Sometimes life is not just facing a simple challenge. Sometimes it is more than one. Kevin Hall shares his fight with cancer, while bipolar disorder tied his emotional hands.
I was diagnosed with manic-depressive illness in 1989. This was the era that saw the descriptive name castrated/oophorectomized/euphemized to “Bipolar disorder”.
Medication kept me alive.
One type of medication for Bipolar disorder addresses one concern—say mania—by being a downer. It pushes the brain down, to keep it from spinning up. Makes sense. But, brains don’t like to be pushed down. Think of your worst hangover. Now imagine it going on forever.
Fortunately, there’s a pill for that too. Think of it as an “upper”, because that is way more fun to say than “anti-depressant”. A lucky person with Bipolar disorder eventually finds a psychotropic medication regime which keeps the patient from getting swallowed by the sun or drowned in the abyss. So far, so good. The MEDS don’t necessarily make the soul sing however. That tradeoff (still alive thanks to MEDS in exchange for muted soul) is meant to represent acceptable collateral damage. Family and friends and doctors certainly all think so, but few of them have ever had to roll without a soul. It’s harder than it looks.
I wrote a little about Bipolar for The Good Men Project here.
I was diagnosed with cancer in 1990, less than a year after my first manic-depressive breakdown. It was scary, and lonely, and cured with surgery, and compartmentalized out of the way of my plans. I was very lucky. I wrote a little about this in a previous article on The Good Men Project.
At age 23, in 1992, I hadn’t learned to manage my manic depression yet. As evidenced by a second acute manic episode. This time instead of Boston, it was in Tokyo. And the second depression sucked more than the first one. The novelty had worn off, let’s just say.
The Lithium-veneered world was not doable for me. Simply. Not. Abide-able. I had loved music and laughing, for starters. So, I went off my MEDS, and I went manic again. This time in Long Beach. Locked ward, inpatient, outpatient, depression. The stages are predictable and really not much fun.
Then things got interesting. My tumor markers for cancer shot back up, right through the roof. It had lain dormant for two years. Maybe the stress of the third manic episode contributed to the cancer coming back; there’s no way to know.
I had a retroperitoneal lymph node dissection to clean out all the metastasized cancer. Problem was, the nodes were benign: It was the other testicle. My endocrine system was now malfunctioning as much as my brain seemed to be. No more testosterone would be made by me.
Testosterone helps regulate moods, and having bi-weekly injections meant that I had two cycles a month. This was not ideal for my Bipolar. It caused me to (have to) learn how to knock off the peaks and fill in the valleys. The filling in is quite a bit harder, especially when most of the valley is precisely the same mind which is trying to do the filling in. This is why I have quipped in passing that “Cancer Was the Easy Part”, which is also the subtitle of my first book, Black Sails White Rabbits; .
I don’t know what it’s like to face cancer without mental illness. At least with cancer, there is no stigma anymore. When I got cancer the second time, nobody ever said to me “Why don’t you try harder? Why don’t you do your best?” Nor was I told that my cancer made anybody feel “disrespected”. I wasn’t selfish when I got cancer.
I do know a bit about striving. I can action the plan to control the things which I can control. I know the difference between those and the ones that I can’t. I had lots of practice during my twenty-year quest to become an Olympian. I think I have evidence which supports the fact that I do know how to try hard and to do my best. The Olympic rings on my 2004 US Olympic Team leather jacket back me up.
When I got cancer the second time, my medications, meditations, and fitness regimes were as good as they could possibly be for a twenty-three year old male with Bipolar disorder. I had the daily schedule of an athlete training for the Olympics: Up at 4:00 A.M. Take MEDS. Cycle seventy-five minutes to day job. Work until noon. Cycle to gym. Swim. Lift weights. Sail until dark. Eat. Take MEDS. Sleep. Repeat.
Such a clear goal/purpose/plan. And, something to Get Back To. A horse to get back on just as soon as I was ready. Just as soon as the cancer was for sure all gone.
Then the anguish set in.
The organism (Me) which was trying to survive after losing its second testicle had a head, a heart, and a soul. A family, friends, some goals. But when it was time to go back out in the world disfigured, infertile, and dejected due to the repeating pattern of setback—or failure—things got pretty damn frickin’ tough.
Needing as much optimism and as many angels as I could find, whether on heads of pins or made-up-in-my-own-head, MEDS did not figure as a helping hand anymore. It could have been worse, my fourth manic episode. I could have killed myself and my girlfriend by driving my truck all the way into Boston Harbor in the early Spring. Fortunately, the Director of my “Truman Show Delusion” had other plans for me after our initial, relatively minor crashdown at the shipping docks.
Here’s the scene now in March of 1993, after four manic episodes—each with ensuing depression—and after losing both testicles and all the lymph nodes in my abdomen:
It has been two months since the removal of my second testicle. I have just started hormone replacement therapy, administered by the psychiatric nurse in the lockdown ward of McLean Hospital in Boston. It has become clear that Lithium and I are not good friends. The doctors change my MEDS. I participate in art therapy, group therapy, one-on-one chatting about my challenges and my future.
I don’t know if I want a future.
Fortunately, my “I’m Going to the Olympics self” still needed one. I remain indebted to the mean kid who told me in fourth grade that I sucked at everything. I was able to tell him, “Nope, not everything. I’m going to the Olympics. In sailing.” The drive to prove him wrong, and to prove fourth-grade me right, probably got me through my darkest nights.
It was easy for friends to rally around me about the cancer. An operation is so visual for sports fans. My lace-up corset to keep my fifty staples together was also quite visual. A clear indication that I wasn’t yet back to my old self. Not unlike the cast on a kid’s broken arm. Something to sign.
It was much harder for friends to stand by me after a manic episode. For one, they had witnessed the escalating irritability and paranoia, and been on the receiving end of evaporating empathy. Close friends were lashed at with harsh words like “Quit cramping my style. What is wrong with you? Leave me the F alone!”
For two, psychiatric hospitals are considerably creepier to visit than surgery wings. Who are all those strange people? Why is that strange woman asking me questions? I’ve never seen a face that desperate and lonely…
For three, once out of the psych ward, there is little outward manifestation of the immense internal insecurity and pain. Maybe I should have worn a bandanna each time I got out of the mental hospital. Maybe people could have signed it. For sure it would have helped them to temper the somewhat abstract, but also hard-to-shake, thought that a mental illness is a kind of weakness, and that getting headsick is a kind of letting-everyone-including-self-down.
One of the biggest reasons that it is so hard to live with mental illness is that the challenges have only just begun when one leaves the safety and security of the inpatient ward. What if I can’t keep it together? (I don’t really feel that confident that I can.) What if my friends don’t want to hang with me because I’m depressed? (I’m such a liability to them and my family I should have just killed myself properly, like I tried to do. Dammit.) What if I never feel better than I do today? (My mind is not responding to the request to add the element of time to the equation, providing hope for the future. My mind insists it will always feel like it does now.) How am I going to pay for this? I already lost my job…
The first time, nobody knows what’s going on so it’s not your fault yet. The second time, you might get a mulligan. By the third psychiatric hospitalization—unless they’ve been there themselves or really taken the time and expended the energy to learn enough to get past the ubiquitous stigma—by that third one, your family and friends are likely (unless you are very lucky) to recoil from the havoc and retreat from the difficult consequences. Leaving. You. Alone.
Did you see The Martian? A storm on the surface of Mars requires the landing party to rush to evacuate. Matt Damon gets struck by debris, and is left for dead. He spends the whole movie showing how determination, a keen intellect, and the near-limitless support and resources of NASA get him over setback after setback. The movie tagline is “Bring Him Home”. The whole world is cheering for him as he blasts himself off the surface in an abandoned module from a previous mission. He is saved.
Cancer is a bit like that. You’re facing it on your personal Mars of illness. Your body isn’t working right; bits are malfunctioning. It takes an iron will to keep fighting. But. The whole Earth is cheering for you. And. A juggernaut of cancer research is supporting you with protocols and hope.
Here’s The Bipolar Martian version: Same opening scene: The rest of the party has to blast off. They leave you stranded. Same next scene: You have to pick yourself up and look for air, and then food. After that the two versions of the movie diverge. In the mental illness version people are waiting for you to bootstrap your way home, so you can explain why you chose to miss the shuttle. There is no NASA on the other end of the com-link. There is no one in Times Square cheering for you. Because you have mental illness. Which is in your mind. So—most of the audience believes—–it must somehow be your fault.
It turns out you don’t need everyone on Earth to get you in order to survive out there. What you need is to flash the sun’s reflection off the cleanest parts of your broken ship that you can find. Aim the reflections at Ceres. The entire mental health community is on that little planet out in the middle of the asteroid belt. We see your flashes, and we try to shine them straight into the eyes of family and friends and colleagues who want to understand what you’re going through.
Some are better than others at responding. Much of this has to do with fear, and most of the fear has to do with a disconnect in the empathy circuit between the person stranded by mental illness and the people brave enough to remember that you are alone in a storm. To truly empathize with mental illness is very hard. It requires pretending you have it, which requires relinquishing a lifetime’s worth of good ol’ American Can-Do training.
Basically, empathy for mental illness takes work. But, with approximately one in five Americans suffering from some form of mental illness in their lifetimes according to the NIMH, chances are that it touches just about everyone. So the work should be worth it.
My personal work has included reading as many memoirs as I can find. From Mark Vonnegut’s The Eden Express to Kay Jamison’s An Unquiet Mind, from Susannah Kaysen’s Girl, Interrupted to Melody Meozzi’s Haldol and Hyacinths, there are voices out there which help me remember I am not alone.
I feel the best when I eat well, exercise, and get some sleep. I feel the most authentic when I listen to my heart, and when I say my truth whenever I have the energy.
Here is the message I have kept flashing, over and over: “I am doing my best. Even when it doesn’t look like it to you, by your standards or when you project the coping tools you have onto my reality, I’m doing my best. Inside, much of the time, I am in excruciating pain. When it looks like I’m really happy or contented, I might be. But chances are equally good that I’m desperate, and putting on a great show. This is me, reaching out to you—I know. Again. And it won’t be the last time. And I’m sorry—to ask you to see me trying. To ask you to listen, and even to carry my hope for me some days when I can’t get it off the floor myself. This is me, needing you, and asking you to tell me I am loved.”
Listen to a sample from Kevin’s Audiobook “Black Sails White Rabbits: Cancer Was the Easy Part” here.