Waiting for a Miracle

I'm a slow, silent, stubborn healer

It's been a little more than four weeks since I had what I hope will be my last medical procedure before the transplant, and it taught me about how I heal: slowly, silently and stubbornly.

Slow. Doctors told me the recovery would take a few days, maybe a week, but I was unable to work at all for two weeks, and able to work a limited amount for two weeks after that. Only now am I returning to normal energy levels, and even that's with greater fatigue. Maybe previous surgeries have slowed down my body's resiliency or maybe it's my lack of a spleen or maybe it's just that every body has its own rhythms. But if it takes the average person a day to heal, it'll take me two. I know that now.

Silent. I admire people who can talk publicly through painful periods of physical and/or emotional recovery. I'm just not one of them. Talking doesn't energize or motivate me, it exhausts me. I'm an introvert and that may have something to do with my tendency to shut out the outside world when I'm unwell and direct all my energy inward. But I've learned how difficult this is for people who want to hear me, see my face, be directly reassured that I'm going to be OK. I know now that I need to find a voice in sickness that carries far enough to reach friends and family without weakening me.

Stubborn. I'm a very stubborn person. This drives my healing and probably delays it, too. Because even though I'm grateful for offers of help, I resist insistent suggestions that someone else may know better than I do what's best for me (unless it's a doctor). No doubt, I miss out on some valuable advice. And yet, other than Gary, no one knows what I've been through or how I make decisions about what I can eat, when I can drive or work. My stubborness is blessing and curse and I'm glad there are people who can help me see when it's hurting me rather than helping.

After four weeks, I am feeling better, at last. Not great, but I can pass for a healthy person. And I'm grateful for that.

The 9 things I forgot about pain

Last Thursday I had several hepatic adenomas embolized in a "minor" procedure that has left me severely uncomfortable ever since. It has also reminded me of nine things I forgot about pain:

Pain is all-encompassing. When I'm physically in pain, nothing else matters. I can't think, I can't respond, I can't love. I can't even be distracted. I can sleep and wait.

Pain seems never-ending. Even though intellectually I know it will not last forever, it seems like it will never stop.

Pain is exhausting. The physical and emotional wear and tear of pain is cumulative. So, even if I feel better by day 5, feeling pain is so much more demoralizing the longer it lasts, and I have fewer reserves to face it because of what's come before.

One step better, another step worse. It isn't just that for every improvement there can be a later reversal, it's that for every symptom that improves there can be a new one to replace it.

Pain is terrifying. It can wax and wane unpredictably, making you wonder what worked and what hurt. It can be intense or mild, making you wonder which it will be next. It can seem random, making you wonder, what does it mean, how serious or unusual is it, how can I make it stop?

Pain is selfish. In addition to the physical discomfort, I feel guilty for being totally consumed by pain. I'm no help to anyone, especially the people who are taking care of me.

Pain is intensely personal. I can explain how I feel but no one else can experience it exactly as I do. My body responds differently to procedures and treatments because of its unique history. What may leave someone else minimally affected can debilitate me and vice versa.

The treatment can be as painful as the disease. To minimize the effects of post-embolization syndrome (pain, fever, vomiting, nausea, and the inability to eat), the doctor prescribed me oxycodone, which has these potential side effects: headache, nausea, sleeplessness, vomiting, weakness. Sometimes it's very difficult to know what discomfort is being caused by recovery and what discomfort is being caused by attempts to speed the recovery.

Pain creates helplessness. Because I can do so little for myself when I'm in pain, I often feel completely helpless.

Today, I will break that cycle. I will take action by cutting back on (or cutting out) the oxycodone, which does not seem to be helping. I'll see if that allows me to rest more, heave less and build up some strength. And I will remind myself, this too shall pass.

Obama eulogizes Sen. Ted Kennedy: 'We Cannot Know for Certain How Long We Have'

Senator Ted Kennedy delivered eulogies at the funerals of his brother Bobby, his sister-in-law Jacqueline Kennedy Onassis, and his nephew John F. Kennedy Jr. 

Each included a memorable phrase that spoke to the departed's importance to America.

Of Bobby, he said: "My brother need not be idealized, or enlarged in death beyond what he was in life, to be remembered simply as a good and decent man, who saw wrong and tried to right it, saw suffering and tried to heal it, saw war and tried to stop it."

Of Jackie, he said: "...during those four endless days in 1963, she held us together as a family and a country. In large part because of her, we could grieve and then go on. She lifted us up, and in the doubt and darkness, she gave her fellow citizens back their pride as Americans."

Of JFK Jr., he said: "We dared to think, in that other Irish phrase, that this John Kennedy would live to comb gray hair, with his beloved Carolyn by his side. But like his father, he had every gift but length of years."

Today, Sen. Kennedy was eulogized by his family and honored by his friends.

President Obama delivered the final eulogy at Ted Kennedy's funeral, a personal and touching speech. I was especially moved by this part:

"We cannot know for certain how long we have here. We cannot foresee the trials or misfortunes that will test us along the way. We cannot know God's plan for us.

"What we can do is to live out our lives as best we can with purpose, and love, and joy. We can use each day to show those who are closest to us how much we care about them, and treat others with the kindness and respect that we wish for ourselves. We can learn from our mistakes and grow from our failures. And we can strive at all costs to make a better world, so that someday, if we are blessed with the chance to look back on our time here, we can know that we spent it well; that we made a difference; that our fleeting presence had a lasting impact on the lives of other human beings."

What should I pack?

When I received the e-mail yesterday morning from my transplant coordinator that said, "Keep a bag packed, you are officially a priority on our list!," my first thought was, "But I'm not ready."

I'll never be ready, I know, but I do want to be a little more prepared.

I have a few books stockpiled: Frank Bruni's new memoir "Born Round," Yasmina Reza's "The God of Carnage," and I've ordered "Speed Shrinking" by Susan Shapiro. (I also have books and puzzles for Colter.)

I have a pair of super soft pink fleece socks that Gary & Colter gave me last hospitalization.

And I have a small psychedelic stuffed lion that I bought in Sarasota last month and tucked away for my recovery.

What else should I pack?

Fear is like a dementor, work is like a patronus

In less than a week, I will be in the hospital. I expect it'll be just for a night, and that the scheduled procedure will be effective and cause only minor discomfort with a quick recovery. I expect that, but I fear worse. Even though odds are nothing will go wrong, something can always go wrong.

Fortunately, I'm so fully occupied at work that I can't even think about my health. I'm grateful for a meaningful project (a book about the Kennedy family as seen through a half-century of newspaper pages) that pushes me to act creatively, collaboratively and quickly. I'm grateful to spend time with caring people who make me think and make me laugh. And I'm grateful that the urgency of deadlines pushes my fear to the deepest shadows of my mind, where it threatens like a dementor but does not materialize.