overextending the metaphor, your threads become irregular color and heft, and your stitches start to vary widely. Sometimes you use the wrong stitch at the wrong time. Sometimes you can’t find where you left off, to pick up what was put down. Sometimes you have to rip shit out and do it all over again. Under close-up scrutiny, it is pretty obvious to anyone with good vision that your applied abilities yield uneven results. What is not visible is the root cause, because this is an illness which is not revealed, let alone discussed. In addition to working on your embroidery, you need to be a crackerjack sales person who can mask those defects. All of this is a pretty damn tall order.

There are things we could do to make it easier for individuals and families struggling with this “silent” disease. First among them? We should probably decrease the stigma. We should not expect those of us who are afflicted to also be great at dissembling and “spin”; they need all their energy and resources to work on treatment and something approximating cure.

We absolutely need to fund research. Psychiatry is in the Dark Ages compared to other branches of medicine. This can happen only because of stigma; too many of us—myself included—are afraid to come out of the closet, for lack of a better term. We need to borrow strategies developed by gay men to combat the relative indifference of U.S. and other populations to HIV/AIDS.  Many of those wonderful guys were dying and there was nothing left to lose by going public. Well, I think we could argue that a silent epidemic exists in psychiatry and that we can’t know who among us will be felled, temporarily or permanently, and that this is a real and urgent risk to the health of children and adults.

We need to educate via communication. We need to be able to articulate what good care looks like and where it is not being delivered. We need to help create the conditions for success for the people who want to engage in managing the disease, and we need to stand by those of us who are just not here and require our patience and support as they struggle back from a veritable wasteland.

And I? Well, I need to “put myself down” so that I can rise again tomorrow. I have to accept the burden of needing to manage myself at a time when I couldn’t care much less. I don’t want to eat. I don’t want to sleep. I don’t want to make the 6,000 mile round trip home for the holidays. But I know what I must do and I must do it routinely whether I like it or not.  

And if I do it often enough, and well enough, I just might make my way back, and those stitches in my tapestry might just become regular, and pleasing to see, close-up and further away.




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