Late this morning while we were cleaning up the breakfast stuff from the patio, R asked me why I was crying and I touched my face and yes, surprise, he was right. For a moment I was at a loss and then it hit me. I miss my child so badly, I said and then it was over, weird as it was. It is not as if she has suddenly vanished. I mean, she's been living far away for the best part of the last 15 years but we talk several times a week and as R says, she never shuts up, doesn't she.
Now I feel old. Actually, I am old. And ill. And a bit miserable. But other than that, it was a beautiful morning, clear skies, low humidity, bees and butterflies and birds, all the pleasant Sunday noises and so on. The extreme heat is supposedly going to hit us by tomorrow.
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| these beauties are flowering at last |
So let's see. I've been sitting in a doctor's waiting room three, four, five times in recent weeks? I forget. Every visit was an example of careful attention, I have no complaints other than that I had to accept that, yes, this, these last couple of weeks of exhaustion and inflammations here and there and everywhere was a flare up and yes, steroids were called for. And people, cortisone is a miracle drug. If only it would not have all the side effects. The deal was for five days at high dosage and on day four, I was jubilant, no other word for it. Despite the stomach aches and the racing heart beat and the sleepless nights and the mood swings. Hence the tears, I think, but as of today I am coming down to normal grumpy me and keeping fingers crossed etc.
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| grapes ripening one month earlier than in recent years |
When I am visibly unwell, English speaking people usually ask, what's wrong with you? And immediately, I could get all defensive and wish I could reply that there is nothing wrong with me, that - only - something went wrong with my immune system but that's it.
I don't. I am polite and assume they didn't mean it, that social stigmatisation and - watch out: new terminology - ableism doesn't exist in my circle of friends.
(Ableism is defined as the discrimination of and social prejudice against people with disabilities, based on the belief that able-bodied people are superior. It is, at its core, rooted in the assumption that disabled people require fixing and, very importantly, defines people by their disability.)
The German terminology is somewhat different. Whether doctor or colleague, the question is: was fehlt dir? What are you missing/lacking? I feel looked after when I hear this. I do.
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| the covid patch gone mad |
I know, believe me, that there are more important things in life than health. Of course, well-being is easier to achieve when there is no disease to worry about. To assume that health is the most important thing in life - this is an attitude only healthy people can afford. And I know that too well, I used to be one of them.
When you end up with a chronic illness, you figure it out, you must understand, eventually, that not life itself, but the conditions under which life takes shape are changed.
Or as one medical expert along the way told me ages ago, paraphrasing the words of Viktor Frankl: When you are faced with situations out of your control, you need to adapt to those circumstances. You need to find meaning in that situation. That is, to find what you can learn from it, and discover ways to carry you through.
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| apricot and cherry season, best of all |
When I experience a flare up, I am lost at the very end of a seesaw, in the middle of which I try to balance most of the time. On the one side, the world of the healthy, with all the joys, banalities, tasks and adversities that life contains - all of which way out of reach. On the other side, the world of the sick, which is not necessarily darker overall, but in many ways very different. To achieve balance again and again and to figure out where I am right now, that is the skill - one that I will never fully master.
Things can only get better.
9 comments:
And, at least for me with multiple chronics, I need to remember to trust that rest is ok, to let go of my desire to prove I'm ok. Rest is what I have the most trouble with at least now.
I miss my daughter too but I'm guessing the steroids helped the tears flow along. I worry about my daughter and the rest of her life with flare ups and remissions but I have no control over it either. With my own depression I try my best to keep everything in balance but that often tips over too. It's endless this searching for balance and homeostasis which becomes even harder as I age.
I like the german question better too, what are you missing/lacking? I think I will steal this and make use of it with my own patients and family.
Sending hugs.
One thing about your chronic illness - can't say whether it's an advantage, a disadvantage or a matter that deserves much more thought on my part - is you write about it. I long since discarded the romantic clichés that attach themselves to the act of writing; they seem to be the stock-in-trade of those who don't write as I recognise the verb, who merely record or who repeat themselves and others. What one may say with some certainty is that worthwhile writing is the result of an urge. It has to be. Writing is hard work; chances are if it doesn't conform to Faulkner's Nobel Prize definition:
to create out of the materials of the human spirit something which did not exist before
it risks not being writing.
Actually it's those last five words that ensure writing is hard work. After all, the words we use have all been used before. As with the syntactical structures. Often the shape of the sentences. We don't get it right all the time, the odds are against us. But so long as we are able to tell ourselves - with a modicum of conviction - that we think what we are constructing has at least the aspiration to be unique, then OK.
Your illness - its symptoms, its diagnoses, nostrums, etc - represents a finite resource. What varies is the way you experience these subjects and write about them. I'm not even suggesting that writing about being ill is any kind of comfort; best not to be emotional. Better to think of it as a technical proposition; a better way of replacing a cam-belt.
Enough. Keep on writing. If you fail then, in Beckett's memorable exhortation, next time fail better.
Beautiful plumeria, different variety than my common pink. And your covid patch! All that grew without you throwing out seeds? It also is beautiful. I haven't bought any cherries this year. I think I bought some last year but they weren't all that good. anyway, glad to 'see' you. You also are beautiful.
I am surprised that anyone would ever ask, "What's wrong with you?" I like to think that, "How are you?" or "Are you okay?" is the right way to go. Maybe even, "Anything I can do to help?" I do hope things get better and that you will be able to see your much-loved and missed daughter. Please take care there, Sabine. Thinking of you and sending much love and good wishes from our hearts to yours.
37paddington:
When you write about the incursions of autoimmune illness, I feel seen, as if I am indeed part of the world and not crouched in one small corner of it. There are things I dream of doing that I will never do, a pilgrimage in Spain for one thing. The heart dreams. The body decides. The spirit can still fly.
I understand this in part as the mother of a severely disabled young woman. Whenever I hear a pregnant woman say that she's "praying for a healthy baby," that that is all she wants, I wince.
"Whether doctor or colleague, the question is: was fehlt dir?"
"I miss my child so badly ..."
Always moved by the lasting relationship you have with R. The life you share. The daughter you raised so well together.
What I hear in your writing about your illness is that your life is rich with meaning -- joy and beauty and sorrow -- side by side with the illness. If it were possible, I would invite you to walk and talk with me at Big Rock Garden, up the street from where I live. I would show you the little Japanese Coral Bark maple tree, along with all the other Japanese maples. Maybe we would see a Bald Eagle. I know you would appreciate it. Whenever I am not feeling well, I think of you and how you find balance in your life, that it is not easy. Sending love always.
As always, I appreciate your honesty and thoughtfulness in writing about your life. I was a hospice volunteer for a brief period in my younger days. We were taught to ask the cared-for not "How are you feeling?" but "How are you feeling today?" That one additional word changed everything. It was a revelation to me, that. As for cherries, well they are in the grocery stores here right now and I can't get enough of them.
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