Guest post today by my lovely wife Holly. She wrote this last fall. I am posting it now in honor of her wonderful mother who died 28 years ago today. You’ll get the connection in time…
Last week I had my first mammogram. The next day, I received a call. “There is an asymmetry on your pictures. We need to call you back for another mammogram. This is very common and does not mean that there is necessarily anything wrong…” I am 46. My dear mother was 47 when she was diagnosed with breast cancer and died at 50. I was 18 when she died. This makes me high risk. Even higher because my mother was so young. The “reassuring patter,” which the radiology technicians spouted ad nauseum, three times in the course of this one initial call, was only irritating after the first reiteration. “Lets get on with it! I need facts ASAP!” I thought to myself. I hate thrillers. I will tell you now, my second pictures were beautifully clear. I am fine.
The call came late Friday afternoon. They set me up for their earliest call back appointment, the next Thursday. When I got off the phone, Walter convinced me that it was worth pushing for an earlier slot to avoid a hell week of worry. I called the hospital. No go. Walter then went to bat for me, my knight in shining armor, and called our family physician. Our doctor told Walter that the extra couple of days would not affect my health, even if the news was bad. Walter explained that, at this point, it was my mental health which concerned him. An hour later, our doctor called back and let us know that I had an appointment for Monday at noon. (Many thanks, Dr Jensen!) For a weekend we waited and my mind did a brief dance with death.
I did not give myself great odds. So how was I going to deal with this??? My mother lived 2 years from diagnosis to death and she fought the fight. Radical mastectomy, chemo, radiation, the works. The process was all too clear to me. Okay. Two years. I would make the most of them. Did I want to change anything I was doing? Nothing. In fact, in the past year I have come to feel that I have finally found my calling. To be a partner, a mother, a homeschooling parent and a pig farmer. What a combination! :) Who’d have thunk. It is a life that fits me well. My soul is content. I would only fine tune the balance of things a bit. Maybe be more regular about getting to contra dances. Be sure to keep up doing music with the kids. I have learned to focus not on teaching them to play music, but on passing on the coolest songs I know. Learning to play an instrument is a happy side effect. I would definitely be attending Quaker Meeting for Worship more regularly. I love my Meeting and Meeting for Worship, but I often put life happenings in front of attending. This particular “life happening” would certainly make spiritual support and health a high priority. It seemed rather ironic. Here I was, finally hitting my stride, fully immersed in my calling and now it would end. Had I completed what I was meant to do?!?
On the one hand, if I was only to live 50 years, like my mother, I couldn’t complain. I often refer to myself as the lucky lady. I have a partner who loves me intensely, has a nuclear furnace for a body (to balance my icicle skin) and has spent 20 years holding my hand as he breaks through my plethora of rigid boxes.
Walter – My nuclear furnace
Before marrying Walter, I thought I was an open minded, accepting sort of soul. HA! Join ranks with a renaissance man, who is also a rather eccentric genius with a quirky sense of humor and a passion for self sufficiency, efficiency and beauty… Watch out! I had to learn to bite my tongue when I was tempted to say “impossible”, “we can’t”, “we shouldn’t”, or simply “Walter!” (in my best “how could you” tone.) Poor Walter. He makes the impossible happen.
Will, Ben & Hope – 3 of the most awesome people I know
My children are 3 of the most awesome human beings I’ve ever met. My close friends are few, but their kindness, love and wisdom could fill a black hole. And I live on one of the beautiful spots on earth. There are more spectacular places and other spots just as beautiful, but this land can certainly hold it’s own. I stop several times a day, in the midst of outdoor tasks, just to take it in. No, I can’t complain.
On the other hand… The thought of not being there for my family was intensely painful. How would I handle this dying thing? The “treatment” process? My mother spoke of the treatment being worse then the disease. How could I be there for my family when I wasn’t there? How could I assure they would be loved?
I, of course, thought of my mother’s illness and death. I had an idyllic childhood with loving parents. But I realized, years after my mother died, that the lack of discussion about what was happening during her illness was not how I would want to handle the situation. When my parents told me that mom had cancer, the second words out of their mouths were, “don’t talk to anyone about this.” My mother was in the midst of writing a grant for the geriatric psychiatry program which she directed. The fear was that the grant might be denied if it was known that my mother had cancer. My folks also explained that their European culture was one of “don’t talk about bad news.” Maybe that’s how their extended families survived the holocaust. I don’t know. But there it was. I was not to tell friends, teachers, anyone. And I didn’t for those last two years of high school. There were some conversations with my mother. We talked a lot about euthanasia in general. She once asked me how I would feel if she got to the point where she wanted to end her life. And just before I left for college, she told me that she had switched to only palliative care. She said that she regretted that she would not see me graduate from college or get to meet my kids. That was the only reference made to her death. We had this conversation while walking together to her work. She certainly did not seem to be at death’s door, so this was my only indication of how advanced the cancer had become.
I wanted to encourage my kids to talk and ask questions. Walter and I always talk about everything, so that was never a question in my mind. To tell Will, Ben and Hope what I was thinking and feeling so they would know it was okay to talk about what they were thinking and feeling. To let them know it was okay to tell whomever they felt inclined to talk with.
And who do I talk to? Do I tell the world or keep it close to my chest? On the one hand, I hate secrecy. I believe that all the cluttered emotional closets that people keep shut tight are bad news. If people are open about their experiences and feelings it makes the world better. People empathize, gain understanding and learn from one another. Name the evil and it looses some of it’s power. Keep it hidden and it festers, grows, gains strength and becomes an overwhelming darkness. People in our society don’t know how to deal with illness, death and dying because it is all so hush, hush in this culture. But if I tell the world, that affects Walter and the kids, too. Then they have to deal with people broaching the subject and being strange. And maybe they don’t want to deal with that. For that matter, maybe I don’t either…
Speaking of the world knowing, there was going to be the hair loss. No wig for me, thank you. “I know what to put on my Christmas list” I thought, “head scarfs.” (It turns out that Walter was thinking we could make a nice hat for me. Cool.)
Ceramic boxes my mother made & her pencil box
When thinking of gifts for my loved ones, I often think of the things I have which are connected to my mother and are special to me.
I have some ceramic pieces that my mother made including a bust of me that she did when I was in high school. A lion mug she gave me on her last Christmas, a checkbook cover she made in needlepoint and a photo of her.
Needlepoint Check Book Cover
I don’t have a photo of her and me together, but this photo does have a special story. It was sent to us by one of her patients after my mother died. This patient had apparently adored my mother so much that one day, after an appointment, they had asked my mother if she would pose for a photograph. She sheepishly agreed. I love the thought that as she mugged for this photo, she was feeling tickled, honored and a little awkward at this show of admiration from someone under her care.
Photos. Before chemo starts, I would be sure to get nice photos of me with each of my family. Nearby friends, too. Seems a bit egocentric, but I hope it’s not, to have each of my loved ones receive a nice photo of me and them, after my death.
For my kids, through the years, boxes of gifts to be opened. They could actually be opened anytime, whenever they would be most helpful. Marked for their 18th birthday, “Life Lessons” by Elisabeth Kubler-Ross and David Kessler. When expecting their first born, “How to talk so your kids will listen and listen so kids will talk” by Adele Faber and Elaine Mazlish and “What to expect when you are expecting” by Heidi Murkoff and Sharon Mazel. After their little one is born “Soul’s Code” by James Hillman. I thought about “God is a Verb” by David A. Cooper, but I live with a gaggle of atheists, so maybe they would just find that one in my library.
Bust of me made by Mom
For my birthdays, I would ask them to buy themselves a new comic book and/or have ice cream in my honor. (Two of my favorite things.) I don’t know if this is egocentric or helpful. It would seem that establishing a positive “to do” on such anniversaries might be a good thing. Otherwise, it is hard for a person to know how to deal with the day. My mind just wanders with thoughts and remembrances on mom’s birthday and the date of her death. I would hope this might be a comforting tradition. And I like the idea.
I want my kids to know my answer to that eternal question, “What is life all about, anyway?” Love. Not to be loved, you can’t control what comes to you, but to be loving. That’s it. It is not always clear how to be loving. That is where Quaker Meeting comes in for me. I came to Quakers as an adult and want to let my kids find their own way spiritually. I can’t know what will work for them. Being Quaker is “my thing”, not my families’. At meeting for Worship I find guidance on how to deal with life’s challenges in a loving way. I would like to write down for them the experiences from Meeting which most resonated with me and “spoke to my condition.”
Figure by Mom
I always regret that I don’t know more stories about my mother. Her childhood, growing up, school, relationships, everything. My daughter Hope (who is 5) has this wonderful tradition of asking for stories. “Tell me a story about me,” she says. Or about Ben or Will or myself when I was little or me and my brother when we were little…. She picks the topic and away we go. I often have to rack my brain for new events to tell her about, but she always asks for more. So, maybe my family already knows my stories. Probably a bit too well. Yeah, Hope. :)
What do I want to tell Will, Ben and Hope? What to say in my special letter to each? This, I’m sure, is something which would evolve. But some initial thoughts… There is no right or wrong way to grieve. No right or wrong way to feel. A very wise friend once told me “Don’t be afraid of the tears.” And that single sentence carried me through grieving for my miscarriage. I would add, “Don’t be afraid of the laughter.” At the reception after my mother’s funeral, people were asking if there was anything they could bring. Well, we had plenty of food, but would the toilet paper hold out?!? (Great giggles.) And along with talking and eating, people worked on polishing the piano and cleaning up the small piano room which, until recently, had been under construction. You may feel nothing. That’s okay. Don’t worry about it. As it turns out, I did not really go through the bulk of grieving for the loss of my mother until 6 years after her death. I got myself into counseling to deal with job related stresses. Out it came. And at 46, I am not done, but time does mellow the intensity. Be kind and forgiving to yourself and others.
And what to do for Walter? I felt like Hawkeye, of M*A*S*H, in the episode where he is working at the front line. During a lull in wounded coming through, he is inspired (by the thunder of artillery) to write his will. He proceeds to describe what he wants to leave for each of his friends and loved ones. But he is stuck on BJ, his best friend. Just can’t think of anything special enough. I had the same quandary when thinking of Walter. Well I know one thing I would need to do for sure, find Walter a wife. In the midst of the depression he’ll be suffering, I can’t count on him doing it for himself. Want him to have a partner. Good thing I’ve never been the jealous type. Now, where am I gonna find him a wife? Contra dances are a good place to look. (That’s where we met.) Maybe someone who reads his blog. Now that would be a most interesting post. : ) Needs to be someone who is willing to live outside the box. Work hard. Want to be with partner and kids 24/7. Interested in homeschooling. Music and crafts would help. Be a pig farmer. (Gotta be honest folks, this includes dealing with dead animals and that part ain’t pretty.) Love the countryside (city mice need not apply.) Do construction. Contra dancers are a plus…. this could be tough to find.
Fortunately, I don’t have cancer. I came home from the doctor and insisted on a big hug from each child. Did a little jig in the kitchen as my rather amused kids looked on. And then snagged another hug from each. Ben said “I didn’t know you had a spot that was being re-checked.” This brings up another interesting point. We had told our son Will about the re-check, but not Ben (or Hope.) This was not because Will is older. Will has always wanted to be told about the “goings on.” When I had a miscarriage, before Hope was born, a nurse gently admonished me for having told my 11 and 6 year olds of my pregnancy before the end of the higher risk 1st term. So I went home and asked Will, “Next time do you want me to wait before telling you of my pregnancy until the greater risk has past?” “No!” was his emphatic response. “Did you see me react badly when you told me of the miscarriage?” (No.) “I hate not knowing what is going on!” We always let Will know. Ben, on the other hand, is like his mother and will sometimes be absorbed with worry. We avoid having Ben waste his worry, if possible and try to tell him what he needs to know when he needs to know it. They are each different and their souls ask for different methods of handling. There is no one right way.
Feeling so blessed in my life, I can’t complain that it is not longer. But I would deeply regret not knowing my kids’ kids. And the thought that really ripped my heart to tears was not being able to assure that each of my family was loved, always. That’s all I wanted to do and I couldn’t do that dead. Or at least I don’t know if I can do that from whatever is, or isn’t beyond. That was the sharpest point of my pain. I wanted to live for the sole purpose of surrounding them with love.
I feel sort of silly. I mean, here I am filling pages with one weekend of thoughts. What about all the people who had bad news from their re-tests? The ones who go on to deal with the reality of what was only going on in my head. I can’t really fathom their experience. Bless them.
Special thanks to Walter for encouraging me to write all this down at the time.
Outdoors: 45°F/19°F Sunny
Farm House: 34°F/32°F
Tiny Cottage: 66°F/59°F