russkay

11:28 pm: A Thanksgiving Appreciation

This is the fourth time in the past five years that the Young family has made me so welcome, indeed made me feel that I’m an ex-officio member of the family. It would be five times, except that two years ago I was in the hospital after my transplant and UMass refused to let me out, even though Steve had arranged for someone to pick me up and take me back.

For me, 2009 has been a year of challenges: physical, medical, pharmacological, and even of the spirit. I’ve had to face the reality that I cannot do everything I want to, including some things that were easy just six months ago. But I’m not going to let that wear me down. I’ve arranged for help in clearing snow this winter and doing yard work next year, thus ending my abortive relationships with lawnmower and snow-blower. I’ve asked for and gotten help from friends in moving excess furniture out of the way so that I can once again use my spare room as a bedroom instead of a storage dump.

I turned 67 last Friday and got taken out to dinner by each of two ex-girl friends, and that made me feel very special. I’ve decided that from here on out I will probably always feel cold – although there was a brief window of warmth in August – and in self-defense I’ve bought myself a fleece jacket to wear inside, zipped up all the way, and it makes a big difference in personal comfort.

So life goes on, and in fact goes on pretty well. It keeps changing, but on the whole I keep my spirits up. A woman I’ve been dating recently asked me what was my most cherished hope for the future. My response to her was that I just don’t have a lot of big-time, most-cherished hopes or plans or even dreams. I once wanted to travel a lot, but since I’ve gotten a bit older, suffered through some health crises, and become a little less comfortable moving around all the time, I’ve gotten much more content with enjoying wherever it is I am at any given moment. The one thing that I do want is to find someone with whom to share my life. This is a very big priority for me, and I’ve kept myself pretty busy looking around for that partner.

In the course of my life I’ve given up a lot of dreams, many of which were unrealistic to begin with. I never won the Nobel Prize, didn’t have enough to say to write the book I wanted to be author of, didn’t take the trip around the world, and won’t ever be a grandfather. And you know what? None of that matters very much. The fact is, I’ve led a life I can be proud of, I have a son whom I love and respect, and I was able to stand by my wife through 12 years of crisis and suffering, giving support and sticking with her until her death. And right now, both here in this room and in the larger communities I live in, I am surrounded by people who like and love and respect me. Even considering all that I’ve lost in the last several years – and I’ve lost a lot – I can truthfully say that my life has never been better than it is at this moment. But the world keeps on turning, and I continue to renew and remake myself – physically, spiritually, and emotionally. I don’t know where my next big challenge / opportunity / turning-point will come from, but I plan to be there and to grasp it fully. I’m nowhere near ready to quit or give up on life, the universe, or anything else. A friend of mine likes to say, “What if everything that happens to me is a blessing?” What if, indeed? And so I give thanks today and every day for all the blessings that have been given to me. I am a very fortunate man.

11:53 am: Wallpaper meme
1. Anyone who looks at this entry please post this meme and their current wallpaper at their LiveJournal.
2. Explain in five [or fewer] sentences why you're using that wallpaper.
3. Don't change your wallpaper before doing this! The point is to see what you had on.



This is a photo of the Great Smoky Mountains I took last November outside of Asheville, NC.



Tags: photography, wallpaper

10:05 pm: How much do I value myself? Or ...

The Price Is Right

 

By Russell Kay

 

There is a well-known tale of an encounter between George Bernard Shaw and a prominent actress. “Would you sleep with me for a million pounds?" he asked. “Oh, Yes!" she replied. “Would you do it for ten pounds?” he asked. “Do you take me for a whore?" she responded sharply. Shaw’s retort was a classic: “We’ve already established what you are, ma’am. Now we’re just haggling over the price.”

 

They say that everyone has his or her price, and I’ve just discovered mine. It’s forty bucks.

 

Now, it’s not that I’d commit murder or rob a bank or even sleep with someone undesirable for $40; in fact, it’s not at all about what I’d do for that much money. It’s about what I will do to avoid spending that amount of money.

 

The first inkling of this new insight came when I got my yearly phone call from the Vietnamese family that has been taking care of my yard (lawn is a little too nice a word to describe what surrounds my house). For the past three years I’ve been paying them $40 to mow and “clean up” the yard, and this had to be done roughly every two weeks between early May and late  September. I’ve been happy to have them do this, because I detest yard work. I’ve been unhappy to have them do this, because I detest spending money on things I don’t much care about.

 

Given the state of the economy, given the state of my retirement funds, the declining fortunes of my one remaining freelance client (and thus my income), I decided that I somehow could no longer afford this luxury. So I did some math in my head. Let’s see, $40 every two weeks over a 19-week period comes to $400. If I went and bought a lawnmower for $300 or $400 and did the mowing myself (oh, the horror!), I’d pay for the machine in one season. And at the end, if I didn’t want to ever do it again, I could sell the damn lawnmower and come out ahead of the game!

 

And besides, I told myself, I could really use the exercise.

 

So I did some looking around, decided on a machine I thought would fit the bill and probably hold together, and bought it from a place where I knew I could get good service if I needed it. The cost was around $385. So I’ll end up spending/saving my forty bucks each time I open up the back shed and take out the mower.

 

Well, sure, that makes sense, but it hardly means that my price is $40. No, I came to that realization when I opened up my latest statement from Charter Communications, which covers my cable TV, Internet service, and home phone. A year ago, when I got notice of a price increase, I had successfully negotiated a reduction in rate to a point where I was OK with the cost/benefit equation. All I had to do was take a two-year commitment.

 

At least, that’s the way I remember it. Charter, on the other hand, says it was a one-year promotion, and it’s over. And they were adamant about the new price, offering no reductions even when I threatened to take my business elsewhere. This year’s increase over what I was paying: yup, $40 a month.

 

So I’m in the midst of making other arrangements for everything. I wanted Verizon’s FIOS, but although it’s widely advertised, it’s not available in my neighborhood. It looks barely possible that I may have to stick with Charter for my Internet service (I’ve gotten two conflicting statements from different DirectTV reps about the availability of DSL), but everything else is going to someone else. For a lot less money. And if things work out the best way, I’ll end up saving forty bucks a month instead of spending an additional forty bucks.

 

After all, $40 is $40. I should know.

 

08:45 pm: Step by Step

Step by Step

A Personal Reflection by Russell Kay

This is the text of a reflection (aka sermon) I gave on April 19, 2009, at the Unitarian Universalist Church of Worcester.

Every year the Worship Arts Committee sponsors a service we call “Views from the Pews.” Usually this takes the form of short mini-reflections by several church members about their personal beliefs or views. I originally volunteered to do one of those, but along the way some things happened to me and I found myself with a good deal more to say than I had expected. So this morning I’m going to take up the entire reflection and tell you a little about my own spiritual path.

I was raised in a liberal Baptist church (liberal here means, among other things, that we had dances inside the Baptist church). As a child, I participated actively in church life, and I even went off to college on my denomination’s largest scholarship. But I never really believed in the divinity of Jesus; indeed, I was quite uncomfortable with the idea of God. I was studying to be a scientist, and I just didn’t see any relationship between what my church taught me and what I learned in the real world. After college, I more or less forgot about church.

When I was 25 years old, my wife Harriet was pregnant with our son, and she gave me an ultimatum with respect to religion: “Look, we have to raise the kid as something. I don’t especially care what, but if you don’t make a different choice, I’m going to raise him Jewish, because that’s what I know.”

So we talked about options and together we went looking for a church, a religion, something. We were so very logical about it. We made up a list of candidates; as I recall, Unitarianism was at the head of the list, followed by Society of Friends, Bahá’í, and Buddhism. We went first to a service at the Evanston Unitarian Church, in the Illinois town where we lived. Within five minutes, both Harriet and I knew we belonged there. We never made it to any of the other candidates on our shopping list.

A couple of years later we moved to Worcester for a new job. Ultimately we joined this community and raised our son in this church. (I should mention here that Alexx no longer attends any church, but when asked has been known to refer to himself, with a smile and a twinkle in his eye, as a “lapsed Unitarian.”)

But that’s enough about churches. What I really want to talk about today is spirituality and spiritual growth, not religion. For most of the past five decades I considered myself an agnostic, even a secular humanist, and I was quite comfortable with those labels. I thought the idea of a God was nice in theory, but I couldn’t actually believe it without some sort of proof or demonstration, so I remained a skeptic.

About 20 years ago, I started going to 12-step meetings. I eventually got accustomed to the mentions of “God” in the 12 steps, and I gradually arrived at some new insights. I began to find what we in these programs call “recovery,” and with it I gained a deeper sense of spirituality and what it means to live a moral, examined life.

After my wife’s death four years ago, I met someone from a religious and spiritual background unlike anything I had ever before come across. My new friend had been raised in a fundamentalist Mormon family, lived for several years as a nun in a Vedanta Hindu ashram in California, later became involved with Native American religion, and more recently has studied anthroposophy and the teachings of Rudolf Steiner. As we got to know each other, she pressed me on what UUs were and what I personally believed.

In trying to explain myself, I uncovered a dirty little secret that I had been unaware of: underneath the carefully polished descriptions and labels that I had created for myself, there was almost no real substance. There was no there there. I hadn’t thought about these issues for so long that I didn’t know any more what I did believe, or why. I no longer knew who I was. I was honestly horrified at this revelation, and I needed to change. Since then, I’ve been on a search to find out just what it is that I do believe. And that friend who started me on this journey has become an important spiritual mentor, a touchstone in my life.

At my friend’s suggestion, I started reading a series of books called Conversations with God. I had come across these once before and dismissed them out of hand. Now I approached them with a more open mind, not blindly accepting the ideas presented but willing to think about them.

Shortly after that, I had a couple of experiences unlike anything I’d ever encountered before. I could call them visions, insights, moments of spiritual enlightenment. What happened was, out of the blue, while I was in a more or less meditative state – I was actually having a dialysis treatment at around 7:00 in the morning and kind of zoning out – I was suddenly confronted with situations and people from my family and my past. They were right there in the room with me – really, these were open sores that had been festering for decades. I wanted to run, but my jugular vein was hooked up to a machine, so I chose to confront these apparitions. And by facing up to them and being honest with myself about the past, I was able to make peace with them inside my heart. I talked to my stepfather, who died 10 years ago, and found the sudden strength and urge to forgive him for many things. I got rid of a ton of resentments that day.

Most surprising of all, I discovered shortly after that time that I seemed to have hopped off the agnostic fence into a not-totally-secure but more-or-less-comfortable belief in God. To say that I was startled is serious understatement. Even though my profession is communicating through words, I cannot tell you clearly what it is I believe in. But I do know that something changed deep inside of me at that time, and ever since I’ve looked at the universe differently.

In thinking about my experiences and pondering a variety of spiritual writings, I realized that the 12-step way of life had become a central part of my core beliefs, helping me know how to live a moral life. There’s not time enough for me to discuss or explain the 12 steps this morning, but the more I learn about them and about other moral systems, the more I am struck by the similarities and parallels between all paths that include an examined life. I believe that, while the scenery along the way may be different, all these roads lead in essentially the same direction – and possibly to the same destination, though I’m less sure of that. I’m struck by the importance of searching for answers within oneself, and also by the need to seek out the right questions to ask. Tolerance and acceptance have always been important to me, but nowadays I’m more open-minded than I ever used to be. I believe that I’m finally realizing I don’t know nearly as much as I used to think I did.

Everything I’ve said so far is background to the next experience I want to share with you. In my 12-step program we would call this a spiritual awakening, and it was indeed an awakening. It came to me in the form of a dream two months ago that has helped focus my beliefs and values in ways I would not have thought possible before that February night.

I should start by telling you that I never remember my dreams. It just doesn’t happen. Five or ten seconds after I wake up, dreams are gone forever. But this night was quite different; I woke up recalling every detail of the dream. I lay in bed for half an hour, bathed in warmth and serenity, thinking about what I had just experienced and afraid that I might lose it all if I went back to sleep. So at 4:00 a.m. I got up out of bed and started writing about it. Here’s some of what I wrote down that morning:

I was 21 again, just out of college. A graduate student in a strange city, I was getting settled into a dorm room and feeling many of the things that characterized much of my young life: I was scared, alone, isolated, weird, different, unloved … I was full of being-apart, by-myself feelings.

Then, in the space of a day or two, I came to realize that life didn’t have to be that way, that I didn’t have to be that way. My dorm-mates, both men and women, came up to me, hugged me, talked to me, talked to each other about me, and in almost every way possible (no, no sex) made me feel loved, accepted, liked, wanted. They made me know that I was surrounded by and supported by people who really cared about me and my welfare. I suddenly realized that I could choose to be alone, to isolate myself, to live apart from everyone else, and if I did that the others would accept and respect my choice. But I also knew that would be a decidedly unhealthy decision.

People made me hear, feel, and know that I was OK just the way I am. I was made welcome and brought into the group, both by individuals acting on their own and also by group action, pulling me out of my shell and asking me to join them, to participate, to be a part of something bigger than myself. One person told the others that I needed help in joining the group, and I was asked to talk about myself, to open myself up to the group, to share in the overall sense of belonging and of being valued. I did that, and then others joined in, each reaffirming in a different way that I was OK, that the place I was in was where I belonged, and that things were going to work out. People held my hands, embraced me, supported me.

I knew, for maybe the first time in my life, that I am not alone.

I do not need to be alone.

Not ever.

And this is when I woke up, back in the real world. But the feeling of peace, of belonging, of being supported and held in the hand of something bigger than myself, was still there, strong and utterly palpable. I’ve thought a lot about that dream since, and I’ve shared it with a number of people. What did it really mean? Why did I have it?

The start of the dream wasn’t really like the way I lived and felt when I was that age. But the loneliness, the fear, the isolation – all those feelings of not fitting in, not being good enough – I was very familiar with them. I started out in a state of extreme desperation, pretty much without hope. And then people, individually and collectively, reached out, drew me in, made me know that I was not alone. I had found peace with the world … and peace within myself.

As I tell you about this, I cannot begin to express the feelings that made that dream so real, so moving, so powerful. Whatever I say here today is only the palest reflection of what I experienced. But I need to try and understand it, and I’ve learned I cannot do this by keeping it to myself. I don’t need to puzzle it out or to analyze it to death, but I do need to fully realize the experience within myself. And that’s an important reason I’m standing up here this morning.

I am 66 years old, and I’ve got real problems. I’m closer to and more aware of my own mortality than ever. I don’t know – I can’t know – what’s going to happen to or with me, and I’m plenty concerned about the future. My new kidney is in a certain amount of trouble, and the doctors don’t know for sure how bad it really might be, or even what to do about it. I live alone, with no partner in prospect, and I don’t much like that. I’m very conscious of what I’ve already lost and afraid of losing what’s left. I lost Harriet and the life we had together for 41 years. I lost a lover and the life I hoped we might build together. I’ve lost most of the small amount of financial security I thought I had when I retired. I want someone to come and take care of me, and life doesn’t work that way. The world economy is in the tank, the country is in trouble, and I’m in a funk. I put up a brave front … but behind it, I’m scared.

And in the middle of this pain and angst I am given this remarkable gift of a dream that tells me I’m OK, that I just need to relax and let things be. I’m asked to trust that things will work out. I know that I have to do my own footwork, my part of the job, and all too often I don’t know what that is. But if I just keep on trying, doing my best, then I believe things will work out the way they’re supposed to. Whatever that is. Whatever that means.

This is the most extraordinary sense of well-being I’ve ever had, a gift from … from whom? A higher power, God, the universe? For the first time in my life I truly understand that I am not alone. Yes, I am a tiny creature in a very large ocean, but I am also more than that. What was and is so moving is that I FEEL this – I don’t think it, don’t believe it, don’t know it in my head, don’t hope it. No, I FEEL it, deep inside me.

I have been so relentlessly hard on myself for all my life that I’ve never let myself be accepted for the imperfect human being I am. I know that I don’t have the answers to life, the universe, and everything, but that really doesn’t matter. In the immortal words of Popeye, “I yam who I yam!” That’s good enough for my higher power. That’s good enough for my friends. And it damn well ought to be good enough for me.

That dream touched a chord deep within me, and I’m trying to deal with it in the only way I know how – by writing and talking about it, sharing the experience with others, examining it from different angles. Trying to find the answers. Still looking for the right questions.

Over the past half-dozen years, my life has had a lot of ups and downs. Nietzsche once said “What doesn’t kill us makes us stronger.” In my 12-step program, we sometimes say that “pain is inevitable, but suffering is a choice.” Like everyone, I have to acknowledge and deal with the not-so-nice things that happen to me. But I’ve learned to work very hard and very consciously every day, every single day, to maintain a positive attitude and to be grateful for the good things in my life – and most especially to appreciate all the wonderful people who surround and enrich me.

I recall the darkness I felt in those first months after Harriet died. I had lost more than a wife and best friend; I had lost all my hopes, dreams, expectations, plans, goals, ambitions, desires, everything. I didn’t look up any more, because there was no horizon for me to see. There was nothing left inside of me; I was an empty shell. But even at that low point I knew that I had to just go on putting one foot in front of the other, step by step, and that eventually the darkness would begin to lighten up. In time I would want to move forward and rejoin the world. And that’s just what happened.

Now, I know that I still need to keep moving forward, step by plodding step. I need to acknowledge my fears – oh yes! – but not be overcome by them. I need to remember that I am held in a web of loving support by two important and distinct communities I belong to, and one of them is this church – these are communities where I am welcomed, valued, accepted, and loved. Where I can turn for help when I am feeling overwhelmed by the world and my individual problems. I have no choice but to experience pain and difficulty at many levels, but I know that it’s not the end of the world – it’s not even the end of the world as I know it. For me, right now, it all comes down to this rather simple, even simplistic statement: I’m really OK; and you guys, you’re OK too. That doesn’t sound very profound, but it’s very, very real. And as dark as things may look in the world, somehow we’re going to make it through, together, step by step by step.

Blessed Be. Namaste.



Those who may be interested can listen to the audio delivery of this at www.uucworcester.org/downloads/Reflec20090419.mp3

Tags: al-anon, church, spirituality, uu

07:30 am: Tearing Down a Literary Icon: Never Mind

On the 50th anniversary of its publication, a very negative view of William Strunk and E.B. White's book, The Elements of Style, appears at http://chronicle.com/free/v55/i32/32b01501.htm. I just finished reading this hatchet job by grammarian Geoffrey K. Pullum, and I am feeling quite saddened. I do not really disagree with any of the author's specific criticisms, and yet I feel that he is, overall, completely offbase and has no idea of how valuable the book has been to so many. When I was learning how to write, I got significant help from Strunk and White. I recall feeling that the book really simplified and conveyed a lot of the important points about good writing.  This new "review" is mean-spirited and misguided.

 

If the author's point is that Strunk and White is taken too much as gospel, I'll agree with that. But that's not the fault of Strunk and White; blame it on generations of successive pedants who don't know the real function of such books and their rules, and whose own writing may well be suspect. Honestly, I've never read a style book or grammar text that I agreed with completely. There are always exceptions to every rule, and many simple ideas or statements are so essentially complex in and of themselves, regardless of how they are expressed, that no sensible rule could possibly contain or constrain them.

 

Yet that doesn't mean that a book of rules is without value. I believe firmly that good rules, such as are most of those in Strunk and White, are very helpful for someone who doesn't really know how to write and is just learning how to express himself or herself. Once one begins to know how to do that and gains some fluency or proficiency, however, then rules should be adhered to only when they make sense and abandoned when they get in the way of clear expression. But the typical freshman writing student needs those rules; needs them desperately, I suspect. Writing rules are like training wheels on a bicycle: useful for a while, then they have served their purpose and should be retired.

 

For what I produce, both professionally and personally, others have called me a good writer. Elements of Style did not teach me how to write, but it clearly did help me become a better writer at a time in my development when I needed help. I've since had the benefit of writing a lot and of being read and ruthlessly criticized by some absolutely top-notch teachers and editors. I've used numerous style guides and stylebooks, as requested by various publishers. As reference works they are helpful on rare occasion; but not one of them, or any other book -- including Strunk and White -- will teach you or me or anyone else to be a good writer. To whatever extent my writing is good, it's because I started with a talent for it and I've worked to develop it by writing a lot, getting it critiqued, and rewriting. Strunk and White was a big help back near the beginning of my career. I read it, used it, outgrew it. And that's as it should be.

 

My former Byte Magazine colleague Jerry Pournelle, a prolific author in many fields, has written an interesting essay on becoming a writer (http://www.pournelle.com/slowchange/myjob.html). For anyone who wants to develop as a writer, reading that along with Strunk and White is a lot more to the point than Professor Pullum's tiresome harangue.

 

Copyright 2009 by Russell Kay

 

 

Tags: writing

04:58 pm: Birthday, Blackout & Thanksgiving
There I was last Tuesday night, at an Al-Anon meeting, sitting at a table and listening. I felt the world start to fade out around the edges, and the next thing I knew the table had been pushed back, people were standing around me, holding my hand and my head, and everything was kind of weird. They say I blacked out for about 30 seconds. That got me an ambulance ride to and two nights stay in the hospital, where they decided that I had gotten dehydrated (it was a dialysis day) and my blood pressure had gone low. They have now adjusted my dialysis parameters and taken me off my blood pressure meds until the doctor sees me again (that's tomorrow) and we recalibrate for the BP meds. It was a scary time. During the ambulance ride, they measured my BP at 70 (which my ex-EMT minister says is fine if you're a cat, and my surgeon friend says is fine if you're a 90-pound old lady, but since I'm neither of those things I blacked out). Three folks from the meeting came to the ER to stay with me -- thanks Jim, Cindy, and Ellen -- and were joined by my minister, Aaron and another friend, Rob, from church. The incident happened about 8:00 pm, and they didn't put me into a hospital room until about 2:00 am. My stay was uneventful, except for a crabby roommate. I got home from the hospital at 2 pm Thanksgiving day, and got picked up an hour later and whisked off to dinner with friends (Steve and Martie) and their family in Princeton. I'd spent the previous Thanksgiving with them, and going back was a very nice way to spend the afternoon and evening. Even better, they've invited me for next year if I wish.

One of the others at dinner, one of the host's daughters, lives on a farm in Western Mass (?) , where she had earlier in the week baked 400 pies in two days! I can hardly imagine how one manages that kind of process.

The whole blackout thing happened the day after my birthday. Now I'm 64 and can probably qualify as a certified geezer. Or maybe a galoot. The day before I'd played hookey from church and gone to the NCCA knife show in Marlboro. I didn't see any knives that particularly caught my fancy, but I did splurge and buy myself a gorgeous sterling bracelet with five large turquoise nuggets in it. It cost more than I ever thought of spending on a piece of jewelry, but I got part of it taken out in a trade for a knife I can part with. Yeah, I'm worth it.

11:19 pm: Big Decisions, Lots of Stuff!

Down Another Rabbit Hole

It’s odd how simple and uncomplicated it can be to do something that changes your life. I realized today that I have in fact just made a major life decision in the last couple of days. I am going to actually retire and collect social security. I won’t turn away freelance work (not all of it, at any rate), but I won’t seek it out or worry about having enough either. Instead I’m going to try and catch up with the rest of my life – there’s just not enough time for work any more; having fun and keeping busy and healthy is much too important.

A friend asked me recently if I had plans for my upcoming birthday, and I didn't. Well, I guess this is now my big birthday present to myself this year: I give myself permission to retire and enjoy life. But I also can't help wondering how coincidental is it that I come to this decision on Harriet's birthday?! Today she would have turned 65 and for the next six days I would be razzing her about being two years older than me.

 

Kidney Complications

Since I last wrote here, I have finished jumping through all the UMass bureaucratic and medical hoops needed to get approved for a kidney transplant, and I am now officially on the list. Then, shortly thereafter I learned that my kidney donor will be unable to donate a kidney for health reasons of her own. This is not the tragedy I once feared it might be. I'm OK with the situation, and it's entirely possible that she's more upset about not donating than I am. But I figure, it wasn't meant to be, so something else will happen, don't know what, don't know when. I've done my part, and I just have to let the rest of it go. Statistically, this may be a two- to five-year wait, but it's out of my hands. Dialysis continues OK, and I'm living well and enjoying life more than ever.

 

Introspection

I've been doing a lot of this lately, including reexamining some fundamental beliefs and assumptions I thought were settled years ago. Partly this is in response to a lively ongoing conversation with a new friend as we get to know each other, and partly it's the realization that I always have the option to change my mind, make a new or different decision, or just do what I feel like. Life doesn't stand still. No indeed.

 

Music

I've been doing a lot of singing lately. There have been a lot of extra rehearsals for a 3-church combined Thanksgiving service; it turns out I can't make it to the actual service to sing, but I went to all the rehearsals for the sheer joy of it.

Saturday evening, 11/18 at 7:00, there’s a concert at my church by Joe Jencks, a folk singer from Seattle. It’s a benefit for a church friend who has had the most remarkably bad year – laid off after 20 years, followed by prostate cancer diagnosis, followed two days later by two broken femurs! No insurance, no income. So this benefit concert includes backup by a local choral group (Mastersingers to Go) and I’ve been invited to join them for this event. That was this afternoon’s rehearsal, the first time I’ve ever sung with these folks, who are way above my level. It was not as scary as I feared it might be, meaning my voice (and occasionally my sense of pitch) is getting better than I ever thought it might. It’s a neat feeling.

 

The Role of Al-Anon in My Life

In a recent email conversation, I answered some questions about the role of Al-Anon in my life. In looking over what I wrote, I decided I’d like to save those thoughts and share them here:

>>Sounds like a great deal of your life still revolves around the al-anon meetings? Is that a life-long commitment/necessity then? Or has it become more of a friends/support group kind of thing? I would have a hard time planning my life around so many meetings forever and ever. 

Al-Anon is a strange sort of group to belong to. We talk among ourselves about the impossibility of ever graduating so that we no longer have to go to meetings. Coming back to meetings on a regular basis helps remind us of what we were like prior to recovery and reinforces the disciplines that help keep us sane and functioning. Al-Anon is actually quite different from Alcoholics Anonymous in many respects, as the primary focus is on living in relationships – to an addict, to the world, to the child within me who never got a chance to grow up properly. The first of the twelve steps reads: “We admitted we were powerless over alcohol – that our lives had become unmanageable.” And most of us feel free to substitute any number of things in place of (or in addition to) alcohol – “powerless over people, places and things” is a very common expression.

Al-Anon is never a life-long commitment; the best I try for is one day at a time, and when that doesn’t work I go to smaller intervals and take them as best I can. Having said that, many of us in Al-Anon notice that if we start going to fewer meetings, or less frequently, we generally don’t function as well. Things bother us that wouldn’t normally, we have trouble handling situations, we lapse back into thinking we have complete control over everything and everybody. And each of us who has been in program for some time has known people who made remarkable recovery in meetings, then stopped going, and the recovery and the serenity just doesn’t seem to last for them. But by the same token, I don’t plan my life around these meetings forever and ever; for now I do what seems to work for me now, which is to go to three meetings a week. I have friends who do a meeting every day, and I couldn’t take that. But long term, I don’t worry about meetings. I’ll handle them (and go to them, or not) when the time comes. If I miss a meeting, it's no big deal. If I miss a bunch of meetings, I’m more likely to feel that I don’t need or want to go to meetings anymore. It’s not exactly a Catch-22 but it is a little paradoxical. When I’m feeling stressed, for whatever reason, going to a meeting can be a very good thing.

At the same time, Al-Anon offers me a remarkable environment in which I can talk about what’s going on in my life. No pretense, no judgment, no backtalk, and I know that (most of, anyway) the others in the group really understand at some basic level what I'm saying and feeling, the insanity with which I grew up or lived. Al-Anon is a safe place, with people who have lived many of the same things I have. I can say things at a meeting that I simply cannot talk about with “earth people.” At a meeting I can unburden, vent, rant and be listened to. And I can choose to sit and listen and not say anything.  Al-Anon meetings can be extraordinarily powerful, and they can also be ho-hum trivial; it just depends on who has what to say.

It’s fair to say that most of my best friends now and my major support group, the people I spend the most time with (completely outside of meetings), are people from Al-Anon. I have other good friends, and I’m slowly learning how to talk with them too, but it’s harder and riskier.

 

>>But before [my teacher] died, she really tried to wean some of us in a sense, throw us out of the nest to find the truth within and not be so dependent on the outer. She was definitely not big on dependency. But I always remember what the founder of  modern Vedanta philosphy, Sri Ramakrishna, said in that vein - that when you get a thorn in your foot, you may have to use a second thorn to take out the first -- then you can throw them both away.

Am I dependent on Al-Anon, in the sense that you describe? In some sense, perhaps I am. I know a lot of people who don’t need Al-Anon or anything like it in their lives. For whatever reason or combination of circumstances, they’ve got their stuff together and are living a life I can envy. They don’t “have a program,” as we say, but neither do they need it. As for me, I know I’m not there. Not yet. Maybe, even probably, not ever. And that’s OK. I’m in a good place right now, having experienced some degree of recovery from the insanity I grew up with. For tomorrow night, I plan to go to a meeting, but that’s not an absolute or a requirement. It’s something I choose to make a part of my life because, when I do, my life runs better.  But at the same time, I acknowledge that I cannot see where my journey will take me, and Al-Anon may not be part of that future path. I don’t know; I don’t need to know.

In some sense, what this all comes down to, for me, is that I’m learning how to be with people – REALLY BE with people. Be able to talk to them about my feelings, joys, sorrows, and to share in theirs. I grew up with an enormous shell around me, one that successfully held almost the entire world at bay, kept everything and everyone (with just a couple of exceptions) from getting close to me. Part of that shell was emotional, and part of it was physical. I’ve been successful in tearing down the physical, fat barrier, and am working on opening up my mind and my heart to others. Al-Anon has been *the* major force in making these changes, so far.

Tags: al-anon, kidney, retirement, singing

07:36 pm: The Adventure Continues …

Wednesday, September 27, 2006

 

I see that it’s been two months since I last addressed this journal. A lot of stuff has happened in that time.

 

First, kidney news.

I definitely have a kidney donor, and the cross-matching has been done and we’re quite compatible. The donor is an acquaintance of my son Alexx, and Live Journal (this blog medium I belong to) was the channel for connecting us. It happened like this. Alexx had volunteered to donate a kidney to me, but his blood type (that’s the first thing they check out) turned out to be incompatible with mine. He mentioned this in an entry in his blog, alexx-kay.livejournal.com, and a few days later the donor popped up. She had been prepared, earlier in the year, to donate a kidney to someone else but that turned out not to be necessary. Then my situation came along and she decided that she still wanted to make the donation.

 

After a lot of delays and about three zillion tests for each of us, we are now 98% of the way through the approval process. I still have to get a “release” from a cardiologist, but I’m hoping to get that squared away this week. Then the UMass Transplant Team can present my case to the review committee that has to approve these things and, assuming they approve, they can then schedule a date. I’m hoping that this can all happen within the next 6-8 weeks, the sooner the better, but I don’t have any control over that.

 

Apart from the kidney stuff, I seem to be in remarkably good health. Only real problem is that at least once or twice a week I’m never able to fall asleep and end up stumbling through the following day. Doesn’t appear to correlate with dialysis days.

 

Dating and Self-Awareness

I’ve now been using eHarmony for about three months, and I have to say that I’m satisfied with the service. That may be because I didn’t have real high expectations going in, but the fact is, I’ve met a number of interesting women and had some fascinating insights into myself as well as the whole process of getting to know other people.

 

I’ve been out on several dates, started and ended a couple of relationships, and found some people I can really talk to. I should probably clarify that; I have lots of friends I can talk with about anything, personal to me or them or whatever, but I’ve been pleasantly surprised at how easily I’m able to chat (via email, mostly) with people I’ve just met, talk about real life without a lot of pretense. I’ve decided that part of it comes from realizing that time marches on and I don’t want to waste any more of it than I can help. And part of it comes from general personal development and a lot more awareness of what I’m really thinking and feeling, the upshot being that I don’t try to fool myself so much any more, either. Harriet would have loved this in me. One of her major complaints was that I didn’t talk to her enough. Ironically, I think that her death and the need to live alone were major ingredients in this transformation. It was a kind of awful Catch-22: As long as she was alive, I was unable to talk to her as much as either of us wanted. Then she died and I could suddenly talk … but not to her. Well, sometimes I do still talk to her. She just doesn’t talk back to me.

 

So I’m keeping busy meeting new people via eHarmony, and a few of them have sparked some remarkable conversations. I’m still unreasonably impatient about wanting to find someone to share life with, but I think I’m reconciled to the fact that I can do only so much myself and then I just have to trust that the right person will come along at the right time. It may be someone I already know, or someone I have yet to meet, but I’m not going to know until I know. In the meantime, I do the footwork and don’t isolate myself.

 

Tags: dating, kidney

03:28 pm: Back into the world, weirder than ever
Sunday, July 23, 2006

It’s been a while since I’ve revisited these pages; lots of stuff to catch up on.

First, kidney news. I may have a kidney in the pipeline. The UMass Transplant Center got called by the New England Organ Bank last week saying they seem to have a match for me, but needed fresh blood to verify. I think this may be Alexx’s friend Chaiya, but I’m not sure. I should know by the middle of the week or so.

After three months of dialysis, my weight has stabilized after losing 50 pounds of excess fluid (that’s like six GALLONS of water!) I’m now at a weight I haven’t seen since high school or my first year at college – 170-175 pounds. Compared to three years ago, my shirt size dropped from 4XL to M, my jeans from 56 to 34 or 36. I don’t have any idea who the guy on the other side of the full-length mirror is, though his face looks a lot like mine.

Old Songs was nice this year; a little lower key than most years, but still very nice. I brought along my Martin guitar and sold it at the Instrument Exchange there.

Tom Wolfe was right; you can’t go home again.

After leaving Old Songs, I drove to Niagara Falls for a visit “home.” Saw my mom and my two sisters and their families. Saw what’s left of the town, which is to say, almost nothing except an Indian casino.

I had lunch with my mom and Judy, a woman who helps take care of her. Mom seems very healthy, very happy, and almost completely oblivious to the world. Judy asked her if she could remember her son’s name. “Judy, Joe, Sweetie Pie, …,” and finally, somewhere down the line, Russell. Then Judy said, “That’s Russell, that’s your son Russell, sitting right there.” And mom got this sly little grin on her face and told me, “I have a son named Russell at home, too.” Dementia can seem very strange indeed.

I had dialysis three times in Buffalo that week. Everything worked well, the social worker at Fallon made all the arrangements, and it went off like clockwork.

My two sisters, Kay and Kerrie, live one short block from each other, but they haven’t spoken to one another in months. I got to hear, from each, their side of the story, and it’s kind of sad. Kay had been taking care of Mom ever since my Dad died in 1999. Between the dementia and not always having control of her bodily functions, that was an extraordinarily difficult task. Kay likes to micromanage everything, and she was doing this in addition to working essentially full time. After a few years of this, she evidently snapped one day and couldn’t take it any longer. (I can certainly understand that.) That led to a very angry blowup involving her husband and Kerrie (my other sister) as well as Judy, Mom’s aide. The result of all this was that Mom went to live with Kerrie, who puts her in a home on weekends so she can retain some semblance of a normal life. Kerrie says that Mom is happy and hasn’t had to go to the hospital for over a year, which is a welcome change. But the sisters can’t face each other now.

I told each of them that I loved them both and planned to go on talking to both, but that I would not step into the middle. At the same time, I thanked them both for taking on the burden of caring for Mom and acknowledged (not apologized for) that I had basically cut out of that whole process.

As their situations seemed to me, based on my observations, this is an unfortunate case where no one won and everyone lost something … except possibly for Mom, who seems to be thriving in most respects except mentally. Each family was trying hard to do what was right, according to their view, and the explosion that occurred when Mom became too much for Kay just blew everyone apart. No one is very happy about the situation, but there’s still a lot of anger and resentment that has to settle out before they’re likely to become friends again. I blame no one for what happened. Given the very different temperaments of both women, it may have been inevitable.

Kay’s husband John, who retired from the Power Company a couple of years ago, is a terrific electric guitar player. He gets together with a friend, Lou, who plays acoustic electric, and they cover a lot of ground, sounding very good together. I sat in with them one evening, getting a private concert and also singing with them; it was a lot of fun. I wish I could do that more often, even bring along my dulcimer.

Back to the Future

Perhaps the biggest thing to happen recently has been my reentry into society. Which is to say, I have begun dating. The last time I did this I was a teenager looking for someone to grow up with, and the world was a very different place indeed. After comparing notes with my many single friends, we all come up with the same questions for today: What are the rules? (Worse, ARE there any rules?) Gosh, this is so different than anything I’ve done before.

Based on friends’ experiences, I’ve signed up with an online service and am discovering just how much time I can spend in front of my computer. It’s too early to say anything except that the process is interesting and I’m feeling better about myself than I have in a long time. I have a dinner date tonight with someone I met on eHarmony.

I have a good friend whose mother died last month in Pennsylvania. She and I have been doing a lot of talking – grief work, basically – and have become quite good friends. For a while I wanted to take the relationship further than that, but she’s in a difficult personal situation and really doesn’t want anything like a serious or committed relationship. So we have different agendas, and I have to accept that.

Did I mention that life is good? Well, it most definitely is.

Tags: dating, family, kidney, niagara falls

04:51 pm: A Brave New World ...

A lot of stuff – good stuff – has been happening lately, and I’d better catch up on this journal while I still can.

First, dialysis continues three times a week. No problems. One thing I didn’t expect has turned out to be rather startling. Since I began dialysis about six or seven weeks ago, I have lost right around 40 pounds. Some of that may reflect a small actual weight loss, but most of it is the result of the dialysis treatments taking excess fluid out of my system. I now realize that I have been losing weight steadily for the past six months but didn’t realize it because for every pound of tissue I got rid of, I retained another pint of fluid somewhere in my body. When I stop to think about the implications of that, I calculate that 40 pounds is 20 quarts is also 5 gallons. I’m trying to imagine 5 gallon jugs filled with water hanging off me, and it is boggling.

Speaking of which, I was at 179 this morning, just 1.5 pounds from the milestone that will mark losing 50% of my starting body weight – in other words, I’m barely half the man I used to be 8;) Another way of measuring my progress (or do you suppose I should call it regress?) is to say that I now weigh less than I did when I married Harriet in 1964 after my fourth year in college.

When I look at myself in the mirror, I’m almost completely adjusted to seeing my face the way it looks now, but the rest of me is something else indeed – I have so much excess and sagging skin in so many places (arms, thighs, neck, chest, sides, butt) that I could probably use $30K to $50K in plastic surgery to tighten things up. Of course, that’s all considered cosmetic and therefore the health insurance won’t cover it, so it ain’t going to happen.  

With the additional weight loss, I’ve had to go clothes shopping again. In 2002 when I weighed 355 pounds, I wore size 56 jeans and a 4XL shirt. Today I bought a pair of size 36, slim-fit jeans and several shirts in size Medium. I never would have thunk it!

Pay No Attention to the Man Behind the Curtain …

I’ve had some very strange experiences as a result of telling people how well I am doing with dialysis. The short version is that, since I started dialysis, my life just keeps getting better and better. I feel as if someone reached inside me and flipped a switch from off to ON! It’s like I’ve awakened from a long sleep. I’m more interested in more things, making a real effort to get out and be with people and do things.

On all fronts – physical, emotional, spiritual – I am feeling better than I have in years, and I also feel very grateful for this new life I am now living. I spoke on this at church a couple of weeks ago, and a few days later got an e-mail note from a casual friend, someone I’ve known and respected since I moved to New England 35 years ago. He thanked me for being able to face my demons and find something good in a year filled with many bad things. He thanked me for demonstrating Grace to someone who wasn’t really sure it existed. That really threw me for a loop. Yes, I’m seeing good things in the midst of crisis, but I really just feel as if I’m along for the ride on this adventure.

Then, talking with another friend from church, someone I know better but for a shorter time, he started telling me how I was an inspiration, a role model, so very wise, yada yada yada. Sheesh! I’m just a normal guy who’s had the good fortune to be taught a lot by many others.

The One-Two Kidney Punch

Test results from my son, alexx_kay, came in, and his blood type is incompatible with mine, so he cannot donate a kidney directly. He posted something about that in his LJ and it’s beginning to look as if I have another potential donor. Wow!

Listening to Women

A week ago, while I was waiting for choir practice to begin after church, a woman I barely know walked by, said Hi, and went out the back door of the sanctuary. I then remembered that I wanted to thank her for a favor she did for another friend, so I went after her. I found her lying on the couch in the church lounge in obvious pain – though it was not at first obvious whether the pain was physical, emotional, or both. I sat down and talked with her – well, mostly I listened while she talked – for an hour and a half. Her crisis turns out to be medical, with severe chest pains, and family, problems raising four adopted Bolivian teenagers while in the midst of a divorce.

I never made it to choir practice that morning. But I think I did some good.

Another aspect of having that internal switch flipped on is that I am becoming interested in women again. (My best friends have most always been strong, intellectual women, but friendship is not what I’m talking about.) I’ve begun spending a lot of time with one woman in particular, talking and even more listening to her talk. She is in a precarious environment, needs to find subsidized housing relatively soon, and she’s just out of a 10-year relationship that went pretty sour. On top of that, her mother is dying and she’s away in another state to be with her. We’re not sure where this relationship may be headed, but neither one of us is in a hurry.

I am also reminded that my relationship with Harriet began in Chicago back in 1962, when she was in a lot of emotional trouble and I spent hours on the phone listening to her. Of course, back then I was a 19-year-old twit and the world was very different indeed. It now seems very strange to be single, and trying to figure out where (if anywhere?) to go from here.

Tags: alexx, kidneys, listening

02:42 pm: Dialysis Demons

Saturday, April 22, 2006

 

Lots of stuff happening in the past three weeks. Complete change of life, another existential crisis, but a lot more peace too.

 

Right after I saw the lung doc, I had a lousy weekend. I was very very sick and really got to not caring whether I lived or died. On Monday I realized that I was sick and decided to call my doctor: DOH! In short order, he had me come to the hospital for an exam and some blood work, I had surgery the very next morning to put a set of catheters in my chest (hooked up to the carotid area), and on Wednesday I had my first dialysis session.

 

Dialysis. I don’t want any part of this in my life; I didn’t sign up for this; I’ll be damned if I get myself plumbed up to a machine for hours at a time three times a week. No way Jose. Not this guy. Just too scary and unacceptable an idea to take in. That’s something for other people to deal with, not me.

 

When push came to shove, however, I just went.

 

Being sick enough not to care, I actually found that the dialysis experience was remarkable in many ways. First, there was an overwhelming sense of déjà vu when I entered the dialysis clinic, even though I know for a fact that I had never been there before. But for all intents and purposes, it’s a clone of the chemotherapy treatment area that I took Harriet to for years (which is just down the hall, BTW). Same chairs, same caring nurses, same general drills. Only differences were the specific machines and the drugs, and this time it was me in the chair, not Harriet.

 

First dialysis on Wednesday. The next day, Thursday, was the best day I’d had in months. I felt great. More dialysis on Friday and then off for a weekend on the Cape with some friends. Jeez, life just might be worth living after all.

 

As I write this, I’ve now had diaysis three times a week for three weeks, and it runs three to three and a half hours at a crack Monday, Wednesday and Friday. This ends up chopping a lot of time out of the week, but people are telling me I look so much better, and how it’s nice to have me back again (bad puns and all!), and that I sparkle! (blush)

 

I’ve also had the fistula (and accompanying 10 stitches) put into my left arm, which at the moment is almost completely purple and looks like a Humvee ran over it. I’ve started wearing my wrist watch on my right arm, which feels awkward and inconvenient.

 

One odd facet of my present condition is that I have to change my eating behavior again. This time around I have to cut way down on the amount of fluids I drink, and avoid taking in too much potassium and phosphorus. I find I’m producing much less urine than ever before, which seems strange. I figured that when the kidneys shut down they just stopped filtering out the bad stuff, but apparently they pretty well stop doing anything, including feeding the bladder.

 

So I’m living in another universe again, with different rules and everything seems just a bit different. I’m not sleeping all that well, whether I use the CPAP machine or not (but now I can sleep without it, at least for several days at a time).

 

Alexx has been tested, but we haven’t yet heard whether he’s a match for me or not. Updates to come.

 

Had a bunch of friends over to watch a movie some weeks back, and we had a great time with the big TV and great sound system. The film that evening was Kundun, Martin Scorcese’s 1997 tribute to the Dalai Lama, and a gorgeous piece of work no matter how you look at it. This was such a nice experience that I’ve decided to institutionalize it. Beginning on May 12, I’m starting up a new activity, hosting a fortnightly film showing on Friday evenings for friends, with a lineup of scheduled movies, starting off with two campy caper flicks, The Italian Job (1969) and National Treasure (2005). That will be followed in two weeks by two musically mythological films, O Brother Where Art Thou (2000) and A Hard Day’s Night (1964, now in a newly remastered DVD 2-disc edition that I’m eager to see).

 

Tomorrow morning I’m going to skip church and drive to Natick for NEFFA (New England Folk Festival Association). I’m going mainly for a few talks, less than usual for the music, but I expect to have a great time. Didn’t get to much in the way of festivals last year, with Harriet’s dying, and so NEFFA and (especially!) Old Songs loom as important events for me to do this year.

 

I also want to take a short trip to Niagara Falls to visit my sisters and mother, and to see the old places again. I’m thinking that if I arrange to get dialysis there, I can probably travel directly from Old Songs on Sunday 6/25 or Monday 6/26, which would cut 2.5 hours from the drive out.

 

Life is getting better again. And busier, too.

 

 

 

 

 

Tags: films, kidney

04:36 pm: Needled
Monday I got ultrasounded in my carotid arteries and also the veins in my left arm. The technician marked the path of my vein with a humongous black permanent magic marker, so I have these two strange lines on my arm. Next week I see the vascular surgeon about the fistula for dialysis, and also see my PCP. I think I need to arrange with him for the stress test.

Thursday I saw a lung specialist, as a follow-up on an unresolved chest xray. Dr. Spierer says I have fluid in both my lungs, and rather to my horror he proceeded to stick a long needle into one lung and drew off some clear fluid. He says it looks like it’s probably related to the kidney failure; we’ll know on Tuesday. Luckily it didn’t hurt (though there were some strange sensations), but I was thoroughly spooked beforehand at the whole idea. It would have been a little easier if someone had been with me, but I didn’t expect anything quite like that to happen.

Overall, this has been a better week than last; at least as far as I’m feeling better and not having to spend quite so much time resting.

I talked with the kidney transplant coordinator at UMass about getting blood draw tubes for my monthly tests, and also mentioned to her that Alexx was trying to get in touch with her.

02:03 pm:

Saturday,  March 18, 2006

 

Life is a four-letter word.

 

Having seen several more doctors and been scheduled for many more tests (tests I can’t study for, either), I now contemplate life with a four-letter disease. You’ve seen those TV programs where they refer to CHF (chronic heart failure), COPD (chronic obstructive pulmonary disease), and GSR (gun shot residue)? Well I’m now officially identified as ESRD, short for end stage renal disease.

 

I met with a vascular surgeon, who will prepare my left arm for future hemodialysis by joining together a vein and an artery (in what’s called a fistula). But first I need to get ultrasound maps of my arm and neck veins and arteries. And I need to get a stress test and a colonoscopy, too. Gee, all kinds of fun.

 

Anyway, I’m also told that assuming we go ahead with a transplant (and I’m really assuming – hoping – that’s the case), I’ll also have to be on heavy anti-rejection drugs for the rest of my life (at something like $1000/month, but paid for by Medicare).

 

I have finally read through the large packet of information on the hospital and the procedure, and I am encouraged by the fact that UMass has been doing kidney transplants for 20 years, and that about half of theirs are done with donated kidneys.

 

I asked my nephrologist about the timetable for needing dialysis, and it’s almost certainly within the coming year. I’m noticing that I’m having much less energy and strength than usual, and I’m wondering if that’s because of the kidneys. If it is, then maybe dialysis won’t be such a terror and will instead help me feel better.

 

I’ve also had trouble focusing, trying to work. I sit down at the computer and my mind just doesn’t want to function. I find I can spend a remarkable amount of time just lying in bed listening to the radio if I let myself do so. When Harriet was sick, I never quite understood how she could spend so much time in bed, or what the attraction was for her. Now, I think I really know. It’s scary, but also kind of comforting.

 

Thing is, I can’t control any of that for now, so I just have to wait things out and let them take their course. I presume Alexx is starting to get his tissue-matching done (hint!), and I’m certainly keeping all of my appointments.

 

There’s a dance tonight that I may stop in on, probably just to listen to the music for a bit. And I still have to finish writing my ultra wideband tutorial for Computerworld.

 

 

Tags: kidney

02:16 pm: The kidney and the kid
Monday, March 13, 2006

Well, my life is in crisis once again, so I guess it’s time to resume my blogging so that I can (a) let others know what’s happening to me, and (b) figure out what I do next.

As an eight-year-old, I woke up one morning with my eyes swollen nearly shut. Since I had just gotten my first pair of glasses the day before, everyone figured it was some sort of weird reaction to the frames. In fact, it was coincidental and my real problem was a kidney infection, acute glomerulonephritis. I landed in the hospital for three weeks and was out of school for three months. Two elements of that illness have stayed with me.

First, while I was in the hospital, I spent the first week or more throwing up everything I put into my stomach. The hospital gave me tea to drink, and as a result of that experience I cannot to this day drink tea. It starts down my throat then turns around and wants to come right back up!

The second thing is that my doctors have been keeping an eye on my kidneys ever since. I see a nephrologist, Dr. Robert Black, a couple of times a year, and he helps manage my medical care. They monitor the creatinine level in my blood, which is apparently an indicator of how well the kidneys are filtering out waste products from the bloodstream. Normal value is 0.5 to 1.5, and over the past couple of years mine has crept up past 5.5. This indicates that my kidney function is under 20% of normal, and that’s not enough.

So last October Dr. Black said the D word and told me I had to learn about dialysis and transplants before the need became critical. He referred me to a dialysis nurse for an educational session. I made the appointment, but didn’t keep it. I made a second appointment, and didn’t keep that one either. Denial was firmly in control.

A couple of months pass and I realize that I really need to do it, so I see the nurse this time and find out about how dialysis works and what the options are. Needless to say, the idea of being plumbed up to a machine every day or two for hours at a stretch is not attractive and wasn’t in my plans, thank you. But since ignoring the problem won’t make it go away, I need to confront some new options. (My friend Pat says that she knows many people on dialysis, and “it’s an inconvenience they can learn to live with.” So I should stop bitching and feeling sorry for myself.)

Over the past several days I’ve had two major medical appointments. First, I saw Dr. Black last Thursday and asked him what my time frame is before I am likely to need dialysis. And it looks like a year or less. So in two days I meet with a vascular surgeon to start the process of getting my veins ready for hemodialysis – they join a vein and artery together in the nondominant arm to form what’s called a fistula where they can connect up the dialysis in and out flows. Once they do this, they have to allow three months for the fistula to heal (mature?) before they can actually use it.

Today I spent all morning at the University of Massachusetts Medical Center being evaluated for a kidney transplant. It was quite a morning, and I took Pat along to help take notes and hear what’s going on (she came with me to see Dr. Black, too). We met first with a nurse, Linda Leturneau, who took a history and went over scads of information about what’s involved in a transplant and what they have to evaluate.

First, they need to determine that I’m a good candidate for a transplant. This seems likely, so they took some blood samples (11 tubes worth!), an EKG, and a chest x-ray and had me sign a bunch of consent forms for testing. At this point, my blood will be tested monthly and results maintained at the New England Organ Bank. Assuming that indications are positive, we will move forward to the next step in the process, which will involve finding a donor kidney.

Here I have to say that my son Alexx blew me out of the water a couple of weeks ago when he took me to lunch, told me he loved me, and then offered me one of his kidneys. I was deeply touched.

The next step is that Alexx also has to be evaluated to make sure that his blood and tissue types are a match. That can all be done in Boston. If things match up, then a transplant could happen in as little as six months or so. If Alexx can donate, then the way it works is that my insurance pays all of his direct costs (but not transportation, lodging, or loss of work time). If he’s not a match, or for any reason he’s unable to be a donor, then I get put on a waiting list for a cadaver kidney. Since I’m blood type O, this translates into an average wait in this region of 4-5 years, and the waiting time doesn’t even begin to accrue until I actually start dialysis. Another possibility, this one contributed by a friend, is the possibility of finding another donor in my network of friends and acquaintances. That’s kind of a scary prospect, somehow, but still a possibility. The doctor says that the donor’s part is fairly easy, but s/he will have to count on at least a few weeks off from work.

One other insurance wrinkle: once I start dialysis or get a transplant, I’m automatically covered by Medicare for two years (by which time I’ll be 65 anyway).

After meeting with the transplant nurse coordinator, the surgeon, Dr. Nicole Turgeon, was next. She examined me, listened to my heart and took my pulse at various places I didn’t even know had a pulse (feet? groin?).

Finally I met with a social worker, Lisa Glasheen, whose purpose was to cover non-medical areas, including insurance, support issues, and the like. She raised the possibility of applying for Social Security Disability because of the failing kidneys and concurrent diabetes. This, she said, might offer significant benefits and there wouldn’t be any penalty for applying if I were rejected. I’ll have to think about that a little more before I figure out what to do.

Then came (went) the 11 tubes of blood and the other tests. Pat figured I’d lost enough fluids at that point that I should get something to drink, so we walked down to the cafeteria to get me a soda. Then Pat had to leave for work and I got lunch at Moe’s.

I’ve got a bunch of transplant-related material to read up on now, and a lot of information to communicate to Alexx and others. (Thus the blog.) In six weeks or so I meet with the transplant nephrologist and a nutritionist.

Tags: kidney, transplant

11:46 pm: Memorials Days
Sunday, October 02, 2005

Golly, it’s been two months since I last posted to my LJ. Lots of stuff has been happening, especially in the last couple of weeks.

Harriet’s Memorial Service

First, on Thursday we held Harriet’s memorial service at 4:00 pm. The church was pretty well filled – a couple of people were sitting in the lounge in back of the sanctuary – and there was a nice reception afterwards. I had the service videotaped and I will be putting it on DVD for posterity and for friends who couldn’t be there (and some who could, of course). Also, I expect that I will ultimately put up here on LJ a transcript of what people said at the service.

Everyone told me it was quite lovely and moving. I guess it was, but you couldn’t prove it by me. I’m still pretty numb and, since I had put the entire service together, I couldn’t escape the “stage manager” aspect of the job, seeing whether everything was running OK and on schedule. Three different ministers took part and there were at least two more sitting in the audience.

One thing that I did was to put together a “display” of some of Harriet’s things at the front of the church. These included her knitting rocker, with the big picture of her on it, plus a sweater and hat, with an unfinished knitting project on the seat, her Jerry Garcia print Birkenstocks in front, and a basket of yarn alongside. I had the piano covered with some of her books and favorite movies, and some of her miniatures and other treasures, including two of the Steuben glass hand coolers that I’d given her, some special baskets, and a couple of miniature pots. Near the rocker were Angus (the bagpiper doll Harriet knitted for me), her oldest (and raggediest) Raggedy Ann, and Honey Bear. A couple of afghans were draped over a screen in back of the rocker. And the famous glass flowers were also there on display.

Last item was the urn with Harriet’s cremains in it. The ceramic urn was made by Mary Picard, a friend of Harriet’s who is also a professional potter, and it is lovely. When Mary offered to make it, I gave her free rein in design, saying only that blue and purple were Harriet’s best colors. Mary actually made three different urns for me to pick from, and the one I selected is a beauty. I do believe that Harriet would have loved it in life just as a pot.

I ended the service by playing Loudon Wainwright’s song “Homeless,” a gut-wrenching description of what it feels like to have lost a close loved one. I first heard this in August while out in the Berkshires with friends, and it simply stunned me then. Among the lines that still stand out and give me pause: “People have called to find out if I’m fine; I assure them I am … but I’m not; it’s a line.” Also, “and I don’t want to live … but what else can I do?” I thought long and hard about whether to include this in the service or not; I considered it risky because it seemed to change the focus from Harriet to me. But I finally decided that it was appropriate to use the song, and the reaction I got from those who were there indicates that everyone else was quite moved by it.

After the memorial service, I went and had dinner and came back to the church for a meeting. Friends helped me load stuff back into the car so I could get it all home. I did choose to leave the chair at the church permanently, and the flowers would stay for the Sunday morning service. It wasn’t until the next morning, Friday, that I realized that I had brought home everything … except Harriet! Yes, I’d left the urn sitting there up at the front of the church. Being as I was going away for the weekend, I decided that it would be best to go and get her that morning. Deb Selkow, our religious education director, was in the office and said she enjoyed having Harriet there. I took her home anyway.


The Breast Cancer Gathering; Another Memorial

Friday morning, Aaron dropped off the videotape of the service so that I could take it with me to the BC Tea Party, the 10th annual gathering of the Breast Cancer List group, held at the Dedham Hilton this weekend.

I drove out to Dedham, complete with my new portable PA system, prepared for another weekend of DJ duties. Met lots of old friends from previous gatherings (this was the fourth (inter)national gathering I’ve been to). Made a new friend, Rea, who was there from South Africa. Talked with Sarah about my gastric bypass experiences, since she’s thinking about it. Had an enjoyable time hanging around a lot with John Manning, who played guitar and sang with his wife Marcy – the woman who wrote the poem about Harriet’s Last Knitting Project. Talked music, CDs, guitars, dulcimers, and computers. He told me he has 50 gigabytes of music on his iPod! Now there’s a target to shoot for ….

Actually, I’m thinking seriously of getting myself an iPod for Christmas; it would simplify my DJ life considerably and would be very nice to have almost everything in one place. I’m quite taken with the tiny new iPod Nano, but I don’t think that 4GB would be enough space, especially when you can get the larger standard iPod with 20GB for essentially or close to the same price. Have to think about that.

Saturday night at the Gathering was a real collection of events. First, I “officiated” at the non-wedding (i.e., the handfasting) of two members of the group, May Terry and John. Because May has metastatic breast cancer and is disabled, she cannot get married without losing her health insurance coverage. So they had a non-wedding that, because May is a practicing pagan, was really lovely and quite different from the usual. May had asked Harriet to do the actual handfasting (tying their hands together) with a ribbon, and since Harriet wasn’t around she asked me to fill in; I was delighted. (Rev. Russ!) Hazelanne Lewis, dressed in her full Tudor costume, had created herbal wreaths for May and John and explained to us all most of the ingredients and their symbolism. She got a good laugh about including a piece of “sparrow grass” (asparagus) in John’s wreath to “ensure that his yard would stand up straight”! May and John finished the ceremony by jumping over a broom.

After the handfasting, we had dinner, and then followed the annual Gathering memorial service, remembering the dozen or so list members who had died in the past year. The eulogies this year were longer than in the past, and also seemed much more heartfelt. Harriet’s was read by Maria Rose Brent, who used most of the same remarks she had made at Harriet’s Thursday memorial in Worcester.

After all the eulogies were read, and John and Marcy had sung “Autumn Leaves,” we went outside for the group’s traditional candle-lighting for each departed member, floating the candles on the pool in the hotel courtyard. Only one candle got dunked and had to be replaced!

I was treated like royalty all weekend, with people hovering around me and expressing their concern with how I’m doing and their pleasure at how good I look. I was very honest and straightforward, telling people that I really don’t know where I’m going at this point – no goals, plans, aims, meaning, or purpose in life, no horizons to look forward to. I do believe that those things will emerge in time, but right now I’m literally just taking life a day at a time. I get up and go to work, and it’s great to have a job that adds some structure to my life. But longer term, who knows where I’m headed; I certainly don’t. At the gathering, people said they hoped I wouldn’t be leaving the group or them – and I do believe some of them were afraid I might not want to go on living. Well, I do want to go on … I just don’t quite know why yet.

Tags: bc gathering, harriet, memorial

04:07 pm: Job interview and new knives

Sunday, July 31, 2005

 

It’s been a busy week for me. I wrote (and billed for) two Quickstudy articles for Computerworld, which felt good to be able to do. But perhaps the most interesting part of the week was the job interview I had on Tuesday.

 

Since January I’ve been working part-time as a courier for Dolphin Resource Group, a small (half-a-dozen employees) accounting firm here in Worcester whose clientele is primarily non-profit organizations – day care centers, health services, and the like. The job consists of driving around (and sometimes out of) town picking up and delivering pouches containing documents, making bank deposits, and running similar errands. This is not rocket science, hardly challenging me in any respect, but the simple fact of having this to do has been a real godsend during these past months. Just knowing that I have to get up each day and go to work for a few hours and interact with at least a few people … it’s not a whole lot of structure to build a life around, but without the job I would have had no structure at all. So having this has helped me cope with the day-to-day reality of living and getting other things done.

 

So this small accounting firm has decided that it’s going to become bigger. The owner has been adding both management and staff level people with a view to offering more services to more clients. One of these new hires is a marketing director. We had a staff meeting last week at which she mentioned that we were getting a new logo. Well, you know me and logos – I had to put my two cents in. So I collared her after the meeting and mentioned that I was interested in seeing it, that in addition to being the company courier I had relevant experience as a writer, editor, graphic designer, publications manager, etc.

 

Tuesday we got together and I handed her a bunch of samples of pieces I’ve written (mainly my Computerworld work). I made it clear that I was interested and available to do some writing/editing for Dolphin. We haven’t finalized all the details yet, but it looks as if I’m going to get a new job, increase my hours to half-time, and get a serious raise in pay. This is an exciting turn of events, coming pretty much out of the blue.

 

Afterwards, I had a crash of sorts when, feeling high, I wanted to rush home and tell Harriet all about it. *sigh*

 

It’s been a busy week on other fronts, too. I’ve had two lunches and two dinners with other people, plus a church committee meeting to find a new replacement music director.

 

I went to the movies last night and saw Stealth, a pretty good action movie, especially if you like airplanes. Kind of like Firefox with CG effects and on steroids. The plot line was barely there, the characters amounted to cardboard cutouts, and the dialogue could have been omitted entirely … but overall the movie held my interest far more than did Star Wars: Revenge of the Sith.

 

Today was a knife show in Marlboro where I traded my Chris Reeve Mnandi folder to Rene Roy for two Bark River fixed blades with wooden handles – a Mini-Canadian Skinner (a knife I’ve been trying to talk myself into for nearly a year now) and a Colonial Patch Knife prototype – plus a sterling silver bracelet. (I’m rather getting to like decorating myself – new watch, wearing different albeit not new rings, and now this neat little cuff.) Overall, the show was disappointing – lots of empty tables and not that many people attending either. Several people I’d hoped to see didn’t show up, but that meant that I got out in a little over two hours and got home to take a nap. And I did make that trade, which felt good.

 

Tags: job, knives, movies

08:38 am: Life resumes

 Sunday, July 24, 2005

 

Another week has gone by, and life seems largely unchanged; still very empty and alone, still wondering what I’m going to do with the rest of my life. I don’t mean this to be maudlin or dramatic, but it is rather unsettling to just not know where I am going and what (if any) my long-term goals are. Still, it’s only a month since Harriet died, and that’s not much time.

 

Everyday life goes on. I sold my car and traded in Harriet’s van, so now I’m driving a silver, 6-year-old Lexus RX300, a small SUV built on the Toyota Camry platform. It’s a great car, kind of has the best features of both old cars, and yet it’s also different and doesn’t have any direct Harriet memories connected to it. (Since almost everything else around me is loaded with Harriet’s tracks, it’s kind of refreshing to have one area with a clear fresh start. Interestingly, I’m finding that having a constant reminder of my miles-per-gallon always displayed on the dashboard causes me to drive in a more relaxed, less impulsive manner. Harriet would have approved, damn it! Getting the car was more expensive than I had anticipated; mainly because I owed more than I realized on the van, but it’s all paid for now. Having cashed in my life insurance will take care of most of it.

 

Lots of stuff going on. Many of my friends are very much into bike-riding (and I mean seriously – 15 miles before breakfast!) and I’ve been thinking of giving it a try. Now that I’m lighter it’s not an impossible idea. I’ve started looking at bikes, and arranged to borrow a mountain bike from a friend. Unfortunately, I’ve already taken one tumble and left a serious amount of skin on the roadway (that’ll teach me to ride wearing shorts, huh?), but still thinking about it.

I went dancing last weekend, just a DJ night, but had a good time. And I'm getting better at it, every time!

Next weekend is the Northeast Cutlery Collectors Association knife show in Marlboro. That’s on Sunday, and also that weekend is the Lowell Folk Festival. I’ll definitely be going to Marlboro, but haven’t decided yet on Lowell. The weekend after that, a bunch of us are going down to Nantucket Island for a day, staying overnight at June’s house on the Cape. And the following weekend is off to the Berkshires with Tom and Mary and others for Shakespeare and Tanglewood (including the Shostakovitch 7th, which I’ve never heard live). So it’s going to be a busy month coming up. Good.

 

I’ve been working on Harriet’s Memorial Service for September 29, and I think I’ve got it pretty well in hand. I still have to get some music together, and ask several people to speak, but the outlines are in place. I’ll be having lunch with Aaron, my minister, this week and will run my plans by him then.

 

Tuesday I have a meeting at work with our new marketing director to discuss how I might use my brain to help my employer. This part-time job started out as a nothing, and it looks as if it might turn into something after all, as the little niche company is growing and expanding its services and needs help.

 

I had lunch with Tommy Peterson, my Computerworld editor, last Wednesday, and came back with two firm assignments and a continuing commitment to do Quickstudy tutorials regularly. Also the news that there won’t be a Cool Stuff this year, so I’ll have to find other projects to make up for that. I’ll be looking for more things to review, hands-on. And I still have to finish the review project that got put on hold while Harriet was dying.

 

It looks as if my life is resuming, somehow.

05:49 am: Heavy traffic!

Tuesday, July 12, 2005

I got a phone call yesterday from the director of the VNA Hospice at Coes Pond, the residence where Harriet spent her last five days. The director said that she has been with the facility since it was opened in 1997, and that no patient (client? resident?) has ever had so many visitors as did our Harriet. “I’ve never seen anything like it,” she continued. “Obviously, Harriet was a very special lady who touched a lot of people’s lives.”

Amen.

04:34 pm: Obituary, and the dying business
Here is Harriet's obit, as it ran in the local newspaper.

http://www.telegram.com/apps/pbcs.dll/article?AID=/20050703/OBIT/507030957&SearchID=73213229064650 (registration required)

Sunday, July 3, 2005
Harriet Diane (Gorov) Kay, 63

WORCESTER— Harriet Diane (Gorov) Kay, 63, of 114 Moreland St., died on Sunday, June 26, 2005, at the VNA Hospice Residence on Coes Pond after living with breast cancer for 12 years. She is survived by her husband of 41 years, H. Russell Kay; her son, Alexander Kay of Dorchester, MA; and her brother, Arthur Gorov of Helena, MT.

She was born and raised in Chicago, daughter of the late George and Phyllis (Miller) Gorov, and graduated from the University of Chicago in 1963. She moved to Worcester in 1970, working at Worcester Polytechnic Institute and later at Hubbard Regional Hospital in Webster, MA. She retired from the University of Massachusetts Medical School in 2002.

She was a long-time member of an Internet-based support group for breast cancer and co-chaired its 2003 annual gathering. Harriet is best remembered with knitting needles in her hands. She taught scores of people to knit and was an active member of the Nashoba Valley Knitting Guild. Also active in local 12-step-recovery groups, she was widely known as a careful listener and good friend who valued honesty. She was a member of the First Unitarian Church of Worcester.

After cremation, a Memorial Service will be held on Thursday, Sept. 29 at a time and place to be announced. The family suggests donations in Harriet's memory may be made to www.FriendsofBCList.org or to the VNA Care Hospice, 120 Thomas St., Worcester, MA 01608.

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That's about half of what I originally wrote, but I had to trim it. And at the shortened length the newspaper charged $320 to run it, including a picture. (For free, what you get is a three-line listing.) I was torn between my inner cheapskate, the desire to do Harriet justice and let others know, and my basic sense of outrage that one has to pay for these things at all. Ah well, such is modern life. For those that may be curious, the entire cost of cremation and other "arrangements" (no viewing), including the newspaper, was $1900, and that reflected a discount for cash. I could possibly have gotten it for less money, but somehow I just couldn't bring myself to pick a funeral home based on a billboard price ad and went, instead, with a suggestion from my minister.

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Got another kick in the teeth while taking care of the myriad of notifications and changes I have to make, Contrary to what both Harriet and I remembered, it seems we did not choose, at the time Harriet retired, to have her pension continue to her surviving spouse. Which will make enough difference to feel, but I should still be OK. (They're sending me a copy of the paper we both signed.) Now I'm also waiting for death certificates to arrive.

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Alexx drove in from Boston today, bringing back the Honda. As it turns out, I won't be trading it in after all, even though I have decided to get the Lexus. Instead, I'm selling the Honda privately to a woman from work, a young single mom who doesn't have a car. I get $1000 more than the dealer would have allowed with no hassle, and Felicia gets a super deal on a very nice car. To top it off, she's able to borrow the money to buy the car from the company we both work for.  It's a winning situation all around.

10:52 pm: Bringing the Chicken
I came across this in my files and decided it belongs here in the Journal. Harriet wrote it, I edited it, and it was published in Heroic Stories #268, January 7, 2002, www.heroicstories.com.

Bringing the Chicken
By Harriet Kay, Massachusetts, USA

In 1967, my husband and I were starting our life after college, and we were pretty poor. Russell had an entry-level job that didn’t pay much, we had college loans, and had made some stupid choices with credit cards, so we had lots of debt to deal with. Our son was born that summer, and I had to stop working and stay at home with him, which only compounded the financial squeeze.

We were living in an apartment in Evanston, Illinois, a moderately affluent suburb north of Chicago. We got involved socially with a large group of couples of various ages, some from our church and some connected with my husband’s job at Northwestern University. They all had children, we shared many common values, and they gave us helpful hints about raising our son. This active group of people went many places and did many things together. We enjoyed being with them. Even though we often couldn’t afford to go with the group, they always made us feel welcome when we came.

Toward the end of that first summer they planned a picnic and invited us. I asked what I could contribute. “Oh, bring some potato chips,” my friend said. I figured there wouldn’t be much food – just hot dogs, chips, and lemonade – and was relieved that I didn’t have to spend more than a few dollars on the event. I bought two large bags of the least expensive brand of potato chips I could find.

However, when we got to the state park, I found a veritable feast laid out. Heaps of chicken and watermelon, big bowls filled with homemade salads of all kinds. Even home-made ice cream and cake. There we were with our two bags of potato chips. I felt mortified and thought about leaving. I told a close friend that I was terribly embarrassed to have brought so little.

“Oh nonsense,” she said. “In a few years it’ll be your turn to bring the chicken.”

That was long ago; Russell and I are starting to think about retirement and our son is grown. Yet I still remember that picnic and how our friends made us feel included and valued for who we were – not what we had. Their generosity stuck with me all these years, and it’s shaped both my feelings about others and my behavior in helping them.

We couldn’t possibly pay back all the people who brought chicken for us when we were unable to afford it. We’re scattered all across the country, and we’ve lost touch with them. But that’s not the point. The chicken we enjoyed 32 years ago is a debt my husband and I owe – and will always owe – to the future. It’s not an obligation to be paid back but rather a promise to pay forward. Even in these relatively prosperous times, we still have lots of younger friends who have trouble making ends meet. Nowadays, we bring the chicken.