Nothing About Us Without Us Part II: Worry and Help

This Thanksgiving, as my kids left, I called out to each of them, “Take care!” “Drive safe!” Probably, I threw in a few of my other favorites like “Be happy!” Or “Be good!”

None of the people I love, especially my children, leave the house without being carpet-bombed by my bon mots. What do these incantations really represent? They’re the language of worry. I speak worry fluently; in fact I'm a native speaker. This kind of speaking is hardly peculiar to me–most of us do it. It's a way of expressing care and concern, since it’s certainly not actual practical advice.

These sayings could be labeled as what they really are: blessings. In other words, the language of worry is a dialect of the language of love. When someone I care about steers their car onto the highly hazardous reaches of Highway 1, I send them off with a blessing no different from the rituals I've heard from many people around the world that involve incense or pouring libations. The language of worry is spoken widely, in many tongues.

Okay, having admitted to being a consistent inflictor of these anxiety statements, I should also confess to being prickly when I'm on the receiving end. Some of the admonishments tossed my way feel insulting, as if I'm an idiot who needs to be told how to look out my window to see the view, or not spill hot coffee on myself, or let my dog sniff my cat. All of these are real examples. Even so, it seems hypocritical for me to casually toss off outlandish advice but be unwilling to receive it from others. We need to figure out how to receive as well as give.

But it's not that simple.

For many of us, harmless loving blessings can become cover for something that crosses the boundary from care and concern to a region of human interaction that's much darker. In extreme but very real cases, worrying or helping becomes dangerous, as were going to see.

You might recall my mentioning meeting folks from Not Dead Yet. These lawyers, educators, and others work hard against euthanasia laws. As I understand what they've said and written, they know from first-hand experience what happens when “helpers” get carried away assisting people who are unable to run away or strenuously object (or object at all) to what's happening to them. Some of the stories I heard from this bunch were deeply frightening, because anyone can end up vulnerable. I've learned firsthand that helping can be a slippery slope.

The topic of euthanasia and its sister subject suicide are alarming to most of us. When my wife was diagnosed with ALS, the idiot neurologist who told her of her diagnosis immediately raised the issue of Mary or someone killing her, and Mary never got over that terrible juxtaposition. Over the years she gradually devolved the protection of her life onto me. In a marriage, nothing is more intimate than the sharing of life - and death - choices.

In writing about my wife's suffering and death, I feel concern that these extreme subjects could be alienating to a casual blog reader. Thankfully, few people get ALS. But we all die, and I suspect few escape some encounter with harsh choices and bungled assistance.

Let's get practical. What's a person to do, who means well and wants to help? Having worked in the “helping professions” all my life, having helped my wife with her illness and living with mine, here's what I think I've learned:

1. Don't abandon your impulse to help. I believe it's part of what makes us human.

2. If you're at the receiving end of being helped, learn to say yes. Be gracious. Take those damn deep breaths everyone is always telling you about before you fend people off.

3. The 1st through 5th rules of helping in my list of 6 are: ask. I think the key mistake made by the good-hearted is to barge in. This is the slippery slope of the language of worry–we go easily from a harmless blessing to intrusive imposition.

4. A corollary of my caution about asking is, is never go first. Wait. See what happens. Back off.

The really good helpers, people I've met in settings ranging from hospice to gas stations, mostly listen. They are receivers more than they are transmitters: they hear, absorb, and only then–they respond, modestly.

There is an innate power gradient involved in helping. Once you’re labeled as sick or old or just plain helpless, others assess their own power as greater, and this gives them permission, they feel, to impose themselves in ways that they would find intolerable were the situation reversed. As both someone who likes to help and someone who is learning to be helped, I know that issues of power and domination are at the core of this most human transaction. I remember a conversation with one of the Not Dead Yet activists, a lovely woman born with spina bifida, who starkly described the unmistakably murderous impulses of some of the helpers circling around her life. Even though most of us acquire greater vulnerability later in life than someone with a birth defect, there are otherwise no real differences between us.

The slogan, “Nothing about us without us,” is not a statement of political correctness or exclusivity. It's an announcement of survival by means of a deep commitment to autonomy, in the face of the infliction of great harm. It’s a dialect of the language of love as much as the language of worry is. And we ignore these warnings at our deepest peril.

The Radioactive Insanity That Is My Living Room

The main difficulty in my life today is the anxiety-induced insanity that caused me to scatter kitty litter on the snow on Thursday, heaven forbid my delicate children should slip on their way in to Thanksgiving dinner. The litter melted into the radioactive gray clay that is its true nature, to be tracked into my house every few hours by the pups: now I live like the Swamp Thing. But I clump.

Summer & Winter

My neighbor and friend Jan, a person of many considerable abilities, has kindly agreed to allow me to share some of his wonderful photos with you.

Below is a turkey he spotted here in Sheepscot this weekend - it's a perfect emblem of the season. Below it I've posted one of Jan's remarkable series of bluebird pictures from the past summer - because we all need hope!

Sunday Back Up

[Part 2 of the “Nothing About Me” post will be arriving later this week; how it turns out may surprise you]

Today I’m musing over two struggles that have got my back up – a state that any reader of this blog knows is familiar territory.

During the last election, my late wife worked tirelessly for the election of President Obama. The run up to voting day came at a time when she could just barely still drive – the mammoth lumbering handicap van – and so one Fall Sunday she went by herself to Obama HQ in Boston to volunteer. But mostly she received spreadsheets of names and phone numbers on her computer. She sat in our living room day after day, calling person after person. She worked hard on every call, even when people were rude or worse. She “visited” with people, listening, asking after families – being the minister she was. I called no one, but did send a few checks that for me were unprecedented.

Mary lived long enough to be mildly disappointed in our new President, but not surprised. Now, goaded by a media with too much time on its hands, I’ve started thinking about what I’m going to do less than a year from now during the next election.

I’m not that much of a rube: I do understand that someone who meets my definition of “good politics” couldn’t get elected to the Sheepscot Board of Fashion, much less President of the USA. And that collecting the enormous sum of money required to be nominated as President, in spite of my wife’s best efforts, involves serial selling of souls. And I cannot conceive of a Republican who could divert my vote. And further still, the reduced circumstances of my retirement obviate a lavish monetary gift anyway.

So what’s the problem here?

As he does from time to time, Bill McKibbon turns my head, in his clean-cut precise way, to higher concerns. He’s been sharing his dismay at the apparent willingness of the Obama government to toss aside core promises about the protection of our world for what appears to be momentary advantage, like a guy who risks wife and family for an inconsequential fling. McKibbon’s smart posturing on the Canadian tar oil scheme has now stalled approval of the proposed pipeline that will drag terrible toxics into our country.

But now we know two things. One is that President Obama was prepared to throw a fundamental promise under the bus as casually as a used candy wrapper, until the shrieking got too loud. And second, what we’ve been granted is a postponement of the decision on this considerable environmental issue until after the election. The implication is: “Trust me.” And I think, “Trust YOU?”

Today’s related puzzle arises from a letter sent by the insurance company from which I buy a Medicare drug supplement policy. The company says they’re raising my co-pay on one med from $45 to $95. They suggest two other drugs they’d love me to take instead – at a co-pay of $4.

My back goes right up. Who is the boss of my heath care? Is it me? Is it my doctors? No, it’s some imperious insurance company. How dare they!

Then I think, so I’m now the defender of the big pharma company that sells the $95 co-pay drug? Shouldn’t I applaud playing hardball with the avaricious medicine rats who by profession relieve suffering and cause it at the same time?

For me the answer is, to paraphrase my grandmother: cholera on both arrogant insurance companies and greedy pharmaceuticals. The answer isn’t to choose between bad choices, it’s to create solutions that serve the interests of the people who are constantly victimized by those SOBs. For me, that means supporting the creation of regional cooperatives to run our entire health care system, top to bottom. I bank at a credit union and I shop at a food cooperative – and my money and food are secure and oriented entirely to my own benefit, and the good of my community. Why not my health care?

Who will mourn the demise of self-important insurance companies if citizen-owned coops replace them? Who aside from bought-and-paid-for politicians truly desires our present insurance-pharma dominated system?

Ah, my friends, “bought-and-paid-for politicians?” This brings us back to election promises. To Mr. Obama.

(Organic) food for thought…….

Nothing About Us Without Us

I have a friend, G., who was born with some major differences in his body from mine, owing to his mom taking Thalidomide. We’ve fallen out of touch: I retired, and we live in different countries. Increasingly, though, I reflect on our friendship and what G. offered me by way of fun and laughs, and also serious learning, now that I deal with my own various barriers.

Some years ago G. and I were at a meeting in downtown Chicago. Being German, G. felt it important for us to repair to a bar he knew for some beer. It was a very cold winter evening, so we opted for the Loop Line of the Chicago elevated train. The bar was roughly opposite our starting point on the – well – loop of that line.

The first station wasn’t accessible to a person using the kind of assistive device that G. used. We walked a couple of blocks to the second station, and could get to the train platform, but not off at our destination station, so we went to another station. There we could get most of the way but not entirely down to the street. So we went back up to the elevated station and kept onwards around that loop.

After ninety minutes of looping and going down and up again and again, we had passed our hotel and the bar twice. Finally, very cold, we gave up. We made up the drink in a hilarious episode at a bar in Boston a few years later, but that’s another story.

That night in Chicago, I considered myself someone who was sensitive to “the rights of the disabled.” Just as I was concerned about the rights of gays and lesbians and transgendered people, African Americans, women – whole inventories of persons who are at a disadvantage in our world because of their identity.

Identities I do not share.

Now, I have daily challenges out in the “able-normative” world because I can’t function in parts of the infrastructure, owing to having myasthenia gravis. Some of the barriers are physical ones, but frankly they are pretty cut and dry. The barriers that really thwart me are the outlooks of good-hearted people like me, who want to be sensitive to my needs, who want to help me.

“LEARN TO ACCEPT HELP” I am told, over and over. Do I want to live in a hermetic universe unencumbered by the supportive assertions and exertions of people who intend nothing but the best for me? Years ago G. introduced me to some wonderful people from a group called Not Dead Yet, mostly lawyers and educators who had been born with very different physical manifestations from the norm. This organization, which opposes euthanasia laws, is where I learned the slogan, “Nothing about us without us.” It struck me as understandable that no one else could accurately represent their experiences, but bordering on self-defeating to insist on control of the conversation with/about/for them. Now my mind is changing.

When my wife Mary got sick with ALS and became more and more disabled, unable ultimately to move or even breathe without assistance, I was her principal helper. As her illness progressed, my role increasingly included fending off the well-intentioned people around us, from family and friends to medical personnel to total strangers, who barged into a helping stance that was often inappropriate, even dangerous, frequently humiliating. The bruises and busted equipment were nothing for Mary to deal with in the face of the clueless assaults on her dignity.

Now with my own neuromuscular illness, I was recently knocked down by a helpful citizen in the drug store, and have been choked several times by uninvited helpers. One guy I barely know offered to come into the bathroom with me. The list goes on, and I want to assure you that in all the learning I’m doing about my illness, having some humor about well-meaning insensitivities is high on my list. I can’t go around growling at everyone.

I may be less abled than I was that cold night in Chicago, but I’m still not the same as my buddy G., just as all people in any category can’t reproduce the experience of others in their social clump. In our knit-together society, we’re still all individuals.

So how can we help people around us? I need and increasingly enjoy assistance. I believe fervently in the social contract: a society that includes laws to protect the vulnerable, and rules to promote the welfare of the various beings with whom we share our world. How does my pro-social stance square with a slogan that repossesses identity so fiercely: Nothing About Us Without Us?

Stay tuned as we look into this apparent puzzle in the next blog post.

Puppies or Publish or Perish

I’m amazed after less than a week of blogging how many people have read this blog, how many have troubled to write to me, and who you are.

Jimmy my smallest pet gets the most mail. While this blog is not a democracy, I’m going to reward all you fans of my 10-pound friend with another photo of him.

The article that’s stirred the most response was about police power, coming out of the Davis OWS demonstration. One especially thoughtful email came from a friend of mine who’s married to a cop.

People in Europe and especially in Russia are reading this blog, maybe the latter because I’ve mentioned RT, the fascinating Russian TV network that is available for free even here in rural Maine. It takes looking around to locate it, but it’s worth it – yesterday’s programming included provocative interviews with Frances Fox Piven and Vandana Shiva, among others.

The largest block of people came to this blog from a wonderful world-wide coterie of people who, like me, live with the chronic neuromuscular disease, myasthenia gravis.

I’m not going to disappoint the MG people with endless posts about geese and pups – I have a number of articles in the works about myasthenia, living with chronic illness in the midst of the health care debate, err, that’s “debate,” and a number of other health-related topics.

Also coming is some discussion about the moving target of ownership – patents and copyrights - in our fungible digital age (see the Creative Commons License at the bottom of this page). Who owns what is a long-standing concern of mine, dating from my second book, which was about the ownership of life. I co-wrote it with Hope Shand; Bill McKibbon wrote the introduction.

And for that possible majority of you who endure my screed only for pictures of Jimmy, here’s another one taken as he recovered from playing out on the snow:

Broken Tree

For me the high point of Thanksgiving was a gentle conversation with my kids (the Atlantic offspring in person and the Pacific two by phone), about a delicate subject.

My wife died a year ago. We celebrated Thanksgiving just a few days later. Not surprisingly I hardly remember it and in fact I don’t think I could even tell you who was there, except I remember we had turkey.

This year, all of us were more coherent although no less grieved. Our conversation was about how we might have holidays in the future, starting with this Christmas. I was raised without celebrating Christmas, so I feel particularly at sea without Mary’s guidance – and really, for all celebrations and holiday events. The Rev Mary was the empress of events – she loved those rituals, and kept them well.

So the kids and I talked about holidays without Mary, family celebrations that had been designed for the pleasure of small children who are now grown adults: the holding of family gatherings for a family that is almost daily more separated by many degrees of latitude and longitude.

This morning as I sat looking out over the marsh sipping coffee, thinking of the changes since our family center-post left, I tracked the slow flaps of a good-sized eagle up the Dyer River past my window. Then I put the coffee down in astonishment.

Across the river from the house are the Five Trees. These huge trees were the center of many of Mary’s descriptions of her beloved marsh, pillars always present in her pictures, poems and stories. The northernmost of the five, with its three crowns, appears in dozens of photos of the river wending through the salt marsh.

Look up at the picture I took of the marsh around 80 or 90 days ago, at the top of this blog. You can see that northernmost tree with her three crowns; one of her sisters is to the left. The various tide and goose photos of the past few days show others of The Five.

Here’s the tree this morning:

Overnight it’s become a two-crowned tree: the distinctive shape of the marsh is changed from what I’ve come to expect in my daily parsing of life here. Aside from seeing the altered landscape, you can I’m sure also see the connection between the new two-headed tree and our Thanksgiving family conversation. The ache and sadness of losing a beloved person will never leave us. But we also know that as a family, we adopt new shapes and allow change even while our love and our loss remain. Heraclitus is famous for having said, “Everything flows.” The broken tree reminds me today that around the flow of change is an ageless peace and stillness that embraces us all.