As I came to accept and believe that depression wasn't the result of my failings or weaknesses, but a major illness, a malignant condition, then I needed to deal with treatment more consciously. Up to that point, I had been through a lot of talking therapies and the newer medications, but while each approach helped for a while, nothing was effective for very long. I realized I had to become more active in my own treatment, and I had learned how to do that from another disease I had recently had to combat. That was cancer. But what I found was that I couldn't do much about that disease until I had confronted a deepening depression.
I wouldn't wish a cancer diagnosis on anyone, however much you might learn from it. Nothing concentrates the mind so wonderfully, to paraphrase a sage of the 18th century, as the knowledge that you have a growing thing inside your body that will kill you if left untreated. That triggers every intense emotion in the human repertory.
I couldn't think about anything else and had to get hold of all the information I could find to understand what this was and, more bluntly, what my chances of survival were. The first article I read, in Scientific American, announced in its lead sentence that many with this type of cancer are doomed to a long, slow, agonizing death. That magazine popped out of my hands and landed across the room as if by lightening strike. Hey! Don't tell me that, you idiots, at least not right up front! I scoured the shelves in the library and found a few things of interest but then was gripped with an embarrassed fear about checking them out. I didn't want anyone to think that I might actually have this killer problem. I tried to think how I might disguise my frightened need amid a barrage of books about other subjects, normal things, like carpentry and cars and architecture. I tried to come up with excuses I might mutter as I faced the person at the counter (this was a small town, after all, and I actually knew some of those folks). But in the end, it was too painful to be seen carrying those cancer books around, and I just scanned them while standing amid the crowded shelves, trying not to be noticed.
Eventually, I got past that feeling and bought the latest titles in bookstores and devoured each one for signs of hope. It took a long time before my mind could settle down enough to read and separate the thoughts on paper from the jumble of nervous energy racing through my brain. I quickly learned not only from books but from my doctors that people in medicine don't like to talk about cancer any more than I liked having it. All of a sudden their commentary, as well as that found in the books, turns to test numbers, stages and percentages.
I got obsessed with each of these. What are my numbers from the diagnostic tests and the biopsy report looking like? What stage of the disease do they say I have? What then is the rate of survival for someone with my numbers and my stage? What are my odds for staying alive?
I found a table in one book that displayed the percentage of patients with different ranges of diagnostic numbers surviving for five or ten or fifteen years. I panicked as my numbers and stage rolled into a 50% chance of survival after 10 years. 50%! Only one in two! I felt completely helpless and, of course, fell back into the waiting arms of the depression that was always there.
So for a time my hope of dealing with cancer was stalled by a recurrence of deep depression. I can recall hitting rock bottom one day, as I poured over the books describing how the cancer spreads, how it can move into your bones and bring about that agonizing crawl towards death described in the Scientific American article. I pictured that quietly spreading violence within my body and fixated on different organs and bodily systems becoming infected, and it matched perfectly the self-image that depression brought forward. Maybe I should just give in to this, I found myself thinking, and my feeling plunged into bleakness as far as I have ever gone. The whispering monologue kept on – maybe I should just rot away and die since I'm worthless anyway. I found myself meekly believing that such a death would be fitting and deserved. And so the poisoned mind went on and on until I stopped – I have no idea why – and something else took over. NO – the word boomed in my mind – NO – I listened to the deep resonant sounding of that syllable. NO – I WILL NOT LET THAT HAPPEN!
I rebelled. From some depth of sanity that was left me, the will to fight back swelled up. I shut down all the miserable jabber about rottenness and death and resolved with every bit of energy I possessed that I would fight this, that I needed to live, that I was going to survive. I felt so powerful and exultant to have reached that point of desolation and then found a resilience that I hadn't expected. But thank God it was there, I was there, almost buried alive, but still able to punch my way out of that mounding dirt.
From that point on, I became an activist in my own treatment. Of course, that's easier to say or resolve, harder to do in practice. What was it that I – the cancer patient – could do? Just at that time, a friend recommended a book by someone he knew named Michael Lerner. Lerner had started a treatment program for terminally ill cancer patients that had been profiled in the Bill Moyers series, Healing and the Mind
Its permanent value to me was its underlying message that one of the most powerful forces in healing and recovery was me. Lerner takes the stance that there are no easy answers, that a path to healing and recovery is complicated, full of confusing choices. He wrote the book, in his metaphor, not so much to provide a map through the difficulties but to give the reader a course in mapmaking. In other words, he provides tools, summarizes what is known about a great variety of treatments but always reminds the reader that he or she is the one who will make a unique map of how to proceed.
I followed that advice as best I could. I looked into everything I could find on every approach: surgery, radiology, the alternative treatments. I questioned doctors about their track records, got multiple opinions, called others who had been through this process before me. That was an especially important part of making choices. I was amazed at how open others with this condition were. I would call complete strangers, explain that a friend or their doctor had suggested I call because I understood they had been through this – and they poured out all their experiences, for good and ill. This form of cancer is a male malady, and I wasn't prepared to hear men so open about their affliction, treatment, experiences in recovery as well as their feelings, issues with their partners, worries about the future. I was suddenly part of a community of people who desperately needed to share what they knew in hope of moving ahead a little farther in the healing process. Or, if they were too far gone with the disease, they needed to get all the spiritual and emotional resources they could find to support them as they got ready to confront death.
Ultimately, I chose surgery and approached every medical appointment and the event itself with a determination to look each medical helper in the eye, introduce myself and make sure they got the message that they were dealing with a person here and not a statistic. There are a lot of physically humiliating things that are done to you in hospitals and a lot of awkward equipment you carry with you in the early stages of recovery. I just plowed through it all and was amazed at my own energy and strong spirit. That had a lot to do, I'm sure, with a quick recovery. In the dozen years since then I've had no recurrence. I don't think of myself as a cancer survivor, as the medical profession labels me. There are too many other issues I've got to deal with that keep me from dwelling on that.
It wasn't long, unfortunately, before depression returned, and I found myself once again struggling to get through each day. At least now, though, I had a concept of myself as an activist in the healing process that was beginning to make a difference, but only beginning. In terms of the difficulty of the struggle to heal, cancer was just a preview, a kind of training course for starting on the even more baffling pathway to recovery I have to find in dealing with depression.
Of course, I'm still trying to find the right path for me.
The following is a letter I wrote to Brightside. It has been slightly redacted to avoid outing anyone with mental health challenges.
“Dear Brightside:
While searching for mental health care for ***, I came across your service through my employer insurance Cigna. I was excited because I thought it was almost serendipitous that your CMO was from Stanford (*** just started their first year there).
I would be remiss if I didn’t write to you.
Your website includes statements about how “our healthcare system wasn’t designed to deliver the kind of care people with anxiety and depression need” and that our healthcare system is “broken.”
Well, you know what’s really broken? My heart. I’m absolutely heartbroken to learn that services such as yours only pay lip service to the real and deeply untreated state of our world’s mental health.
But what really breaks my heart and hurts me to the soul is that as the supposed experts in this field, you have implemented policies and protocols that permit you to reject service to individuals who reach out to you in their most vulnerable state.
I’m really trying to wrap my head around how that must feel for them. How are you okay with hitting someone when they’re already down so low?
It’s absolutely devastating for me to learn that this is actually a common occurrence.
But as a mother who is desperately seeking help for *** during a very critical time, it makes me extremely angry as well.
How dare you state that “anxiety and depression are incredibly complex…..they show up in different ways for everybody” and purport to offer personalized care, but only if they fit your criteria; only if they “check” the boxes you have designed to accept a patient to receive your services? Otherwise, they are denied; they are rejected; they are left to feel alone (more alone); they are, once again, abandoned by the system.
Then (and this is the real kicker), to add insult to injury…….after you reject them, when you are now armed with the knowledge that they were seeking help because they are feeling suicidal, you do nothing. NOTHING!!!!
Your services are definitely NOT part of the solution. Instead, you are part of the problem; and maybe the worst part.
Shame on you!!”
A dear friend of mine was confronted with a similar, yet much worse situation. While sitting on the floor, in a dark closet, trying to comfort her suicidal son, she desperately called the suicide prevention hotline for help. They asked her if her son was hurting himself, to which she explained where they were currently situated, and then the phone went dead. Thinking that the line was cut-off, she called back and was once asked if her son was in the act of hurting himself. She told the person that he wasn’t; that she was with him on the floor in a dark closet precisely to keep him from hurting himself. I couldn’t believe it when my friend related to me that the person then told her that if that was the case, they couldn’t help her and then hung up (again).
What? How does this happen? Is my experience and what occurred with my friend normal? I’d be interested to hear of anyone else’s stories. Feel free to post this to your website/blog and make it public.
In your own way, you too are teaching the skill of mapmaking here at Storied Mind. I know nothing about mapmaking. But I do know you can’t imagine the coastline, the topography, the longitude and latitude, until you get there. Then you have to employ all your senses and all the tools available — sextant, compass, weathervane, survival skills. But perhaps the best help of all is if others have been there before and come back alive with stories of what they encountered and how they prevailed against all that nature could throw at them. My ancestor was Meriwether Lewis (my grandmother was a Lewis) of the Lewis and Clark Expedition. And, as luck or genetics would have it, he too dealt with depression and I believe ultimately took his own life. He had the pluck and skill to traverse a continent but failed to overcome his inner demons.
No matter what century we live in, no matter what tools we have available, no matter what company we keep or what ancestry we claim, our own internal maps are mostly lost to civilization as soon as we die. But with Storied Mind you are publishing your own map and guide in e-books and here on the internet where hopefully it will be available for a long time to come. I applaud and appreciate your efforts and insights. Thank you for making your struggles and quiet victories available to those of us who are traveling that same road.