Cancer Is A Disease – Not A Spiritual Condition
This is a recent tweet from @boingboing journalist, Xeni
Cancer does not automatically make you empathetic to other patients or a nice person. It’s a disease, not a spiritual condition.
Would you agree?
Some of you will be nodding your head in agreement at the second sentence; while others will shake theirs in sadness.
Which of you is right? Answer: You both are.
For some, cancer is a spiritual test and reawakening. There are many blogs out there to which testify to this. For another equally vocal group, it is not a blessing or a gift. I know this discussion can bring forth some very differing views, and I want to say again, that whatever works for you is perfectly fine – just don’t expect everyone else to share your point of view.
Back to the first part of Xeni’s tweet. I have long believed that people don’t fundamentally change. If you are a positive person who looks for the silver lining in every challenge, then this is the attitude you will take with you to the experience of cancer. If this is not naturally your personality, then not only are you going to find it tough to deal with cancer, but you will also have to take on board the insidious expectation that you are expected to do so with a brave smile on your face and positive affirmations on your lips. This is what Carolyn Thomas, writing from the perspective of a heart attack survivor, calls “the not-so-subtle expectation that good patients will somehow take the lemons that life curveballs at them and make deliciously noble lemonade.”
Jessie Gruman, founder of the Center for Advancing Health, and a survivor of four cancer-related diagnoses, has written about how the belief that we are somehow ennobled by illness can add to the burden of those who are ill.
I am already doing the best I can to get better. To add to these challenges the expectation that the experience of illness will re-order my priorities and make me wiser (or gentler or kinder or more generous) burdens me further. Not only has my body failed, but I might now also fail as a person.
I am not denying that some people do find a renewed sense of purpose after cancer, but it is this implicit expectation that we must turn our experience of cancer into something meaningful that is an added burden on an already difficult illness. Nor am I disavowing that the experience of cancer makes some people more compassionate and empathetic; but I would argue that these qualities were either already formed or lying dormant ready to be awakened by cancer. And while I can point to the many who go on to do advocacy work, volunteer as a peer supporter, and educate others about cancer in the hope of making a change for the better in the lives of cancer patients and their families, I can equally point to those who have wanted to put the experience behind them and close the door firmly on any reminders (the question of whether we can truly ever put cancer behind us is addressed in an earlier post).
The expectation that journalist Emma Keller, having had breast cancer herself, should not have attacked Lisa Adams in her newspaper column, arises from this mistaken belief that cancer makes you a better person. It doesn’t. At the end of the day, people are people. Some of us will find meaning in our cancer experience, some of us will not. Some of us will be motivated to give more of our time to help others with cancer, while others among us will just want to move on and forget about the whole experience, as Emma Keller has said she wanted to do. We are all individual in our ways of dealing with a cancer diagnosis, its treatment, and how we deal with its aftermath.
Do you agree with my post today? I am open to everyone’s views on this topic. Perhaps cancer did change you in some fundamental way. Please feel free to share your story, whatever it may be.
That’s what my mother has said numerous times to me over the past couple of years: “This isn’t going to make you a better person!” Well, yes. But then she’s also said, “You aren’t going to die.” And that’s just ludicrous because we are ALL going to die one of these days and always a lot sooner than we’d like.
Are we better people as a result? No. Are we different? Absolutely. There are some roads in life that are strictly one way. A good analogy is migration. Once you leave your country of origin and live elsewhere you can never go back and be the person who never left home. You have been permanently and irrevocably changed. I just talked to a woman who moved back to the US after 18 years abroad and even she is shocked at just how much she changed and how hard re-entry is. She will adjust but she will never be like her neighbors who have lived in that town all their lives.
I think cancer is like that. There are a million ways that it is different for everyone but we are all on the road and there is no going back. It can very perplexing to listen to folks who aren’t on that road (yet) telling you that you really should (and oh how I hate “shoulds”) put that experience behind you which is code for “please stop talking about it because it makes me uncomfortable.” I have no intention of inflicting my story on others who don’t want to hear it. But I would be wasting a damn fine opportunity (a kind of regression) and expending way too much energy in denial if I tried to pretend that it had no impact on my life whatsoever and that the road forward is not defined in important ways by that experience. This is what I wrote a few months ago and I think it sums nicely up where I’m at right now:
“When I was at that last appointment with my oncologist, I asked her what I should do in the months to come and she replied, “Reprenez votre vie.” (Take up your life). I understand what she wants me to do but I would counter that counsel with the great saying about not being able to step into the same river twice. I’m not the person I was a year ago. I don’t feel the same way or want the same things. The most radical change I think has been a kind of softening. It’s as if, for 47 years, I’ve had a kind of carapace (shell) around me that I erected for my own protection – to not feel too much or too deeply. These days the shell has a lot of holes in it and that’s a Good Thing. If “taking up my life” again means going back to what I was before then I want none of it even if it was more comfortable. I don’t even think it’s possible. Some mornings I wake up and I wish I knew if I was truly in remission and then I ask myself what in heaven’s name would I do with this information? Toughen up? Crawl back into my shell? Un-know everything I have learned about how uncertain life really is? Seems wiser to simply go forward and see where it takes me.”
Wow, thanks Victoria – your comments really add to the discussion – I love how you describe the softening of the shell – that image will stay with me for a long time.
One thing I have learned is that we can’t “un-know” what we know. And we can’t know what we don’t know until we do.
Cancer is a real warfare and not a one woman battle. My mom had it and everyone suffered but we stayed strong, glad to say she is a survivor!!
I think cancer, and any life trauma is something which catapults you to the next level of play, no matter what the playing field is.
Hi Marie. I do not think most people diagnosed with a serious illness automatically morph into a better version of their former selves due to their illness. Life and human beings are far more complicated… It’s just another one of the cancer expectations out there. I’ve written about this very thing myself. Thanks for sharing Xeni’s tweet. I saw it the other day too, and nodded in agreement. Here’s the link to my piece in case anyone’s interested.
Thanks for sharing your post with us Nancy – I know your feelings on this topic and it is something I feel. as you do, it is important to get out there.
Hi Marie. I also don’t think that people automatically morph in to a better version of themselves as a result of a cancer, but it is definitely a life changing event. I think that having treatment, the extent of the disease, whether there is a recurrence, whether very close friends and family also get cancer affects a person too. When it comes to cancer each case is unique. With social media, what I don’t like is people that attack people with cancer and have no idea of how wrong that is. This disease has far too many mind games that can be very upsetting. Being able to read and share experiences through social media with other people who write about cancer is a very special thing. We are lucky there is a community of people that want to share their experiences and have come to care about each other a great deal. Thanks Marie, for all you do, especially bringing us all together. Time to read Nancy’s post!
Hi Susan, thanks so much for your comment, and for all your comments this week on such an important topic. I think we mustn’t forget that some of the “attacking” also comes within our own community, which can be even more distressing.
I can sympathize with both perspectives Marie, because I’ve actually been in both camps myself. After my first diagnosis & treatment I wanted nothing more than to get on with my life and leave cancer behind me. But after a second early stage diagnosis, I realized that I had an opportunity based on my own experience to help others. I would really stress though that in no way did I see cancer as a “gift” or volunteering as “giving back.” For me, it was simply a matter of being faced with a valuable opportunity that I could choose to take or not take.
What I love about your blog, Marie, is that it raises questions that apply not just within the cancer community but the wider illness community and into the way society views illness overall. There is very much an expectation of transformative illness experiences which feeds into the “inspirational patient” motif in our culture. Serious illness or injury is life changing but not always in a positive manner. For some it is a soul crushing experience and they act accordingly, wanting to put it behind them. For others it does become a cathartic moment where they choose to live their life in a different manner. Both are okay, as illness is a personal experience and our reactions are very much based on our life experiences, and coping styles, long before illness came along to derail things. The only thing I have a problem with is the ‘expectation’ that it will transform every person into some level of higher spirituality or altruism, and if that doesn’t happen then the person has somehow failed. And that pressure can be exerted both within and without the patient group. That expectation is too high a burden to bear on top of dealing with serious illness.
I do not believe our basic character changes… Helpers stay helpers ..loners are still loners… Vocal are still vocal and social still social and so it goes on… Personally I was already a counsellor but about 8 years after treatment I started to counsel those with cancer via the Cancer Council here in Australia.. I find my experience of cancer does help me connect plus often for clients there is some relief in that I will ” understand”… So I am a helper and still a helper!!!
I find it funny when someone asks” have you changed what you eat” and the one I get asked alot about “have you more faith or do you pray more” I tell them my faith is my faith and I dont ask you what your faith is. Have I changed what I eat, no. The one thing I have changed is how to say no. That alone is a relief. But why would anyone change and become more saintly, have a more organic life style. Honestly why would I change? We have reminders every day, change s in our bodies, medications to be taken, appointments, fatigue, chemo ….. for me those are enough chages to deal with! I want to leave it behind and forget but that wont happen. Ladies, your blogs give so much and anyone can dip in and out when we want. So please dont change how or why you write☆☆☆☆
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My mom died from breast cancer back in 1971. I was 15 at the time. I only knew cancer to be a tragedy then. While in my early thirties I had a thirst for understanding what life was about, after experiencing significant adversity in my own life including my mother’s death. I was so fortunate to have volunteered in a children’s oncology camp, Camp Good Days and Special Times in upstate New York. It was there that I began to learn more about this disease.
Children of all ages and from all parts of the globe arrived to spend a week with other kids who were all battling cancer. I was emotionally devastated by this reality, and wondered what I could offer. What I realized was that listening to their stories was the best gift I could give them. For many they had secrets or tales that they could not share with their families since they were so destraught. Althought I was there to volunteer, I quickly realized that I was the student and they were the teachers.
Each story was told to me in private. They trusted me enough to share these inner secrets. And as kids, their intention was only pure. There were several who told me about “experiences” they had in the hospital or at home while alone in their room. They were mystical in nature, seeing angels, religious figures and all amazing. It was easy to know that they were honest since so many shook as they talked, and of course were just kids. As a result I heard several times that they were okay with their disease and knew that they would be okay (although okay in this way did not just mean healed). I was in tears each time.
I befriended one of these kids who was from Poland and promised to visit her. It was the time of my life, living such a simple yet challenging life. At the end of my visit she pulled out a poem she had created a year ago while in the hospital when she was concerned that she would not make it. I wish I kept a copy. It was titled, What I learned from cancer. We cried together as she shared how meaningful cancer had been in her life. I was amazed at how a 15 year old could be so wise beyond her years. She died a year later and her memory forever remains.
Years later I volunteered in hospice where I spent the final days with many wonderful human beings. Once again it was nothing less than a spiritual experience. So many shared their stories and conversations they had with friends and family the day before, only to find out from their families that these people had already died.
From this it finally helped me deal with my Mom’s passing. The night before she died, while in a coma for several days, she woke up and was so alert. She smiled in her famous way and said to all of us “I will be 100% better” and then died. I had no idea what this meant, at that time yound and praying for a miracle. Now I know that she is in a better place.
I guess this is all to say that what I have learned is that there is meaning to life. It seems ridiculous to share this with those who are going through so much pain and fear. I know this from going through my own painful times. One final story from Anita Moojani, who has since published a book on her experience with cancer, helped me to feel assured that there is indeed meaning, even during our most painful times.
In any case, it is the reality of cancer that people need to grapple with. I am so sorry that people have to experience this pain even if there is meaning to it. I pray for all of you and wish you the best, and if I can, suggest the thought that you are now an amazing teacher, helping to teach so many others about what is really important, just as the kids did for me. Look at the thousands walking to raise funds and increase awareness today. Your message is indeed being heard!