What it’s like to be me

I follow Maria Shriver’s Sunday Paper, the I’ve Been Thinking, weekly posts. I follow Maria not because I know her, but because on a weekly basis, she seems to hit the target; she “nails it” with everything from family to community to world news. Maria tackles relevant subjects, and I find I am inspired by her thoughts. Today, Maria’s post is titled What’s It Like To Be You Right Now?

The title gave me pause, because, like Maria, I’ve been thinking.

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It seems it has been a lifetime, but it was just ten weeks ago that our world crashed. My husband was diagnosed on October 10 with brain cancer, specifically glioblastoma multiforme. It cannot be cured.

When something like this happens, nothing seems real. I felt like I walked slower during those firsts horrible days, as if I was trying to move through water. I felt as if the world suddenly closed in on us, that there wasn’t sufficient air to breathe. In the wee hours, upon waking and remembering, the reality is crushing; it is that same time–every single day–the dawning that the nightmare is inescapable.

People are interesting, and I mean that in the most respectful* way. Most folks want to be helpful, some ask what it is that we or I need. I know their hearts are in the right place.

But the truth is, most people don’t fully understand. Through no fault of their own, they can’t and they don’t. Phrases like, “I totally get it,” or “I understand,” or “I know” seem inappropriate and even abrasive. Probably the very worst offering is, “If there is anything I can do, please let me know.” A very close second is total absence.  People “don’t know what to say” so they stay away completely. This is the worst hurt imaginable.

Since this needs an explanation, I’m writing right now, today.

Again, people mean well, and my intent is not to hurt. Our friends have pure hearts, otherwise they wouldn’t be our friends. However, resources and education are sorely lacking with respect to how to treat people with terminal cancer. Sadly, most of us don’t know–how can we?–unless or until it happens to us. We need guidance.

Without offending others, I hope to make a little headway with this, right here, right now. Below are a few examples of recent interactions, how they can be avoided, and how we all can truly help a hurting friend.

1. “If there is anything I can do, please let me know.” In times of crises, folks are hurting and scared-out-of-their-minds. They CANNOT articulate what they need. Period. Solution: Just do it. Don’t ask. Show up. Be there. Examples: Leave a plate of cookies on the porch. Come over and mow the lawn. Bring a few groceries–most people still need milk, eggs, and tp–just make it happen. Tell me you are our ride to the next appointment. Leave a bottle of wine on the porch. Text me with hearts and warm wishes. Brighten our day with a bouquet of flowers. I can’t begin to tell you how much your initiative matters. Remember, we are unable to reach out.
2. When someone says, “Whatever you need, I’ll make it happen” but when asked, I hear excuses. I asked a friend to handle something but heard, “I’ve never done that before” and “I’ve got a lot going on right now.” I kept silent, but my thought was, “We’ve never done brain cancer before (and you offered, and I really need your help).” Help was declined after several assertions to me that “anything you need, I will make it happen.” Solution: Your honesty about your willingness and ability to help matters most. It goes a very long way.
3. Please don’t ask, “How are you doing?” Of course you want to know and we know you mean well–besides, we need people we can talk with–but before you ask, please pause and consider the nature of this question. You must be able to imagine how we are doing. When someone has terminal cancer, it isn’t possible to look at the world the way you do. Our joy has been momentarily dashed, and our hope is elusive. In our household, time is of the essence. Read that again. Solution: Send well-wishes that we have a great day.
4. Avoid sending photos of people we don’t know, i.e. your grandchildren. Avoid sending stories of their cute antics. These things do not make us smile. They do not brighten our day because, as cute as they may be to you, it simply isn’t possible for us to find joy in people we don’t know, have never met, or never see. Solution: Wish us a very good day.
5. When you can think of nothing to say so you stay away, the hurt we feel is immeasurable. Friends whom we thought would be there, even for well wishes, are not there; folks have disappeared. I understand it is easier to stay away and watch from afar, to read news and updates through email and social media posts. As time marches and as our reality changes, however, writing email and social media posts to update people has become harder and harder. I’ve stopped making social media posts about our life (in fact, I deactivated my FB account). I’ve trimmed the email list to immediate family and a handful of close friends. Solution: Please, send well wishes anyway. It means the world for us to hear from you. Right now, we are hurting and we need normal.
6. A long time ago, two people close to me were diagnosed with cancer. I was in this same boat. I know what it feels like to be tongue-tied, and to want to stay away. I offer insight because now, I am on the other side.

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That, Maria, is what it’s like to be me. Each day I wake up and pray that my husband will have a good day, that the medicine and treatments continue to work. Sadly, he was rushed into surgery December 4 due to a hematoma that developed above the previous surgical site. He came through amazingly well. Three major surgeries this year, and he remains the most positive man I’ve ever met. His attitude buoys me.

Through this post, I hope to educate and help those affected by and those in the cancer world lovingly move forward. A painful example of the lack of awareness about brain cancer stems from the plethora of resources and funding for families affected by breast cancer (to name one); resources and help for families affected by glioblastoma and other brain cancers is far less. Sadly, the treatment for glioblastoma hasn’t changed very much in the past 20 years, yet the outcomes are about the same.

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In life, we are challenged with a variety of new experiences. A very good man recently said the following.

“Life is full of adventures. Some are thrust upon us and others we choose. This one wasn’t of our choosing, but I aim to make the best of it. I’m not done.” 

~my husband Bruce

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*There may be friends whom my words offend; that is not my intent. Instead, my hope is to offer insight, to shed some light on those affected by cancer, that we all can move forward with caring and loving behavior towards those we love, towards those who are hurting. Blessings, and thank you for reading. ❤