Jan 2012 ME Story: Kassy

It’s a new year, as I write this, Top Ten lists are everywhere, inventories are being taken and ledgers are being balanced. So I thought I would write my M.E. story in that spirit of taking stock.

These are my personal top 5 negatives and top 5 positives about having Myalgic Encephalomyelitis.

First the negatives, because they’re easiest to notice, and because I’d like to get them out of the way and then end this on a positive note.

5. Material

The fifth most awful thing about having this disease has been its impact on my material life. In the nearly-five-years since I got ill, I’ve lost my house, my car, and half my household belongings from furniture and large appliances to broken kitchen gadgets and dusty knick knacks.

Some things I can do without, but others need replacing. Things are not important to me, as acquisitions, but useful things are useful, and the lack of them causes hardship. P

Pain happens to us all. Disability happens to all who survive to old age. If I must be prematurely disabled, I would like to still have a home and transportation for myself and my children. Survival demands that much. So this does rank, if only in 5^th place, among the top negatives.

4. World

Loss of The Whole Wide World is a pretty big thing, but it still only ranks 4^th. The world is still there of course, but for me it has shrunk dramatically. Gone are my hopes to travel abroad, and even day trips around the Bay Area and weekend visits across California are impossible for me now.

When I get out into the Big World now, I don’t travel more than an hour from my door, then I can do one or two things before I’m exhausted, and I’m down sick for at least a couple of days afterwards. Necessary trips get precedence of course, so it’s yes to the dentist and no to the beach, yes to the social services office and no to a friend’s birthday party.  I follow the world’s doings from bed, via laptop, but rarely feel included.

 3. Self

Not to put my self above the world, but of course the world itself hasn’t been hurt by my being sick. Just my ability to interact with it. So 3^rd for me, a little bit harder to deal with on a day to day basis than not being involved in the world, is not being myself. At least, I am not the self I was.

Five years ago I had a career and also did volunteer work in the community, was an avid and active outdoors person, I loved to dance up a sweat, I grew vegetables and wrote screenplays (though sometimes both were rotten tomatoes),  I arted and musicked, I pitched in and helped family and friends in need, and as a parent I did a ton of stuff with and for my children.

I’m told that I am not the things I do, and also that I am not my illness, but people in chronic pain know, between new limitations and crankiness from dealing with pain, we lose our selves. I’ve lost my old self and am working on building a new one out of the scraps.

 2. Love

We’re getting pretty close to the top worst thing of all, here. A huge part of the pain of being chronically ill, is the pain of lost love. I’m not talking merely about romance: although the challenge of having a romantic relationship while being so ill is not one I’ve succeeded with so far, that’s just one aspect of love lost.

Ties to family are injured now that I can’t share holidays or shoulder hardships together. Friendships deteriorate because I can’t meet up and work and play together.  Then there are the complete, irrevocable losses to death: the illness has killed people I cared about.

1. The Worst Pain of All

So, what could be worse than losing loved ones who die of this disease? My own physical pain perhaps? Nope. That didn’t even make it onto the list, debilitating as it is. The number one top negative thing, the worst of all, is seeing my daughters suffer.

When I got ill five years ago, so did my two daughters. One has gotten mostly better and can be fairly active but still suffers from migraines and insomnia. The other is mostly bedridden and in constant pain.

Seeing one of my beloved, bright, active children having to reduce her activity, missing school and fun because of migraines and lack of sleep, while her sister is forced to spend her entire teens mostly alone, in a dim and quiet room, and fearing that she might some day give up on the long and painful wait for a cure and opt out, as so many victims of this disease have done, through suicide: it’s the worst.

We have an anti-suicide pact and do all we can to keep one another going but the fact that we are basically optimists just barely saves us. I would take on every bit of my daughters’ disease if I could, I would become ten times more ill than I am, if I could by doing so take away their reasons for despair and give them back fully active and reasonably pain-free lives.

Wow, bummer, huh? After all that, what could possibly be positive? Will I be able to list five happy things for you, that even begin to balance the ledger?

Well, Michael J. Fox said of his disease, Parkinson’s,

It’s a gift. It’s a gift that keeps on taking, but it is a gift.

The uses of adversity and all: such platitudes contain much solid and comforting truth. So here we go: five positives.

5. Endurance

I was already a pretty patient person. If kept waiting in line a long time, I’d politely ask the reason for the delay, do something to help speed things up if I could, and failing that strike up conversations with other folks who were waiting or find some other way to amuse myself.

But chronic illness takes that sort of endurance to a whole new level. Wait months to get a wheelchair approved by insurance, for example. Spend more time waiting in person and on the phone with more bureaucracies than you’ve ever had to deal with before. File more paperwork, despite cognitive challenges. Spend more time in medical waiting rooms and waiting for test results.

How is this a positive? Remember, the uses of adversity. I am more patient and resourceful than ever before, and while I was never the huffiest, snippiest customer, I am kinder than ever to the people on the other end of the equation: the bureaucrats, bank tellers and receptionists all have to endure the same waits many times over and as The Roches sang, “Can’t we have a party? After all, we have to sit here.” So Endurance becomes Found Time, useful and enjoyable.

4. Humor

It’s often dark humor, yes, but it’s there: the sublimely ridiculous. It’s not scintillating enough to take the top spot in the positive side of the ledger, but easily in 4^th place comes the humor to be found in even the hardest situations.

One example? How about those banks? When they were lying to me, stalling me, misdirecting me and generally mismanaging my home foreclosure, I had to laugh at the Keystone Cops act. Sure, I was losing my home and my children’s home and that was devastating, but when you’ve been transferred for the fifth time, lost off the phone queue, and then you call back and they send you to an entirely different department, which evidently was supposed to be handling your renegotiation all along, isn’t that a little funny?

Especially when they hired a person not once but twice to drive all the way out and visit my remote home and hand me a slip of paper with a wrong number on it. Seriously, I called the number where I was supposed to be urgently needed to talk with a loan officer, only to be told that number was disconnected or not in service.  And the whole charade was performed twice. Come on, that’s funny!

Funny things like that happen all the time, as services are cut and the poor and sick get poorer and sicker. I really have to laugh.

3. Growth

We all know that personal growth is impossible without some pain, right? No pain, no gain, should translate to the more pain, the more gain.

I don’t know if that’s true, but certainly I’ve become a better person in several ways, though my disability. My humility has increased, for one thing, because I have had to ask for help and accept my new limitations.

For example, accepting cognitive impairment has been a real workout for my ego. I was the reading whiz who went “tsk” in First Grade when the other kids stumbled over words, but my newfound learning disability has made me a better human. I now understand what an enormous task reading and comprehending can be. I have to ask for help to understand letters about disability benefits and forms I’m required to complete.

I am a more patient, more compassionate person and for that I’m truly grateful. The disease is in itself an education in Humanity.

2. Awareness

Before I became ill, I was aware that people suffered catastrophic illness, endured chronic pain, became suddenly impoverished, and even nice, middle-class families sometimes became homeless. That was all sad, and I contributed what I could, now and then, but I knew that there were government agencies and private charities that took care of those sorts of problems.

Right?

Wrong.

The help is too little, too hard to find, too under-funded and overrated. The common belief that Somebody is taking care of the poor, sick, injured and homeless is comforting and misguided.

So how is it a positive—and even Second To The Top in my list of positive—to learn that care and comfort are myths?

I would always rather know the truth, and then be able to work to improve a situation. When I become aware, I can help make others aware, and change becomes a shade more possible. Knowing the bad, I can try to do some good in the world, which is, to me, the point of being alive at all. So voila, disabled as I am, my life has purpose.

1. The Best Consolation of All

Here we are at last: the top positive aspect of having Myalgic Encephalomyelitis. It’s the caring. It is vast.

It’s me caring for my daughters and them caring for me. “Caring for” in the sense of performing small personal services for one another, but more than that, “caring for” in the sense of loving.

If life has a purpose, my best guess is, it’s love. How much can you love, before you die?

My family have continued to show their love and support in every way they could during five years of illness that have placed tremendous stress on family ties. Stress comes and goes; love always wins.

Some social ties have weakened and been lost altogether, but other friends have rallied around and their steadfast love moves me to grateful tears.

Yes, yes, this is the mooshy part. Deal with it. It’s the best.

To quote another song, this time Alan Parsons,People that I’ve never seen are kind to me.

People who I know only via the internet have seen me through the darkest times, and they do this because they know exactly what my suffering is, because they share my disease. We are an amazing global community.

Happily, I’ve been able not only to receive but to continue to give support, love, and caring to my M.E. community members and my other friends and family.

Parts of us survive death. A recent near-death experience forced me to expand my assessment of which parts. I knew scientifically, matter and energy are conserved: we have some immortality through the laws of thermodynamics. I know too that loved ones I have lost live on in memory and in the stories we share about them, we who remember them, and in the improvements they left behind through their good works.

Those are all immortality of a sort, but so is love. Pure caring flooded my being—or my nonbeing, I guess it was—when I briefly shuffled off this mortal coil only to shuffle it right back on again. The absolute unshakable experience of the sum total of love given and received is a pretty damn fine consolation prize, and one that everybody can win.

Happy New Year!

Of course, next year I would be delighted to have an opportunity to write the Top Ten Delights of Becoming Well Again. Here’s hoping.

__________________________

Posted by Dominique with permission of the author.

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