happy new year

music to start 

 

 

lessons from 2021: 

• Vaccines are good.
• Democracy does not mean 'my ignorance is just as good as your knowledge'.
• I tried but cannot be friends with people who accept the death of other people for their own well-being.
• Some things are so deeply personal that they can be revealed only to strangers.
• Life with a chronic disease does not become easier over time.
• There exists a new level of exhaustion and tiredness that bears promise, of sleep, deep sleep, forgetting, the comfort of lying down and closing my eyes and then - nothing. Hours of nothing but sleep.

lessons for 2022: 

• cope
• sleep
• read 
• go easy on the experts 
  

and now for some strangely nice stuff:

two women

Joan Didion has died in her home today. A sharp mind, an observer and capable to express in words what we only guessed as true. These are three of the many quotes from her that I have underlined, copied and pasted, scribbled and memorised over the years:

We tell ourselves stories in order to live.

What it was like to open the door to the stranger and find that the stranger did indeed have the knife. (on being diagnosed with MS)

There must be a mistake: only yesterday I was in my fifties, my forties, only yesterday I was thirty-one.

Joan Didion

 

And in another part of the world, in Dublin, our sweet Nuala died peacefully at age 102. She was quite another soul, gentle, kind, always helpful. We took her for granted and she loved us for it, unreservedly. I've written about her here.

These two could not have been more different and yet, they both made a difference, enriched my life so much.

 

 

In all my life I have never lived far from a forest. Or at least not too far. And although I grew up with forests around me, learned much about life from forests, building dens, wading through forest streams, climbing trees, picking berries, watching dear, hares, frogs, collecting blue jay feathers, grass snake skins, empty birds eggs, snail shells, dead lizards . . . as a kid, I always dreamed of the open sea. Of wide horizons and rolling waves. 

And now in these strange times of pandemics and travel restrictions and my own physical limitations due to new symptoms, the forest has once again become a shelter and a place of wonder and discovery. The open sea is too far away. I rarely dream of it these days. Instead, I turn to the river, cycling the same 10 km stretch, day after day, pushing against the cold wind or being carried along by it, beside me the water flowing dark and fast, I follow fat barges and the birds keep me company, geese, ducks, gulls, cormorants, and all the while, the thick forest on the hills is watching over us below the enormity of the clouds. 

it's time for the sky to grow larger

If you are closer to being old

than you would like to be and slowness

begins to redefine the idea of difficulty

into something you would much rather

take a pass on, then it is time for the sky

to grow larger than the earth, than the sea even . . .  

 

Jim Moore

Today I was informed that I probably don't have MS or maybe just a bit of it and that we'll have a look at it again in a couple of months or so. Nothing to worry, they said. Not yet anyway, they reassured me. As for the symptoms, well now, they said, our best bet is that these could be side effects from the monoclonal antibody therapy and right now, there is no distinct nerve damage. Yet. So tell you what, they said, we'll check that over the coming months. Just watch your step, you don't want to have a fall. Still, you better go for the lesser evil and continue with the monoclonal antibody stuff because where you're at with your illness it's all a matter of weighing one shit against the other.

Or something like that. This is the colloquial version of several long and serious phone calls. The way I retold it a hundred times by now. You get the gist.

Then I watched the latest press briefing from the WHO on our new friend omicron, which is spreading at a rate we have not seen with any previous variant, infection numbers are doubling within a period of roughly 40 hrs. So please don't make the mistake of dismissing omicron as mild. It's not vaccines instead of masks. It's not vaccines instead of distancing. It's not vaccines instead of ventilation or hand hygiene. Do it all. Do it consistently. Do it well.

But most importantly, this issue was discussed: 

Journalist Gabriella Soto Mayor from Mexico. asks: "One of the things that most worries many children is Santa Claus - because he's old, he's overweight. They are concerned whether Santa Claus is able to leave his house and stay safe; whether he will be able to travel. So, do you have any message to the children in Mexico and, maybe, all over the world ? Thanks." 

Dr Van Kerkhove (WHO) answers : "Thank you very much for this really important question. I think you have highlighted a concern that many children have across the world. We can tell you that I understand the concern for Santa because he is of older age and from one of the risk groups. But, I can tell you that Santa Claus is immune to this virus. We had a brief chat with him and he is doing very well. Mrs Claus is also doing very well. They are very busy right now. We have also heard from a number of leaders across the world who have told us that they have relaxed the quarantine measures for Santa to enter their air space. So, he will be able to travel in and out of the airspace and be able to deliver presents to children anywhere. But, I think it is very important that all children of the world understand that physical distancing by Santa Claus and also of the children themselves must be strictly enforced. So, it is really important that the children of the world still listen to their moms and dads and their guardians - and make sure that they go to bed early on Christmas Eve. But Santa will be able to travel around the world to deliver presents. So, thank you very much for that important question."

Before we shout, ugh what condescending adult rubbish, I can confirm that I have met children who are most concerned not just for this gift bearing overweight elderly santa-like figure but also their overweight (or not) elderly relatives and friends in general.  Children are not stupid.

In other news, cycling still works a dream, better than walking. And, only seven days to midwinter. The sky will grow larger again, soon.

to be continued

 

the walnut tree farm early Nov

 

•  Spring

Me: Sometimes, not all the time, and only some days, not every day, don't get me wrong, I have these new symptoms, nothing dramatic, just odd really, not painful, but well you know I wonder, could this be a side effect of this new drug regimen? I've read . . . -

Expert A: Don't read stuff on the internet. No, no, the symptoms would be so much stronger and anyway, it's extremely rare to have these side effects. Don't worry.

My inner voice: Here we go again, extremely rare. Could not happen twice, surely. Keep calm and carry on.

• Summer

Me: Well, these symptoms are still with me and you know, should I . . . 

new GP: This is outside my skill set, why don't you see expert B and expert C. Can you organise this yourself? 

My inner voice: Who is she? Why do I come here? She's meant to be my GP for crying out loud.

Me: Thank you, you are so helpful, of course I can check this out by myself. (goes home, makes phone calls in best voice, minimal whining, almost no threats used, listens to some very poor choices of hold on music, eventually celebrates successful appointment schedules)

• Autumn:

MRI 1 and 2, blood tests 1 - 25. 

Expert B: Nah, nothing here, you are good. Whatever the cause of your symptoms, it's not from what I see here. Surgery is definitely not required.

Me: Yippieh, thanks, can I hug you? Sorry, no, covid, I understand.

• Winter
  

Expert C: OK, so this looks all OK - oopps what a minute, what's this here . . .

Life goes on, as we all well know. I am still in limbo, waiting for more results. Good days and every so often not so good days. But I am spending lots of time in some very impressive waiting rooms, furniture wise, and also, some good art work but occasionally disappointingly repetitive. 

Cycling in the freezing cold wind along the river helps to offset it all. Also reading. Mostly, however, watching Scandinavian thrillers online. Hiding from what will come next.

Our happiness is deep-rooted and real; while our despair is shallow-rooted and unreal, born of delusion and ignorance. We suffer because we overlook the fact that we are all right.

D. E. Harding