The Underworld of Overwhelm

I was diagnosed December 12th—good timing, in ways. I took “incomplete” grades in a couple classes and went home for Christmas and the January “interim” period. It never occurred to me to hide my diagnosis; I included the news in my Christmas card notes. I offered my boyfriend a no-fault escape from our relationship because I was no longer healthy. (I later discovered this is a common response, even among married people: I will give you one chance to say you want out. If you don’t take it, I will be able to comfort myself that I gave you that chance.) I tried to be brave and funny. I joked that I had gotten the diagnosis in honor of the International Year of the Disabled Person (which was just ending).

I am a youngest child with siblings 7, 13 and 15 years older than I. My journalist brother contacted the MS Society for information and we spent family gatherings reading highlights of MS brochures to each other. Knowledge is power in my family and we felt better to know what we could.

There wasn’t much to know. My body’s immune system was mistakenly attacking the insulating material of my nerves. As my nerves became covered with scar tissue, the signals would have more difficulty getting through. Symptoms could include blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, and blindness. These problems could come on suddenly, might last for a short time and then disappear. Or, sometimes, the damage could be permanent. The IV steroids I received in the hospital were the best treatment of the time…to reduce the inflammation around the nerve and encourage the immune system to back off.

Right after Christmas, my 97 year-old grandfather died in Oklahoma. I overheard my mother on the phone with her step-mother, explaining that my diagnosis was such a shock she was having trouble thinking about the funeral. I felt a physical jolt as she said it. “Perhaps,” I thought, “I’m not taking this seriously enough.” Now that I’m a mother I better understand her response.

A classmate, hearing of my diagnosis, sent me Norman Cousin’s book, Anatomy of an Illness. In the book, Cousins described how, having been diagnosed with a crippling and incurable disease, he (with the help of his doctor) took charge of his treatment. He checked out of the hospital and into a hotel. There, he watched funny movies (to help with pain control) and took large doses of vitamin C. He recovered completely. I wrote in my journal, “Cousins has answered a basic question for me. Do I fight the disease or give in to it? His answer is clear: fight like hell.”

When I returned to school, I took each of my teachers aside and explained the uncertainty of my life under the New Rules. I thought I might be in and out of school because of MS exacerbations. I was hoping for the best, of course, but I wanted them to be prepared for unexpected absences. In fact, I felt fine. My neurologist had said, before I left the hospital, that if I went without an exacerbation for six months, I would probably have a mild case of MS.

I had my second MS exacerbation on June 6th—six days short of six months after the diagnosis. I was dragging my right foot again and felt like my skin was being stuck with pins and needles. I was just starting the university summer session. For a couple weeks, I went to classes in the morning and spent the afternoon and night in the hospital, getting my IV treatments. I walked with a cane. People stared. I had a gauze bandage around my arm, covering the IV plug. (“Football injury?” a stranger joked. “War wound,” I replied.)

In the night, in my hospital bed, the fear monsters would gather around me. They would show me visions of my doomed life. I saw myself in a wheelchair at age thirty, unable to move, unable to go out. I saw my sweetie, condemned to a life of tending the lump I might become. It was my first experience of Overwhelm.

Something in my body, something in my world, has changed. I am unable to make a motion I used to be able to make. What was once easy has become difficult. At best, I am disappointed. At worst, I am overflowing with grief and rage. It is hard to describe the experience of Overwhelm without rushing to explain how I emerge from it…how it all gets better. I don’t want to stay stuck in the muck of grief, but that is exactly what happens. When I descend into the underworld, I am sure I will never escape it.

Here’s my signal that I am overwhelmed by the challenge of living with chronic illness: I attempt some physical action, it doesn’t go well, and I dissolve about it. Recently, we bought a new bed, one that is, in many ways, easier for me. The old one was so high that, sitting on it, I felt in danger of sliding forward and tumbling onto the floor. The new one is low enough that I don’t have that problem. Instead, I have a hard time getting up from it. Now, after weeks of practice and problem solving, I’ve developed an often-successful exit strategy, but at first it went like this:

I slide my walker into position, arrange my legs and feet so that they won’t spasm, and push down on the walker with my arms. My bottom lifts up off the bed, but only a few inches. Gravity pulls me back down. I know that, in this case, determination and stubbornness can be allies. I try again. Whump! Again, I’m back on the bed. Without thinking I say, out loud and with a teary whine in my voice, “I just can’t DO this!”

There it is. At that point, klaxons and flashing lights should go off in front of me. Large orange letters saying “Caution: You are reaching Overwhelm!” should appear in my line of vision. On second thought, that would just make me mad. Once I have reached Overwhelm, I am unreasonable.

What I need, at this point, is a day off or, at the very least, a rest. I need to sit with a paperback novel and lose myself in someone else’s fantasy. I need to go beside a body of water and stare at it. One of the most irritating things about having a chronic illness is that I can’t take a vacation from it. I bring it along wherever I go. Sometimes, even if I’m sitting very still, I can feel the thrum of the disease in my body. It’s not that I don’t forget, for moments, that I have MS. But it is, as they say, “in my face” every time I make a move.

Sometimes (increasingly often, I hope), I am smart enough to realize what’s happening and take a break. Unfortunately, once I’ve reached unreasoning Overwhelm, I am too lost in my monster-mind to understand what’s going on. I engage my determination, fueled by anger that I am ill and disabled, and push on in ruthless disregard of everybody.

I am embarrassed to report that I have spent months, maybe years, in this state. This is why I squirm uncomfortably every time someone compliments me on how well I “handle” my disability. Like most people, I have some skill in displaying a civilized veneer even when I am, inside, a mass of writhing snakes and worms.

Overwhelm comes in so many varieties it’s possible for me to look and feel very different and still be lost in it. In addition to the flash frustration I’ve described, there is a very unattractive brittle anger I exhibit. Like the frustration, it’s often the response to physical limitation, but the anger is directed at anyone unfortunate enough to offer to help. Someone once called it my “John Wayne Act.” I think I’m being gritty and independent. The person who has just been kind enough to offer to help thinks I’m an arrogant asshole.

The Minnesota State Council on Disability produces a publication called “A Question of Attitude ” designed to help people feel less nervous when they are around somebody with a disability. Here’s an excerpt:

You see a person with a disability who appears to be struggling to get a package off of the floor. You approach her and ask if she would like some assistance and proceed to help. She snaps angrily at you, saying that she can get it herself without your help. You conclude that:

a) you should not have helped her.
b) people who have a disability do not want help unless they ask for it.
c) you have just met a person with a disability in a bad mood.
d) all of the above.

The correct answer is c) and the pamphlet goes on to explain: “You cannot learn a set of rules ‘for dealing with disabled people’, follow them faithfully, and expect never to offend. In this case, you just met someone who either does not like to be offered assistance or someone who happens to be in a bad mood for receiving assistance at that particular moment.”

This is fine as long as my bad mood is not lasting several years.

Worst of all is the horrible sopping blanket of depression—my monster-mind at work. If I John-Wayne past all earlier warning signals, this is my destination. My particular brand of depression does not involve being unable to get out of bed. Instead, I continue my daily routine in a mist of grim, determined, desperation. I know myself to be the biggest waste of space on the planet. I am horrible. I am nothing but a burden. The world would be a better place without me. Scrooge had it right: I should die now and “decrease the surplus population .” I begin to make plans to kill myself.

It’s hard to describe my dark thinking when I am not depressed, but since I am a journal-writer, I write about it when I am within the belly of the beast.

Journal exerpt, May 1999: So tonight, when I woke from my restless sleep, the demons whispered: “You see? It’s already here: you can’t get a job; you’re a burden on your family; you went too late to the financial advisor and if you go out on disability, you’ll barely get any money. Your family’s financial future is dark because of your presence in their lives.”

And the tears start, because I believe the demons. S

leep and instead staring at a glowing monitor in the darkness.

What is the value of a human soul? Our culture doesn’t know. We value people’s actions...or scorn them. We value Stephen Hawking’s mind, though we wouldn’t if he hadn’t become a success while he was able bodied. We value Christopher Reeve’s courage, but if he had not been famous before his accident, we wouldn’t know he existed.

Maybe that’s my problem: I always wanted to be famous. Entertainers these days are internationally famous. Maybe the people around me value me for my mind or my courage. They just don’t tell me. They’re Minnesotans, after all.

This morning I threw away a plant that has been slowly dying in our bedroom. It’s too dark in there, but we couldn’t have it out where the baby could reach it. So I threw it out. I could have tried to nurture it back to health, but I didn’t have the energy, so I threw it out. The work world has done the same to me. The difference is that I’m fully capable of doing good work; I know that to be true. Employers look at me and think, “well, she might be OK, but she looks kind of sickly. I just don’t have the energy to hire someone who will require special care.” In these politically-correct times, they may not even allow the thought to be conscious. The other candidates for the job have a certain attractive something that I don’t have. The employer may not be able to say what it is. I know: health. The Ivory Soap ads have told us for years: there’s nothing more attractive than health.

So, here I am: thin, tired-looking, graying hair and in a wheelchair.

After enough descents on this path, I’ve begun to trust that my angels will save me. I don’t take action. I move from suicide fantasies to escape fantasies. I imagine filling the van with gas, taking all the cash I can gather, going as far as I can get and disappearing from the lives of my loved ones, relieving them of the horrible burden I have become.

I haven’t done that either. Maybe that means my depression is not true “major depression.” It feels major when I’m in it. My angels tell me I have felt like this before and have lived through it, but, for a while, my monsters maintain my terrible orbit around thoughts of death and disappearance.

For the time being, the heavens are closed to me and I am stuck in hell. Though I claw the edges of my prison trying to escape, I always slide back down into the abyss. In saner moments, I may realize that ancient stories of descent to the underworld, rolling stones up hills, or being swallowed by whales signal that I am not alone. But Overwhelm is not a sane time. It is an all-consuming plunge into pain and darkness from which I am sure there can be no escape.

Copyright 2006, Kate Wolfe-Jenson, All rights reserved.