Learning to breathe
Sunday January 24th 2010, 8:18 pm
Filed under: Crohn's flare,Friends,Life

When I was diagnosed with lupus, my immediate reaction was, “What’s that?”

I joined the local support group to try to gain perspective from those who had already lived with this and who had experience dealing with it.  One of the things I heard there was story after story of the crazy things various members had done while whacked out on high-dose steroids: one woman described how she cringed at the thought of going back to her doctor’s office where she had shown up at an early hour in her bathrobe and slippers, pounding on the man’s door, screaming, completely paranoid and out of it.

Her doctor had shown up to work, come onto this scene, and told her worriedly, I think we need to decrease your dose. (Uh, yeah.)

And then she had had to live with that etched into the minds of all the onlookers who did not know that she was not, of herself, in any way like that and with her own vivid memory that she had, nevertheless, on those drugs, done that.

And so I utterly refused to take steroids.

Ten years later, I now had Crohn’s too.  I told my new gastroenterologist that I had always said I would never take prednisone unless it were a matter of life or death.  (I didn’t say out loud the feeling, and maybe even then… What if I did something totally crazy from the med and then died of the disease anyway? What memories would I leave my family then?)

But he knew.  Dr. R. held me steadily in his eyes and told me gently, “I think it’s time to give it a try.” And added, “I think you’ll be okay.”

In the moment he said that I felt that he was right. He was.

And that is how after all that anxiety and all that time, I at long last came to learn that my mental health stayed stable on those drugs.

But also that, as it turned out, I was the one-in-a-million autoimmune patient for whom they utterly did not work.

I know what the depth of pain is in being handed an incurable medical diagnosis that takes away every plan you ever had for your life.  (Give me sunlight! Give me the great outdoors!) But I was an adult, with enough experience to know I could adjust to the new situation and cope, and with four small children dependent on me to help keep me going.

And my brain was intact.

For me it was a choice and it was also pure good luck.

The homecoming prince. The good-looking guy. The nice kid. The big brother everybody looked up to and wanted to be around, who liked to laugh and who was so good with little kids.  Suddenly trying not only to cope with a major new diagnosis and with finding out that his entire future as he’d pictured it no longer existed, but now having no functioning mind with which to learn and adjust. He was out of it. He simply did not and physically could not comprehend.

At church today, people were searching for ways to rally around the family. I, for whom writing is like breathing, offered this: write down memories of our Brian.  The Eagle Scout. The ready helper.  That beautiful smile.  Remember out loud for his family the best of who he was and what he did. There would be so many stories; give them to his parents, his grandparents, his little brothers and sisters, his aunts and uncles and his cousins.

Tell the good.

Because that is who he truly was.

16 Comments so far
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As always, Alison, your loving spirit carries those around you through a very difficult time. I am praying for you all, and most especially for the family of that dear boy. I cannot imagine their pain.

Comment by Pegi 01.24.10 @ 8:38 pm

I, too, was on prednisone for a while. All the dire side effects were explained to me, and the doctor explained how the dosage would be reduced gradually until I was off it. Fortunately, I never suffered any of the side effects, but that IS a dangerous drug.

“Tell the good,” you say. Absolutely!

Fun –

Experts are like the bottom half of a double boiler.  They let off a lot of steam, but have no idea what’s cooking.

Comment by Don Meyer 01.24.10 @ 8:59 pm

It is hard. Somehow we do not plan on having a chronic illness. Something that does not get better in the usual way. I know I did not plan for it. I too can not take any meds. Anyway I am also afraid of “going off my head”. Sometimes, when I fall down, or can not breath, or have to say “Sorry, I can not do this anymore…” I am very angry. Thankfully, most of the times I can remember that this too is a gift from G-d, and that it is given to me out of love. This helps a lot.

Comment by Henya 01.25.10 @ 12:08 am

Memories are balm for bad days. I hope they take your advice.

Comment by Channon 01.25.10 @ 7:04 am

And the good will in time be what remains, and the pain and horror of the ending will fade, slowly, reluctantly, but it will dim beneath the light that was his life.
My love to those who loved him.

Comment by Diana Troldahl 01.25.10 @ 7:13 am

How very well put! For those who fear aging (even if only to turn 40), this is a good reminder that experience can bring tools and wisdom.

Adding my virtual arms to the ones wanting to give a comforting hugs to all of you dealing with this situation.

I pray you have many memories that will bring a smile to your eyes, lips and heart.

Comment by Suzanne in Mtl 01.25.10 @ 7:49 am

Absolutely. That is the important thing to remember. And for the family to know – all the positives he did, all the good things he did for other people.

Comment by Margo Lynn 01.25.10 @ 11:20 am

Praying hard for all concerned. I’m so sorry.

Comment by Karen 01.25.10 @ 11:24 am

So, so very sorry for the pain that young man was living with. Blessing be upon him and his family. And upon you for bringing forward this story – disease is disease whether physical, spiritual, or mental.

Comment by Joan 01.25.10 @ 12:08 pm

Absolutely, write notes, remembrances, stories. The notes that I received with stories about Robbie were the ones that I studied the closest. If it related an anecdote that I hadn’t heard before, it was gold.

It helps with some of the pain.

Comment by Deb in CT 01.25.10 @ 1:44 pm

You are a warm kind person and remembering this boy and putting those memories to paper is a wonderful idea.
My heart goes out to them to lose a loved one to no longer be able to talk with them or give them a hug is hard I pray for peace for all.((((Hugging You)))))) Darcy

Comment by Darcy 01.25.10 @ 1:57 pm

Maybe also suggest the church organize a community service day in his honor? A day for everyone to pull together, and do good in Brian’s memory.

Comment by Serena 01.25.10 @ 3:23 pm

My personal experience with prednisone is that, in most cases, it is worth the risk…..in some cases it is quite simply a miracle.

My heart goes out to the family of that poor boy. I cannot imagine…

Comment by Cindy in Happy Valley 01.26.10 @ 2:38 pm

You are so right. When I was in high school we were to write about the family member we looked up to the most. I wrote about my great aunt. The one that was pulled out of school in the second grade to work in a mill standing on a crate thru the week & cooking & cleaning for families on the weekends. When she passed the following year the story I had written from her memories brought a lot of comfort to her daughters. Reading the words helps you to focus on the memories instead of the raw pain. I pray those memories offer them great comfort.

Comment by TripletMom 01.26.10 @ 3:32 pm

Yes, tell the good. There are some illnesses that can speak so loudly that it’s fairly easy to forget the true nature of the not-ill person.

Comment by RobinM 01.27.10 @ 1:38 pm

Wonderful post, Alison. I totally understand what you mean when you say writing is like breathing. I often tell my friends, “I can’t NOT write”.

Your loving spirit shines through loud and clear; I am blessed to know you through your blog.

Comment by Mokihana 01.27.10 @ 8:47 pm

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