Monthly Archives: January 2013

From the New York Times Vows Section to Cancer, What Next?

Williams0373The numbers 00000000 popped up on my caller ID, and I knew it was The New York Times. We were standing on top of Whiteside Mountain, North Carolina on our honeymoon. Our wedding announcement had appeared in the Times’ venerable Vows section the day before, which I thought was a hoot since we were not rich, overly successful, or particularly well connected.

“Are you available today to be interviewed for a video story?” the reporter asked. I imagined that their first-choice couple had cancelled.

I looked at my dirt stained hiking boots and regretfully declined. However, if the Times had covered our story, you may have heard something like this.

When I met Robert in August 2003, I was coming out of another bad time. Six months earlier, my dad had another one of his heart attacks; my mom had a near fatal car accident and was in a wheelchair; my brother shattered his ankle in a freak hacky sack accident and needed surgery, and I went home to find the basement covered in vomit and cat shit. Our poor little Hazel had to be put down. I took six weeks of family medical leave to care for them all. Depressed, I was talking about quitting my publishing job in New York, moving back to Pennsylvania, adopting six kittens and taking up quilting when my friends staged an intervention. They posted a dating profile on salon.com.

I’d tried online dating before and had low expectations, but the headline “Fair and Balanced” caught my eye. His name was Robert, and he entertained me with stories of sassy southern relatives and archeological digs in Ireland. We decided to meet at Angel’s Share lounge in the east village for cocktails.

Robert teases me that I was late for our first date. On the way out of the subway, I noticed a street artist’s necklace that reminded me so strongly of my late grandmother that I felt a strange sensation, like she was standing beside me. I hurried to get cash at a nearby ATM so I could buy it.  As I raced to meet Robert, I had a premonition. Had Nana chosen this moment because Robert was going to be important?

It was instant attraction. We discovered many odd coincidences in our stories. Both our fathers were ministers from blue collar backgrounds. Our mothers were both daughters of bank presidents. In the weeks before meeting, we had crisscrossed each other twice, practically brushing sleeves at the Howard Dean rally in Bryant Park and at Marble Collegiate church, where his dad was an associate pastor.

I felt like my world suddenly switched back to color. One typical Saturday shopping in Park Slope, I told him that I felt like we were on vacation. How could normal life be so fun?

We traveled everywhere: Cape Cod, the Berkshires, Vermont, Russia, Finland, Estonia, Ireland, and the Caribbean.

We dated for five years before he proposed on the eve of my 30th birthday. He gave me his great-grandmother’s Edwardian engagement ring, which fit perfectly. We were married a year later, three days shy of what would have been her 100 year wedding anniversary.  We held the service at New York Avenue Presbyterian in Washington, DC where Abraham Lincoln worshipped, where Peter Marshall preached “one nation under God” and where Robert’s maternal grandparents had married during the Second World War. My father walked me down the aisle, beating all medical odds, and turned and performed the ceremony along with Robert’s father.

Our wedding day was one of the shiniest, happiest days of my life.

I remember telling our story to a stranger soon after the wedding. She said, “Damn, you’d better never get divorced. It would be too embarrassing.”

I laughed and thought, “Nothing will ever tear us apart.”

This past summer, a week before Robert’s kidney surgery, we sat on the deck of my grandparents’ lake house wondering if cancer would do exactly that. While I was inside napping, Robert heard a loud buzzing behind his ear. He swatted and turned to see a hummingbird staring him in the eyes. I felt it was Nana reminding me that she was still there watching over us. If she could, I know she would try to protect us from the disease that stole her life.

Please remember to pray for my husband, for successful treatment and healing, for the 30 others in his clinical trial, and that the researchers will find a breakthrough.

Wedding photo courtesy of Aaron Spicer. www.aaronspicer.com

What to Say to Someone Who’s Going Through Hell (Part 2)

Star Jimenez Johnson
By Star Jimenez Johnson

I first met Jen when I shared an apartment with her in Astoria, New York. I moved in on a Saturday & on Sunday night it dumped feet of snow and so we immediately got to know each other. We shared books, cups of tea, traveling stories, and dating advice. I remember when she first met Robert. Her spirit was up and Robert balanced her perfectly. Jen was in love. And more importantly Robert loved her back. To see how their love has grown and their family has blossomed was beautiful to see. Along with you, my heart aches to see Jen and Robert facing their own hell. I pray her hell does not become my own.

I left New York City in 2005 and moved back to Orlando, Florida where I had some friends. I met my own knight, Roger, who was patient, kind, loving, and taught me how to truly love. He could handle my shenanigans and balance me. The best day of my life was the day we were married. Finally I had my ultimate teammate & confidant. My own person to lean on forever. I remember one particular day over that summer where I really felt happy & true joy.

My own hell started on the early morning of August 22, 2008 – the day before our six-month wedding anniversary. A moron travelling on bald tires on wet Florida roads came across the median of a major Orlando highway into the driver’s door of our car. My husband was driving and never regained consciousness. His body was wrecked and his brain swelled so much that it lost all the wrinkles. The space between the two hemispheres of his brain was gone not to mention all his other injuries. And I was left when a shell of man that I loved and needed. Doctors informed me that this was it. The man who had saved me from myself was gone. Six days later the plug was pulled and I was left in hell. At 27 years old, I was a widow.

I heard lots of gems along the road since that day. “Oh you are young, you’ll find love again.” “At least you don’t have kids.” “You are so brave.”

But I could see what they were really thinking: “I am so glad it is not me.”

Many people offered to help me. But it is hard for me to accept help. Not to mention, I had no idea what I really needed. I had no idea how to put into words or actions or requests of what I needed. Here are things I did need and did help.

  1. Keep plans with me. My life had just drastically changed in a matter of less than a week. I needed things that were not going to change suddenly.
  2. I did not have an appetite and ended up losing 30 pounds in about five months. But I still enjoyed having people come over to cook dinner for me and inviting me to their homes.
  3. Be patient with me. Losing my entire daily existence is not something that has a timeline. Grief is not finished in a month, six months, or even a year.
  4. Talk about my person. It helps to know you are thinking about them too. But talk about other stuff too. My mind was always on it. So some distraction was nice but do not ignore it.
  5. If you know a movie, book, or show that I normally watch is going to be too touchy, warn me. I could not watch “PS I Love You” at first and I had episodes of “Grey’s Anatomy” that were a little too much for me. I adored those friends who would call or text to let me know ahead of time. I still have commercials I cannot watch and have not read the “Twilight” books since Roger loved that kind of book.
  6. Do not look at me with pity. I hate that look. It is one of the reasons I don’t tell a lot of people my story. I am not that strong. I just did not have another choice. I had to keep breathing and living like everyone else even when I did not want to.
  7. When I do start dating again, it does not mean I am over it all. It is never over. It scars and does not hurt as bad. But it is still there. Always.
  8. I will cry randomly. I will have meltdowns. Don’t judge me. It may seem stupid and over reacting to you but I cannot control a lot of things around me. Please be patient with me and try to be understanding. My “silliest” meltdown was over a restaurant forgetting my salad and putting bacon on my meal. I went off on the waiter and burst into tears. Poor waiter but some of the “friends” at the table could not forgive me.
  9. I may find something insignificant to control since I cannot control anything else. For me, I started to control my laundry sorting to an obsessive level and recycling. My nickname among friends became “The Recycling Nazi”. Be patient with me. Some of it will fade. Now I am just a recycling enthusiast.
  10. Don’t ask me what I need, find something I need. Come take out my trash. Offer to take my car in for service. Go with me to appointments. Clean my house.

Visit Star Jimenez Johnson’s blog, And you may ask yourself, well, how did I get here? http://www.facebook.com/#!/starswidowblog

What to Say to Someone Who’s Going Through Hell (Part 1)

Nothing feels more socially awkward than going through tough times. It’s hard to admit to myself and the world that some of my wildest nightmares, not my wildest dreams, have been coming true.

It’s disappointing. Who wants to be “That poor family with the sad story?” I don’t.

Contemplating my husband’s cancer makes me feel overwhelmed, vulnerable and strangely shy. I have absolutely no idea what to say to anyone. (Which if you’re one of the folks waiting for me to call or write you back, um, that’s why you haven’t heard from me yet. Sorry.)

Based on my own experience, I’m sure you don’t know what to say to me either. I’ve seen others go through hard times, and I am ashamed to admit that sometimes I’ve let moments, months, years (!) pass by and have said nothing to friends and acquaintances for fear of saying the wrong thing at the wrong time.

Now that I’m going through one of the biggest challenges I’ve ever faced, I would say that I’ve loved hearing from every person who’s thought to reach out to me. There’s no bad time to contact me, as long as you don’t care if I’m extremely slow at responding.

I know there are no magic words. I’ve appreciated receiving simple, heartfelt thoughts like, “I think of you often. I’m praying/sending good vibes, or I want to help if I can.” I’ve enjoyed funny stories, inspirational quotes, and reminders that good things can happen, too.

I think the best thing you can say to someone going through hell is to just say something, even if it feels like it took awhile.

Now, let’s see if I can take my own advice and pick up the phone.

 

Tomorrow I will be posting Part 2, written by a guest blogger—Star Jimenez Johnson, a friend “who’s been there.”

Please remember to continue to pray for my husband, his researchers, and all others who are facing cancer, serious illness and feelings of hopelessness.Thank you.

Don’t Stop Believin’

Don't Stop Believin'!I don’t like to dwell on statistics. Instead, I think about my dad.

Dad died almost two years ago of a heart attack, and I think of him so many times throughout the day, it’s as if he’s still here with me. In 1996, his doctors told him that he had two months to two years to live. This went on for fifteen years! Every doctor’s visit the same: “There’s nothing we can do, maybe another year if you’re lucky.”

At first he felt crushed and depressed, but then he stopped thinking about it. He’d focus on cooking something delicious for dinner. He’d put tea lights all around, polish the furniture and make iced tea. He’d find something funny to watch, call an old friend and tell a joke. He’d go to the store and buy someone a present. For years, he’d call me every month and say, “I just bought you the best birthday present.” He’d have to tell me right away what it was.

Once dad went to the cardiologist. “There’s nothing we can do. This artery is 100% blocked.”

The next time they did a scan, it showed that his heart had spontaneously grown a tiny vein that circumvented the artery. This happens sometimes, but it is rare.

Dad told me this story about one of his particularly bad heart attacks. He said that the EMTs put him into the ambulance. His heart rate was very high. They said “We’re losing him.”

Dad grabbed his hand and said, “Please tell my family how much I love them.”

When he woke up in the hospital, his cardiologist peered down at him and said, “I have no idea why you’re here. There is no medical reason why you should be alive.”

I believe Dad’s secret weapons were prayer and a joyful zest for life. I wish I had the same joie de vivre he did; I am prone to getting scared. But, his story inspires me every day. We are not statistics. We don’t know what the future will bring.

I keep reminding myself, “Don’t Stop Believin!” No one knows what’s on the road ahead.

Happy New Year Cancer!

Happy New Year, friends! I have had a slow couple days at my grandfather’s lake cabin. It’s a wonderful, peaceful time with my husband and daughter.

Starting a new year with cancer in the family is an odd experience. What about New Year’s resolutions? Saying you’re going to lose weight or pay off your credit card suddenly seems so unimportant (and way too easy). I’ve thought a lot about what should be my goal this year, and this is what came to me at 4 a.m. while feeding the baby:

Stop thinking about the future and past.

This New Year’s resolution might be the hardest one of all. Live in the moment. Carpe diem. Savor each second with my husband and daughter. Do every fun thing that comes to us, and it doesn’t have to be big. Light candles. Use the good crystal. Come up with any excuse to get together with friends and family. Go out of the way to laugh or do something nice for others. And take very, very good care of ourselves. (I guess that’s where the treadmill comes in.)

I have been driving myself up a wall thinking about all the things that have gone wrong in 2012, and all the uncertainty ahead. Really, I need to break it down to being grateful for this moment. Why is this so hard to do? Isn’t this moment all any of us have?