by Carolyn Langlie-Lesnik | Mar 20, 2008 | Uncategorized |
I guess it’s the kind of the age-old unanswered question. I’ve seen lots of bad things happen over the past 25 years I’ve been a nurse. A toddler drowned trying to retrieve a toy from a 5 gallon bucket of water, a 16 year old felt he was indestructible and became an organ donor after losing a game of Russian Roulette, a family lost both of their children to two different types of cancer in two years, a colleague died of melanoma after decorating for what she knew would be her last Christmas with her children. A teen became a forever quadraplegic after being struck by a stray bullet in a bad neighborhood, a young mother died of an asthma attack just after giving birth to her first and much waited for daughter, my four year old disabled nephew died, a woman was diagnosed with advanced appendix cancer 4 hours after giving birth to a child she waited nine years to conceive. On and on.
Bad things happen to good people all of the time. I’ve been a witness to that for decades. Faith in an all-loving and all-powerful God doesn’t seem to offer much protection from life’s difficulties. God lets bad things happen all the time. God often answers no to prayers.
What I’d seen before as a nurse is only compounded by what I’ve seen as an almost 7 year member of the cancer community. Life is tough, life is hard, life is very often very unfair. The unfairness is sometimes incomprehensible.
I read several books on my journey back to faith…including many good ones by Philip Yancey. He asks the questions many of us are afraid to ask. I love his fearless honesty. Disappointment with God, Where is God When it Hurts?, Prayer: Does it Make any Difference?, Soul Survivor: How My Faith Survived the Church, Church: Why Bother?. Those are titles of some of his books. He asks the tough questions out loud, and I tag along reading his books as he searches for answers. I am grateful for the work he does for me. I have asked and often still ask all of those same questions.
In one of his books, Yancey explores a case of children institutionalized in communist Germany who were severely mentally handicapped and totally dependent. Children who never served a “purpose” in the way most of us define purpose. Many people who were involved in the handicapped children’s care were later interviewed, and it turned out they had been profoundly affected. They developed patience and tolerance. They developed a sense of appreciation for wellness. They felt needed and significant. It turned out the handicapped children had a profound effect on many of the people who’d been in contact with them. The children made a difference in a way many of us who are able-bodied will never. Their lives, their suffering, had purpose and meaning.
I think of Abraham Lincoln….he grew up in poverty, his mother died when he was only 10, he was estranged from his father, both of his siblings died, the step-mother he loved suffered from mental illness, three of his own four children died before reaching adulthood. I wonder if maybe all of those circumstances in the end carved his character and made him the person who was able to liberate thousands of people, who fought for justice, who changed our country forever.
I now see this life as very short in light of eternity. We are really just here for an instant. I think now that the tough things we experience are really just short blips in the grand scheme of things. They are dark threads in a tapestry we only see from the underside now but will one day appreciate when can we see the whole work of art. Though overwhelming now, pain is actually a very temporary thing.
I now truly trust there is an artwork in progess, and I dream of seeing the finished product, of having the answers, of being able to understand what is so illusive now from our perspective here.
I trust and believe that one day we will have those answers, that it will all make sense. And I very much look forward to that day. When we will see the beauty from the ashes. It’s what Easter is all about.
by Carolyn Langlie-Lesnik | Mar 19, 2008 | Uncategorized |
My personal faith is something I don’t talk about a lot, though I allude to it here now and then. I struggled with faith for a long time. For many reasons.
I grew up in a Christian household. We went to church a lot. We wore our Sunday best and sat still for hours in church on Sundays. I didn’t like the music that sounded to me like funeral dirges, and I can’t remember a single thing I learned from a sermon. I felt the God I met as a child was a god who only loved me when I was stiff and formal and wearing clothes I hated while singing songs I didn’t like. I dreaded Sundays, but loved Saturdays when I could climb trees in my blue jeans. When I was a kid, weekends had a good day, Saturday, and a bad day, Sunday. I dreaded heaven as I heard it was a place where we would worship God forever…..an eternity of Sundays.
My father was a good man, but like many fathers of my generation, he was the rulemaker and disciplinarian, not someone I had a personal or close relationship with, not someone I shared my troubles with or confided in. So the idea of a personal relationship with my heavenly father was a difficult one for me to accept. It was easier for me to accept a God who’s relationship with us was to set rules and to disipline us when we broke them.
My eldest sister left for college when I was 13, and when she did I was crushed to lose one of my best friends, she’d been my hero until then. I was confused, though, when she came back…she had been “saved” and had become an Christian who quoted Bible verses often and talked of redemption. She made me read The Late Great Planet Earth so that when the end of the world came I wouldn’t go to hell. I’d only been contemplating high school until then. I hurriedly said the sinner’s prayer and bought a cross necklace just in case she and Hal Lindsey were right and the anti-Christ was in the world heralding the final Armageddon and the end of us all. My heart wasn’t in it though. I didn’t want to display and live the religious fervor she did, it just wasn’t me. It made me uncomfortable.
Then my grandmother died of cancer. She and I had been very close; I even helped care for her when she was in the final and painful stages of the disease. She and I read many books together, books I loved…Jonathan Livingston Seagull and Khalil Gibran’s “The Prophet” were two. She only left me one thing, though, when she died. A personally inscribed Bible. Just before she died she solemnly told me it was her final gift to me . She had never been particularly religious. She’d even told me once she’d rather spend an afternoon with a good book than a bunch of church ladies, though she attended church. I was intrigued at her final gift to me. So I decided to give her Bible a try. I don’t know why, but I only read the gospels after her memorial service.
I was surprised by what I read. I really liked Jesus a lot. I’d never met him in my church. This Jesus even loved, accepted and spent time with people who sinned sexually and cheated other people. He loved everyone. He had the most contempt for the upright judgmental religious people and let them know that regularly. He didn’t even own a change of clothes (so much for proper Sunday dress) and preached outside in the grass sometimes while providing a picnic lunch to his listeners. He attended parties and drank wine. He chose as one of his first missionaries a woman who’d been married multiple times and was living in sin. He loved and accepted everyone.
And when he died and came back, he showed everyone that you receive a physical body after death, one that can be touched and hugged. He could still eat food in his new body; one of the first things he did when he returned in his new body was to have breakfast with his friends. But his new body could also overcome the laws of physics and pass through time and space and locked doors. Wow. And when he left he didn’t even leave us with a lot of rules, just asked us to love him and to love each other, even when loving wasn’t easy. And if we failed at even that, he would still forgive and accept us.
I followed that Jesus until I’d been in an abusive marriage for 7 years and decided I couldn’t keep turning the other cheek, I couldn’t love my enemies. I left Jesus when I left the marriage in my early 20s. I still believed, I just didn’t think I had what it took to be a follower.
And I stayed away. Until 2001. Until cancer. Until I met an enemy I was totally powerless against, until I needed help bigger than I could find in this world. But it was still a long and difficult road back. Full of questions and challenges and even anger.
I now have a great faith and a great trust in God. I am sure of His presence in my life. I am not a religious fanatic, I’m actually not very “religious” at all. I attend an organized church, though kind of sporadically. I wear blue jeans to church and my church has a band with drums and the minister preaches in khakis. My best church, though, where I really connect with my God, is in the wilderness among trees and birds. Where the Monarchs butterflies are, where spring wild flowers bloom, where acorns become great oak trees. I also feel that connection when I play music.
I am sorry for the way Christianity is often portrayed by Christians today. I am reading a book “Unchristian”, I truly love it. I think every Christian should read it. It talks about what the Christian faith as portrayed in America looks like to many outsiders…..our image is not a good one. It talks about people like myself, who are afraid we’ll alienate others when we identify our faith. My church now hesitates to use the word “Christian” to describe us as the word has come to portray such a negative image to so many. My church is trying instead to use the term “Christ followers” to refer to us. And to remind us just what a Christ follower does….just loves other people, all people, first and foremost, to the best of our ability. It is what motivated me to construct my web site and to start this blog and to try to help others with cancer.
by Carolyn Langlie-Lesnik | Mar 16, 2008 | Uncategorized |
Maybe this is a bit of a confession in regards to my failings or weaknesses, but here goes.
I am a tough women. I have a very high pain threshold. I asked for my morphine PCA to be discontinued within 24 hours of my big surgery as I didn’t need narcotics (I did receive Toradol, though, a great pain reliever). I wore street cloths in the hospital within 48 hours of my surgery, and would only use my hospital bed to sleep at night, I walked the halls almost all day every day. I was discharged in 6 days on only ibuprofen. I walked for 3 miles on the streets of New York City 8 days after my surgery. I was driving my car and grocery shopping less than two weeks after my big surgery. I drove myself to and from chemo, sometimes I even rode my bicycle the 5 miles to and from chemotherapy. I did athletic training while on chemo to prepare to do a century bicycle tour. I wasn’t going to let cancer beat me, I wasn’t going to let cancer win. I was tough.
Physically, anyway.
I always thought I was very tough mentally and emotionally too, but I have to say, the emotional and mental recovery from cancer diagnosis and treatment has been a long one.
After cancer, at first I couldn’t play my piano. I’d sit in front of it and my hands wouldn’t move. I don’t know why, but I hear the same thing happens sometimes to other musicians in times of tragedy. I lost interest in gardening and in my bird sanctuary, I lost interest in spring cleaning. Not sure why, I just did. I recovered my ability to play piano after a short while, but I quit celebrating and participating in springtime. Springtime activities to me represented a commitment to the future, and for several years I didn’t commit to more than one day at a time. I didn’t want to commit to the responsibility of keeping bird feeders filled, to watering and caring for plants, to weeding gardens. I couldn’t maintain garden life and bird life any more, I wasn’t sure if I could even maintain my own life.
This year is kind of a landmark for me though…for the first time since diagnosis, I want to really invest in springtime. I want to plant gardens again, set up my bird scanctuary again, buy houseplants. I spent a lot of money on gardening supplies and bird feeders last night.
I can finally plan for and enjoy a potential future, I think because it doesn’t need to be promised for me to feel fulfilled. I feel much less fear. I’ve finally lost my fear of dying, and that’s a milestone that is so liberating. Death no longer represents an ending to me, just another transition. Life is, after all, transitions. And this year I want to participate in and celebrate the transition that is spring, not as a commitment, but as a promise, as a hope, as an example of beauty emerging from the dark and cold.
My newfound normal is actually very liberating. But I was slow in getting here, maybe?
The emotional recovery has been a long one and is probably still not over. But I like my new normal better than my old normal. Like the Monarchs, in the spring I can see life coming from death, new coming from old, large coming from small, growth from nothingness. Springtime is full of those reminders that life comes from death, that large things come from small beginnings. I have a hope for a future is unending now. Spring will help me celebrate my new perspective this year.
by Carolyn Langlie-Lesnik | Mar 11, 2008 | Uncategorized |
Relationships can become difficult after a cancer diagnosis. It’s not something that’s talked about a lot, though.
At first after a cancer diagnosis, everyone is shocked and overwhelmed. We have to deal with the very real possibility of loss. People who love us are afraid we will die and they will lose us, and we are afraid we will die and lose everyone we love. It’s assumed at first that as in the song “Live Like You Are Dying” the sentiments “I loved deeper and I spoke sweeter, and I gave forgiveness I’d been denying.” will rule. And they do, at first. I received so much support and love from so many people, even strangers. I know I felt very loved and cherished and grateful. I appreciated the support from so many very much.
But some things about relationships got difficult over time.
For many of us diagnosed with cancer, though we appreciate the support and love we receive, at the same time we have a need to isolate ourselves a little bit more, especially at first. We are contemplating so much loss. We sometimes feel we need to start letting go a little bit “just in case”, we feel safer that way. Sometimes I felt smothered by those who were well-meaning. I didn’t always want to interact as much as everyone wanted me to interact, sometimes I needed more alone time.
Sometimes it seemed everyone wanted me to be strong and positive, as they felt that would save me. But sometimes it got difficult to put on the strong and positive act 24/7 when I was around people, though I felt I had to do it to reassure them. One cancer patient said “I don’t want to smile any more. I don’t have the energy to be positive and strong all the time when I’m around people.”
Sometimes people didn’t know what to say to me. Since cancer was the topic, they told me countless stories about family members and friends they had lost to cancer…they made me feel vulnerable. Other people were afraid…if it happened to me it could happen to them. I scared them so much that they put distance between us…I made them feel vulnerable.
Some thought that in light of my diagnosis we should have more family gatherings. That was difficult. And I became very aware of all of the cameras taken out and the pictures and videos taken of me to document my life “just in case” at family events.
Some wanted to socialize more, talk more, visit more, become closer. But what I really craved after awhile were the normal “before cancer” relationships that were less intense, less needy, that didn’t have new expectations. And the relationships I most wanted to focus were my relationships at home, my relationships with my husband and kids.
I also talk to those who have supported loved ones diagnosed with cancer, and they have had a tough time too. After surgery and chemo are finished, they want life to go back to the before cancer normal too, but oftentimes that doesn’t happen, at least not in a timely manner. Some of the most difficult times for cancer patients emotionally are after surgery and chemo are completed, but by then those who have supported us are needing their own support. They’ve supported us to the point of exhaustion and need a break. They expect us to be recovered and able to contribute to the relationships in the way we used to and are disappointed sometimes when we can’t. They want the old “normal” too. Then there’s the stress of lost income and medical bills and altered roles in the family. Values change, priorities change, roles change, finances change, physical abilities change. So much changes.
If you ever spend time in a crowd of cancer survivors, you’ll learn that some relationships don’t survive a cancer diagnosis. Some relationships that were dysfunctional before cancer become even more dysfunctional after. Some marriages don’t survive, some romantic relationships don’t survive, some family relationships don’t survive, some friendships don’t survive. Sometimes the ones that do survive are often forever changed, some are damaged, some are changed for the better.
Cancer leaves nothing untouched, nothing in our lives is left unaffected.
by Carolyn Langlie-Lesnik | Mar 3, 2008 | Uncategorized |
My cancer diagnosis caused my world to come crashing down almost 7 years ago. It had a profound effect on my husband and kids, their world came crashing down too. It was hard for all of us as a family. But I have seen many good things come of our experience.
When I began cancer advocacy, my kids struggled with it a bit. They wanted the word cancer out of our lives, they wanted to forget cancer. They didn’t want to talk about it, they wanted to leave cancer behind. Then they would come in my room and see me working on my appendix cancer web site. I was always emailing cancer patients and always talking to cancer patients on the phone. Cancer never seemed to be over. They wanted to support me, though, so they reluctantly let cancer remain a part of our household, they let it become part of our everyday lives.
In the end, though, they, like myself, have used the experience to the good. My kids have used our cancer story as a topic for speeches they’ve given in school. It’s been the subject of papers they’ve written. My daughter’s senior project this year involved her writing a chapter in a book her class published. She wrote the chapter about me and how I had used my difficult circumstance to make a positive difference, it was titled “More Than a Survivor”. I had a houseful of teens over tonight… they wanted to make appendix cancer awareness ribbons as part of a school Personal Impact Project. The ribbons they made will be distributed to specialists treating the disease all over the country. They spent their evening on my livingroom floor with glue guns and ribbons because they knew our story and wanted to make a difference. Notice the hundreds of amber ribbons on the newspaper.
We are very close, my kids and I, and we respect each other and can talk about anything. They tell me things I never would have told my mother as a teen. We have great talks. We make a point to spend one-on-one uninterrupted time together often, we don’t take each other for granted. My husband and I treasure time we get to spend together as a couple. My husband is able to help husbands of cancer patients he meets as a surgical nurse, he knows how they feel waiting for pathology reports. We are all better people with better perspectives because of the really difficult time we had together as a family. It was a really tough experience, but wasn’t all bad in the end. Good did come of it.
