The Tale of Us Against the Monster: Reorganizing Stuff

Hello Readers of my blog!!

Just a quick note to let you know that I have begun a brand new blog that will focus only on the series “Us Against the Monster.”

Please don’t leave me!!  🙂

You can find my new blog at thetaleofusagainstthemonster.com.  If you have any issues finding me, please comment below.

I will be transferring all the content of living with cancer from this blog to the new one, but if you bear with me over the next week or so, I should have some new stuff fairly soon!

I look forward to seeing your lovely avatars gracing the likes and comments of my new space!!

Onward and upward!!

Take care!!

 

The Tale of Us Against the Monster: Acceptance and Quality of Life

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

The Tale of Us Against the Monster: The Treadmill

I haven’t written my blog for so long. It’s been months. I think it’s because I’ve been stuck “grinding the wind.” What is “grinding the wind”, you ask? Please let me explain….
Back in the day, prisoners sentenced to hard labor were forced to walk the treadmill. It was arduous work where the prisoner was forced to walk in place on the treadmill while strapped with weights. And to do this non-stop. It was absolutely cruel in that it served no actual purpose, it was unduly physically and psychologically taxing, and it was meant to do nothing more than punish the prisoner. Usually, the prisoners who were condemned to this so-called labor had done nothing more felonious than simply be poor or out of work. We hear about how the poor used to be sent to the poorhouse and the treadmill…well, that’s what it was. Anyway, as laws modernized, so did the prisons. Poorhouses were shut down. There was no more debtor’s prison. And the treadmill was abolished…sort of. What they did instead was transform it into something nearing purposeful—a corn and wheat mill. And so genuinely criminal prisoners now walked the treadmill, sans weights, to grind wheat into flour. This seemed perfectly acceptable to the more enlightened society of the late nineteenth century. However, treading the mill was still as mind-numbingly, inhumanely boring as ever before. It was still physically draining to walk in place for hours even without weights. It was still a task that never ended. It was still akin to “grinding the wind.”
That’s sometimes where my husband and I are these days. We are walking together in place and any forward motion we occasionally sense is merely an illusion. Wishful thinking.  For those of you living with the Monster, you know precisely what I’m talking about. I think it’s like being in the eye of the hurricane, isn’t it? There are no changes. But nothing is better either. So you plod along together in the abridged version your life has become, and your ears ring with the silence of it. I know. This part of the journey is so weird. People not only stop asking after you and your spouse, some stop calling all together. Visits become more and more rare. When my husband was first diagnosed we were inundated with a deluge of well-wishes and visitors and people reaching out to us. Now, not so much. We have no hard feelings about this though. We aren’t insulted. We can’t blame anyone for how the Monster has bled their best wishes—their best efforts—dry. They’re tapped out. Every so often a close friend or a family member will check in on us or call. Other than that, we live on a quiet little island—separate, it seems, from the rest of the world.
Where we are is not, in fact, uncommon. It happens sometimes to people with a lengthy illness. It’s like walking a treadmill for both the one who is dying as well as for those watching the dying person die. It’s simply exhausting. If you are battling the Monster, don’t be alarmed or saddened by this “dropping off” of supporters. The throng of people will thin out until there remains only a small and intimate inner circle. Don’t be surprised by this. People want to help and support you, but death and dying drains their strength and willpower. It is not a measure of how you are loved or cared for. As for my husband, and aside from family, there is only one friend—his best friend—who still calls him and visits him regularly. It’s okay. We’re okay. It just is what it is. The Monster terrifies people, bottom line.
So what can you do? I think it just comes down to focusing on quality of life and finding that life wherever you can. They say that the meaning of life is found in the search for the meaning of life. I know that sounds like a wad of crap, but I honestly think there’s something to it. My hubby and I find ways to pass the time, to while away the good hours. For instance, we were movie aficionados this past year and we basically nailed it when it came to guessing who would win all the Oscars before the Academy Awards aired.
On sunny days, we make the front seat of the car into a bit of a bed and go for drives. We have sat beside every beach in our area—there are many—and watched the birds and the waves and the people while sipping double/doubles and eating Tim Horton’s Fruit Explosion muffins. And we talk. We talk a lot. I ask him if he’s afraid. His answer has changed over the years that the Monster has been in our lives. At first he was plenty scared. He now says he’d rather not, but he’s okay…a little sad. He asks me what I think I will do with my life afterward. He wants me to find happiness again and not to grieve for a foolishly long time. I tell him I’d like to see Rome someday, and he says that’s a great idea and wishes he could go with me. I say I wish he could too. Then we hold hands for a while and watch the endless ocean and the white puffy clouds settling over the horizon. The world is silent again except for the sound of the wind and waves.
We are peaceful together now. I suppose that’s the only mercy of knowing the Monster for as long as we have—it finally sinks in. We reach a place of acceptance, and when we do, we can finally lay down our arms and take a deep cleansing breath. It is during these times of peace that we are able to step off the treadmill for an hour here and there. And then, I guess it’s about finding quiet interests and moving together within the space allotted…talking and laughing and exploring all the many levels of intimacy. And there are just so many.
You who are grappling with the Monster, all your Ts are crossed and your Is are dotted by now. Everyone has been and gone. It is human nature to have the sense that you are “grinding the wind” when it seems like everything is in a state of limbo, because all you’ve found is an intense boredom that matches your growing uneasiness. Yes. It’s true. You really are on the treadmill, but it’s the Monster’s treadmill. Step off—remind him he’s not in charge.

Find something that makes you smile, and go do it for a while. Accept your journey. Breathe. You’re okay.

The Tale of Us Against the Monster: Wine, Stress, and Respite

I always wondered how people can fall into Addiction—the self-medicating kind. The kind that is relied upon to take the pain away. The people that I am acquainted with who suffer this kind of Addiction do not fit the picture some of us might have in mind when we think of drug addicts or drunks. There’s no cardboard boxes in back alleys or shopping carts filled with tin cans—although I think now that each of those people has a story to tell. No, the people I know are intelligent human beings, smart as whips, capable of critical reasoning and problem solving. Yet still, find themselves lost in this blurry, unremitting vortex of need, self-destruction, and mounting pain. How can it be? I never fully understood the kind of misery that can literally drive you to drink until I encountered the Monster. Now I get it.

On my husband’s 60th birthday earlier this year, I drank wine with my friends. My husband felt good that day, and there was food and laughter. It felt like the time before the Monster. And surrounded by close friends, I felt safe, and my guard came down. Later that night, I basically vomited everything I have ever eaten in my life, and then sat in my big soaker tub with no pants on, heaving over a bucket, while my friends took it in shifts to take care of me—because they are my friends, and they are my safe people. In spite of everything, amid all the vomit, and other bodily fluids, and me crying like a drunken fool, there was still a sense of being home. I know such a notion might not make sense, but despite my self-induced misery, I was in my safe place surrounded by my safe people. Later, they washed me up, put me to bed, and tucked me in with a bucket beside me. They did not judge me, and I love them for that. Laughed at me the next day—oh yes. Judged me—never! What should have made me feel deeply ashamed, came to me instead as a lesson of how sorrow can suddenly disrupt our normal, steady lives, and take us places where we need not go. I realize now that I could have imbibed a gallon less wine, and rid myself of a gallon of tears instead. Or, I could have just talked it out instead of drowning it in poison. Honestly, I had so many other options that did not have to end in the worst hangover ever.
That’s the thing with substances though. If therapies are the three star cuisine, then substances are the fast food fare, or worse, the stuff in the dumpster behind the three star cuisine restaurant. Like fast food, substances are cheap, a quick fix, an easy way out of a complex situation that has no easiness about it. Sometimes, you just can’t talk anymore. Or cry. Or scream at the sky. Sometimes it’s easier to raise a glass than your fist. And for a while, just like that cheeseburger from the drive-thru staving off the hunger, the sorrow is put at bay for a time. It is lost in the forgetfulness of the drunk or the high, because the haze and discord seems preferable to how your real life feels. The truth is, however, that we feel like we are walking normally when we are actually staggering about and bumping into things. I understand.
That said, I fully support finding your safe place, putting yourself among your safe people, and letting your hair down for an evening. Just make sure your safe people are the type who will wrestle you to the ground to get your car keys away from you, and will take that final glass of wine away from you and tell you that they are cutting you off. You see, there’s much to be said about drinking with old friends, talking and laughing about things no one else in the world will understand, then blubbering like a baby, and wiping your nose on their shoulders when they hug you. There’s much to be said about this type of fundamental, uninhibited catharsis, and if you haven’t gathered a few intimate friends together to do something like this during your battle with the Monster, I highly recommend it. Nothing soothes the soul like laughter and tears and laughter—in that order. It’s like taking an emotional bath. Wine—or something similar—can act as a lubricant for our emotions. It’s all good…infrequently…but not as a lifestyle. Remember, you can’t live on drive-thru. Eventually, it will kill you. Not the friendship part; the constant cheeseburgering part. See how I worked that metaphor in there?
As for my husband’s reaction to my little wine incident on his birthday, it was a mixture of humor-infused disapproval, complete understanding, a modicum of support, and a whole lot of worry. “Is this what you will do later?” was his question. “I don’t want you to stumble into this kind of lifestyle when I’m gone. What can I do to make sure you’re safe and healthy?” My answer to that was ‘Nothing, my darling. There is nothing you can do except not worry about me.” You see, I have given this a lot of thought. There will be nothing more he can do for me after he’s gone, and the Monster prevents him from doing anything while he is still here. For you who are battling the Monster still, do you sometimes feel aware of a widening gap between you and your loved one in terms of mutual support and help? Are you starting to feel like you are going it alone before you are yet alone? It’s such a dark place to be…a place we might not like to admit to…this place where Death has not come inside the door, but is lingering in the front yard and watching the house. It’s like a Bergman film. So yes, self-medicating is extremely easy. Perhaps it even seems natural in a terrible, awful way. Therefore, I think it’s a topic that warrants discussion in the moments when we are overcome by an enemy as vicious as the Monster.
I don’t know what the remedy for this could be other than the death of the Monster—having his toxic presence wiped from the face of the earth. However, I think something of an answer might be found somewhere within the core of the issue: sadness, grief, pain, loneliness, anxiety, stress, fear, guilt, sympathy, horror, and the agony of unavoidable and catastrophic loss. These are the things we most despair will invade our lives. The Monster encompasses all these things within the evil he inflicts upon what we love most in the world. There’s nothing we can do but watch it all happen, and then try somehow to maintain a sane existence. We clutch our fading illusion of normalcy tight against our chests while staring down the beast. Wine can make it feel easier to do this, but really, it’s just another illusion. The only thing real is the hangover in the morning.
So what to do? I think the answer might be, as astounding and impossible as this will sound, to find the escape hatch. Look, I know all about worrying and caring for a sick and dying loved one. I have done it for my father as the Monster killed him. I took care of my newly widowed, utterly bewildered mother after my father died. Now, I am taking care of my own husband as the Monster slowly devours him from the inside out. I know all about it—this terrible, slow suffering, while your world comes apart at the seams. I don’t believe anymore that any amount of literature on the topic, or self-help books, or well-meaning words from friends and family is going to change anything that is happening to you. In fact, sometimes, it just makes you more aware of the horror of the situation. I have long since put the literature down. I have left all the “advice from the experts” sitting on the shelf. All I want to do right now is think about something else. I need to clear my mind and just relax for a little while. I need some space from the Monster because the toxic stress I constantly feel is the killing kind. How can I care for my husband if I am not well enough or strong enough…or sober enough. So again, what to do?
Yes, I do have an answer…at least, I have an answer that seems to be working for me. I can’t speak for the rest of the world, but in Western Canada, we have Community Health Care workers. They have many outreach programs that assist people dealing with a loved one with a terminal disease, and I can’t recommend this loudly enough that if you haven’t already looked into this, and if your medical professionals have not already approached you with this, that you familiarize yourself with all applicable programs immediately. Do it today. Right now. Most of the information can be found on-line, or at your doctor’s office, and there are phone numbers to call. Call them.
In my community, there are professional care givers, whose services are covered under our provincial health care system, who will come into your home. They will stay for four hours a couple of times each week, and let you leave. I know what some of you might be thinking, and believe me, I probably thought some of the same things: I don’t like the idea of strangers in my home, I don’t like the idea of someone else caring for my husband, I don’t like the idea of someone babysitting my husband, I feel guilty for leaving, what if something happens and I am not there. Yes, I went through the entire gambit of why I should not avail myself of this free time. For those of you unfamiliar with this service, it’s called Respite and it’s a term you will need to remember if you decide to investigate it.
In the dictionary, “Respite” is defined as “a short period of rest or relief from something difficult or unpleasant.” I asked the Community Health Services what I’m supposed to do with four hours of respite and they said this, “Nothing. Do nothing. Or something. Or sleep. Or do some shopping. Or meet a friend for tea. The idea is that you relax and have some time away to decompress and think about something else besides worry, pain, and disease. It will help you cope and maintain your strength.” Wow. Pretty much sounds like exactly what I needed.
On my first time with a respite period, I felt weird just leaving the house. But I did eventually, after I spent a few moments hovering around my husband like a helicopter wife. Finally, I left, got in my car, and drove. I didn’t even know what to do, so I went to a coffee shop with a book. I wrote a letter to my elderly aunt. After, I went down to the beach, sat on a picnic table, breathed in and out, and stared at the water. Then, at the end of my four hours, I went home. Believe me, the Monster was still there when I got back. Nothing had changed. The world had not collapsed in on itself. But I had changed. I felt…better. I don’t know how to describe it except to say I felt better. I had been out in the world, leisurely sipped a coffee, and breathed in the fresh ocean air. Other times since, I have met friends for tea, had my hair done, browsed the local library, and gone to a movie. I did nothing important at all, except experienced the reprieve of being away and getting a bit of freedom from the Monster. I am stunned by the effect these few short hours have on me, how they reduce stress, clear my head, break up the week, and give me time to do things out of the home that I have not been free to do for a long time.
I highly recommend looking into respite care, therefore. Let yourself rest and feel a moment of freedom. Let yourself be cared for. You are not a coward. You’re not weak. You are not neglecting your loved one. Respite is a time for you to decompress, and this is not only important, it is absolutely necessary. You MUST decompress or you will become overwhelmed. A glass of wine is okay from time to time, but what you really need is a physical break from your routine of fighting the Monster. He doesn’t want you to find relief—the healthy kind, that is. He wants to enjoy your suffering. Refuse him this—he’s had his share, God knows. Instead, run past his legs, and dive out the escape hatch. Run! Run away and don’t look back, well, at least not for four hours or so. Take care of you so that you can take care of your loved one.

 

#Cancer    #respite

The Tale of Us Against the Monster: Learning to Do It Anyway

I know it might seem a bit soon to write another segment of the “Us Against the Monster” series.  Usually I write them when I have come to yet another realization in our battle with the cancer demon…when I have an epiphany.  Well…it happens fast sometimes.

My husband and I are dealing with a pain breakthrough that has become a crisis.  You who are familiar with the evils of the Monster will be, sadly, all too familiar with this.  For those of you who are blessed not to be touched by this menace, a pain breakthrough happens when the regular pain medication stops being effective.  The pain can return so fast and overwhelmingly that the medication you have been taking up to that point no longer works, and it’s time to either increase the dosage or turn to another drug entirely.  This can take a while, because first you will begin by upping the dosage, and if this is not the answer, you must try other medications until you find the one that works. But all this happens while you are in pain.  This last pain breakthrough has gone on for almost eight weeks, and so when I call it a crisis, I mean crisis with a capital C.

It’s easy to lose hope, and to think “this is the end.” How long must this go on?  I have thought these thoughts often over the past few months, wondering “how much longer can he battle on?”  It’s easy to fall into a depression. Sometimes I can feel depression creeping up behind me and laying its cold hand heavily on my shoulder.   A friend posted to Facebook yesterday about the concept of “Depressive Realism.”  This concept “dictates that perhaps while none of us want to be depressed – it’s possible that those who suffer from depression may in fact be right” (Loewen, Psychology).  Basically, a person who experiences Depressive Realism does not see the world through rose colored glasses, but as it really is: sometimes exceptionally harsh.  They look into the darkness, and see the darkness looking back at them.  I know that I feel this way at times, and lately, in the face of terrible, ongoing pain, more often than not.

Last night, a close friend touched base with me, just to chat and check in on how we’re doing.  I gave her a “monster” update.  After, I asked about her and hers.  She told me that very recently, the tragedy of suicide had touched her partner’s family, and that he is devastated.  Suicide is such a horror for the loved ones of the suicide victim; questions are asked and with the grief and confusion, there is the inevitable guilt—why didn’t I see it coming? What could I have done?  And of course, Why??  Her answer was a heavy laden “life was too much for him.” I understand. Pain, no matter kind it is, can make life simply intolerable.

The French philosopher Albert Camus, in his book The Myth of Sisyphus posits that people want the world to be reasonable and when they discover that the world is a chaotic mess, they can’t see the meaning in life.  Everything seems absurd.  Therefore, people will reconcile this absurdity by either accepting that life is truly meaningless, or they will choose to take a “leap of faith.” He asks, if life is meaningless, is suicide an option?  If there’s no meaning, then what’s the point? But he suggests another possibility, and that is to face the absurdity head on.  In essence, don’t run from the madness of the world, but embrace the struggles of life day by day.  Don’t try to find universal answers that probably don’t exist anyway—just respond intelligently to your own set of absurdities.  He believes that this is the way to overcome and find a rich and purposeful life.  It’s all very existentialist, but isn’t pain the most existential experience of all?

As a person of faith, my thoughts on suicide are complicated and unresolvable, because as a person living with the Monster, I am in a position to see both sides of the argument as valid and reasonable.  My husband’s physician has clearly explained the prognosis of our particular Monster, and it’s not good.  Pain will be the unbearable, unavoidable element of my husband’s journey.  Our doctor has, very gently, made us aware of the option of physician assisted suicide.  For later on…when the inevitable is upon us.  He put it out there for us to discuss while mulling over my husband’s end of life wishes.  Yes, we have talked about it, but again, as people of faith, our feelings are extremely complex where this subject is concerned.  However, for this series, I feel that it is important to at least make mention of it.  Some of you who are fighting the Monster, and can see the shadow of the journey’s end closing upon you, this may or may not be a discussion you choose to engage.

Later, after my conversation with my friend had ended, I spent the last part of my evening working on a writing project.  Usually when I write, I like to have music playing quietly in the background.  I don’t care what it is, as long as it’s not hard and aggressive.  I happened upon my husband’s playlist…

I keep saying that my husband and I are people of faith.  What does that mean exactly? It means that we are among those who have seen Camus’ absurdities, and have found our meaning in life in spite of them by taking a leap of faith…by looking to a Power greater than ourselves.  Even though, I admit to feeling that my prayers hit the ceiling sometimes, bounce back, and ricochet off the side of my head.  Further, I admit that sometimes I wonder what if no one is listening, and then despair begins to bubble hot inside me.  I think, if this is what’s coming, what is the point? Why face it if we don’t have to?  Who would fault us for wanting to escape the agony?

Then, as I said, I happened upon my husband’s playlist, playing selections at random.  The lyrics of this song spoke to the chaos in the world, and doesn’t it feel sometimes like this world is becoming madder by the day?  We seem to be careening off the rails toward something dark and frightening.  Yet, the lyrics also expressed the need to embrace life…to face the dangers and grief head on and find our strength in perseverance…like Camus suggested.  However, the lyrics also implied that to take on this arduous task requires more than strength and determination, it takes a leap of faith, and that faith is not useless.  As I worked on my project, I stopped to listen as the words came to me like poetry…like scripture…like a still, small Voice…

“You can spend your whole life building something from nothing; one storm can come and blow it all away.  Build it anyway.

You can chase a dream that seems so out of reach, and you know it might not ever come your way. Dream it anyway.

This world’s gone crazy and it’s hard to believe that tomorrow will be better than today. Believe it anyway.

You can love someone with all your heart for all the right reasons, and in a moment they can choose to walk away. Love them anyway.

God is great, but sometimes life ain’t good. When I pray, it doesn’t always turn out like I think it should, but I do it anyway.

Do it anyway.”

It is not lost on me that I found this song on my husband’s playlist.  Nor that it came to me when I was feeling sad, and both emotionally and intellectually confused.  Nor that I was looking around me for some universal truth to help make sense of everything going on around me.  When I went to sleep, I dreamt the words “do it anyway.”

You who are feeling beaten down and consumed by the Monster’s ferocity, I know that not a lot makes sense right now. Up is down. Down is up.  The Monster tells you that there is no point to anything, and that he is all there is now in your life… just a constant brawl with pain, despair, and futility.  Don’t listen to his lies.  Building, dreaming, loving, believing, and praying…together, these things give life meaning and purpose.  They make life beautiful.  Even though moments of beauty seem rare, they become more plentiful when you are eager to embrace them, because you are focusing on them and not grappling with the Monster.  When you engage with the beautiful, precious moments, they will confirm to you that there is a point after all.

I don’t know all the answers.  I can only share the answers I have found that work for us.  My husband told me today that he doesn’t want to be a burden to me. When I told him that it was him and me until the very end, he looked at me with such love and gratitude in his eyes that I was stunned. Shocked by the beauty of the moment.  There followed peace, the kind that passes understanding.  The Monster does not want us to find solace, but even as he bares his yellowed fangs at us, we embrace the love and beauty that transcend fear and pain.  He growls with fury, but we do it anyway.

“Anyway” is written and performed by Martina McBride.

#pain #cancer

The Tale of Us Against the Monster: Becoming a Slayer of Spiders

 

I have always been afraid of spiders.  Let me assure you that I know the foolishness of arachnophobia.  By comparison, spiders are smaller and weaker than I am.  I know that they will avoid me if possible.  I know that they are not hunting me.  I know that they are not my enemy.  Essentially, they don’t give me any thought…if they think at all.  That being said, I have always been afraid of them.  I dunno, maybe one crawled across my face in my crib when I was a baby and startled me.  I have no idea where the phobia stems from.  To me, they are hideous, monstrous things that I can’t wrap my head around.  I mean, why all the eyes?  Ugh!  And I don’t understand where their mouths are.  Gross.  Also, they’re little vampires, sucking their prey dry who, by the way, are still alive when the spider starts eating them.  They’re like horror movie fiends.  I know all the arguments about the good spiders do, how useful and amazing their silk is, and how beautiful and intricate their webs are.  I agree, and it’s true.  We need spiders…there…I said it.  But I am still horrified by them.  Horrified… Interesting word.  I am horrified by them, but does horrified mean the same as terrified?  I have begun, of late, to rethink my phobia and gain some perspective.

 

Before the Monster entered our life, my husband was my champion when it came to tracking down an invading arachnid, eliminating it, and disposing of its carcass. (Flushed down the toilet only.  It can’t be put in the garbage in case it comes back to life and seeks vengeance…which is just how weird the phobia can be.)  Spider-Slayer was a mantle, among many mantles, that my husband took on for me.  Even amid his chiding “C’mon, it’s just a spider, you big baby,” he never shirked his duty.  When it came to de-bugging our house, my husband was my hero.  But now, as the Monster’s shadow spreads its venom further over my husband’s body, he cannot always rescue me from spiders.  These days, I must battle them alone.  I don’t even call my husband when I see one now.  You see, spiders just don’t frighten me anymore…not like the Monster does.

 

You don’t realize, I guess, how roles are different in the home when you’re in a marriage until those roles are somehow disrupted.  My husband and I have always maintained a “pink” and “blue” balance that seemed to work perfectly for us. For instance, I did the cooking and he did the washing up.  I did the laundry and he cut the grass.  I cleaned the bathrooms and he cleaned the car.  I did all the grocery shopping and he took care of fixing stuff.  I vacuumed and he took care of spiders.  Balance.  It worked flawlessly until the Monster threw us off kilter and set our life on its ear. I suppose, too, that our idea of balance will not work for everyone, but I guarantee, every happy married couple has a balance of their own.  Same, same, same…and when that balance is out of whack, it seems everything is out of whack. For a while…

 

Lately, and especially now that my husband takes to his bed for extended periods during the day, I have learned the “blue” jobs.  And I’m okay, mostly.  I was considering earlier this year as I dug out the soil of the garden, sifted it, and planted my veggies, that maybe I could manage by myself. I’ve been cutting the grass all year. And why can’t I take the car in and have the oil changed?  It’s not that I’m helpless, it’s just that I’m used to having help.  Then it occurred to me, a terrible realization, that maybe I was learning, very naturally and unconsciously, to prepare myself for life without my husband—learning who I must be when he is gone. Then I wondered if this is the same for everyone in my shoes.  Is there a part of our brain, that we aren’t even mindful of, that begins the transitioning process out of necessity?  Is it a self-preservation mechanism?  Because I am not ready to say goodbye to him—not at all.  I can’t help feeling that there is still so much more. 

 

So, I killed a spider the other day, and I wasn’t afraid.  I saw it coming down the wall—big, black, and evil.  There was a time when the mere sight of it would have sent me screaming from the room, calling my husband in a panic.  People who know me well will attest to this truth.  However, on this day, I simply used the flyswatter, tissued up the remains, and threw it away…in the garbage can.  Done and done.  Don’t get me wrong—I would not want a spider crawling on me, but something inside me has changed now, and I have bigger fish to fry.

 

There is a famous bible verse that says, “When I was a child, I talked like a child, I thought like a child, I reasoned like a child. But when I became an adult, I set aside childish ways (1st Cor 13:11).” That quote has come to mean more to me in the past couple of months than it ever has before. Simply, there comes a time to be rid of folly.  I know that what lies ahead will require a fully actualized adult, a mature mind, a grown-up capable of critical thinking…one who doesn’t run away if there’s a spider on the wall. 

 

When it’s a nice day, my husband gets up for a while.  He sits outside on a lawn chair, his feet up, wrapped in a blanket while the sun shines on his face, and watches me.  He tells me he wishes he could help me in the garden and I tell him he is helping by keeping me company. And so we chat about radishes and tomatoes, and while away the afternoon.  It’s peaceful, the Monster is silent, and we have more.  This is not the end.

 

You who are finding the strength to go it alone, you can do it, and you will surprise yourself.  Since the Monster invaded your home, you have often wondered, as you lay in bed at night, staring at the ceiling when sleep eludes you, just how you will manage alone.  It’s okay.  In a way, you already are, aren’t you?  Somehow, you will grow into these changes, little by little.  Some of these changes will happen almost without you noticing, and you will look back, astounded.  While your attention was focused elsewhere as you did battle with the Monster, you forgot to be afraid of inconsequential things. 

 

You see, it’s not that I don’t need help. Often I do, and when I do, I’m not shy about reaching out anymore.  However, I have learned to help myself too, and it makes me feel little bit safe. I have answered some of my own questions, and by doing so, the balance has returned, fragile though it may be.  Normalcy is important.  The Monster wants fear and chaos.  Ignore him.  Instead, cut the grass, or bake some cookies, or run the vacuum over the living room floor. Wherever you can take back control, take it!  It’s what I do now—I’m getting the knack slowly but surely—and if a spider happens to trespass, no worries.  I got this.

 

La Vie Est Belle: Kudos to Servers

Most everyone I know has been to a restaurant to eat a meal.  I have been to so many restaurants in so many cities that I can’t begin to count them all, and in all of those restaurants in all of those towns, some person has served me. 

I like servers because I used to be one.  In fact, before I returned to university, I waitressed for…decades.  I can tell you right now that it’s good honest work.  For those of you who have never been in the service industry, I can tell you from personal experience that serving is the first and central aspect of the job description, but there is much more to it.  In every restaurant I worked in, the wait staff was responsible for cleaning the restaurant—this included the bathrooms—and the service areas of the kitchen.  This is called “side work” and it is often a dreaded list of tasks done either at the beginning or toward the end of shift.  And no one goes home until it’s done!  Them’s the rules.

Needless to say, servers work hard for their money, often working weird hours, like 9:00 pm until 5:00 am…and they said there was no 9 to 5 in serving.  It is to laugh… 

Notably, serving is usually a minimum wage job.  Always has been, and probably always will be.  Wait staff rarely get raises unless they are unionized—which is rare—or have a generous boss—which, unfortunately, is also rare.  Once, I asked the owner of one restaurant I worked in, why the cooks got a raise but the servers did not.  His response was that the wait staff make tips.  When I mentioned that each of the wait staff was required to pay the cooks 20% of their tips after every shift, he said it was not the same thing.  This seems to be the attitude of many owners.  In one restaurant I worked in, the two cooks made more in tips than the individual waitresses.  And had a higher wage.  Not the same? You’re right. Not the same at all.

So, hard work, weird hours, no raises, no benefits.  No pension.  I began working at one place because the lady who had my shift was retiring after 30 years of service.  No parting gift, no pay out, no going away party, no pension, no nothing.  There was a “thank you and goodbye” and that was when I realized I had to get out of the restaurant business.   To be fair, not all restaurants are as horrendously unkind as this one was.  Some are extremely good to their people.  Yet serving, for the most part, is one of the most thankless jobs out there, even though servers are some of the workers in society upon whom so many depend and without whom restaurants cannot survive.  Strange, isn’t?  To me, they are unsung heroes…

How many times have you seen a waitress bring a pack of crackers to a fussy toddler, or mop up a customer’s spill, or listen patiently and apologetically as someone loudly criticizes food which the server had no part in cooking, or respond politely when a customer snaps their fingers at them, whistles, or shouts “hey you?”

However, the two things about serving that seems to make the job worthwhile, are the great customers and the gratuities.  Wonderful customers are the backbone of any restaurant.  They treat the wait staff like human beings and in return, wait staff are eager to serve them. You know what?  It isn’t hard to be a wonderful customer!  One simply must treat the wait staff with a modicum of respect and civility, smile if possible, say please and thank you, and if there are any complaints about the food, direct them to either the manager or the maitre d’ because your server has no control over how well your food has been prepared.  Finally, and most of all, leave a tip.  Yes, a tip that is 20% of the bill. 

Let me explain about tipping.  Now, most people I know will tip even if the service is mediocre.  Let me say also, if service is well and truly bad, by all means, do not tip.  That said, I know a few out there who won’t tip even if the server backflips around the restaurant at their customer’s request.  A waitress friend of mine, back in the early 90s, served a birthday party for a lady’s 80th.  It was a group of 25 people who arrived an hour after my friend’s shift began, and left four hours later, two hours before her shift ended.  They ordered cocktails and appetizers, followed by surf and turf, with many bottles of wine.  Then after, stayed for drinks and desserts.  The server was run off her feet, but the people who attended the party spoke her praises to the manager.  The bill came to hundreds of dollars and was being picked up by the son of the birthday girl.  He left my friend a two dollar tip.  Later, she was in the break room crying because, after she gave the cook his percentage, she’d made approximately a buck fifty on top of her lousy $35.00 wage.  Worst of all, she kept going over and over the evening in her mind, wondering where she failed at her job, or if she forgot something, or if she got an order wrong. The truth is, she did nothing wrong.  Some people just don’t tip, as bizarre as that might seem to some of us.

Here’s another thing you might not know about your gratuities.  The federal government taxes servers on an additional 10% on top of their gross income, as a gratuity tax.  Whether wait staff get tips or not, are forced to give a percentage of their tips away, or are forced to pool their tips with other servers, they get taxed an extra 10% on top of their taxable income.  True story.  Therefore, if you see a service charge on your bill, don’t complain.  The fact is, lots of people don’t tip.  Ever.  However, servers nevertheless are taxed for the tip they did not get. That’s just the reality of serving.

Now I’ve heard the argument that servers get a wage, or could get better paying jobs, and all the other arguments given by people who are plain and simply too miserly to tip.  They don’t have to, so they refuse to.  And they are right—they don’t have to tip if they don’t want to.  But you know what? To them, I say, if a server gives you good service, then get a crow bar and pry open your wallet, you cheapskate, and give the server a damn tip; he/she did, after all, help make your day a little nicer.  So, you can be a little nicer in return. 

And some people truly are nicer:

Three weeks ago in Napavine, Washington, a waitress was doing her job—the job she’d been doing at that restaurant for 20 years.  She was so busy that day, she didn’t have a lot of extra time to spend chatting with customers, and when a certain couple left, it wasn’t until a few minutes later that she noticed.  Their bill was $44.00.  They thanked her for her service and noticed how hard she worked.  They left her a $3,000.00 tip!! On the back of the cheque, they acknowledged that times were tough, and asked only that she take a bit of the tip and pay it forward somehow.  Well, after she’d picked herself up off the ground from the shock, she did just that: she shared some of it with her fellow wait staff, used some of it to spoil her grandkids a bit, and then used the rest to fill up the holes in her finances.  She said that the money changed her life, and she will never be able to thank the people who tipped her so extravagantly for their incredible generosity. 

These days, I am a patron, not a server, in restaurants, and I would like to give a shout out and many kudos to the hard-working servers in the restaurant industry.  Thank you for the refills of coffee and tea.  Thank you for bringing extra water. Thank you for cleaning up all the “goo” after I leave.  I appreciate you.  You will always get a minimum 20% tip from me…in cash…because cash is invisible…wink, wink, nudge, nudge.

 

Note: Thank you to my friend, Carol M, for her assistance with my terribly inadequate French.

The Tale of Us Against the Monster: Becoming Giraffes

My husband and I are visiting his family in Ottawa, and staying with his sister and her husband. Also visiting are her son, daughter-in-law, their two little girls, and their two dogs. My husband’s sister has a dog also. And we brought ours along for the trip. The front door has become revolving with other family members going in and out constantly. The kitchen is fragrant with on-going cooking and baking. Kids running around. Toys strewn across the family room floor. Either hockey or cartoons on the television. Dogs barking. People grazing the fruit, cookies, muffins, etc on the counters. Wine flowing like water. Lots of laughter and conversation. It’s a loud, busy family circus. I come from a family background that is hilariously similar, so it’s like home. To me, this is what family living is, and being with a husband who can closely relate, he and I have a noisy, busy life also when family comes to visit us. We are humans at play, in our own little gaggle, in our own ample den.

This morning, I had a few moments to interact with my husband’s three year old grand-niece. Such a bright and lively child, we were admiring the way her tiara sparkled in the sunshine. I asked her if she was looking forward to school, and she replied enthusiastically that she was indeed. So then I asked her what she wanted to be when she grew up. She wasn’t certain, so we entered into a short but in-depth dialectic about her choice of future careers. I asked her if she wanted to fly to outer space and walk on the moon, but she wrinkled her nose at this. How about a teacher like mommy and daddy? But that wasn’t it either. Okay…maybe a doctor that looks after sick puppies? She hesitated, but then decided she didn’t want to look after dogs. I asked her what her favorite animal was. “Giraffe,” she replied. Well, how about a doctor who looks after giraffes? Her response was, “No. I want to BE a giraffe.”

For those of you who may not know the essential attributes of giraffes, I am given to understand that they are tall, they are orange, and they play. I have this information on great authority, related to me by a small person who sees life on its most uncomplicated, truthful terms. In her innocent opinion, an opinion neither tainted nor scarred by this world, being a giraffe is where it’s at. I have to admit that I entirely agree with her. In fact, I discussed this further with my husband, and we’ve decided that we’d like to be giraffes too.

Right now, she’s going to and fro in her tiara, dress up clothes, wearing her grandmother’s fancy dress shoes, and rocking a pair of bedazzled pink sunglasses—seeing her world through them…through rose colored glasses. My husband watches her consuming the space where she plays, and his eyes sparkle with amusement. He watches her and looks at me with a grin as she changes or adds to her costume for the fiftieth time. She’s lovely, and warming, and free. When she is in the room, the Monster is no match for her…because she’s as big as a giraffe.

You see, this child still holds the sunny magic within. She is able to be a princess in one moment, and in the next moment a teacher, instructing her baby sister in the dynamics of crawling. How could she otherwise? Her world is filled with movement. She knows who she is at the most fundamental level—the intangible, indescribably complex human soul—yet without the superfluous impediment of words. She just knows. She alone holds the power, above any of the adults in her company, to open the wardrobe door, push through the fur coats, and enter the fantastical snowy wood. And that is why she can be a giraffe is she pleases…because she still believes. The Monster’s dark sorcery is overcome by this brilliant light.

We all need a little of her magic. Her vast capacity to believe. A portion of her light. It is time for her nap now, and so she goes to her unencumbered sleep, wrapped cozily in the light, protected by the noisy, busy love of her family. She is not disturbed by the chatter and laughter on the other side of the door. Likewise, my husband lays down for the afternoon, tells me I look pretty, and kisses me with his eyes. I can’t see the Monster today, and it’s on days like this, that I manage to reach out and catch a bit of the magic as it breezes past me…just for a moment…like the glitter of fairy dust in my palm. An inkling of belief. A stir of faith.

You, who are searching for magic and longing for the light, I can tell you that it is there, beyond the Monster’s reach. It’s not the magic spell kind. There are no incantations that can be learned and spoken against the Monster. But there is magic, transformative magic, that lingers in the light. And the light is where your love resides. It’s okay to believe that the Monster has fled for the day. It’s okay to take advantage of his absence, as temporary as it might be, because his return is a sad certainty, but the time to worry about that is later. For today, we return to the magical light. Today, we live in the clamor of love and family. Today, we wear tiaras. Today, we become giraffes.

The Tale of Us Against the Monster: High Blood Pressure, Sisyphus, and Massage Therapy

The other morning, my husband announced that he had made me an appointment to get an hour’s massage…and that I had to be there at noon. My immediate reaction was irritation caused by the fact that he had made the appointment without consulting me. I am in the center of a scheduled diet and exercise routine to rectify high blood pressure and out-of-control blood sugar levels. And I had plans! I was going to the gym, and then I was going to work on a paper, and then I was going to do errands, and then I was going to do a little shopping for my mother, and then I was going to get some vacuuming done at home, and finally, make supper. All that went out the window when my husband made the massage appointment for me…without my consent…without first checking on my busy day. I took it personally. And then I found out that I couldn’t reschedule without a fee, and was stuck with that day and time. I was so flustered and pissed off, that I forgot that I was being upset by a “spa day.” Well, I went. I begrudgingly kept the appointment.

So I’m there, at the spa, gritting my teeth as I fill out annoying and invasive questions on a questionnaire. Why do they need to know my family’s health and wellness history in order to give me a one hour “rub down” with essential oils in a darkened room while ocean waves play in the background on a CD player? I just don’t have time for this!! I am served green tea with eastern flavors and a cayenne pepper finish poured into in a little earless cup of turned pottery as I sit there barefoot on a bamboo floor, spilling forth personal information, while the front desk staff, operate in hushed tones by cheerful, fragrance-free, vegan, yoga-posing students of Eastern philosophies, smile and wait on the forms I am filling out. “No rush. Please take your time.” Ugh…fine. I’m happy. I’m peaceful. I’m at one with the universe. Whatever…

My “Registered Massage Therapist” comes to the waiting area to collect and deposit me in the massage room. She leaves for a few minutes as I shed my clothes and get onto the massage table—all covered up nice and discretely and modestly, even though I know that, in the middle of my busy day, a stranger is going to pour essential oils on my naked body and put her hands directly on me…and all over me. It’s an odd dichotomy…the impersonal intimacy of a body massage.

So now I’m staring at the floor through the little donut hole face rest…waiting…again—thinking about all the things I still have to do today. Listing them in my mind. Pissed off at my husband for not respecting that I had a day ahead of me! I have high blood pressure that requires medication and regular cardio work-outs!! I absolutely MUST do a regular stress detox!! Doesn’t he understand that I’m headed for a stroke? I need to stay healthy so that I can look after him!! Doesn’t he realize that the bills aren’t going to pay themselves, and the milk doesn’t just, of its own volition, walk over to us from the grocery store? And who is going to pick up and drop off mom’s coffee cream and Apple Cinnamon Cheerios?? And when am I going to find the time to put in a couple hours on my paper and tutor foreign students?? I’m just so angry now! My face heats up. I can hear my heart beat in my ears. Ah crap!! There goes my blood pressure again!

And then the Massage Therapist returns. After a few moments, she learns what style of massage I need in terms of pressure, and where I ache on my body—which is literally everywhere. Yet, I can’t resist the urge to inform her that my husband booked the appointment without my knowledge and in a roundabout way “can we just get to it please?” I feel grumpy, but then she delivers the deathblow to my stressed-out, irritable, self-righteous, completely obtuse indignation. “What a loving thing for him to do for you…to take you away from all your running around and worry, and put you in a place of peace…sometimes it’s enough that we accept and receive…”

Damn that new age eastern philosophy!! She pretty much nailed it though. And my husband was completely right.

In the battle with the Monster, we can feel like Sisyphus…rolling a boulder up a hill, watching it roll back down again, and then rolling it up the hill again, forever, never finishing our task—our arduous, meaningless task—and always, we are at the task alone. The Monster wants you to believe you are alone, and that you and only you are capable of completing the tasks that hold your life together. The Monster insists you buy into the belief that all your many tasks must be performed in order to maintain your grasp on reality—like a sacrifice on an altar—and it is this sacrifice that brings peace and somehow holds the Monster at bay.

He’s lying to you…and messing with your head. He’s convincing though, isn’t he? If the Monster has deceived you, you’re not alone. He’s deceived me too. Many times. There is an old proverb that says “A problem shared is a problem halved.” Let people help you. Even if help comes from the one you must help. It’s not selfish to escape for an hour now and again. Actually, the brief escape is a stress release. You just have to receive every now and then. You must forget about the Monster and just do you. As it turned out, my life didn’t collapse in on itself just because I missed a gym day. We did without milk for an evening. My mom had toast and fruit instead of Cheerios. It worked itself out for me, and little things like this will work themselves out for you too. That being said, you are not foolish. I know how distorted and big the little things seem when stacked alongside the Monster’s looming shadow.

I always fall back into that “being all things for everybody” routine…or, rut. It consumes me. It blinds me so that I am unable to see the gift in something. I can’t see that my husband is providing for me…still. He’s in the very center of this with me, after all. Our battle with the Monster. Nevertheless, he stands by quietly as I scurry back and forth, making not a dent, and changing zip… “full of sound and fury, signifying nothing” (from Macbeth). The Massage Therapist urges me to breathe deeply and to put away my ideas of what I want to do today, because I will need to go home and recuperate after the massage. “Give yourself permission…” and so, resigned, I do. However, when I do, the day evaporates, I release my clenched muscles, and I am able to receive. The sound of the Monster’s taunts are drowned out by the rhythmic crashing of waves and the light airiness of the pan flute.

Thank you, my love…

 

#Cancer  #Surviving Cancer  #Fighting Cancer

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