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:

img_1865

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.

40 thoughts on “JANUARY 28– The Answer, from Caitlin

  1. Peggy

    As always, your blog lifts others up. The wisdom you share through your own words and Caitlin’s amazes me in so many ways. My heartfelt sympathies on the cold, unfeeling response you received from the therapist. I was stunned too. Your response said it all – I’m so sorry you were so poorly treated. How differently you could have felt with just a few kind words recognizing your terrible loss. XO

    Reply
  2. Trish

    I have been following your blog since early December when a mutual friend posted info about Caitlin’s plight. I was so sad to see she didn’t make it. She seemed truly lovely and extraordinary. I collected money for CF when I was a child and have donated as an adult. CF always touched me because it affects children and breathing and I’ve been a severe asthmatic from an early age so I can relate to how uncomfortable testy lungs can be. I think you have a lot of profound things to say and should keep thinking and writing them and can I note what a beautiful creative nurturing life you gave your daughter? I believe in the benefits of therapy and when I have a bad experience my therapist says “that person is your teacher, what are they teaching you about yourself?” From what little I know about you, I would advise that you seek a therapist who has a spiritual component to their method. That therapist’s words were not empathic but she did tell you in so many words–“I am not the right person keep looking.” Grief sucks–be patient and good to yourself like your daughter would want you to.

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  3. mjroseauthor

    My heart aches for you! Maryanne I know a top therapist in NYC who has connections all over the east coast and if you need a grief therapist recommendation for Boston please do not hesitate to ask. Please.

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  4. Stephanie Senerchia

    How heartbreaking to hear about that callous, unfeeling email response you received. And also to hear how frightened Caitlin was, how many additional issues she had over the course of her short life. I’m no therapist or medical, but if ever you wish to unload anything I can deal with a lot. I also don’t require explanation, I get most of it.
    Your anger is certainly understandable. I don’t know what to say except that I think of you often for whatever reason. Sending love and healing vibes.
    It’s your grief, and it’s going to take time and yet always be there in some form. The past few months, even years, have been so heavy and difficult. You earned the right to set the tone of how you choose to ‘heal’.

    Hugs and strength to you, and to Nick and Andrew. Caitlin climbed a mountain every day and you did too. xoxo

    Reply
  5. Terry Waite

    Caitlin was truly insightful with such an amazing, real-life reflection on courage. She was certainly loaded with courage which probably made it possible (where others couldn’t) to climb that mountain every day. As always thanks for continung to share her thoughts. They stir great admiration and empathy too.

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  6. JoEllen McGranahan

    Profound statement from Andrew, she climbed a mountain every day. I read a book on grief after my mother died, addressing the unkind and stupid things people will tell you. You can either choose to ignore them or reply with something which could help them the next time they meet someone suffering incredible loss. Good for you in helping that person grow. I don’t think I would have been so civilized. Blessings and prayers, and here’s to Caitlin.

    Reply
  7. Pati Garino

    Oh my heart ❤️ hurts for you and Nick…….Sad that was the response you received…..when you reach out it was a major step and they didn’t see that….I know this may sound a bit off but Maryanne if you ever need just someone to hear you I am here….❤️

    Reply
  8. Jane McCafferty

    Incredibly moving inspiring post. The Saint is instructing us and enlightening us and humbling us all. Tears of sorrow mingle with tears of amazed gratitude. So sorry it was such a hard week. I knew such a week was coming and dreaded it for you. Grief is easier in the beginning because it is so unreal that the loved one is gone and I think the soul stays close for a while. And then as you say the finality breaks your heart again and again and again. But with Caitlin as your guide you will come shining through in good time.

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  9. kimberly Sliney

    I am so deeply sorry that the therapist at MGH treated you so terribly. My left eye has a conjunctival flap covering it and the left side of my face is somewhat paralyzed and throughout my life I have had medical professionals make awful comments about me and how I look.Some even thought I was not smart because of the way I looked. It makes me mad and sad at times but like Caitlin would say, it is to get on with it. My problems were very different of course but I kept many feelings to myself about going to the hospital and having procedures down. Some people are just like that I guess Caitlin was obviously very wise and I am always happy to hear about her. You touch me very much when you talk about Caitlin and also about her absence which you feel more now.. Every night, I sleep with a tiny yellow teddy bear. The bear was bought for my daughter before she was born. When my grandmother had Alzheimer’s it became her’s and then I got in back when she died. When my wonderful dad was getting hospice care, he was given the little bear and it sat right near him on the window sill. I sleep with it every night now and it feels comforting to have him close by protecting me.Grief is something one deals with in his own was and there are no rules. Perhaps sleeping with the teddy bear sounds silly in some ways but it makes me feel better. You will always talk about Caitlin and people will always want to hear more. I just stated Sarum and like it very much although it probably will take me forever to read. Thinking of you and Nick and hope to meet you some day.

    Kim

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  10. Alan

    Hi Maryanne what you are going through is so difficult but take strength from Caitlin’s own writing and stay strong just like she would want you to. It also shows you are at another stage of the grieving stage and a healthy one too; ANGER and let it all out as you need to. I feel you have been Caitlin’s rock for years so there is a huge load of feelings built up inside you which needs to be released and your own road to recovery is your priority right now. Be patient with yourself and most of all be kind to yourself. I really hope you will get the right person to go to for therapy which is why maybe this particular person was not the one, maybe. Caitlin was the person she was with your encouragement and support and believe me she is supporting you now from a higher platform. Love to both you and Nicky and if you ever feel like a break away to Italy just tell us when you are coming as we are here for you as always. Mary xxxxx.

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  11. Elizabeth Kemper French

    Once again, Caitlin’s words make my day–my world–a different and better place. After seeing what is happening in our country–all the fear and hate–her words about courage and hope resonate even louder. Yes, be angry. That response was awful, and you may get more of those. You have a lot of other things to be angry about as well, and if that was the trigger, so be it. Let it out. And keep looking–you’ll find the right person. I know you will. Please keep writing–it saves all of us.

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  12. Jessica Keener

    Courage. Thank you. I am also glad you expressed your anger. These people need to know how heartless and careless an email can be and how hurtful. Yes. You will let it go, but your response was so en pointe. Sending love. Love. Love.

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  13. Susan Needleman

    Maryanne……WOW! That last paragraph really blew me away! Caitlin was so wise beyond her years and such an amazing writer. I plan to copy that last paragraph and carry it around in my wallet and print and frame it with credit to Caitlin of course. Something to look back on when the going gets tough. Caitlin has a lot to teach through her writings. Please continue to write this blog and include Caitlin’s writings.

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  14. mohanley5

    While nothing will ever completely fill the tremendous void of losing beautiful Cailtin O’Hara, every thing you are doing begins to fill another space with peace, love, hope and healing (and hopefully you begin to approach a balance between them). I feel it when I read the responses to your posts–your honesty, pain, wisdom, love–poured in to your writing about Caitlin, is touching all of us. We are all learning from it! My God, she was extraordinary–courageous and intelligent and genuinely kind!

    I had a terrible time after losing my parents in the past few years (and they were in their mid-eighties, lived a full, good life). One way I got myself out of a deep, sad hole was to make note every night what time the sun would rise the next morning. I’d have my camera bag ready, battery charged, and a plan where I was hoping to catch the sun as it first peeked over the horizon…my alarm would go off, and I’d roll out of bed, bolt to my car, and zoom to the spot for my photo shoot, adrenaline zipping through me that I wouldn’t have had otherwise. Mostly I’d go some place along the MA. coast, but sometimes to a vantage point where I could see how the sun reflected on the Boston skyline. My father loved taking those kind of shots. Once he told me, “Don’t just watch the sunrise or set, but turn around and look at what the light is doing to everything.”
    (Wise words, wouldn’t you agree? A metaphor of Caitlin’s life, for sure!)

    My parents were both artists (met at Vesper George School of Art, Boston 1950), and after raising 11 kids, finally pursued their talents–Mum a water colorist, Dad, photography. I was never artistic–at all! But this thing happened…I could feel my parents around me, like a random tap on my shoulder, a light breeze out of nowhere, or a bird in flight drawing my attention to turn around and look at what the sunlight was doing behind me.Those were my very best shots. I see things through their eyes now that I would have missed before. And here it is 2017 and I’m up and at it everyday, heart a little lighter, trying to see things more from their prospective. It has been my therapy. (I still have “those days” but they are different)…
    I hope your writing is beginning to fill a new space of healing…tiny drops in a big well, I’m sure. Sending huge amounts of loving light to you, Nick, Andrew and all of Caitlin’s special people. (Sorry for rambling!)
    xo
    Mo

    Reply
  15. Lisa

    From the moment I first read of Caitlin and began following this blog, I have been moved and inspired. Such a profound young woman – wise beyond her years. So much light to offer this strange, strange world full of darkness. There are days that your words and hers lift my spirit and take me away from the mundane tasks of living that she so deeply desired and deserved to have. Each of us has some random space to fill and consume on this earth – but not all choose to make the most of that time. Such sadness and despair in the world – but Caitlin, with all of her trials, tribulations and monumental daily struggles chose to have courage and climb.

    Several years ago, I lost my father. We were very close and it left a gaping hole in my heart when he passed. It took several months for that grief to set in as I had been his primary caregiver for eight months of hospitalization. Similar to you – I took a therapeutic trip when the grief all but consumed me. However, I went to the New England coast – from Maine to New York and most places in between. Boston was one of my favorite stops on that trip. He sent me dozens of signs and still does to this day. I cherish each and every one.

    Embrace your grief… and your tears… and your anger…… and your moments of peace….. and all your good memories. She was a blessing. I always say that when grief hurts so much, it is actually a positive thing, because you know you had someone that wonderful to love. ❤

    Reply

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