Living in Limbo

Myeloma people are very familiar with limbo. Obviously, I don’t mean the dance. Seeing as most of us have holes in our bones, and more than likely at least one collapsed vertebra filled up with cement (I’ve thankfully avoided that thus far), I think it’s safe to say that we’re unlikely to be found indulging in that.

What I do mean is more akin to the limbo which Dante and Virgil find in Canto IV of the Divine Comedy, as helpfully illustrated below in a) a picture by Gustav Dore and b) a lego model by a Romanian man.



For those of you unfamiliar with the Divine Comedy, the potted summary is along the lines of: Dante has a mid-life crisis aged 35, and finds himself lost in a dark wood unable to find the right road out (ooh look – someone else was a fan of the metaphor). From there, Virgil (his ancient poet hero) leads him successively through Hell, Purgatory and lastly Heaven. Hell (Inferno) is a gruesome funnel-shaped pit reaching down to the core of the earth, with nine concentric circles getting narrower and narrower and the Devil himself trapped at the very bottom. Out the other side of the earth, Purgatorio is a mountain with a series of terraces leading up to the top. Heaven is, well, up in the sky and just heavenly. Each circle or terrace is dedicated to a particular class of sin and its appropriate punishment, and Dante and Virgil observe and speak to a series of sinners at every stage along the way. A lot of the names are his contemporaries and unfamiliar to us, but the types are recognisable and the footnotes do enough to help you figure out that it’s basically a Tuscan 13th-century equivalent of Boris Johnson, Tony Blair, Simon Cowell or whoever.

Even though I read the whole thing in my student days, I can’t quite remember what happens at the end other than the last word ‘stelle’ (stars). Maybe |I was running out of time before exams and rushing it. Frankly, I think it’s also widely acknowledged that Paradiso is pretty dull (lots of dancing around in circles holding hands and singing), whereas Inferno and Purgatorio are much more interesting. I highly recommend reading it all. Or, if you’re having a particularly bad day, you could imagine various of your acquaintances enjoying some suitably apt personal hell.

Anyway, limbo. Firstly in a more abstract and sadder sense. I won’t get into the theological underpinnings of who Dante decides is in this grey zone first circle on the outskirts of ‘hell proper’, but the quotation below which I found on the first illustration above does seem poignantly apt for us myeloma-ites (at least in part – make of it what you will):

“For such defects, and not for other guilt,
Lost are we and are only so far punished,
That without hope we live on in desire.”

Great grief seized on my heart when this I heard,
Because some people of much worthiness I knew,
who in that Limbo were suspended.

And to get back to the more literal and less tear-jerking point I’m trying to make today: I thought I should let you all that I still have no idea what treatment I’ll be doing, where I’ll be doing it, when it will start, how long it will last, what side effects I’ll have, how quickly or indeed whether it will work, etc. I do have more information to work with than this time a week ago, but that makes it currently less rather than more clear. To give just one bit of insight into this: there’s a clinical trial that I might well be interested in, but to be eligible for that my result from one particular blood test needs to reach the magic figure of ’100′. I heard yesterday that my latest test on January 9th was at ’59′. Back in early September it was ’26′, so it may well take another few months to hit ’100′. By that time, I may or may not have other symptoms which may or may not trigger a decision to start treatment sooner off trial rather than wait; and the clinicial trial may or may not be full up and have no spaces left.

So what’s my life like in the meantime? Some waiting: I’m currently waiting for a phone call from a doctor which was due a couple of hours ago. I’m waiting for results of that same blood test done a few days later when I got my second opinion. I’m waiting for various follow-up appointments for more tests and discussions. I’m waiting for my gut instinct to percolate through amid all the different combinations and permutations. I suppose, bizarrely, if I do that particular trial I’m waiting for my results to hurry up and get bad enough so I can start it. Plenty of ‘doing’ also, including of endless admin tasks that manage to hit the ‘boring’ and ‘stressful’ buttons simultaneously. You’ll all have had those times in life (house-hunting, mortgages, weddings, etc) where it’s like having a full-time job on top of your full-time job.

But equally I called this post LIVING in limbo. In a sense, I’ve been in variations of this state since May 2012. It’s all new and not new at the same time. It doesn’t get any easier, but I have got more practised at living with uncertainty, and even uncertainty about the uncertainty. Making and adjusting and breaking plans with gay abandon. And life does go on: I do still have that busy and interesting full-time job; I’ve started a creative writing class (and predictably haven’t done my homework for tomorrow); I’ve seen two films in the last couple of weeks (12 Years a Slave – lived up to the hype – American Hustle – didn’t); I’ve got two friend’s birthday parties this weekend; I’ve got two friends fleetingly in town this week from Sri Lanka and Brussels respectively to catch up with; most excitingly of all, this time next week I’ll be queuing up for my overnight flight to Cape Town.

So, myeloma buddies: let’s limbo! Even if we can’t do it literally, I know we’re all doing it metaphorically.

Yours, practising extreme flexibility,
Helga the Great.