Tag Archives: obama

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.

JANUARY 11–Zooming Out w/Caitlin, post-Obama

Here in California, I’ve been waking up way too early—4:30 or so, and now that Nick and I are finally together again, I try to be quiet for his sake. But the sun doesn’t rise till 7, and those dark hours can be terrible. This morning I tried signing onto Facebook, but all the bleak posts about last night’s farewell speech made the day (life) ahead feel particularly despairing.

I was thinking about the fact that Caitlin had had so much meaningful correspondence with others over the past two years. Recorded correspondence. I have little of that, obviously. Our conversations of the past three years–her most contemplative time–were all in real time.

In the dark it’s easy to panic, and that’s what I did. I was seized by this urgent need to scour through her Gmail and find all of her writings until I realized: I can’t just read through her private stuff.

Then, literally then, I got an email from Andrew, a forward of an email from Caitlin this past July where she had linked to an article she admired and talked about her own perspective. With his permission, here it is:

From: Caitlin O’Hara <caitlin.ohara@gmail.com>
Date: July 25, 2016 at 10:20:47 PM EDT
Subject: Zoomed out

This sums up everything I think about the state of the world and life and how I think – only this guy articulately wrote it and has all the facts at his fingertips to back it up. I am only an amateur historian. With all I know cobbled together from years of art history combined with an obsession with organizing time in my head – decades, centuries, eras. The entire thing has always been a visual structure in my head. Some day I will draw it for you. When I picture us now in 2016, I pull back. I always pull back and picture myself in time and in space geographically. It makes me removed enough (like this guy) to ultimately not feel that there is much I can do to change the shifts of the world, but also inspired enough to think – what is my role in this lifetime (whether it’s my only lifetime or one of many, doesn’t matter) to survive this time?  

I am fascinated by this kind of thing. By the ebbs and flows of history. By patterns and by people and all of the stuff he talks about. I guess it’s harder for many people to think in that zoomed out way. For me – it was a mechanism I cultivated as a way to deal with being sick … I’d zoom out, see my own smallness, realize it’s all been done before and will be done again, and I could relax, and enjoy my life now.   Like why I like graveyards. And reading about the holocaust. I like reading and thinking about the ebbs and flows of human suffering, living, dying, living again…

History Tells Us What May Happen Next

I don’t think it matters if this guy is “right” about brexit or whatever the defining moment will prove to be…or even if this time really will end up being a catastrophic time (ahead of us). I kind of feel it might be. But I think his way of thinking is a good one that I relate to a lot. And wish more people did. But then, we wouldn’t have the same world ….

Love my Andy.

I’m going to renew my Irish passport. In case we have to skip out of here. ❤️✌🏼️

Sent from my iPhone

And here are some random things we sent to each other:

 

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From Patry Francis’s Instagram xo