Saying goodbye is never easy. Neither is putting down baggage.

standard March 6, 2015 3 responses

On Monday, my father died.

It wasn’t a surprise, and yet it was.

We sat there, in the room next to the one in which, two years ago, he took his first breaths with the replacement lungs that were supposed to give him a new lease on life and watched him take his last breaths. All of us holding our own, leaving him all of the oxygen in the room if he wanted it.

I’ve known my father was dying since he was diagnosed with emphysema when I was 20, almost 20 years ago, and yet, as I counted the seconds between his last breaths, I truly felt deep in my bones, that I wasn’t ready to let go, not ready to say goodbye.

He was always happiest on a boat.

He was always happiest on a boat.

If it’s this hard when you have that much time to get used to the idea, how is it possible to survive when death is a surprise?

Emphysema is a bitch of a disease. It slowly robs you of your breath, making it harder and harder to live. For a man like my father it was a tragedy.

He loved food. He loved wine. He loved sailing and traveling. He was always the best dressed, the most dapper wherever we went. Sometimes I swear he was born in the wrong time. He would have dominated the 20’s.

At a friend's wedding.

At a friend’s wedding.

As he slowly lost the ability to breathe without support, the sphere in which he lived grew smaller and smaller. In the end, before his transplant in 2012, his life was mostly limited to his apartment, where he lived quite happily, if rather breathlessly, with his wife, his basset hound, their two cats, and his computer.

You’d think that, pretty much always knowing exactly where he was and what he was doing, would have meant that I’d take full advantage of the time he had left.

But I didn’t.

Because I’m an idiot. An idiot with baggage. Baggage I wasn’t able to let go of in time.

Beach hugs are the best.

Beach hugs are the best.

I posted to Facebook that I was rushing to get to Toronto before it was too late and messages of love started to pour in from around the globe. Friends from my childhood reaching out to share a story about my dad, a favorite memory, a small anecdote, or just a note to say how much they’d admired him and liked him.

And I wept. Because their tributes were beautiful and because so many of my memories of my dad are tempered by the anger I felt for him for years. Anger I held on to for much too long. Anger I nursed and coddled.

He was a fantastic, brilliant, charming man, but he wasn’t an easy man to love, not when you were his daughter.

Gotta wear fancy hats when you garden.

Gotta wear fancy hats when you garden.

I made my peace with my dad, with his shortcomings as a father, shortly after his transplant, on a day when we learned he had contracted a hospital infection and might be losing his colon and his life.

I panicked that day. Realized there was so much I hadn’t said. Realized there was so much I regretted. Realized it was almost too late.

I made my peace that day, but even though he lived, I didn’t embrace the fact that he was still here.

There is so much I wish I would have done differently. And yet I know that there was no way I could have really done anything differently.

In what we affectionately called his Santa period.

In what we affectionately called his Santa period.

Life is hard. And it’s complicated. And it’s so rarely as neat and clean as a tv script.

On TV I would have made my peace and we would have skipped (metaphorically) into the future, arm in arm, happy and easy with each other.

In reality, I made my peace, but never put down my baggage.

I believed my whole life that my dad held me to a higher standard. That he expected more of me than I could ever deliver. I always felt that I was letting him down, just a bit, just enough. And I resented him so badly for making me feel like I could never quite measure up to what he had expected from me.

But on my end I also held him to a higher standard. And he never quite measured up to what I naively expected of him.

He always appreciated a good funny.

He always appreciated a good funny.

We never fully allowed ourselves to see each other, the way we really were, flaws and all. We were just too much alike, mirror images of each other, reflecting it all too clearly, to let down our guard and just be.

He was an amazing, complex individual. He was smart, and clever. He was passionate about a million things and knowledgeable about a million more.

When not on a boat, he was pretty happy in a kitchen, with a glass of wine.

When not on a boat, he was pretty happy in a kitchen, with a glass of wine.

And I wish, more than anything, that I could sit down to a great meal with him, pour us both a glass of wine, and set down my baggage so I could really and truly appreciate him for the person he was.

He was a man who loved a good story, who relished playing the part he’d written for himself in that story. I spent too many years trying to pull him out of the story and into my reality when I really should have just joined in in his.

I wish I could see that smile again.

I wish I could see that smile again.

 

Goodnight Susan; rest in peace

standard February 6, 2012 10 responses

At a conference a few summers ago, in the middle of the chaos that are all blogger events, I was invited up to Susan’s room to chat. Despite brutal chemo treatments she was there, scheduled to speak and determined to be there no matter what.

When I got to her room I found her in bed, sitting up, eyes bright with excitement. She, Leticia, another one of their roommates, and I chatted for a while, randomly having an animated discussion about Judaism. After a bit the conversation turned to the reason I’d been invited up to their room.

They wanted my professional help.

Since Tiny Prints had just started doing personalized greeting cards, the girls were hopeful that they’d be interested in working with the American Cancer Society to create special cards based on the designs already being used as eCards on the More Birthdays site.

I had my doubts about how that project would go. I had my doubts about how far my personal influence would take it. But I looked into Susan’s shining hopeful face, and I didn’t have the heart to quash her dreams.

There she was, sitting in bed, too tired to go be part of the conference hoopla, and still, she was thinking about others.

That was Susan. 

When she got cancer she started campaigning to inform and educate others about Inflammatory Breast Cancer.  Then she started a site aimed at offering support and a voice to moms fighting cancer.

When her lymphedema got bad, she worked to support Cricket’s Answer an organization that helps women fighting cancer get wigs, lymphedema sleeves, and other things they need day to day during their fight, and yet can’t always afford. She also ardently supported LympheDIVAS, the company that makes pretty lymphedema sleeves so the women wearing them can keep feeling beautiful.

That was Susan. 

Last Summer, between treatments she came to Asheville, NC to accept a Bloganthropy award and to speak, once again, to a room packed with bloggers.

I’m so grateful that she was able to come despite being so tired. I got to hug her that weekend — gently of course so as to not hurt her — but at least I got to hug her.

Little did I know it would be the last time I saw her.

A few days ago, knowing full well that she was in hospice and that her days were numbered, I had a dream about Susan. I had arrived at some event, and she was there, sitting at a table, looking her usual radiant, beautiful self. “You’re here!” I stammered. But inside I thought “You look so serene, so peaceful!”

I woke up, convinced that she had passed away, and was relieved to hear that she had not.

Today Susan finally did pass away. I’m typing this through my tears. This morning the world lost an amazing soul when she took her last breath.

I’m so sad that I’ll never hug her again. I’m so sad that I’ll never hear another one of her fabulous ideas for how to make things better for others. I’m so sad for her husband and her two little boys. And I’m so sad for those of you who never got to meet her or got to be touched by her infectious desire to do good.

I’m not sad that she’s no longer in pain.

Rest in peace Susan. We will continue the work you started. You will live on in all of our hearts and all of our efforts. 

After that bedroom meeting with Susan and Leticia I went home and sat down with the business development team at Tiny Prints. “This is really important to me and it’s really important to my friend,” I told them. And miracle of all miracles… they listened. It took many, many months of planning and discussion, but today Susan’s American Cancer Society cards can be found on the Tiny Prints site. May they hopefully lead to more birthdays for more moms.

Friday Flashback: Some days it’s all about perspective

standard January 30, 2010 Leave a response

Friday Flashback is all about bringing to light some of my favorite posts from my archives to breathe new life into them. I was going to repost this because I’m having more asthma med issues and I desperately need to place an order to the Canadian pharmacy. But then I saw this one and I realized that this weekend is the first anniversary of Tuesday’s death. This is for her. And for me. Because once again I needed the perspective reminder. This was originally posted in January 09

Some Days it’s All About Perspective

I woke up to an email from an editor saying that the publication for which I was writing my first print article was going on an extended hiatus. For a year or so. She said this in reply to an email sent by me the night before, letting her know that I was on track for my Monday deadline. I salvaged the situation as best as possible, but to say that I was disappointed would be the understatement of the year.

I checked the rest of my email and found out that a dear friend’s new baby is terribly colicky. She’s going insane what with the no sleep and non stop screaming. Right then my disappointment seemed petty.

I checked some more email and learned that somewhere in the blogosphere two parents brought home their 2 year old daughter so they could watch her die. Her cancer has become so aggressive treatment isn’t an option. What’s a missed writing opportunity in comparison to the death of a child?

I hugged my children close and took them to school and daycare. Then I sat down to salvage my day. I sent emails and worked on some projects. Then I answered a call from my husband. He was delirious, hardly making any sense. He sounded like he was crying and laughing at the same time. He’d thought he was better from his flu and had gone to work. He was on his way back home, freaked out by the incessant chills.

I dropped everything, rushed to pick C up from school so I could take her to daycare early. I hurried home to see what was wrong with M. I found him shaking in bed, burning up, lethargic, completely out of sorts. One frantic phone call later to his sister, our internist, and we were in the car headed to see her. Shortly after that we were headed to a nearby radiology office, script for lung x-rays in hand. We didn’t learn until later that he didn’t have pneumonia, just a terrible case of the flu.

I took him home and put him to bed, I went out to get his meds, and then I sat on the couch to try to get a tiny bit of work done before going to collect the girls. Unfortunately, I was too riled up from my pharmacy trip to get anything worthwhile done.

It was a long and very frustrating day. It was filled with disappointment, sadness, fear, and frustration. The kids sensed all this and were extra challenging tonight. In fact, it’s 11pm and for some reason Little L won’t sleep. Instead she just keeps crying and fussing.

But I just learned that that little girl passed away today. So I’m going to take my tear stained face and go cuddle gratefully in bed with my grumpy daughter and sick husband, because even though I had a truly terrible day, I know it could have been so very much worse.

Prayers for Anissa – a hopefully someday friend

standard November 18, 2009 5 responses

Part of my new job at Tiny Prints involves Internet research. I spend a lot of my time blog hopping, discovering new blogs, visiting old favorites, checking out friends of those favorites, and then moving on to the next.

Today I discovered a blog I’d never seen before. It was funny, well written, and had compelling posts. It was a family blog, like many of the ones I see daily. I logged all the details in the spreadsheet I’m compiling and moved on to the next one.

I had no clue that the blogger was well known and loved by many of my own blogging and social media friends.

I had no idea that less than an hour later I’d not only know more about her than I ever expected to know, but that I would have created a special Tweetdeck* search window dedicated to her.

While I was reading her blog for the first time, getting to know her family and their scary story, Anissa Mayhew was having a stroke and being rushed to the hospital.

Watching Twitter rally around one of their own is both an inspiring and devastating thing to see. Inspiring because it’s breathtaking to see so many people rush to help someone they only know virtually, devastating because it’s usually for a horrific reason. The death of a child, the illness of a parent, a tragic accident.

There was no reason Anissa and I hadn’t crossed paths before. She’s active on Twitter in my circles. According to Facebook we have almost 100 friends in common. She’s a blogger, like me. But there are hundreds of thousands of us. I can’t know them all, they can’t all know me.

Tomorrow I would have emailed her for professional reasons and most likely we would have become friends or at the very least Twitter buddies.

Instead, tonight I’m going to bed with a heavy heart, thinking of this mother lying in her hospital bed, her fate hanging in the balance. I’m thinking of her children, the youngest of whom only just won her battle against cancer. I’m thinking of her husband, for whom it must be so painful to be in a hospital, who must be going through hell tonight.

The five of them should be together.Tomorrow she should be laughing with a friend or playing with her kids when my email arrives unnoticed in her inbox. She should reply, follow me on Twitter, strike up a conversation here or there. That’s how it was supposed to be.

Really, I just wish that’s how I’d gotten to know her.

She fought so hard to keep cancer from taking her daughter. She deserved a bit of peace and quiet and normal. I hope against hope that she can still get it. And that I can get to know her all over again the regular way.

*Tweetdeck is a service that allows me to keep up with my Twitter friends without having to use the Twitter web interface. I can create search windows that track just one keyword if I want to be able to pick out those specific tweets from the regular timeline.