Guilt, meet thy maker

A while back I wrote about a call I received in court on a really bad day. It invovled mistaken identities, my mother, and the possibility of cancer. If you recall, there was an instant when I was relieved it was my mother – because it meant it wasn’t my wife. I’d made a choice, consciously or not, and it made me feel terrible. We all make them. I don’t think we can help ourselves. I think my guilt came not just from realizing I’d made it, but from letting it be known.

So what did I do then? I recounted my mistake online for the masses dozens handfull reading my blog.

Ah, but you’re my therapy, and the price is right.

The last post I briefly discussed root causes. Today’s (wild ass guess at a) root cause* is lithium toxicity. My mother took lithium to treat bi-polar disorder for 20+ years. A little more than three years ago, right before I was diagnosed with leukemia and my dad had a little trouble with his heart again, doctors detected partial renal failure/deficiency in my mother. This was (partially) a product of the damage the lithium did to my mother’s kidneys over the years.

In hindsight, I wonder if the anxiety of this news led her mind, on top of everything else, to its rapid decline that summer/fall. From what I know of renal failure, it’s not something your kidneys ever recover – it’s a downward slope. The only question is: how steep?

Well, that was three years ago, and while her mind has improved (relative to a year ago) her kindeys have not. She seemed to be getting along, though none of us (her kids) knew exactly what her kidney function was. It’s not something we ever though to bring up, and I honestly don’t think she’d have known anyway. That’s what the drugs and a two year break from reality do to you.

Well, I’ve led you to the dot. Have you connected it to it’s friends yet?

That call about the suspected tumor? I found out two weeks ago it’s in one of her kidneys. What’s worse, it’s in the better functioning of the two.

Better is a relative term. The ultrasound report suggests both are seriously atrophied. The nephrologist in the family was a little shocked.

I don’t have a lot if hard facts to go on, but my sister is the aforementioned nephrologist, and I have a poor man’s background in pyschology. Pooling those resources with the facts we do know makes me worry the prognosis is not good.

Mom’s mind has shown some signs of regression, though it’s still a long way from where it was a year or two ago. I just hope it stays that way if they confirm a cancer diagnosis. Or if they have to remove too much of her “good” kidney. Or if she has to start dialysis. Or if she has to be hospitalized at all.

I fear fragile doesn’t begin to explain what she is, physically or mentally.

I know. One thing at a time, John. One thing at a time.

– – –

*I don’t mean to imply lithium caused the cancer – or even directly caused her poor mental health. I only wonder if its known toxic effects led to a domino effect starting with her kidney failure three years ago… to mental breakdown… to institutionalization.

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The background: Cheryl (known to many of you as my wife) had an MRI done recently due to chronic back pain.

– – –

It was one of those court days where several people needed to be escorted out of the building. A little conflict goes with the territory. Your agency sues someone, you expect a little hostility. In fact, it isn’t uncommon for both sides to leave with no love to spare for anyone in the room.

But this day was bad. One for the books bad.

Sometime past mid-day, my phone buzzed – vibrated really. I checked the number really quick, to make sure it wasn’t one of the kids’ schools. It wasn’t, but it was a local number, and I don’t get a lot of calls from local numbers. I handed off to my partner and stepped out of the room to answer.


“Mr Kauffman?”


“Is this John?”


“We have Mrs. Kauffman’s MRI results.”

Ah, ok. Why didn’t you call her?

“We have you down as her primary contact.”

That’s… odd.

“Well, we could call her if you like.”

That would probably be best.

“You should know we found something though. She’ll need to follow up with a specialist as soon as possible – in case I don’t get through to her.”

Somewhat alarmed, what kind of something?

“We found a solid mass.”

What does that mean?

“I don’t know, you’ll need to follow-up with the specialist.”

Can you give me a hint?

“You’ll need to follow-up with the specialist.”

Could it be cancer?

“You’ll need to follow-up with the specialist.”

It probably isn’t just a cyst, is it? They wouldn’t appear as a solid mass, would they?

“You’ll need to follow-up with the specialist.”

Can you tell me where it is?”

“You’ll need…”

I know, I know – follow up…

“… With the specialist, Mr Kauffman. It’s really important you do so as soon as possible.”

Ahh… alright… let me give you her number….
Listen, if you don’t get through to her, could you give me a call back. I’m in court today – I probably shouldn’t have been away this long – so I probably won’t answer; but could you leave the information about the specialist on my voicemail too, so I can make sure we follow-up?

“Sure Mr Kauffman. I’ll give Kathy a call right now.”

Did you say Kathy? Kathy is my mother not my wife.

“Yes, Kathryn Kauffman. It says here her primary contact is her son, John.”

Kathy! My mother?

Immediately I realized I said this with relief, and immediately I felt really guilty, followed by really worried… for my mother.

“You are her son, aren’t you?”

Yes, but I’m surprised you called me. I haven’t been the primary contact for any of my mother’s medical problems. I’m not sure I even have legal authority to handle her affairs. My father has been taking care of her. I have his number, but I’d be surprised if you don’t.

“Oh wait. Here it is. Sorry to bother you Mr Kauffman.”

Oh sure, no problem. You just made me pee my pants on possibly the worst day at work of my life. Just think of this as the gravy on the mashed potatoes my life has become.

I was talking to empty space though, the nurse making a hasty retreat.

From the frying pan to the fire then into a pre-heated oven for the rest of the day – yep, that was good eating.

– – –

On a related note, I get to have my first MRI next week – like, EVER!

How exciting is that?

Yep, it was just the other day (about four after the court day from the hot place) I was talking to my bran spankin’ new neurologist (new to me – he’s been practicing his craft on patients for 20 years now), when he mentioned my patern of gradually worse headaches, my history of leukemia, and how it wouldn’t be a bad idea to get a few high tech images of the space between my ears.

I can’t wait – another opportunity to skip work!


Rods and cones

Call it generational bias. Blame it on the way history is taught in school (with one exception, in my case). The world before 1960 seems black and white. I hear it in the stories older generations tell.

It’s not, of course. The world isn’t just filled with gray, it’s filled with all the colors of the spectrum.

I’ve been fooling around with a birthday gift the last few days: a film scanner I’ve been lusting over to scan my grandfather’s slides (as in photography). I never thought color film was available on the consumer market until much later, but hidden in the stuff scavenged from my grandmother’s things was a box of one hundred color slides… taken between 1942 and 1944.

Seeing baby pictures of my mother, my grandmother, my great-grandparents, and half a dozen aunts and uncles (with a few greats to go around) in color has been a thrill.

I know, I’m easily duped, but pictures are a powerful medium. Seeing so many old pictures in black, white, sepia, and the silvery highlights of the really old ones contributed to my bias… my feelings that modern society tended to be morally superior.

Considering where we are, isn’t that sad?

I’d never admit it to you, but I think it’s always been there, looking down my nose with contempt on “the good old days.”

These pictures reminded me we’ve been seeing more than black and white for a long time. The capacity for critical thought goes back beyond the 1960s.

Even our ancestors had rods and cones.

Mom & grandma - 3 Mom and Grandma Conner

My grandmother Conner holds my three week old mother in the Fall of 1942

*If you’re out there Christy, I don’t want to hear about photosensitive ganglion cells.

Joy sink

“Grandma’s coming home tomorrow right? I can’t wait!”

That was Beth Wednesday night, talking to me and our pastor on the first night of confirmation class this (school) year.

“So when will she be coming HOME home?”

That was when Beth realized home can be a relative term.

“Oh,” she replied, crestfallen.

That was when I told her the truth, unvarnished, like I usually do.

Trust is a precious commodity. Cliche, I know – but for good reason. I don’t like being a kill-joy, but I want her to believe me when anxiety has its grip on her, and I tell her why everything will be ok. She’s old enough to remember the times I told her everything wasn’t, that I don’t shy away from inconvenient, uncomfortable, or unsettling truths. I hope she remembers those moments of candor when the truth doesn’t hurt.

Although folks say I’m too skinny these days, there’s a big but in the room.

I realize there’s still a need for comfort; that there’s a way to discuss disappointment in a way which doesn’t flatten wide swaths of hope. I suppose I’m like a lot of parents when I say I wish I was better at it.

Maybe this is one of those times I should let myself off the hook. Words can’t solve every problem, sooth every ill. Many lessons are learned best through experience, and she’ll see things are much better, even if they don’t live up to her original expectations.

The good news is she’ll get to see this weekend, along with the rest of us.


Me mom

My parent’s 40th wedding anniversary is coming up next week, so I assumed I’d be making the drive up to Chattahoochee this weekend with my dad.

But I’m not.

My mother is being released to a local assisted living facility on Thursday. I’ll see her right here in good ‘ole Pinellas County on Friday.

The place looks really nice – about as different from a state institution as you can imagine. It’s certified to care for people like my mom and it’s close.

It’s been about two years. My mother is finally coming home. Several things in my life are gauged by my little dance with cancer, not that I think about it all the time. What strikes me is: my mother’s hospital stays started before I was diagnosed.

It was a different life… not half as striking, but sort of like life before and after having kids.

She still won’t be home exactly, but she’ll be here – she’ll be around. Part of that old life, before cancer created a new reference point, is falling back into the right spot.


Travel much?

Clearly, I do not.

I arrived in Tallahassee Friday night with all of the essentials: my computer, phone, and their cables. However, I did not have the little things; like a brush, toothbrush, or deodorant.

A sticker on the mirror at the hotel reassured, “Forget anything? Ask for it at the front desk.” So I asked. I can follow instructions. I didn’t think the answer would be “no.”

Silly, silly boy. I’m so cute, innocent and naive you could just reach out give my cheek a good pinch.

The highlight of the trip was my mother’s smile shortly after I got there. She’d been out to a movie and did some shopping with my dad Friday, before I got there, and she looked better than I’d seen her in a long time. We did dinner and went back to the hotel to talk and look over the most recent pictures of the kids.

It was all good, surprisingly good.

We met for lunch Saturday and went into town for my first tour of the old Capitol building. I’ve been to Tallahassee many times, but I’d never even driven through downtown before.

After this weekend, I’m not so skeptical of the idea she’s ready to be released to an assisted living facility. The end of our visit makes me all the more hopeful it’s sooner rather than later.

I left with one of those frozen moments in time, repeating over and over in my mind. The large, secure ward door, and a haunted look in her eyes as it banged closed between us back at the hospital in Chattahoochee.

I’m trying to focus on the positive though, and there were a few – more than I expected.



I have a plan. Do you have any idea how odd those words sound in my head, coming from my mouth? Thanks to a gentle nudge from Cheryl, I’m going to try to exorcise a pinch of guilt this Friday by making the long drive up to Chattahoochee to see my mom.

Let it be known: this doesn’t make me a good son. A good son wouldn’t suffer from mixed feelings. Don’t get me wrong, he’d have them – but they wouldn’t torment him. You see, I don’t want to go. A piece of my soul leaches away every time I go. It’s that kind of place, a place without hope. Resignation reigns… learned hopelessness. It’s like a low-income nursing home for the young and old alike, only there’s nothing wrong with their bodies – other than neglect (mostly self-inflicted). It has that same institutional smell, a smell that greets you before the first hello – a smell that seems to weep: “we’ve given up.”

I try to bring a smile with me, but it’s hard, and I wonder if she’s perceptive enough to see the effort it takes. It isn’t much of a smile if you have to try. Maybe you’re wondering why I’d go at all. Sorrow and hopelessness are poor companions. It’s ok to ask. I ask myself every time I go. I hope trying shows her one thing, even if it isn’t reassurance: love.

Someone said love conquers all, but I’ll wager they didn’t say it from an institution for the lost. It’s still something though, and it’s the only thing I have in me to give. So I’m going.

I just wish it was enough.


I’m not sure how I feel about it, but the hospital is making tentative plans to discharge my mother. This should be good news, right? The thing is, she’s not being released to go home – she’s not well enough. Instead, they’re making arrangements for her to be placed in an assisted living facility.

If my life had a soundtrack, something foreboding would be playing right now.

You may recall (or not, she’s not your mother) it was an incident at an ALF that precipitated her extended stay at the state hospital. My fear is this fits the national trend. We run out of places for the mentally ill, so we dump them in nursing homes, or something similar – places ill suited to care for them. The end result is something like what happened to my mother already – or worse, someone gets hurt – and the cycle starts over.

I’ll be happy to have her nearby, but not at the cost of her safety.

Maybe she has improved. Maybe an ALF really is appropriate now. I understand there are ALFs with some kind of certification to treat the mentally ill. I’m a little worried though. In this case, I don’t think it’s just me.

I want to be hopeful. I haven’t seen her in months, but others say she seems a little better – in some ways. Being closer will fix one of my problems (self inflicted though it may be) – the guilt I carry for not visiting enough.

When we were four

When we were four

Originally uploaded by jkauffman

Once again my father has upstaged me in our computer arms race. It seems that every time I buy a computer he buys a better one. To be fair, our replacement cycles are similarly modest, he earns more money, and his computing needs are more robust… but come on dad! Give a nerd a break.

Well this time he didn’t get another computer – he just got the film scanner I’ve been lusting. (Not really a dedicated film scanner, but a mid-range flatbed with a transparency adapter for serviceable, if not perfect film scans.)

I’ve been longing for a film scanner for a while now, because most of the old family pics are slides. My grandfather took lots of pics with slide film with an old SLR, and so did my father… so there’s a treasure waiting to be pulled out and scanned for my library.

If I had the time saved I’d be tempted to take a week off from work, just to go over and sort through them all, digitizing like a mad geek.

This picture is an early sample my dad brought over a week ago. It’s me, my parents, and Christy at the old house in Billerica, MA – probably sometime in 1975.


Stray comment

I was having a good day. Everything was fine until I heard one stray comment. Do you have days like this? Can one or two sentences ruin it for you? I wish I could say I have the self assurance to shrug off what other people think and say, but it’s not me. Not at all. It sticks with me. It burrows and churns through my mind, infecting everything that follows.

“I don’t get it. This guy supposedly can’t work because he’s got bipolar disorder? What kind of bullshit is that?”

This was an opportunity to intervene. I could have spoken up. I could have defended this person – a stranger, circumstances unknown. I could have spoken up for all those who can’t speak up for themselves: people who know the cruel reality of severe mental illness. I could have spoken up for my mother, who can’t be left alone for more than a few moments in the hospital because she may hurt herself, who can no longer communicate rationally with the world outside the confines of her own mind, let alone live independently and earn a living.

My mother has bipolar disorder. That’s no bullshit. I’ll tell you what is though: the way we simultaneously stigmatize and dismiss mental illness. Could we be more cruel?

I shouldn’t ask that. Things can always get worse. Anyone who knows our history knows we’re capable of much worse. I guess I just wish more of us aspired to something better.

We’ve all heard how mental and physical illnesses are perceived and treated differently; from the disparities in insurance coverage to the sympathies of the public. Instead, let’s think about how similar they tend to be. They have biological causes. They have ranges of severity. Some people respond to treatment, while others don’t (many fall somewhere in between). Some treatments poison other parts of the body, causing further complications. Both can lead to the death of spirit, hope, and body.

You could watch a hundred people get thousands of colds over your lifetime, and never see one person develop life threatening pneumonia. Obviously that doesn’t mean it’s not possible. Yet someone can know one or two people with mild depression and think psychiatry is a scam?

Some of it has to do with plain old ignorance. That’s why I feel like I can’t sit still when I hear evidence of it – even when it’s just a throw away comment in passing.

And yet, that’s exactly what I did. I sat still. I let the comment go.

I wish I hadn’t. I’ve rationalized it since. It probably wouldn’t have made any difference. I would have sounded like one more fanatic from the fringe. Bringing up my personal experience would only prove my inability to be impartial.

Look ma! More bullshit.