28 June 2015

People tell me: do that, ask your doctor for that, insist on test xyz now. Don't wait, demand this new treatment. Do you have any idea how complicated this all is? How difficult it is some days to call and ask for an appointment. Should I let it get worse? Is this bad enough? 

Some days, I just want to move on, never see another waiting room, ever again. I could write a book on waiting room decorations, it would end on a tragic note. No more carefully rehearsed questions that fail to express what I really wanted to explain anyway. I gave up on lists some time ago, it makes you look like a hypochondriac nerd with issues. 

Some days, I just want to walk in there and look across the inevitable desk and roar: I feel ill, just do something. Whatever. Just let me lie over there on that stretcher and get on with it.

No more cheerful thank yous and smiles all round because I want to remain in the good books  when the shit hits the fan. I want to be the good patient, the one who is on the ball while at the same time understands the constraints of time and money, who can come up with short precise descriptions and not asks too much. In my ideal world, every person with a chronic illness deserves a personal assistant who organises appointments, tests, insurances, dinner dates and holidays, incl. cancellations and sick certs. I would settle for a robot.

And some days I want to test fate, just let things happen, just wait and see. What would happen if I pretend to be stuck somewhere without doctors and labs and pharmacies and all those shiny diagnostic tools. (After last week's x-ray, the young intern said, please remember to record it in your x-ray data card. Oh sweetie, I almost replied, nice try but I've lost track long ago.)
But whatever it is - panic, fear, worry or simply the fact that I love being alive just that bit too much - I cannot do that. 

And then there's this thought: I know I can look within and watch the stuff coming up - the restlessness, anxiety, impatience, fear and tears, the lot - just watch it come up and don't get involved. I know by now how it rises, how it eventually passes away. I know it requires patience, self discipline, sometimes distraction, sometimes a cup of valerian tea, a walk through the garden at night. I know that sometimes it takes ages and sometimes it can be just a matter of sleeping through it. And yes, I know that in the end I will be where I started: a woman with a serious chronic illness.  But what else is there? This is it, my gorgeous life. And I mean it.

This day 33 years ago, we got married.


Ms. Moon said...

I am in awe of you. Every day. Thank you.

am said...

Happy 33rd anniversary to you and your prince on the white horse. A lasting and true love! Sweet to be reminded of the story of that day in Ireland.

Thank you for John Martin singing "Couldn't love you more" and the power of your love of being alive.

Anonymous said...

Happy anniversary to you and R. I wish I could send good health and easy days through the internet, through the mail, in my wishes to you-- and that you would receive them and they would work like the best heartfelt elixirs I have intended.

37paddington said...

Happy anniversary to you and your prince!

This is an extraordinary piece of writing, a window onto what it is truly like to have a chronic illness. I think I have never before seen it so clearly as I do in your words. Thank you. You are so brave. I wish you as much healing as love allows. I wish you everything.


Rouchswalwe said...

I'm raising a glass in honour of you! Happy Anniversary!

Ellena said...

Hoch sollt ihr beide Leben!