Dear All –
My
apologies for taking so very long for this update – some of you have kindly
tugged on my shirtsleeve to ask: how’d the x-ray & mtg with the neurologist
go?
It went ok.
The good news is that the healing is happening in the way it should – and it is happening. The less exciting news is
that it is taking much longer than normal.
This is not
at all surprising, because the healing has an uphill battle not only due to the
RA (which causes white blood cells to go into overdrive, attacking all sorts of
things they shouldn’t…not just joints, as many folk think, but cartilage,
organs, tissues, eyes, blood vessels, etc), but also because of the RA meds
which had to be reintroduced. I’m still not back on all of the RA meds, and
shan’t be until the bone fusion is complete, as those meds will directly impede
that fusion…but I am back on
anti-inflammatories and my weekly anti-TNF injection, because the rest of my
body was ceasing to be functional, and starting to be irreversibly damaged
elsewhere. Whilst these meds make life livable, they are also slowing progress down a fair bit.
So, an
appointment was made for 6 more weeks down the road with more x-rays and
another appointment…which means I’m still 24/7 in the cervical collar (I’m now
on replacement # 4, as they are not made to be worn this long – 9 months &
2 days thus far!). I won’t be able to begin physio until the fusion is complete…at
which point I will have to “wean” my neck off of the support-dependency. (I had
to have a photo taken for publication purposes recently, and I tried sitting
perfectly still with the collar off, just as I do when Greg changes the collar
pads after a shower etc, and 5 min without that support upon which my neck is
now dependent was exhausting! It should be noted however that the very creative
photographer managed to make me look fairly natural.).
The outcome
of all of this is often confusing for people around me. I ‘rollercoaster’
physically…despite the higher doses of pain-meds (I’ve been on lesser doses of opiates
every day for 17 years now), and the reintroduced meds, the RA still increasingly
gets the upper hand until I have to give in and get another steroid shot. Then
I suddenly have much more energy and ability, looking like I’m ‘much better’….
until the effects wear off (combined with strengthening 'unrepressed' RA symptoms), and I have to head in again. As time goes by, my
body gets increasingly used to the steroids, and so they become less effective –
meaning a rise in either amount, or of frequency.
Mix in the fact that I am
almost always “up” when people are around (adrenaline, endorphins, life-long
habit, etc), it is confusing for some people -- who see me and assume that I’m
clearly doing great -- to hear that I am just ‘ok.’ Add in that I might actually be worse than I was when they saw me 3 weeks before... it is just weird to wrap one's head around.
I used the words (above) “have to give in” –> this is an
intentional turn of phrase. To continue frankness in my updates: I have been at the receiving end of lectures
numerous times, from several doctors, in the past month that – to quote one
verbatim – “look: nobody’s going to give you a hero-prize” for taking less pain
meds.
Ouch.
The medics comprehend
(at least conceptually) the struggle of trying to balance brain efficacy (and
general productivity) vrs pain-level, but they unanimously agree that I push it
too far. They tell me that typically they have issues with patients taking too much
pain medication, but that my (long-term) issue is that my pride gets in the way of me
taking enough.
Again, ouch.
It’s true –
of course it’s true. Too much of my
identity and sense of self is wrapped up in my verbal and written
communication, in my thought process and observations, etc. Let alone in not
being ‘weak’ (despite my intellectual cognisance of all the falsehoods here -- trust me: no need to convince me of the foolishness!). My
‘vocation,’ limited as it is, is dependent upon these things, and has struggled
against the impediments of opiates and fatigue (for the pain itself can have
similar effects…it’s a daily balance, a quotidian re-evaluation) for these 17
years. (Plenty of studies will point out the unavoidable accumulative fallout.) I deeply believe that ‘relational’ intelligence and effort is of far greater
significance – especially in the
academic world where this is an almost institutionalized blind-spot – and that that part of me will always be more
important…but the truth is that it is easier for me to occasionally take “more
meds” so that I have the energy to engage with people (adding, frequently, to
the misassumption that I’m doing well, ‘cause I look ‘good’), than it is when I’m
sitting, staring at the screen, with absolutely no physical/mental/emotional energy
to write/create/respond/hold-my-neck-&-arms-up. More meds will deal with
the pain, but will only further impede the brain, so I put them off.
But, as a doctor
said last week: “you need to suck it up and accept that you are going to have
an even poorer functioning brain until all your normal meds kick in again,
regardless of how far behind you are on work, correspondence, or whatever.”
Not easy. I
am trying, really. I don’t like the fallout – an inflation of pre-exisiting
challenges. As all too many of you know,
I’ve done almost no e-mail correspondence for months on end. Not even thank you
notes, or ‘yes I am alive’ notes. I’ve
pulled off a couple of random “gotta do it for work for others” emails, but even
with those I am about 90% behind – despite negative ramifications for grants,
for publications, for securing speakers, for holding-to-verbal-commitments, inconveniencing colleagues, etc. Let alone all of the relational-end-of-things. (and I daren’t say how long
writing takes me -- even this note today is, well… it’s my ‘accomplishment of the
day.’ Probably the week.)
I am doing my darndest these days to ‘suck-it-up’
– though Greg’ll attest that I’m not finding it easy. J
I’ve got
two big goals for a month from now: a talk at an Inklings conf, and a lecture for Arocha here in Ottawa. The physical cost of such endeavours is huge -- only Greg gets close to seeing how huge -- but they are also mental/emotional life-lines for me. Another steroid shot, and hopefully I pull it off. But I'm also deeply conscious of how deceptive the appearance of conquering these things will be.
As both are versions of talks given previously
(the first is a shortened version of Cambridge; the other is similar to what I gave in
Hamilton last year), there’s not much brain-work to do – just to get there and
present. Doing these things are life-shots (not the least for the
friends I’ll be able to see at the events), despite the pretty big price
to pay afterwards (in recovery etc). But they also mean that so many other
things won’t get done in consequence. I am blessed with an awful lot of patient
and grace-filled people in my life.
But, enough
of explaining all that, and about my having been put in my place by the doctors…!
I can feel over
1/2 of my scalp again – hurrah! And I can sit at a table to eat again!
After the last steroid shot I was even able to do a
short canoe ride with some dear friends (I sat regally on cushions in the
centre), and Greg & I managed a very short ride on our tandem [which is
designed so I can simply sit, whilst Greg does all the work]. These both were
wonderful and liberating events…but the latter in partic resulted in a few
very bad neck nights/days afterwards…so it’ll be a bit yet b/f we try it again.
A lot of my current neck pain is due to the fact that, b/c I am so much better
than I was, I am accidentally moving my neck more, bending over, etc…so, while a
literal pain, it is evidence of
progression! (and general muscle wastage is a little less evident too!)
On the
daily front, the resumption of university term means the diminishment of the
incredible team of young folk who were around here all summer – tending the
property and animals in ways I couldn’t [during the worst local drought on
record no less], tending and entertaining me,
distracting me with our weekly ‘book-&-movie’ group, beautifying the
property with paintings, viewing platforms, garden fences, etc. They were amazing. One of the last ‘jobs’ was
the painting on our front hall wall the renowned quotation of Julian of
Norwich: “but all shall be well, all shall be well, all manner of thing shall
be well.” And it shall be – and in ways more wonderful than we can ask or imagine.
I don’t understand the Grace that has made it so easy for me to believe and live
in the reality of this, but I am deeply grateful for it. Although the ‘Windstone
summer team” is largely gone, there is still no shortage of friends who check
in on me daily, run errands, and do practicalities I can’t.
If only for a magic
wand to give me more quiet solo-hours in a day, more energy, more clarity, and
thus more productivity…. – but really,
who of us (at least those past 30!) does not long for the same. I am blessed
with friends, family, husband whom I would never exchange. And these I treasure
dearly – even when I am months, perhaps years, behind in telling you so!
