This is a rather lengthy repost from the Our Land series of Finding Ninee . I wrote it last year about the impact of chronic illness and chronic forms of cancer can have on a life.
How Long Would You Like To Live?
I went searching for pertinent quotes that I could use to write this post. Finding one would have no doubt made it much easier to write. I did find a few – like my personal favorite – which doesn’t illustrate my point, but does make me laugh.
My veins are filled, once a week with a Neapolitan carpet cleaner distilled from the Adriatic … However I still get around and am mean to cats. John Cheever
As with most quotes about cancer and the like, many were too sappy for my taste. Not that there’s anything wrong with that, but let’s just say I was pretty much left to my own devices.
I’m So Confused!
Life often demands we acknowledge the presence of absurdity in our everyday lives. Living with illness has afforded me an intimate perspective of these paradoxes and how they intertwine on a regular basis.
I am no different from anyone else, yet as fate would have it, I have been singled out to live the majority of my life with a disease that has been described by better writers than myself as being, “as rare as it is unpredictable, ‘smoldering’ in some people for decades, turning others to quick tender.” *
The way I see it is, being ill for the long haul is a paradox in and of itself. I mean who knew that you could have cancer for decades? Yes, I have rolled the proverbial snake eyes in terms of my health, but I am still not very different than those who suffer with other, more widespread illnesses (people with neurological and systemic disorders, even people living with the aftereffects of a stroke, head injury, or birth defect. I could continue ad nauseum). What it amounts to is that I am writing from a perspective of someone with a unique and incurable disease, and, correct me if I’m wrong, but I think that my experience is not unique at all. I believe that what I write here is true of most people living with any chronic illness.
I was diagnosed in my late twenties. At that time I had swollen lymph nodes much like I had experienced throughout my entire life. I had one lump in my neck since the age of eleven which doctors year after year would brush off with a nonchalant “lots of people have chronically swollen glands.”
Nothing to worry about, right?
The fact is that I probably had lymphoma at that time, but was not experiencing any other observable symptoms. Truth be known, I didn’t have any effects of poor health until treatment started in my early thirties. Therein lies the paradox of illness. Many cancer patients will progress and feel worse with treatment. Many will die. Much suffering occurs that is not directly related to the symptoms of illness. The remedies can cause problems that the cancer would not—some from which people cannot recover.
Living becomes a tradeoff, trying to balance time against function.
During chemo, you’re more tired than you’ve ever been. It’s like a cloud passing over the sun, and suddenly you’re out. You don’t know how you’ll answer the door when your groceries are delivered. But you also find that you’re stronger than you’ve ever been. You’re clear. Your mortality is at optimal distance, not up so close that it obscures everything else, but close enough to give you depth perception. Previously, it has taken you weeks, months, or years to discover the meaning of an experience. Now it’s instantaneous. ~Melissa Bank
I am forever grateful for the opportunity to live well beyond my expected life span. Please do not misunderstand that… I am, however well aware of the struggle and the confusing paradox that exists between living and dying. Through that lens I realize that the previous quote is true, but clarity is fleeting. The bloom will leave the rose.
How long would you like to live?
How would you like to spend that time? Living? Or surviving? Would you want that time if it meant that you might be so fatigued on a daily basis that you would have to stop most if not all activity by three in the afternoon? If that level of fatigue never went away after treatments were done?
It will be present all day, every day, and increase after even minimal activity. Anything beyond a casual stroll will no longer be available to you. You have to plan the stroll so you don’t overdo it that day. Perhaps you’ve lost major organs or the partial function of others. You no longer digest properly, you can’t even pee like you used to. You may be incontinent and have to worry whenever you go out in public or to family functions.
You have time, but it is littered with weekly trips to the hospital for intravenous treatments where needles connect you to tubing that delivers chemicals that often leave you nauseated for days. There will be frequent hospitalizations because of your new inability to fight off infections.
Each week, you visit with others who are in the same or more deeply sinking boats—knowing that suddenly, one of you may not be back.
Those are just the physical side effects—they don’t include the toll it takes on your social life. I’m not talking about dating. I’m referring to becoming financially unstable because treatment has a cost that is often not covered by insurance. There’s missed time at work. You may have to leave work entirely.
Are you prepared to learn the fine art of negotiation? You’re going to need it if your insurance company decides to put a price on your life. It may become necessary to mortgage the house, or find a spare thousand to travel for that second opinion at the Cancer Institute. Do you have family or friends that can lend you some support? How much more bad news can you give people you love without feeling guilty? You are not the only one making sacrifices here.
Yet you’re grateful to be alive. Go figure!
These are the paradoxes of illness. We all want to survive. We’re genetically bred for it. Thank God we have the options, but are you prepared for the physical and emotional costs? These and others are the daily contradictions we become accustomed to dealing with.
Most physicians won’t approach you about faith because they won’t be comfortable enough in the pervue of non-science. Yet, if you mention spirituality to any oncologist, you’re likely to get nothing but encouragement. Ask anyone who is faithful and sick, and they will most likely tell you it’s their hope and devotion to God that gets them through the hardest times of their illness. Confidence in a higher power lends confidence to the self.
Spiritual support is encouraged, as is psychiatric support. Yet, in discussing this with my colleagues (in psych), there is an overwhelming implication that faith is seen as a form of denial, a defense from the ugly truth. Speaking to my peers in intravenous rooms, many have forgone therapy for religion.
However, as is evidenced by where we had this discussion, all have put their faith in the science of medicine, but are hoping that God sees fit to answer their prayers for health. So where will the two cross paths?
Studies of people who have survived long term trauma like war camp imprisonment or lost at sea in a life boat, will tell you that the optimists do not survive.** Constantly believing they will prevail, leads to repetitive disappointment and an eventual giving up. When you give up, you die. The optimists are the first to jump ship. The pessimists will go next, for the obvious truth that there was very little faith in a positive outcome from the start, but they in some way accepted that they would most likely not make it out alive. The pessimists gave up next. When you give up, you die. So who survives? The pragmatists will inherit the Earth. Practical people have faith in their own belief systems. While arguing with my psych colleagues, this means, “So what if for you, God translates to denial… it doesn’t mean that to me and that’s what’s important here.” If I can accept what I cannot change, and change how I react to that, I will not give up. Why? Because when you give up, you die.
How does one do that? How can you make peace with “Please answer my prayers” when the life is being drained out of you?
Okay, so here is where I lay a little acquired knowledge on you.
I often worry about my relationship with God and spirituality overall because I don’t feel like I pay it enough mind. There are times I used to feel as though I was moving away from God because I found myself praying when I needed it and never mind the rest.
I don’t think I’m rationalizing when I say that I no longer think that way, and now realize I don’t pray to be rid of this illness or to not have to deal with it, but instead find myself asking for the strength to manage what I already have. I have influence, but one thing cancer has taught me is that life is clearly not up to me and another plan is also in play. So while I can now deal with the idiotic occurrences in life (e.g. when my health insurance gets discontinued for no apparent reason) better than I ever did, I am not one to be thankful for my illness and will probably not start now. I do see the benefits of tolerating my situation verses expecting miracles. It’s kind of like if I’m driving down my street and see all kinds of emergency and fire vehicles around the house and I think “Please God, don’t let that be my house!” I don’t think the fire will miraculously stop and move to my neighbor’s place. Perhaps I should be thinking “If it is my house, God… help me to deal with it.” It is truly one of those “Thy will be done,”***sort of moments isn’t it?
It’s all so confusing, because who doesn’t want to believe that life will be fair? Who wants to give up their plans, because God has another one for you? Who wants to suffer, realizing that it’s part of the overall design?
The paradox of illness, faith and life is that there will be suffering, and with suffering comes acquired knowledge and strength. It doesn’t have to make sense. It most likely won’t make sense.
Accepting that you don’t have to like it, but you may have to live with it is what will ultimately help you do just that.
*My Bright Abyss: Meditation of a Modern Believer by Christian Wiman.
**The Survivors Club by Ben Sherwood, 2009
***”The Our Father” The Bible, Matthew 6:9