And (blessedly) Home Again

Dear all –

An update, post-UK trip…

Primarily, this is a confirmation that we (not just I) survived!

The plane rides were tough – particularly on the way there. I appreciated the distraction of inflight movies/documentaries…and knowing that the experience was of limited time. J  It was wonderful to be able to go straight from the airport to our friends’ home in Herne Hill, and then immediately horizontal. (Did I mention that the 1^st wkd we stayed with an ‘Emergency/Intensive care’ medic, and the 2^nd wkd split b/n her and a cardiologist & physio couple? We are blessed with so many medical friends – and ones who are very generous in their care.) I slept much of the wkd, whilst Greg visited with our friends, and then on Monday we travelled down to Cambridge – early, so that I could sleep & recover some more, before the conference began on Wednesday. Greg left me in the very capable hands of Ben K. for a couple of days – Ben had come along specifically to help look after me, and did a wonderful job! I should add too that the staff at Trinity Hall (7^th oldest Cambridge college, founded in 1350) – scouts & porters in partic – were overwhelmingly kind and generous in making sure I was as comfortable as possible, voluntarily bringing me iced water twice a day, helping Ben print things for me, etc etc….really, they were amazing!

Wed was fortunately a short day, conference-wise. It was so wonderful to see friends & colleagues that sometimes I don’t see for years at a time. Already after the first hour I was so very glad to be there. But I was also glad to go to bed very early, and, throughout the conference, to be able to go back to my room (only a few metres away from the lecture hall) for naps during the frequent tea-breaks and meals – Ben faithfully wheeling me to & fro.

Thursday was the big day: my keynote lecture first thing; then a couple of talks by colleagues that I could not miss; then (after a long nap!) a punt ride on the River Cam [long-promised to me by the president of the Society, a seasoned Trinity Hall punter, if I actually succeeded in making it to the conf]; then (after another long nap) High Dinner…not only my first full meal in a ‘normal’ chair since the surgery, but even for months before that.

And,

I survived!  The lecture went really well – I dared to propose that biographical & cultural context could lend significant insight to (and illuminate the cohesion in) the MacDonald book CS Lewis claims ‘baptized his imagination’ – and attempted to show how. A lot of folk pick up Phantastes b/c of CSL’s claim, but everso many are stymied in their attempt to grasp (even, for many, to enjoy) it. The whole difficult endeavour of the trip was made absolutely worthwhile when fellow MacDonald scholars repeatedly came up afterwards to tell me that I’d absolutely convinced them… that a text some had studied for decades, but never ‘got’ as a whole, now made sense. Perhaps the greatest gift was when a former – now retired – professor (the first to ever teach me GMD, and someone I admire greatly), told me that she wished she could now teach the text again …

(Thank you to the GMD Soc for daring to hold open that keynote slot for me, despite the ambiguity over whether or not I’d actually be able to make it!)

The punt on the Cam was incredibly lovely – for both the boating and the company (from two teens to a senior scholar, representing England, Canada, USA, China, and Romania!) A cherished memory for us all…

And the High Dinner was glorious. Truly fine dining, and very special company. Greg arrived back in Cambridge in time (he’d been hiking in the Lake District with a godson), and we were sequestered at the far end with a small group of, yes, fellow scholars, but more importantly very dear life-friends. It was a treasured gift.

I lingered longer than I should have, of course…all too lovely!  And then paid for it all the next day.

Friday was very tough.  It was hard for me, throughout, not to be able to visit with friends, colleagues, even young scholars I’ve corresponded with over the years, during the breaks and meal times – but I really did have to lie down at every opportunity, and though I had desperately hoped for some engagement time on Friday, it just wasn’t possible.  I even had to miss out on a couple of papers.  There may have even been a few tears of pain and frustration as I tried to make my body start working in time to get to my former supervisor’s opening (and brilliant!) paper.   Friday  was  hard.  But for all I couldn’t do (and focus after the opening paper was seriously compromised), there remained the fact that I had made it and was there, and was soooo grateful. I could not have done it without Greg, Ben, or Margie (a friend who currently lives with us, and who gave a great paper!).

The conference itself was a definite success.  Solid papers; really good papers; exciting papers!  A grand combo/mix of keynotes.  Keen discussion; collegiality; the building of long-term relationships. It is brilliant to see/hear the work that is being done in this rapidly growing field, with important knock-on ramifications in many others.  And it is invigorating that the material is so often not merely academic, but actually stuff that can transform lives and communities.  And…the company is simply grand. Good folk end up working on, wrestling with, GMD…

Friday evening – after a delightful dinner (my second in a ‘normal’ chair!) with a dear friend from Regent days who we see far too seldom (and who has foolishly committed to speaking at a future Linlathen… Do beware being cornered by invalids in person! J) – we headed back to London. Another wkd of sleep, punctuated by visits with more wonderful godchildren and their families (we somehow managed to visit with 4 godchildren!!) … and then,

the flight home.

Survived, and over with, and now several days gone by. Much more sleeping, and now we begin to slowly ease back into old patterns. I’m still sleeping a lot, still tire out incredibly quickly/easily, but I’m moving doggedly towards pre-atlantoaxial-subluxation-me. It’ll still be a few months before RA drugs fully kick in, some time yet before I can even resume the last of my RA meds, let alone sit for any length of time at a keyboard to correspond, but we’re getting there. And, with the help of many dear people, we did Cambridge!!

This is probably (hopefully!) the penultimate entry on this blog…we’ll report back after the mid-August x-ray & appointment, when we find out if the graft is taking…and hopefully also the date on which I will be set free from my not-very-summer-friendly 24/7 cervical collar!

Until then,

Huge thanks and much love continuing,

kjj & gj

an addendum

A quick addendum, in response to a couple sincere – and, I think, important queries:

“Where does one draw the line between ‘being honest’ and ‘complaining’?”

That can be such a very tough distinction to make! No emotionally healthy person enjoys listening to complaints (nor, for that matter, enjoys making them). And certainly for me, and I know for many others, one of the biggest hindrances to being honest (and thus, to not being dishonest) about ‘how one is doing’ is the fear of sounding like one is complaining. 

Not least in a culture that conditions us to only ever hear a chipper response in reply to “How are you?”

Many years ago I read a quotation that rang deeply true: “Life is 2% of what happens to you, and 98% what you do with it.” I have been blessed with a sufficient number of incredible older persons in my life who have been through unimaginable trials, and yet who are some of the most joyous – as well as the wisest & kindest – people I know. Through them has been repeatedly modelled to me that we have a choice when tough things, unfair things, inexplicable hard things, happen: we can be bitter about it, or, refuse to become bitter despite it. Bitterness is insidious – it seeps into other parts of your life, it curdles things, it is unpleasant to be around, it – as a favourite author wrote -- turns a Person into a Grumble.

Refusing to become a bitter person does not mean there is no place for anger, for frustration, for crying out “this is not fair” – as some of you know, perhaps the best model there is of someone doing this necessary-for-mental-health-and-internal-honesty venting is the Psalms. But choosing to not be bitter means choosing to not rest, to not revel, in that space…it means being honest enough to not only acknowledge the ugly, but also honest enough to acknowledge the Good that is also in your life too – and then choosing for that Good be a bigger part of what defines who you are, and how you live, than the tough and ugly.

This can be hard to do on one’s own, and I personally don’t believe we are supposed to. I think that we are supposed to live in community with one another, to help each other carry the burdens (which can’t be done if they are hidden!) and highlight the joys – as you who are reading this already do for Greg & me.  

(nb. A whole different dimension is added to this discussion when also addressing the massive challenge of mental health, and the warriors in our lives who have to fight that battle as well…for them, more than ever, is the strength of community needed -- a strength which can only materialize if the community listens to those warriors, as well as supports them).

Clash of the Consultants

Dear all –

Thank you so much for the continued kind words and check-ins – it’s hard to believe that more than a month has passed by since the surgery! (though when one sleeps this much…!) The staples have been removed, and both scars are healing up very well. (X-rays in August to assess how well the bone graft is taking.)  As Greg was explaining to a friend this week, we have now reached the stage that is most difficult for folk to understand, because we are back into the realm in which RA takes the dominant role. Risky surgeries, compromised brain stems, and threatened arteries are so much easier for most people to grasp. And, because these all existed as issues within a limited timeframe, they are easier to emotionally process. The biggest danger now past, healing from neurosurgery will take time but will progressively occur; the RA, on the other hand, continues its steady toll. Chronic pain (and how it affects even one’s carers) is a difficult thing to explain, and not something many people even want to understand: it’s awkward, and seems nonsensical. (For those of you who frequently engage with someone with a chronic disease, I highly recommend reading this short analogy, introduced to me by my cousin: www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ Like all analogies, it is imperfect – but it’s possibly the most helpful & useful explanation that I’ve come across.)

For the past week & a half we’ve been in a tough uncharted territory. We’ve done the ‘RA-thing’ for almost 20 years now (and I say ‘we’, because my RA affects Greg’s life as much as it does mine) – but never have we done so without RA medication! Even when the meds were ineffective enough that I was bed-bound for months, or in the wheelchair for years, I was still on the doctor’s best-guess of a chemical cocktail. But right around the time of the conference here at the farm, my body really passed the mark in which the areas affected by surgery became almost non-entities in contrast with the RA pain. My neurosurgeon has continued to hold to his demand of “no anti-inflammatory meds, nor RA-specific meds, for 2 months.” But we got to the point at which – regardless of morphine amounts – my pain in the mornings was significantly worse than anything I had experienced post-surgery in the hospital. (For those unfamiliar with RA, mornings are always the worst for both pain and mobility– one ‘greases up’ through the day, with late afternoons/early evening usually being the best zone, and then a slowing down again in the evenings.) Greg has been having to lift me out of bed and into the wheelchair every morning, to get me across to the bathroom – and it’s been increasingly excruciatingly painful. This morning was close to untenable -- I actually thought: “if I can’t get a steroid shot from the Rheumatologist today, I’m going to have to go back into care of some sort – neither of us can do this.” (The craziness of RA is, folk who saw me even a few hours later would have had no clue of what we’d gone through: I looked stiff and sore, yes…but I could move myself with my walker, smile & be pleasant, and ‘carry on’…) But,

bless my Rheumatologist, she said at today’s appt: “Your RA tests in at 100% worse than when I saw you just before the surgery: I’m giving you a full-body [intramuscualr] steroid shot. If the neurosurgeon is unhappy about this [I’m sure he will be] send him to me.”  She muttered a bit of the old complaint that I hear from rheumatologist friends as well – about how impossible it is to make doctors who deal mostly with ‘fixing-up,’ understand the nature of chronic progressive ‘unfixable’ diseases.  I recalled the day I’d left the hospital: I clearly saw that lack of comprehension in one of my doctor’s faces, when, after he’d told me I’d start feeling much better each day now, I tried to explain that no, because I was off all of my arthritis meds, I knew that I’d actually be feeling increasingly worse each day until I could resume them [let alone, that parts of me would actually be getting increasingly worse, as RA damage is undoable]. How hard it must be when even one’s colleagues don’t get that about shared patients! Anyways –

that big steroid shot my Rheumatologist gave me today will start working like magic – really! – and Greg & I should have no more excruciating mornings. She also told me to definitely go back to a full dose of anti-inflammatories, and to resume 1 of my RA meds. (She concurs with the neurosurgeon that I shouldn’t resume the other for 2 months). My hope & expectation is that this means I shall – bit-by-bit – start getting back to at least close to my normal.

It also means that Cambridge will be possible. The past 10 days had made Greg & I quite concerned about that.

So – a huge huge thanks for the miracles of modern medicine…as well as for my Rheumatologist. It’s humbling to realize what one knows, but so easily forgets: that not many decades ago, I’d be permanently in that excruciating RA pain, if alive at all. Please do encourage all the medical researchers you know – they seldom get the [deserved] kudos of a surgeon, but without them too, many of us would not be here!

I’ve nattered on much longer than I like to about RA & pain etc here – but I am increasingly convinced that it’s important to be publically open and honest about journeying with such challenges: how else can we know that we are not alone, that there are other humans with whom we can share and from whom we can learn. Being praised for ‘never crying,’ for never showing or admitting to how hard things may be (whether the trials are physical or emotional), breeds a damaging sort of pride. And it helps no one. An Oprah-style ‘advertise your baggage’ culture is not healthy, but I think its attraction emerged from an equally unhealthy ‘pretend all is well’/‘put on a happy-face’ culture, that lauds a façade of ‘you’d never know anything was wrong.’ Honesty is another name for Truth, and I do believe that the more honest we are about pains and trials, the more able we are to celebrate our joys – of which there are many, and usually, more.

On that note, thank you to those of you who were also praying for the conference in late June. It went very very well. Team mtgs were held around my bed (thank you Greg!), and although I was stuck here throughout, video streaming was set up so that I was able to listen in on every session, even if in my pyjamas: such a gift! The Team of volunteers who made it all happen were incredible – and amazing at looking after me in addition to ensuring the conference ran smoothly. Bruce & Ivan were wonderful – the delegates left hungering for more. Even folk who were just on the peripheries, or only attended the public performance on Thursday, repeatedly shared their enthusiasm and excitement over this venture of the ‘Linlathen Lectures.’  And, I am hugely grateful that the RA became its ugliest after the conference had ended – one more grace, amongst a myriad.

* * * *

I wrote the above in a couple of stints last night. It is now 6:30am and I have just returned from my morning ablutions – alone! Greg is still blessedly asleep…or, was until I kissed him awake whilst standing beside the bed. He was satisfyingly stunned, and now has slipped back into sleep again – may he ‘sleep in’ long and well.  I might just do a little more myself now.  J