Two days ago, I was diagnosed with brain cancer for the 3rd time in 14 years. To make a long story short, my cancer has evolved from a grade II Astrocytoma, to the most aggressive form, grade IV Glioblastoma Multiforme. Glioblastoma is incurable and I probably won’t survive past 15 months.
My family is Lutheran and very conservative. Both of my parents disapprove of gay people, atheists, and non-Christians, so telling them I’m atheist on top of my recent diagnosis, and eldest sister’s recent death will absolutely crush them. Now that the rest of my family has been told of my fate, the ‘I will pray for you’ s and the constant church visits are non-stop. My parents are trying to push herbal treatments on me now and they are trying to get me into the Burzynski Clinic, which is a gigantic scam towards cancer patients. They are also trying to plan a trip to someplace like Hawaii, but I don’t exactly want that. My also atheist brother is trying to help me with everything, but he is scared that he will probably tip off my parents about us.
I need help with a lot of things:
. Should I or should I not tell them about my atheism?
. Should I start college this fall?
. How should I ask for a non-church, non-Lutheran funeral?
. Should I tell the rest of my family?
. Should I accept treatment (survival without treatment is 3-4 months)
. How am I supposed to die with grace?
The last one is most important to me. I don’t want to die with medicines constantly being shoved into my mouth and trips all around the world. I just want to spend time with my family like I normally would: Sitting together around a dinner table, making each other laugh and making google eyes at my brother while we’re supposed to be at church.
Thank you for everything,
The Cancer Chick
Dear Cancer Chick,
In the midst of what is happening to you, your consideration for the feelings and well-being of others is remarkable and commendable. Your selflessness clearly shows that you are a gift to all those who are lucky enough to know you. There is so much about you in this letter that I admire.
People often ask counselors to help them make a decision. They have what they want to do, but they are concerned, as you are, about the effect their choice will have on others. They want to take care of themselves, but they don’t want to be selfish. Sometimes it’s as if they don’t think they really have the right to act in their own best interest. The counselor cannot make the decision for them, but to help them loosen up their impasse so they can consider all their options more fully, sometimes the counselor will “give them permission” to take care of themselves. That permission is often the thing they were not sure they had.
That’s what I’m going to do several times here. You have the right to do whatever is right for you, whatever helps you, whatever comforts and supports you. From your good character that I see in your letter, I think you will be able to find a way to have the essential parts of those things, and yet not cross over a line into unkind selfishness.
I’ll now attempt to respond to your specific questions. I admire and respect your straight-forward and unblinking acceptance of your reality, so I will honor that with straight-forward and unblinking replies. Please do not mistake my rational treatment of these very challenging questions for coldness or a lack of caring for you. On the contrary, my caring has made this the most difficult letter I have ever answered.
Should I or should I not tell them about my atheism?
I get this question often. It comes down to weighing the cost and benefit of telling versus the cost and benefit of keeping it a secret, and there are many situational factors to balance. Sometimes the atheist’s parent or grandparent is elderly and has little time left, so that becomes one of the factors to consider. In your case, yours is the time that is limited, so you have to imagine how telling them will affect your relationship with them for the time you have remaining. If, as you described, you want to simply enjoy their company, sitting around the dinner table, making each other laugh, then the upset that you anticipate they would have about your atheism would probably interfere with that.
Should I start college this fall?
Again, do whatever makes you happy and satisfied. If learning something in college is one of those things, and if cost is not a serious obstacle, and if that gives your time remaining, whether it’s 3 months, or 15 months, or a lifetime the meaning, purpose, and pleasure that you want, then go for it. If, as time passes, you encounter difficulties from the illness that make it more hardship than satisfaction, then it’s also completely okay to drop out and spend more time as you described with your family. Your situation frees you from having to answer the annoyingly ubiquitous question, “What are you going to do with your education?” Education can be a valid goal in and of itself, whether it’s one class or a degree.
How should I ask for a non-church, non-Lutheran funeral?
You might consider a memorial service instead. Funerals focus on the death of the person. The body is present, the tone is usually somber, and behavior is very formal. They’re usually held in funeral homes or churches which have the facilities for dealing with the remains. Sermons and prayers by clergy are expected, and the proceedings seem to be incomplete if religion is not a central part.
On the other hand, memorial services emphasize the life of the person. The body is not present, but often many photographs and objects are displayed that refer to what the deceased loved and cared about in life. These gatherings can be held in a wide variety of pleasant places. They’re also much less expensive than a funeral, and when you are considering the well-being of your relatives, sparing them that extra stressor is a nice gift to give them.
There’s usually one person designated to oversee the proceedings, a sort of master of ceremonies, and very often many people take turns to speak, either with prepared remarks or extemporaneously. The best of such statements that I’ve heard have expressed what each person gained from knowing the deceased, and what they want to have about that person live on in their own behavior. It’s not mandatory that everyone be cheerful; they’re certainly also free to express their sadness. All feelings are permitted to be felt and expressed. People are also free to express religious ideas if they wish, but that is not a requirement. The M.C., who should be a strong and assertive person, can make it clear that people should please keep their remarks to a limited amount of time, so no one dominates the whole thing. You can specify that you prefer clergy not be present, so that they don’t take over the show. If a minister must be there for the feelings of your parents, for instance, you can make it clear that he must be a guest like any of the others, and not the “star of the show.”
Since money is not being spent on a funeral, people could be given the opportunity to make modest donations to a charity or cause that is meaningful to you. In this way they can in a tangible way honor and support the values that you practiced in your life.
You can tell your family that this is the kind of observance you want because you want those of your friends who are not very religious to feel included, and because you simply like the positivism about it. This way you can insist on whatever you want without revealing your atheism, if you choose to keep that private. Look up ideas for memorial services, and ask friends for their ideas and advice. This can be an opportunity for you to connect with people on levels that might otherwise feel too awkward without a project to collaborate on.
Write down your ideas, and organize it into a plan. Having basic things planned and spelled out on paper will help to lighten the burden of those people who will be making it happen, so they can also experience and express their several emotions during that time.
I’m assuming that you mean tell them about your atheism. Again it’s a cost/benefit and a risk/benefit assessment. When and if your extended family learns about it, there is a chance that your parents will eventually find out. The more people who know a secret, the more possibilities for a leak. So if you’d rather your parents not find out before you die so you don’t have to endure that upset, then it’s probably best to leave it quiet. This also depends on who in your family, if anyone, is scrupulously discrete, which is sadly a rare virtue. If you would like specific people to know after you die, you could perhaps write down what you want to tell them in a letter to be delivered at a prearranged time. Clear this with your brother, since he would probably be the trusted holder of such letters, and also because there is a good possibility that it will bring about his being revealed as an atheist too, even if that is inadvertent.
Concerning your brother and his fear that he might tip off your parents about your shared atheism: Talk to him gently about his fear, and about what emotions might push him to be indiscrete. Helping him to express to you whatever inner pressure he has about this can help relieve that pressure so he can be the skillful and reliable “secret comrade” you need him to be, and that he wants to be.
Should I accept treatment (survival without treatment is 3-4 months)
This is another cost/benefit decision, considering length versus quality. If treatment will give you fifteen months, then you need to talk very frankly with your doctors, and insist that they tell you very frankly what you will experience without treatment for that short time, and what you will experience with treatment for that longer time. I have known people who have chosen either option. There is a difference between prolonging life and prolonging dying. There are no objective criteria for deciding where that line is drawn; it is a unique and personal differentiation for each person.
With family members pulling in different directions about how to help you, it’s important that you take steps now to retain control over your medical care. People in the grip of anxiety and grief sometimes intrude into what ought to be considered your prerogatives, and they can disregard your stated wishes unless you enforce them. You don’t want to become a rope in a tug-of-war between people who are focused on what they want for you, rather than on what you want for yourself.
To protect yourself from that, you should draw up a Durable Medical Power of Attorney that spells out what general kinds of medical treatment you want and don’t want, and what specific life-prolonging measures are acceptable and unacceptable to you. You should also designate someone you trust who will be able and willing to make medical decisions and other care decisions on your behalf if you become incapable, including, according to the dictates of your state’s laws, what would result in the immediate ending of your life. This person must be strong enough to follow your wishes in the face of family members who have their own ideas and who are at the effect of strong feelings.
Ask your doctor(s) if they can provide you a Medical Power of Attorney form. If you have a hospital you have been using, hospitals often have social workers on staff who can help patients with many issues about their care and their legal rights. He or she might be able to help you decide what you want to specify in that document. Have several valid copies, one on file at the hospital, one you keep handy, and one for your designated executor of the document.
If you don’t already have one, you should also draw up a will. It doesn’t matter if you have a lot of money and property, or nearly nothing. Get it done. It will relieve people from the discomfort of having to decide what to do with things you leave behind, and the resentment that such decisions often cause. You can hand write your own, which, depending on the laws of your state, is valid and binding without being notarized or witnessed. A store-bought form with witnesses and notary is a little better, and of course the best is a will drawn up by an attorney competent in family or estate law.
How am I supposed to die with grace?
First of all, you don’t have to meet anyone else’s expectations of how you’re “supposed” to die. Many people in your position do what they can to die with dignity, or as much of that as they can preserve. Often the biggest difficulty for them is, ironically, the people who love them, and who take care of their own needs by doing things “for” the dying person.
In Christianity, the word “grace” has a variety of meanings, including “forgiveness for the undeserving.” As an atheist, you need none of that nonsense. What you do need are advocates who will help you carry out your wishes for whatever kind of care you want and need during this time, and whatever kind you don’t want. Well-informed allies can help you to be assertive and to insist on what you choose. Again, you have complete permission to feel and to express whatever feelings flow through you, and to choose whatever path that is right for you, as long or as short, as hard or as easy, as complicated or as simple as it may be. And at any time, you can change your mind. This is your life-and-death. You have the right to manage it, and you don’t have to apologize.
I wonder if by “grace” you might also mean something more like gracefulness, equanimity, peace, completeness, being resolved, something like that. Talking with a trusted and close friend might help, and perhaps also a counselor, someone who is more objective but still able to empathize, and who can accurately reflect your own thoughts and feelings back to you. That counselor could also possibly help you with your relationships with your parents and other family members. You would need a counselor who is strictly secular. If you don’t have someone in mind, perhaps the Secular Therapist Project can help you find a provider who will not intrude with any religious ideas into your consultations.
People in your situation often find that what they once considered to be important things become unimportant, and what they once neglected as not very important become paramount. Stating “I love you” is very often one of those newly important things. Getting those expressions of love thoroughly communicated to all the right people can bring at least a sense of completion if not serenity.
Cancer Chick, I would rather call you Courageous Chick. Your cancer does not define you; much larger traits define you. These include your compassion for your parents, your love and trust of your brother, your instinct for fairness in rejecting the previous generation’s prejudices, your rationality as expressed by your eschewing treatments that are not based on evidence, and also, and it is not a cliché, your courage to look life and death in the eye, and to treat it as a challenge for you to respond in whatever ways are best both for yourself and for all those concerned. Don’t worry that those responses aren’t perfect. No one expects that. No one has ever achieved that. Just find as good a balance as you can, and rest in the knowledge that you did what you could.
Please feel free to write again if you wish. There are several hundred strangers reading your letter who now care about you just like friends.
I admire you very much. I wish you peace.