[Apologies to BARk Magazine for riffing on their slogan.]

I’m not one to play the disability card. To the scoldings of many, I’ve refused for years to get a “handicapped” placard for my car though I’m eligible. My attitude towards those things is: if I can’t walk, I can’t drive. (Yes, yes, I know: one size does not fit all.) The only exception I’ve allowed myself – until now – has been my transit discount card. I live in the San Francisco Bay Area and though we grouse incessantly about it we are blessed with good transit. I think everybody should have a transit discount card, at least until transit reaches funding parity with our over-subsidized automobiles. You’ll pry mine, as the saying goes, from my cold rigored fingers.

Anyway, I pulled another benefit from the disability stack last week: I got my dog, Otto, declared an assistance dog. I’m both embarrassed and relieved to have him so marked. Otto is 20 lbs and fiercely intelligent but trust me: his brain is the only fierce tissue in his body. He arrived in my life just a few months before the premiere of my liver cancer / transplant drama and If I’d known what was coming I’d never have gotten him. Now I look upon his arrival as divine intervention, likely instigated by my late mother. (Mom survived by tackling the tough ones, but was not above a bit of consoling along the way). It is understatement to say I wouldn’t have made it through these past two years without Otto.

Declaring a dog as an assistant – or service animal in government-speak – is made possible by the Americans with Disabilities Act (ADA) first enacted in 1990. Some who don’t know anyone with a disability know the ADA only from its excesses: sensational news reports of a half-million dollars spent on a ramp to a government trailer worth $50,000 and that sort of thing. But the act does a lot of good for those who need it; for many it changed the world. Among its statutes it establishes the right to service animals. Here’s the government’s non-legalese description:

Service animals are animals that are individually trained to perform tasks for people with disabilities – such as guiding people who are blind, alerting people who are deaf, pulling wheelchairs, alerting and protecting a person who is having a seizure, or performing other special tasks. Service animals are working animals, not pets.

Reading that description you can guess where my embarrassment comes from. Otto as guide? Only if he’s guiding someone to a gopher. Pulling wheelchairs? He’s strong for his size but… no. And I haven’t had any seizures lately (read: ever) so he doesn’t qualify there. No, Otto falls in the “other special tasks” category. In his case his task is emotional support. Now before you laugh – or after you stop – remember this is California and more specifically San Francisco and we do such things here. It helps that the ADA leaves it up to localities to define “service.” For me the “other special tasks” Otto performs are crucial.

Over the last two years I’ve learned a lot about myself and I’ve also learned things about Otto and dogs in general, some of them downright amazing. His sense of my relative health is unerring. One amusing example (to me anyway): being male and living alone, I don’t close the door to the bathroom. Well, periodically Otto follows me in and stands next to the toilet, nose ready, waiting for me to begin. When I pee, he does what I’ve come to call the sniff test. If he’s satisfied with how things come out he just walks away, but if he’s disturbed by what he’s smelling he hangs around, rubs my legs, even lets out a little bark. During a few really bad periods he’s stormed out the bathroom as if angry. Sound far fetched? Well, consider what researchers are doing in teaching dogs to smell cancer cells in our breath and in our urine.

Otto often knows how I’m doing better than I do. If it’s walk time and I’m on the couch and and feeling achy or down, I don’t get a pass. Walk time is walk time, get off yer butt. Invariably I feel better after, even if we only manage a few blocks. But if I’m really sick he doesn’t even ask and even resists if I try, snuggling down with me for a nap instead. And he just refuses to play tuggy with me after surgery. Tugging on a rope is his favorite game, but he won’t even to bring me the rope if he judges I’m not fit for it.

My most amazing experience with Otto-as-caregiver happened in January when I descended into medical hell. After each of three hospitalizations, Jeff brought Otto along when picking me up. The first two times – when I was getting worse though I didn’t yet know it – Otto’s initial ecstatic greeting immediately morphed into horror as he got a smell of me. Both times he backed away into a corner of the car, staring at me with an awful “what is WRONG with you???” look. The third time they busted me out – by then I was quite nervous about passing this particular “Otto test” – he sniffed, made his judgment, then showered me in kisses and settled happily on my lap. I passed. And I got better.

How does a little 20 lb half-Dachshund, half-Jack Russell-with-a-dash-of-Beagle know all this? He’s grown up watching me go through this stuff; he was only seven weeks old when he arrived and three months when Dr Cassandra called. Is he just used to my struggles? Is it only our particular history together that created this awareness and sensitivity in him? Or is it more?

I have become obsessed with dogs, reading every book and watching every documentary on the beasts I can find. Dogs continue to amaze the scientists and certainly me. I think they would amaze everyone but we don’t notice how unique they are because they’re such a regular part of our lives. No species on earth comes in as many varieties as they do. And it seems the “which animal is smarter” debate is a canard. Chimps are smarter than dogs, no question. Yet when it comes to reading and responding to humans, knowing what we’re doing often before we do – researchers call it recognizing social cues – dogs win paws down.

So how is Otto “assisting” me? Why did I cave and grab this particular disability benefit? I can say it’s because now I have the right to bring him with me on transit – important when I’m too addled to drive – or because it guarantees that he can’t be evicted should my landlord decide dogs are no longer welcome. True, both. But it’s more than that.

Laugh if you like, but the bond between a dog and someone “disabled” is downright transcendent. When I’m feeling bad Otto’s there commiserating. But when I’m better all that nasty stuff – the hospital, the pain, the hard times – never happened.

Do you understand what I’m saying? Even though Otto clearly retains some memory of my situation, when the bad stuff ends it is gone. Gone. No person – no matter how close, no matter how caring – can hope to achieve what a dog can when it comes to treating those of us living with a chronic condition or illness as undamaged goods. This is indescribably liberating, a gift if there ever was one. And right now I so much need to keep tight hold of this gift.

With Otto, when I’m feeling good all that matters is, it’s tuggy time!

___

Well, maybe there’s a little truth to the idea.
Want to see more Otto pics?
Here are his three calendars. No, really: Otto has his own calendars.

Otto’s calendars 2006-2008

I am not proud of this.

Friday morning I awoke with my right eye desert-dry, red, lumpy and painful. It hurt a lot, every blink an agony. What moisture it managed to produce was pink in color, tears mixed with blood. I could hardly see and it was impossible to read. Sentencing me to a life without reading would be crueler than marching me down a long hall to a gas chamber with a noose around my neck and a cocktail of lethal injections in my arm. I was not happy.

This isn’t the first time an eye’s gone bonko lately. My eyes have been chronically dry for years and the meds making up the small mountain of pills I take daily thanks to the liver transplant and my other ailments have only made them more so.

Worse, a few months ago, after my latest near-death experience and the rise of my belly-bubble, the docs put me on a heavy dose of diuretics, two flavors, in an attempt to keep said bubble under control. Besides the obvious side-effect of making it impossible to pass by a bathroom without saying hello, diuretics have wreaked havoc on every moist membrane in my body. Especially my eyes.

More than once I thought I’d have to go to a doc or the ER to have an eye checked out for the symptoms I describe above, but I always found an excuse to avoid it. It’s late, I’d rationalize; sleep and see how it looks in the morning. Those tears aren’t really pink they just look pink. Or I’d dither so long on what to do the pain would lessen and I could see again, if tearfully.

Friday however the full set of symptoms were present when I woke up and only got worse as the morning went on. The ache was awful. My friend Jeff – Saint Jeff of the Infinite Patience I should call him, at least when it comes to helping me with my health “issues” – called at just the right/wrong time. I told him what was going on. “I’m coming over,” he said. And so he did and we agreed I should go to the ER and have the eye checked out. All my usual contacts at the UCSF Liver Clinic were away – it was Friday – I had no other option.

So I get to the ER which is mercifully quiet at 1 in the afternoon. The morning day-care rush of uninsured sneezing children are gone and the gunshot wounds and overdoses haven’t clocked in yet. It’s just me and a few others, all in one form of medical misery or other. I do the insurance intake blotting my eye, taking note of the continuing pink of my tears. Another short wait and a nurse calls me in, does the blood pressure-temperature bit, tries not to gasp as my medical records pop up on her screen (”Uh, which organ did you have transplanted, Mr. Brownson?”) then asks me to wait in a nearby hall for a visual acuity test. “I can see,” I tell her. “It’s the bleeding and the pain I want to check.” I give my best pleading look. “I don’t want to lose an eye.” She nods in that ER “we’re on it” kind of way.

A few minutes later – it really is quiet here – another nurse points me at an eye chart. As predicted I can see ok between the painful pink blinks if I have to. I repeat my plea. “I just want to know if it’s damaged and if I can get some of those numbing drops to control the pain.” Another concerned ER nod and I am led to a “room.” Now, unless you’re having a heart attack or are full of gunshot wounds, a “room” in the ER is usually just a niche in a hall with lots of tech equipment and medical supplies jammed around a bed. If you’re lucky, a curtain closes you off from everybody else. You couldn’t squeeze three ER techs in these spaces if they had to save your life.

The nurse points to the bed, on which is a hospital gown. “You can…” but I bolt to a chair that is half in and half out of the niche. No way am I putting on the gown and getting into that bed. “OK.” The nurse shrugs. “You can sit there if you like. Your charge nurse will be with you shortly.” She gives me another ER smile, curtains me in and disappears.

And so I sit in the gray light blotting my eye. Five minutes, ten… The medical equipment and tubes and rubber gloves lean in on me; the hospital gown, neatly folded and placed at a cocky angle on the edge of the bed, fills my aching eyes. Since I cannot read I cannot distract myself from my ever-active mind. Dangerous.

What am I doing here? Every time I blot my eye I check for signs of lessening pink. The pain is receding and the post-diuretic headache is kicking in – a sign the process that caused the eye problem is cycling through. Why am I here? This is an ER! I am NOT sick! Up goes my anxiety.

The main reason I haven’t written much in this blog lately is that over the last dozen or so weeks I’ve experienced my longest period of “functional” in two plus years. Yes, I’m still anemic. Yes, the Hepatitis C is still in my liver and my blood, muttering and plotting like a madman in the shadows. I still get dizzy and achy and tired and at times befuddled and blah and blah and blah. But I’ve also traveled: two trips to the Tahoe area, one driving and the other on the train over Donner Pass. I made it to the gym last week, first time in five months. Twenty minutes’ exercise takes everything out of me, but it’s a start. I’m planing to visit my sister in Wyoming at the end of the month. I even have hopes of getting back on my bicycle soon.

Sitting in this ER “room” throws me right back into the miseries of December and January and my post-hernia surgery metabolic collapse. Three ER visits over “the holidays,” serial hospitalizations, the worst pain I’ve ever experienced – hell, ever imagined – the weeks and weeks of recovery that still isn’t complete… these things are still too too vivid in my memory. But most of all sitting here reminds me of the devastating hit my very being took from that whole miserable michegas, a hit that left more damage than the liver cancer and transplant ever did.

The niche is dim with the curtains pulled but the lights on the equipment are bright. I blot my eye again. There is less pink. I blink, the pain is down. I hear a woman in the room next to mine on a phone telling someone she’s ready to go but is waiting to be discharged. Eventually I see her through the gaps in the curtain; middle aged and in a red dress, she leans out in the hall anxiously looking for someone, anyone, to come and set her free.

What AM I doing here? It’s becoming an obsession. I won’t give up the life I’ve pulled together, however hobbled, these last twelve weeks. I just won’t. They cannot take it away from me. No! The ER only leads in one direction: to more procedures, more doctors, more exams, more endless nights and days in the hospital – that horrible wonderful hospital that saved my life only to put me through groundhog days of torture. WHY am I in the ER? WHY did I come?

The charge nurse doesn’t appear. The woman in red makes another call and haunts the hallway. My eye hurts less and less, my anxiety hurts more and more. The pink tears stop. I fantasize about walking out, just getting up and leaving. The more I think about this the more urgent the idea becomes. I argue with myself: Stay and they will steal my twelve weeks. I’ll be imprisoned again in perpetual “unwellness” and this time I might never escape. I have to go, I have to go.

I look at the gown on the bed, the lights on the equipment, hear the woman in red call for someone, anyone, in the hall. I dab my eye one more time, still no pink. Without consciously deciding to I grab my backpack, jacket and hat, stuff the hat in the pack and back out through the curtain into the hall. I look for an escape but can’t see one, just halls leading to halls.

“Can I help you?” A young nurse carrying sheets and gowns appears.

“No, no, thanks. I’m fine. I have to go.” I stumble all over my words and flash a panicked smile.

“I’m your charge nurse,” she says. “What do you need? Here, come on in…” she indicates the little room. “Lets see how your eye…” The woman in red watches and I am aware enough of what I am doing to be know I am telegraphing panic.

“No, no… everything’s fine, really. I’ve got to go. Really. Got to.” I hurry down the hall and take the first turn. I see doors to the world but they are marked “Ambulance Intake Only.” The charge nurse rounds the corner. “You can’t go out that way that’s for ambulances.” I’m trapped. She sees the panic on my face. “You have to go out the way you came in,” she adds gently.

“Thanks,” I say, my face redder than my eye ever was. I pass her by, back into the main hallway to the next left but it’s a dead end. Finally I find a hallway that leads to the intake area.

“Everything all right?” asks the intake nurse. “You’ll be right back.” It is a statement not a question.

“Fine, fine, thanks.” I’m shrivelling into a pit of chagrin. “I just… my eye is fine, fine. I just have to go. Thanks. Thanks so much.” And I bolt through the double-gated security-guarded entrance onto the street.

I’m both enormously relieved and hugely ashamed to be standing outside again. I am liberated and I have also let these people down, the same people – sort of, anyway – that saved my life two years ago. And now I’m running from them as if they are evil incarnate, each one intent on sucking out what is left of my life.

I go far enough to be out of sight of the ER and call Jeff. “Please, please don’t yell at me,” I start, then tell him what happened. He pauses, but does not yell. He does understand, at least on some level. “I’ll pick you up,” he says. “We’re not far.”

As I cross the street to the elevators that will take me to the rendezvous point – UCSF is on a San Francisco hillside and is vertical not horizontal – I’m overwhelmed with shame. I pull out the cell phone again and dial the hospital general number. Yes, I have it memorized. They connect me with intake at ER.

“This is Ed Brownson,” I say. “I just came in, but I had to leave. My eye is fine. I really really apologize for taking up your time. Everything is fine. I’m very very sorry.” The person on the other end asks a couple of questions then thanks me for calling. “Please tell the staff I’m sorry for taking up their time,” I repeat. “Oh, and tell them I didn’t touch anything in the room.” As if that makes it all better. I get in the elevator and go down to Irving Street to wait for Jeff.

As I said, I’m not proud of this. Truth is, the whole bloody experience was devastating. I panicked and I don’t panic easily. Or proudly.

Oh, there are excuses if I want one, no problem. The awful experiences of December and January. The fact that ERs never listen to what you say or to what you need but always go for their procedures and protocols no matter how irrelevant. That I should not have to go to an ER just to have an irritated eye looked at but should be able to go to a drop-in clinic – same with all those kids with colds – if only this damned country had an intelligent health system. Or I can evoke the most honest and easiest excuse of all: after two years of all this, I. Have. Had. Enough.

But as we learn when we are kids, excuses change nothing. I bolted. I panicked and bolted from the ER. And I found out another limitation on my once unchallenged carpe diem “nothing gets to me” attitude to life.

In January I found my limit to pain; I didn’t know where it was before. Now I’m learning just how many trips to the hospital, how many medical procedures, I can take before I crash and burn in red-faced madness. Two years ago, when I sailed through the liver cancer and the transplant, the lesson seemed to be “I can survive anything.” Now I see how thin that illusion is. I guess 2008 is my year of learning limitations.

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It’s been too long between posts. I’ve decided to add less edited, more frequent comments and experiences to the mix. Oh, I’ll still be doing the essays, I seem incapable of not writing them. But they take longer to think through and there is so much more going on in the life of a professional transplantee and lab rat… Stay tuned.