I want to write this memorial for a curious reason: on Friday, April 26, I plan to attend a Memorial service for my friend Paul.
I know, memorials being what they are, that when I leave there I will ‘know’ a lot more about my friend than I do from knowing him for the past thirteen or so years, and I want to keep that part, and write it down, uncontaminated, because I will never know all of the other part, the more public part of I man I will miss.
I think it was at the 3rd or 4th meeting of our CFS Support Group, back all those years at what was then Hamilton Hospital (now Robert Wood Hospital at Hamilton), in a conference room on the lowest floor, when I attended my first meeting, and met the small group of people who have affected my life in ways impossible to count.
There was our gracious and fearless leader, Ditty, who I believe holds a Masters in Nursing Administration, and started the group along with Gweneth, a PhD statistician who worked for ETS. Other members were a PhD in Engineering whose name is Lon (and whose full name I learned only last week), Dr. Paul Whiter, a British PhD in Chemistry, and myself. The total education in that room was amazing, and the level of loss to society from none of us being able to do our jobs any more is still unbelievable.
Gwen managed over the next few years to become our only success story, and returned to work slowly, and then, I understand, to a fuller, almost normal life. By being able to do nothing but work, and working few hours. I’ve often wondered if that would have worked for the rest of us, who were coping with family stuff. We’ll never know.
The rest of us were not so lucky: we have been together for all those years. We’ve had a few extra people float through once, some who come and meet a time or two a year, but lately it has been just the four of us, with not everyone making it every time. Year in and year out. We met on Easter, Mother’s Day, and on whatever holiday the second Sunday of the month might fall. At least one year it was my birthday. During that time our families grew and changed, our living situations varied (though we may all still be in the same houses!). We went out to dinner a few times, and spouses and friends were encouraged to attend, and did once or twice.
But mostly we got together and talked. We tried to take turns. Paul was always quiet, not one to push himself forward. It was my self-appointed task at many meetings to try to make sure he got some ‘air time,’ to ask what things he wanted to talk about. He wasn’t reticent, just retiring. We heard over the years about many of his problems as we shared our own. I don’t think we agree on much about CFS: some of us pursued new ideas and new treatments, while others of us couldn’t spend the energy that way, most of the time. Over the long span, none of us found a perfect helpful doctor – and we tried many. The name of our illness – with the somewhat derogatory terms of Yuppie Flu and Chronic FATIGUE Syndrome – has varied. I don’t think they really know any more about it now than they did when we were diagnosed.
Our in-group joke was : But you look so well! It was a group where we didn’t have to explain being tired, or brain-fogged, or feverish, or in pain – that part was already taken into account. Because CFS is a ‘hidden disability’ – you can’t tell by looking at us – the in-joke was a way we turned the common reaction to our mutual plight from outsiders into a rallying cry.
But over those years I have accumulated a portrait of a wonderful man. Intelligent. Funny, with a wry sense of humor. Inquiring. Well-read. A thorough gentleman.
He battled the same things we all did: being depressed as a side-effect of this stupid illness which robs people of the ability to do the things they love, the things they were trained to do. Erratic pain, medication effects, sleep, nutritional side effects.
I’m feeling very stupid: I can see his face in my head, and hear his voice, but I can’t remember a single specific thing any of us has said in all that time. We never took a group picture. I’ve been to Ditty’s house, and she to mine a couple of times – but the guys never made it.
It was that special time – and we were friends within it, and accepted that time to support each other, to argue about treatments, traditional medicine, medications, alternative treatments. Rest and meditation and sleep. Outside, I saw Paul because he volunteered to do the sound at the Princeton Folk Music Society concerts, and I’m also a member. He was there, too, almost every time I was, sitting quietly in the back of the room, keeping the recording and sound system working, supporting the performers. In fact, I got the email from PFMS about Paul – no one thought to let the three of us know; we need to make sure that doesn’t happen in the future.
We talked about our family situations a bit. Just the basics. About his work at Princeton House as a counselor. About his friend, Mary.
One time, when he turned 75, a friend of his from ‘real life’ (maybe his church group – I know he was active in his church, which I believe was the Episcopal Church in Princeton – for some reason Nassau St. comes to mind) made him hand over a list of friends to invite – and my husband and I went to the party, and heard from many of his friends what a wonderful person he was. It made him uncomfortable, but if you live to 75, you have to put up with a few things.
I know he always had several housemates to help with expenses – so he could continue to live in his house. I believe he had cat(s) – because he mentioned it/them once or twice. I think he had several daughters, at least one back in England. And that is the sum total of what I know about a man I am happy to say was my friend.
I don’t know why our group became small – and stayed that way. Possibly new people, with the internet at their fingers, get their support online – without having to drive to a meeting. But we are all old-fashioned, and it’s curious that we stayed together, as a group, four out of the five who were there when I started.
I’m grateful that our meeting place was no more than 15 minutes driving for any of us – it helped. And the RWJ Hospital at Hamilton has been a lovely host – they ignored us just fine; I think we may have eventually made it onto their list, because there were occasional newsletter from them – and we were in it.
There were the occasional emails and phone calls, but all that took energy I didn’t have, and wasn’t at all frequent.
Going to the meetings taxed our energy, but if we could, we made it.
When Paul came – almost every meeting unless he was particularly sick, and even then some times – I always felt better the minute he walked in.
It all seems so trite – we always felt we had plenty of time somehow. Or maybe it was that our time together every month was just barely enough for what we had to do, which is support each other in whatever specifics came up that time. Recently it had been about his recovery from a very odd type of tumor – we really thought he’d beaten that one. For a while, because of it, he wore an eye patch, and looked very distinguished with it. When his hair hadn’t grown back, I told him he had a very distinguished skull – because he did. Some people look fine bald – he did.
We will miss him very much. I will miss him very much. As a fellow Christian, I hope he’s happy and healthy and past all of the stuff the rest of us still have to deal with. Our respective church groups in Princeton both use the beautiful Princeton University chapel. We never were there together, but we had talked about the times we had been there, and how uplifting a place it is for the spirit.
If there is a cure, which doesn’t seem to be happening very quickly – or even a true explanation other than ‘absence of any other reason for symptoms,’ we will think of him and wish he’d lived to see it. I’m having a very hard time right now imagining a life where I don’t see him every month.
These are MY memories, all I can think of. I didn’t run them past Ditty or Lon (who would probably tell you I got half of it wrong).
Requiescat in pace, Dr. Paul Whiter.