Twenty years
Sunday May 30th 2010, 11:32 pm
Filed under: Life

There was a visitor in church today. I didn’t recognize him, he didn’t remember me, but he really took me back.

For his 40th birthday he and his wife had decided to go do a road trip and visit where he’d served as a Mormon missionary as a young man, and our ward was a place he’d remembered fondly.

For twenty years.

Twenty years ago last month I was diagnosed with SLE, ie, lupus. (The Crohn’s add-on with SLE cells came nine years after that.)

My kids were 2, 4, 6, and 8, and I had no idea if I would live to see them grow up.  My mom’s cousin had died of lupus a week before her wedding date.  It did not help when I read outdated literature that described some of my complications and stated baldly that five years was the outside of such a one’s life expectancy.

I had severe rheumatoid-type arthritis the first six months, to the point I had to use plastic utensils to eat.  My ear doctor, to whom I will forever be grateful, figured out when I had a horrific day of complete, utter stone-cold deafness in reaction to naproxen that my progressive hearing loss had been an allergic reaction to aspirin all along–thank goodness it came back to what it had been when the med wore off.

So no NSAIDs.  No pain meds other than tylenol, and even that was out later when I went on chemo for the Crohn’s.  I was severely allergic to Plaquenil.  I utterly refused for years, until it was a matter of life and death, to try potentially mind-altering steroids–let me at least keep control of my brain, if I can’t control anything else! (And then my brain handled them just fine but they had not the slightest effect on my disease.)

I was on my own with this.  Well, heck, I got through childbirth, now we were just going to have to have lifebirth.  I invested in Corelle and set the stoneware aside.  I began to learn how to give up the outdoor life–while wondering what on earth effect it would have on my kids!

I started to learn to cope.  I’m still learning to cope.

I have no idea how we got through it. I have no idea how we did it. But look at us now; I think we did okay. Actually, to be honest: I think this helped me grow up far more than I ever could have without it, shaped me into a more compassionate human being, shaped my children into being more compassionate human beings, and I am intensely grateful for the experience.

I’m also unspeakably grateful that right now, it’s in the closest thing to remission I have had in all these twenty years.

19 Comments so far
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“I invested in Corelle and set the stoneware aside.”

I think you just coined a new coping phrase. I can hear people saying “time to get out the Corelle” when things get tough now, full of every intention to continue dining even if not on the china.

It is lovely that the dish life is serving up right now tastes so good, eh?

Comment by twinsetellen 05.31.10 @ 2:07 am

I don’t know what to say that would not be an inadequate response. But I wanted you to know that I read your post, and that I will be thinking about it today and pondering how my own experiences have shaped my life and my character. Thank you!

Comment by Lynn 05.31.10 @ 4:19 am

Alison, your post is so moving… thank you for sharing your feelings. It’s amazing how folks with chronic health issues grow to be so appreciative of life, isn’t it?

I’m always thinking of you, and love to read your thoughts…


Comment by Amanda 05.31.10 @ 4:47 am

You really know how to fight the good fight, with grace, compassion and joy. Here’s to twenty more, and then another…

Comment by Channon 05.31.10 @ 6:35 am

Ahh – someone *else* who feels that all of this physical crap has helped them grow. I feel that way all the time – not that I’m the “compleat grown-up” – that’ll probably never happen 🙂

But I’m a wholer and much happier person that I was before the cancer. I know that, on the face of it, that statement doesn’t seem to make sense, but I also know you understand what I mean.

Comment by Robbyn 05.31.10 @ 7:38 am

Looking back is good for perspective, and character, too. You done good!

Comment by Sherry in Idaho 05.31.10 @ 7:39 am

anything I would say here would seem totally inadequate — I feel totally embarrassed that I whine about ANYTHING when I read what you have accomplished and survived through

what an inspiration

Comment by Bev 05.31.10 @ 7:41 am

Here’s to 20 more!

Comment by Michelle 05.31.10 @ 7:43 am

I agree with Michelle: here’s to 20 more!

May your compassion contaminate more and more people as you go. 🙂

Comment by Suzanne in Montreal 05.31.10 @ 7:55 am

“I think we did okay. ” What an understatement. Twenty years with such a demanding teacher, and you select “okay” to describe how you’ve coped. After reading your posts though, I couldn’t imagine you saying anything less than humble or taking anything for granted, even remission. Your appreciation shines through this and everything I’ve read by you! Some plum jam for the lady who so graciously takes the bitter with the sweet, and shares her hard-earned lessons with us.

Comment by LynnM 05.31.10 @ 8:10 am

I write this not for it to be about me, but to let you know that you have company.
In 1970, an incarnation or two ago, my first dh died of cancer, shortly after our dd’s turned five and seven. We quickly learned that we could not make definite plans for tomorrow, not even to grocery shop.
During the 3 years he was ill, we learned to savor each day. So if he felt ok and we felt like going to the beach, we went (sometimes in parkas and mittens). If it snowed and he felt up to it, we went sledding. We had impromptu picnics with a tablecloth on the living room floor in front of the fireplace if it was pouring. If dinner wasn’t done and we were all hungry, we ate dessert first. When he died, we had no “if only-ies.”
I remarried about 5 years later, and when our dd was born my unadmitted goal (even to myself) was to have a dd whose daddy was alive when she was 7 and older.
My autoimmune journey began when she was 7. My world suddenly got a lot smaller, and constant changes make for readjustments to what is “normal.” Most importantly, I learned to find joy it little bits and many places. I love my life.
After 25 years, we still use Corelle LOL ! (And here I thought I had come up with that idea all by myself LOL!) It isn’t pretty, but I can lift it in and out of the dishwasher and cabinet by myself. Not having to ask for help in every little thing is prettier for all of us!
In recent years my dh and I have both had adventures with cancer, reminding us to do what we can when we can, including being more patient, gentle, and kinder with all beings.
Many hugs on this Memorial Day,
Carol in MA

Comment by Carol Telsey 05.31.10 @ 8:33 am

I cannot agree more with the previous commenters! I do not know anyone more understanding or compassionate than you.

I could have felt sorry for myself nearly 25 years ago when I was released from the rehab center. At that point I was just happy to be alive. Then when Amalie and I started going to the swim center (where we met you) I saw others in much worse shape than I, so I figured that relatively speaking, I was pretty lucky. My condition has deteriorated slowly over the years, but I am still far better off than others I have met. So I thank God daily for what I have, including friends like you.

Humor helps –

This one from deep in the archives of my brain:

It seems that Senator Robert Sprong of Virginia and Hiram Fong of Hawaii introduced a resolution in Congress to have all the church bells in Hong Kong ring out when the American table tennis team arrived there after their tour of mainland China. But the senate did not pass the
Sprong Fong,
Hong Kong,
Ping Pong,
Ding, Dong bell

Comment by Don Meyer 05.31.10 @ 8:36 am

Just wanted to say how happy your last sentence made me feel…I am still smiling. 🙂

Comment by Angie A. 05.31.10 @ 9:23 am

Dearest Alison–I’m so glad this is a good period for you. Long may it last–forever would be ideal! You’re very brave and an inspiration.

Comment by Karen 05.31.10 @ 4:10 pm


Your writing touched me so much. I am so glad you’re here with us to tell your story and inspire others. Thank you for being you.


Comment by Mary 05.31.10 @ 4:44 pm

When I have no words, at least I have plenty of hugs.

Comment by Diana Troldahl 05.31.10 @ 7:53 pm

You are an inspiration, Alison.

Comment by Joansie 06.01.10 @ 10:01 am

I’m so glad you are doing well. Rock (and knit) on!

Comment by Julie 06.01.10 @ 2:41 pm

As always, I am so thankful for you.

Comment by karin maag-tanchak 06.02.10 @ 5:59 am

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