Tag Archives: courage

APRIL 6–Master of the Suck-It-Up Smile

A courageous ray of light..

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Caitlin’s cousin Melissa is a sweet and noble soul, and her write-up for the “Xtreme Hike” (30 miles in one day) that she is training for in honor of Caitlin, to raise $$ for the Cystic Fibrosis Foundation, both breaks my heart and uplifts it at once.

Caitlin was ‘a courageous ray of light,’ she writes, and this photo, from Melissa’s wedding day, reminds me of just how true that was.

The wedding had been planned for months. We were hosting the ceremony at our house, under the beautiful willow tree by our river. Caitlin would be a bridesmaid.

But just before the wedding, Caitlin got sick. She had to start one of her 3-week courses of IV antibiotics. Besides being sick enough to need 3 weeks of IV meds, taking them always knocked her flat. Typically, there was a 1-hour infusion of one heavy-duty antibiotic every 8 hours, plus a 4pm-ish dose of another one—- usually the worst one—- the one that would really make the nausea kick in and make her lie down and say, ‘Suddenly I feel awful!’ As if she was surprised. Even though it happened every day.

‘Suddenly’ had become a joke, a word we used whenever we wanted to indicate we weren’t feeling well during a time when of course we weren’t feeling well.

But this particular June, she worried. She didn’t want to let Melissa down, but she also didn’t know how she would ever make it through the day: the morning preparations that would be taking place in our house, the ceremony itself with all that standing, the 4pm infusion and then the hours of the reception.

But make it through the day she did. And aside from the telltale bandage that always covered her IV lines, she never let on that she felt like anything other than the supportive bridesmaid and loving cousin that she was. Because she didn’t want any attention on herself, and especially didn’t want Melissa to worry about her, or feel bad, in any way, on her wedding day.

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At Melissa’s wedding ceremony

Sweet Melissa (yep, named after the Allman Brothers song by my hippie-ish brother Billy, her dad), is grateful for the support she’s received for this hike. She’s psyched to do it, and she’s training hard. It happens in June.

Caitlin had really hoped to participate in these kinds of fundraisers after transplant. She had hoped to do a lot of things. Hike. Run again. Climb stairs.

But let’s not forget that she did get to do a lot of things, like live beyond birth, that a CF kid 50 or 100 or many more years ago would never have been able to do, thanks to all the research that so quickly benefited her after her diagnosis, and which continues to benefit other sweet and wonderful beings.

Life expectancy, in general—-well, here you go:

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Seize the day, my friends

It will be fascinating to see what the future holds. We are still so primitive in so many ways.

–M

JANUARY 28– The Answer, from Caitlin

When Caitlin was a small, small person and had frequent hospitalizations and weeks of home courses of IVs and then a long, serious surgery at age 11, my mother would always marvel at her. “She’s so stoic,” she would say.

But it wasn’t like Caitlin didn’t have fears or anxiety. It was just that she pretty much kept all of that to herself.

Once, when she was about 3, I heard her in her bed talking to herself. “Always have to cough, don’t know why.”

And one day I found this little drawing:

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Like the frog in the slowly-boiling water, you get used to dealing with what you have to deal with, and it becomes the norm. I’ve been looking through old journals, and as I read through them, I kind of shudder. We always lived with held breath and a cracking heart. From the year she was 11 and spent months in the hospital, after surgery to remove part of her left lung:

I was just looking out the window and saw her clench her fists, then run up and down the yard. She’s trying to make herself better.

Last week, on Caitlin’s Boston bedside table, which was usually stuffed with toppling-over stacks of books, I was surprised to find only two items: one of Dr. Brian Weiss‘s soul/reincarnation books, and a little health journal she sporadically kept. In 2012, that year that I wrote was so great the other day, she had written:

Waiting on bloodwork and doctor’s call. Stressed. Scared. I don’t know if having another disease is something I can handle. So much time thinking about myself. Feel depleted. So much time just trying to care for myself that I have no energy left to really truly do something outside of me. Wish I could just forget about myself and throw myself into something meaningful but the mundane daily aspects of health keeps me tethered to my stupid problems.

Caitlin had cystic fibrosis, but by the end, she also had severe pulmonary hypertension, CFRD (diabetes), ocular migraines that put her at higher risk for stroke, blocked sinuses, and constant, painful total body aches that required round-the-clock doses of Tylenol. I’m sure I’m forgetting something, but the point is, all of these conditions required care. At her service in December, Andrew pointed out that every single day, Caitlin climbed a mountain. Every day involved so much more effort than any regular person can truly imagine.

This past week has been, for me, the hardest yet, the finality of her absence more fully real. It didn’t help that on Monday, I reached out to an MGH therapist who was supposedly outstanding—knew CF, transplant, ECMO, etc., someone who would understand the trauma of Caitlin’s life and last weeks without a lot of explaining by me. I waited for a reply, for a lifeline. On Tuesday, I received this email:

Thank you for your phone message. Unfortunately, I don’t have availability to see people for weekly therapy in my cystic fibrosis clinic at MGH given the limited time that I am there. Do you need to stay within your insurance network? If so, I can ask around in our department to see whether someone with experience dealing with illness and grief may have time.

We happened to be in Caitlin’s apartment  when I received that email and I was livid and hysterical and couldn’t stop sobbing all night long. All night I thought: in the morning I am going post this callous person’s name on my blog then march down to MGH and accost her, in person!

I obviously needed to unleash some anger.

I sent a restrained reply instead:

I left you a voice mail explaining that my daughter died after being on ECMO.
I am stunned by the lack of empathy in your response.

 

Then I let it go. I have to let a lot of things go. Caitlin would be the first to say so.

She was such wise counsel to so many of us. After my inward rant, in that little black health record, I also found this:

___________________

September 12, 2012

Feel desperately hopeful now that Obama will win. Biden’s speech tonight about his grandmother and courage.

Courage. That word means it all to me.

When I feel myself flailing, grasping, panicking with pain or hurt, I get a notion in my head, always, and remember that there is courage. Courage is the answer. Because courage doesn’t negate the problem, it exists within the problem. And when you realize the answer lies in taking in the problem and living in spite of it, with full awareness of it, you feel a new option and a new sense of hope and life.