PEN TO PAPER
I was at the CBA in Québec City last month. The prior CBA meeting was in Calgary last year, where I went in a wheelchair. People had last seen me in that wheelchair, asked me for an update, how I was, and what had happened over the last year. I've also gotten some emails, politely asking me if I am alive, dead, or somewhere in-between — reminds me of Oscar Wilde when a newspaper story inaccurately reported him having died: 'News of my death has been greatly exaggerated'. In my own case I prefer the classic line of Arnold Schwarzenegger from the first Terminator movie (go see it at midnight at your local repertory theatre — you'll have a ball): "I'll be back".
FIVE MONTHS IN HOSPITAL
About a year ago (August 16, 2007 to be exact) I 'posted' a portion of what I wrote in hospital (actually, didn't write, because I couldn't — could only sketch large capital letters with an adapted pen- kinda like being back in Grade 2, so had to dictate) something I called Is Screaming Allowed . I had dictated it during month 5 of a 5-month hospital stay (most of it in Rehab at the Ottawa General Hospital). Including onset, I relapsed four times with something I'd never heard of — but now know intimately — Guillain-Barré Syndrome ("GBS"). They don't know what causes it, don't know what fixes it — like trying to figure out which bean in the can made you fart.
'GBS'
GBS affects its individual victims in completely non-uniform ways — no two cases are ever the same. In my case, after relapse No. 4:
GETTING RELEASED
I plateaued from a medical point of view (not getting better, not getting worse) so the hospital planned to release me at the end of August, and I was working with a hospital social worker to hire a couple of personal care attendants, checking into whether they were bonded, insured, did I want male or female, what age, split-shifts or all the way through, get up at 5 to be at the gym at 6, don't want Giovanna to do anything at all, the office is wheelchair accessible, I can dictate so okay there, hired an OT (Occupational Therapist) to see what stuff had to be done in the house (taking off doors, a lift to get up the front stairs, smaller lift to get down into the bedroom, redo the kitchen and lower everything 18 inches, side-opening oven and dishwasher, etc., etc.).
Not happy about it, but dealing with it okay — my internal mantra was 'I'm gonna do what I'm gonna do. What I'm left with, gonna use'. No more sophisticated than that.
Kept in touch with other patients from the hospital to see how they were doing, including the three other GBS patients who were all released before me — of the three of them, I was the worst off (in the sense that my lowest point was lower than any of theirs') and me and the other three GBS guys kept close, one in particular. Of the four of us, I'm now by far the best off — weird.
EXIT INTERVIEW
Before I left the hospital — and because I was the second longest-serving patient there — they asked if they could do an exit interview. They came prepared with a questionnaire and a clipboard and a lot of spaces to be filled in. I had initially thought it was going to be primarily, how's the food, did anybody try to diddle you at night, and how come you managed to get that p*rn channel on your TV (okay, kidding about the p*rn).
It started off with, so, Eugene, how have things changed for you now that you are getting out of hospital at the end of this month? Nothing has changed, not really. They asked the same question, but prefacing it with the word 'no' at the beginning, and I gave the same response. It began again (a wee bit surprising) with the standard thing people do to other people in wheelchairs if the wheelchair person appears not to understand or agree — repeat/paraphrase the same question, but louder and a bit slower. Again I gave the same response, but same decibels, same speed. I was then asked about how my vision has changed, how my priorities have altered, smelled the roses and/or coffee more, etc. So I simply said: I know you want happy answers out of all of this, but the practical reality is that I had my sh*t together before I came to hospital, I had my sh*t together in hospital, I have my sh*t together now, and I will have my sh*t together when all of this is over, whatever it ever is. Life was in balance before, it is now, and it will be, amen. Not happy about any of this, don't know where it's going, but wherever it goes, I'll deal with it. Emotionally, perhaps physically, it's like an amputation, but Gloria Gaynor-like, I will survive. Life won't be the same, it will be different, and that's okay. I can't change what happened, but I can change what'll happen next.
The following week I flew in my wheelchair to the CBA Meeting in Calgary (with my eldest son Marc to help) and checked out of the hospital the week after that — with long-term (a year's worth) prescriptions of pretty heavy doses of Prednisone and a neuropathic pain medication called Pregabelin.
WHERE I AM NOW
I've gone on way too long already — and I'm only writing this down now (I can now write normally) because subscribers to this SupremeAdvocacyLetter service and people I met at the CBA Meeting in Quebec asked me to write something down about where I am now. So here's a quick summary:
'WHAT A DIFFERENCE A YEAR MAKES'
Every now and then, walking to the gym, or watching a movie with one of the kids, or walking up the stairs of a small aircraft with Giovanna, I have to pinch myself at how very normal things are now. How last year I was so well and truly — well let's call it 'disadvantaged'. Now and then Giovanna says, 'last summer feels like such a distant memory, like a forgotten nightmare'.
Not for me it isn't. I haven't forgotten a single thing, it's like a neon light in my head that never goes off. I remember the names of all the nurses, just about all the patients. I even remember the menu rotation in the 'Rehab Café' — what was for dinner Monday, Tuesday, Wednesday, etc. (today's Thursday, so it's ghoulash), remember the names of the staff that work there too. They still work there — because I go back every now and then. It's a weird thing to go back — really difficult to explain — kinda like (I know this also sounds weird) going back in your mind and thinking about someone you used to be married to. It's not necessarily a pleasant, positive memory, it's not where you want to be now, but if you're honest with yourself, it's still part of who you are, or at a minimum, part of where you came from.
I go back because the nurses want help with this or that patient. But going back (just about) fully recovered, I feel like a vegetarian working at Burger King. I go back with all the enthusiasm of a pre-pubertal dog going to the vet. It ain't easy, but I do it.
MISS HOSPITAL
In a crazy stupid way, I actually miss hospital — but of course it's not the hospital, it's the people there. Surviving vets sometimes say they miss the battles they went through, of course it's the people, the camaraderie they really miss — and the inescapable fact that they survived and not everybody did. Same for me, I survived, not everybody did.
I'm organizing a 'Rehab Repast' in our home next month. Just trying to find a couple of people that I can't yet get a hold of, maybe they've moved, also maybe neither me nor anybody else can reach them on this side of the Great Divide. The group wants to have dinner, just us, without spouses/partners and just shoot the sh*t, chew the fat — or as we used to say in hospital: we got a 'free pass' to say whatever the heck we want.
BARBARA R.I.P.
One of my Rehab friends who will not be coming to the dinner is Barbara. When in hospital last summer, I'd often sit and have breakfast with Barb and get eight decades of life experience — a couple of centuries total if two of her friends joined us. She and her two friends were in for COPD (Chronic Obstructive Pulmonary Disease — basically too much smoking when they were younger). The last thing she said to me (with her typical laugh) before she left hospital was 'I don't generally pray for Scottish Presbyterians, but I will pray for you'.
Barb and I kept in touch over the winter. She lived in Petawawa, about two hours outside of Ottawa, and I would meet her when she came to town for a medical checkup. I was to meet her for lunch or dinner Wednesday the week before, as she was coming in for a combined medical checkup and minor cardiac procedure. If they kept her in overnight, I was to slip a bottle of cold Canadian beer into her to 'help her sleep better' — 'regular, not lite', she said. She also reminded me to bring a photograph of Giovanna and I and also our kids.
To use hospital parlance, Barb stroked out during the procedure. One of her daughters, Kim, called me to tell me they didn't know if it was minor or major. It was major. I asked if I could go see her that evening, in Cardiac ICU. Kim and her sister Karen (two of what Barbara called her four 'girls') called to give me the visiting hours and said it was 'family only'. Kim consulted with Karen and said: 'tell them you're family, you are'. I got dressed up in my formal kilt, kilt shoes and Scottish hat. Barbara went in and out of consciousness, at times fully alert, at other times completely otherwise, but recognized me, saw I was there, thanked me for coming.
Barbara had a ready wit, including in Rehab. That wit stayed with her, literally to the end. Katherine asked her two days before she died, 'Mom, guess who's coming tomorrow?'. The correct answer was her daughter Elizabeth, married to a Canadian military man posted to NATO in Europe, which Barbara knew of course, and knew that Elizabeth was en route. Barb's characteristically humorous reply (her last words actually, she lost consciousness right after) being 'Santa Claus?'.
I went to see her again on Sunday, met one of the other sisters, Katherine and husband Blake. I could tell it wouldn't be long — I sat beside her as she was unconscious, breathing shallow but strong, but could hear her lungs bubbling with fluid. You could tell — like you can tell a gas tank's almost full just from the sound — the lungs were almost full to capacity — but not of what they're supposed to be full of. And you knew it wasn't long. It was four hours — she died four hours after I left, with Katherine and Blake by her side. Wished I'd stayed. But that's life. No, that's death.
Karen called me first thing in the morning to let me know. Karen called later in the day with the funeral arrangements (two hours out of town) and I told her I'd be there. She said, 'We have a favour to ask. The family would be honoured if you would be one of my mother's pallbearers'. 'Honoured? Karen, the honour is mine. I knew your mom way too short and as silly as this sounds, she was special to me and I love her.'
The photograph that I brought to the hospital, Kim will put into the coffin, so that should there be a Resurrection, Barb will remember who I am, and come looking for me.
It's a tough thing to carry and bury a friend and put them in the ground. Many of us have done it before and will do it again. It's tough not to fall over or fall in. Everyone dies way too early, but Barbara died too early for her to teach me what I wanted to learn. It's selfish really, and I know that, but I wanted her to live, not just for her, but for me.
I know we've all heard it, and it's true, 'Life is for the living'. But death really is the context in which we all live. That's not a negative thing, just a realism.
Whenever I meet anyone called Barb, I'll always think of my hospital friend Barb — her warmth, her wit, and her Santa Claus — well, he didn't come. Hopefully with that photo Barb will, when it's my turn, come — looking for me.
SOME STUFF I'VE LEARNED
Some stuff I've learned (mostly from the other patients or nurses I kept in touch with):
And, a combined medical/grammarian query one of the Rehab nurses asked me (relevant to some of us who've spent time in a wheelchair): why are hemorrhoids called hemorrhoids and not asteroids?
I'M GREAT. I CAN SWIM
I'll stop here. This is plenty. Only meant to write a paragraph or two, only writing this down to properly answer those that asked how/where I am now. Bottom line: I'm fine. No, I'm great. I know Giovanna will chastise me for using this stupid analogy — but internally I feel I've swum through a sewer over the last 18 months — but you know what swimming through a sewer ultimately does for you? It proves you can swim.