There is one truth that is the same for all of us… It’s just that when you or someone you love has a terminal disease, you are able to see the end coming. The rest of us sometimes never see the bus that hits us, but even so, whether we know when the end is coming or not, it comes just as surely as the sun rises and sets. We are all of us mortal creatures. And so it goes…
When you see the end though, and you are told by the medical-powers–that-be all the many signs to look for, and when those signs come, you know you are coming to the next, sometimes final, battle with the Monster. And when you see it, and know it, and when you are actually in it, at least for my husband and I, there is a search for a solid definition of “quality of life.” What does that actually mean, anyway?
To be frank…I have found that it means nothing. And everything. It is the most subjective of all the “what ifs” and “how abouts” and “what to dos” in the entire hostile universe that belongs to the Cancer Monster. There are as many answers to “what is quality of life?” as there are to “what is the meaning of life?” Honestly, I think the two questions are linked at the hip, and the answers are as unique as the individual asking the questions. Basically, there are, at the time I am writing this blog, 7,722,964,829 true and distinct answers. So what do you do with that? What it means, in essence, is that if you ask, there can be no answer from without. This is a question that can only be answered from within, with regard to your situation at this point in your life. Cuz hey, life changes, right? Tomorrow, quality of life may mean something else entirely to you. So let’s catch ourselves up here: not only is the quality of life question one that only you can answer for yourself, but it is also one that only you can answer for yourself today.
You see, when my husband was first diagnosed, quality of life for us meant to travel around, take some holidays, and live a lot in a short period of time. We did that…had lots of fun…made some wonderful memories…took lots of pictures for posterity. After that, it was about visiting family. We did that too…had fun…made memories…took pictures for posterity. Then it was all about putting our minds at ease by getting our house and papers in order. The next phase was all about cultivating our home life: experimenting with foods from around the world, opening our home to visitors, reading more books, improving our conversational skills, reconnecting with our spirituality, and re-establishing our relationship with God. Then it became about pain management and reorganizing our day-to-day living and thinking in order to adapt to my husband’s mounting pain control needs. Therefore, as the Monster’s hold increased, our lifeworld became smaller, yet more intense. More focused. More examined.
Now, for my husband and to some extent me also, it’s about a new level of acceptance. I include myself in this only “to some extent” because I will never be fully able to surrender my husband to the Monster. That said, I understand where my husband is, because I have been with him on this long and terrible journey, and we have passed through this new doorway hand-in-hand. In this new place are new questions.
For those of you striving together with a loved one in your battle against the Monster, perhaps you are finding that the questions you used to work out together are dwindling as time blows past you both with frightening speed. It might also be increasingly possible that, now, the one your dying loved one cannot ask you to help answer some of the questions now being asked. They may or may not even desire your opinion because now they are making decisions about their own mortality, and these decisions are inexpressible and solitary. For those of you who are in a romantic partnership such as marriage, you will find this next truth a bit hard to take…I know…but in death, you are no longer “one flesh” but separate entities standing on your own and unique in the universe. While you may be physically and emotionally clasped together at the moment of death, death is still something we ultimately do alone. The wedding vows do say, as it happens, “until death we do part,” and I have blogged previously about the small print in the marriage vows.
Sometimes, quality of life means accepting that life will not go on, and that the end is sooner than later. Let me clarify: they may find a cure that will kill the Monster forever, and that cure may come tomorrow. Hold on to the very valid hope that there may be a new treatment or therapy available next week. It is not for me to say, and I will by no means dismiss the power of your faith or suggest that you give up. After all, I also have faith and believe with all my heart in a God who heals. Thus, I can only speak for my husband and I, and share what we have learned together along our journey. Perhaps what we have learned might encourage you in your own battle as you find your own answers.
Quality of life sometimes means life will not go on…yes, that’s clear as mud. For us, I think this means that as soon as we accepted that life is coming to an end, that it is months and not years, and that we desperately need peace until then, time slowed a bit…just a bit…but enough for us to see more clearly. In this clarity, my husband has reached a decision that if the current treatment does not work, then no more. We’ll know by Fall. And then we’ll know the rest too.
You see, there’s a difference between a fight and a flail. A fight is when we take up arms and do battle against a thing that is doing battle with us. We rally our forces, call on our allies, prepare our defenses, and then charge headlong into the fray. We use all our strength, endurance, intellect, and courage to defeat the thing we are fighting. A flail is when we are defenseless, our weapons are used up, our allies have scattered, our strength is gone, we have nowhere else to turn, and we are beaten…yet, we press our backs into the corner where we are trapped and continue to strike out blindly and weakly. The fight is hopeful but the flail is hopeless. One believes that we can win, the other denies that we have lost. One is meaningful and the other meaningless. One allows for quality of life and the other steals it away. For my husband, his fight is becoming a flail, and he recognized this before I did, because it is his own mortality and not mine.
What do you do when the person you love draws their line in the sand and says that’s enough? This was a question I didn’t know I needed to contemplate; it was a conversation I didn’t know I needed to have with my husband. You who are fighting the Monster, I urge you to have this conversation with your loved one at your earliest convenience. They need to know that you are still willing to follow them as they go ahead of you on the path…as the distance begins to widen…until the inevitable bend in the path and you lose sight of them. This is completely natural, and you cannot go with them. Don’t try. Just, until that bend comes, smile at them whenever they pause to glance back at you.
Quality of life is a phrase normally used toward the end of life. It is the last great concern, the final task on the Honey-Do list for the one walking the journey with the dying. Pain control, medication and hygiene, fluctuating food choices, controlled entertainment, shortened visitations, intensely intimate conversations…these, or a variation of these, are what remain to create quality of life. However, most important and first on the list is peace of mind. The way to attain peace of mind, for my husband and I, has been through acceptance—knowing what we can and cannot control—and just allowing our lives to greet us, day by day. In the end, we have no power anyway to change the truth that life comes day by day, hour by hour, minute by minute. Quality of life is in knowing that we can still live with happiness in those minutes, hours, and days without flailing about needlessly. There’s nothing more for you to do now. Recognize your loved one’s autonomy and allow them the dignity of refusing to flail. Breathe in, breathe out, love each other, find reasons to laugh, eat the expensive food on the menu, and don’t worry anymore about the bend in the path.
#Cancer #Living with Cancer #Surviving Cancer