I had a phone appointment with Julie, the nurse-practitioner at the rheumatology clinic this week. She wanted to see how things were going.
I’d switched meds yet again a few weeks back and the old ones wore off before the new ones kicked in, triggering a frantic call for help and a trip to London for cortisone shots. Fourteen needles later, I went home with the hope that this would tide me over until the new meds could do their stuff.
It lasted six days, during which I was so dizzy I was afraid to get out of bed.
I had a blood test on Monday and my numbers are pretty good. I’m not anemic and my inflammation marker is well down.
And then I told her that I’m still in a lot of pain and we regrouped.
“You’re probably never going to be pain free,” she told me. “I think the best we can hope for is to get your pain down to manageable levels while keeping you free of anemia.”
That’s a hell of a thing to hear on a Tuesday morning while lying in bed in your underpants.
But I’ve come far enough on this particular path that it sounded OK to me. It sounded like a good goal.
I won’t be getting better. I won’t ever be pain free. I won’t be going back to work at the bakery. Or anywhere else that requires me to put on shoes and stick to a schedule.
So. Now. How shall I live?
I’ve done this before. This isn’t the first time life has said nope. I went through the same process when I had to face up to never having children. And yes, it IS unfair that I have to do it again and yes, I WILL cry about it. You get to grieve your losses.
Back then, I sat down and thought, “Why do I want to be a mum?” And it was mostly about having love to give and wanting to look after people and I was able to transfer that love and care onto family and friends.
This time, the question won’t be, “Why do I want to be healthy?” The only reasonable answer to that is, “Well, d’uh!”
Instead, I’m asking, “How do I live this life?” The one that was presented to me over the phone earlier this week.
The thing I realize about having hope and giving it up is that when you have hope, you’re waiting. Waiting to get pregnant, waiting to get better or for your ship to come in or the right partner to come along or whatever it is you hope will happen.
When I give up the hope, I become much more present, focusing on making what I can of what really is, not what I hope will be.
I’ve spent the rest of this week puttering around, tidying and working on small projects as my strength allows, having heartfelt discussions with Alan and making tentative plans for a Substack newsletter (would you subscribe?) I even went for a walk with Alan for the first time in months.
Because – because I wanted to and because I’m no longer trying to spare my energy for the great healing that was never going to happen. I can expend my energy, day by day, on the things that seem most important in the moment.
Somehow, accepting that I will always be IN pain is helping me to learn to live WITH pain. Of course, the CBD gummies and cannabis cream my friend Leanne sold me and the over-the-counter stuff Julie recommends are really helping with that. I’ll basically be off my tits most of the time for the rest of my life and I’m fine with that.
It’s possible that I don’t fully understand hope, that I’ve been doing it wrong my whole life. Maybe accepting what is while leaving the tiniest door open for the possibility of something better is how hope is expertly done. I mean, if ever there is a cure, I will gladly take it. But I’m not going to waste any more time waiting for it.
Exactly, what level of pain can I work through today is a frustrating way to measure an activity when being a creative soul. It (speaking from experience) sucks, my motto is well can’t do that ,what else? If you ever need to talk/vent please call , I sort of get the pain situation as I am in pain all the time. Loveya lots Catherine
Thanks so much, Catherine. I love that we have better things to talk about whenever we get together.
I wish you continued courage as you seek joy in your day despite the pain or the prognosis. You’ve been so brave for a long time, Barb. It takes courage to hope, and courage to accept, and courage to make the most of what is. I will en-courage you! <3 And I'm really glad the CBD products are helping, too.
Thanks Heidi. Big love to you!
Radical Acceptance – my drug of choice these days. Thank you for sharing your beautiful soul. Much love and big squeezy hugs.
Radical Acceptance. I like that. And I LOVE big squeezy hugs!
Barb – thank you as always for your beautiful writing and your open heart. I love this notion of hope as you’ve described it. It’s clear you are surrounded by love and in no small measure. I hope you and Alan have the best of Christmases. And I will definitely subscribe to your Substack ❤️
Thanks so much, Elizabeth!
That makes so much sense Barb. While the
first reaction might be to be sad for you I actually
feel glad that you came to this realization . For all
of us that are waiting thank you.
Thank you Laura.
Yes to substack and yay for walks and (oddly) congratulations on a new relationship with hope and choosing the now. We miss you and Alan both.