Dear Body…

Dear Sandy’s Body,

I’ll admit to being somewhat peeved with your behaviour this week. I thought we had a deal, and you don’t seem to be holding up your end of the agreement. I feel I need to bring this matter to your attention; if you don’t know of my displeasure then I can’t be upset if you’re negligent in trying to address the issue.

When we were diagnosed with Erdheim Chester Disease, I agreed to go through whatever pain and disability you were planning to drag me through (which I might add you’re adding on a bit thick lately and pushing the boundaries!) if you allowed me one thing. An appetite for chocolate.

I even caved a bit on this request recently by adding a clause that I would agree to take additional medications to settle your stomach, and you know how much I detest feeding you drugs.

I thought we had a done a reasonably good job of keeping you in good shape. Pretty much alcohol free (there’s no need to mention that one episode of drunkenness when we were sixteen, is there? And there was that birthday party for a friend a few years ago where we learned that two glasses of wine, a staircase and high heeled shoes do not a safe combination make).

We kept prescription and over-the-counter meds to the absolute minimum, and outside of the recent (and publically documented) experimentation with marijuana to settle you down, no illicit drugs. Not on purpose anyway, there was that one time in high school where we believed that we were being given a caffeine pill by a friend to help keep us awake when trying to do both full-time school and an almost full-time job at a department store (bedding department, some wild stories from those days!) at the same time. Turned out it was amphetamines and we didn’t sleep for three days. Scared me straight, I tell ya.

Until you readjusted our internal clock last year, you could depend on me for setting aside a solid eight hours per night to refresh you. I still dedicate that time to you every night; it’s been your choice to not take advantage of the opportunity.

Although not obsessive about exercise, we got some great workouts  especially in the years prior to the diagnosis. Not only did running around after little children as we photographed them get our heart rate up, it also filled our heart with joy.

On that note, I’ve tried to do my best for our emotional health as well. God knows we’ve been tested in that arena with life’s challenges, but I wasn’t afraid to listen to different perspectives to learn how to soothe our soul.

We went on some lovely trips over the years. Europe, Australia,  across North America and most importantly, across our beloved country. We traveled to every province at least once, I apologize for not getting us to the territories. It almost happened two years ago when we were invited to photograph a trek in the Arctic to raise funds for Rare Disease issues, you know how that turned out. What can I say, spirit was willing…  Chocolate may or may not have had a role in easing the disappointment.

So what’s the deal? It’s not as if I want it all the time. In moderation, we had agreed that a small daily ration would be tolerated.

How is it that in the last few days we’re turning our face away from our one indulgence? Not only that, being denied the healthy stuff too. It took forty eight years for us and yogurt to see eye to eye, and we could barely swallow a few spoonfuls this afternoon before asking my daughter to take it away.

It’s not that I don’t appreciate the nice things you give us. For instance, there’s a beautifully fresh smelling breeze kicking about in our room today, thank you for allowing us to feel wind in our hair this afternoon.

I would appreciate it if you would kindly take these points under consideration, my sense is that I’m not asking a great deal of you. However, perhaps you have altered the plan without consulting me and I ask to review the changes with you before further action ensues.

Respectfully,

Me

Indebtedness…

Like many others, I’ve always felt that I had a duty to return kindnesses with something that was of at least equal value or effort. When it wasn’t possible despite best efforts to give back to the person who did something generous for me, it made me uncomfortable. Isn’t that the way the world is supposed to work so that everyone both gives and gets to meet needs (and as a bonus, experience the joy of feeling like an active participant in the game of life)?

Even my cat seems to agree. Scrabble finds it impossible to just accept cuddling and being petted without at least a good part of that time  returning the favour with attentive licking. With his rough tongue, he might well lift off a layer of skin if we allowed him to persist. If only he didn’t like to go after that ticklish part of my throat just above my collarbone!

Delivery of prepared meals (and favourite treats), help around the apartment, errands run, visits from near and far, time spent checking in on me, offers to take me outdoors (it’s been six weeks, I pray that it’ll soon work out. My body hasn’t been cooperating in the least!), loans of movies and audiobooks to keep my mind busy, numerous gifts and help from friends and strangers. I fear I’ve left out mention of a particular kindness, there’s just that many of them that come our way.

Today a call from friends offering to come over for a slumber party so that my daughter could have a night away from the stresses of looking after me. These friends, among others, recognize that my daughter needs a break now and again to be able to keep herself healthy both physically and emotionally. Being mature for her age it can be easy to forget that she’s only nineteen, carrying this huge weight on her shoulders.

I’ve come to the point of realization that there’s no possible way that I can ever repay the wonderful things that so many have done for us. It’s been an issue that I’ve raised a few times on this blog, I have to get better at accepting generosity with a simple “thank you” without feeling as if I’m not holding up my end. Quite difficult a task.

This feeling of indebtedness that can’t be rectified during the balance of my life makes me pray ever harder each day that I will have opportunities on the other side of this lifetime to offer something meaningful to those who have been so kind to me.

A quote I came across today, “Be thankful for the difficult people in your life, for they have shown you who you do not want to be”. This may hold true and is a concept I’ve taken into consideration when I reflect on my experiences, what I like even more is to paraphrase it to  “Be thankful for the beautiful souls in your life, for they have shown you what is within each of us to be”.

Thank you to so many of you for reminding me on a daily basis of what selflessness looks and sounds like. I am forever in your debt.

Accepting Pain…

I often get asked how I deal with the physical pain associated with my illness. Being highly allergic to opioid pain killers, my options are very limited. The pain med that I do rely on can only be taken sporadically given the side effect of sometimes severe stomach distress.

Shortly before my nurse arrived today, I came across an online article about the abuse of pain medications. Although that’s not a concern of mine, there was a quote that caught my attention.

“Learning how to cope with pain can be more empowering for patients than trying to find a pill to completely eliminate it” coming from Dr. Mitchell Katz, director of  the Los Angeles County health department.

During her visit today, my nurse asked if I’d like her to once again raise the issue of my pain management with my doctors in hopes of finding something more effective.

I shared the gist of the article with my nurse, and explained how the quote I’d found quite nicely summarized how I felt about my pain management strategy. It’s highly unlikely that we’ll find anything to eradicate my pain completely, but it’s comforting to know that I can relieve it to some degree when it becomes too much for me to bear. Which happens more frequently as the weeks go on; you might accurately surmise that I have a very unhappy stomach to match.

Not having an expectation of complete pain relief is what gets me through my days and nights, I just didn’t see it as clearly as that until today when I read the article. I think I’d be struggling far more emotionally with this illness if I didn’t accept there there will be zero days in my future without pain. I just hope to have have some days with less severe pain than others.

This philosophy is one that has been in the background throughout my life. I don’t know anyone that gets through a lifetime without hardship. It makes the good times all that much sweeter. I suspect that’s been my secret to finding happiness in the spaces between the challenges. Accepting that no life is without battles and tears.

When my husband first blindsided me with the news that he was leaving me, he said that 95% of our life together was great – but the 5% of unhappiness he was experiencing was more than he was willing to go forward with. He expressed that he deserved to be unabashedly happy all of the time with a partner, and was going to leave me in order to find someone who could provide him that desired state of absolute and utter happiness. Over the coming weeks and months, the ratios changed – in his version of our history he apparently had very rarely experienced happiness and that became his truth. I disagreed, but it really didn’t matter what I had thought in the matter. A decision had been reached without me.

What I do accept as my truth now is that a certain percentage of my week is spent in moderate physical pain, some at higher levels. There are discussions with my medical and support teams as to how we will proceed as the pain ratios change for the worse. We’re together creating a plan with open and honest communication.

I leave you with another quote that I came upon today, from the #OolaSeeker Twitter feed.

“A lot of people end up unhappy because they made permanent decisions on temporary emotions”. There will be no rash major decisions in my future, only ones that have been given lengthy consideration and debate, of that I can assure you.

Fear Not…

“I am not afraid”. I ended a post last week with that sentence, but perhaps it could bear elaboration.

I am not afraid of death. Not so thrilled about the suffering that has to be endured before that happens, especially if it’s the painful death that seems to be in the cards for me. But I’m not afraid of no longer being alive.

I can’t tell you if the lack of fear comes from a spiritual, intellectual or emotional place inside of me, it just never occurred to me to be afraid of death. I realize that may sound strange to some, I’ve been told so up front many times. I don’t wish to diminish the fears that others may have about facing end of life, it’s just truly never been an issue with me for whatever reason.

Not that I’ve lived without fear. A friend gently asked me a few days ago if I could write about how fear has been addressed in my life, it’s taken me a few days of consideration to frame my thoughts.

I can’t leave any of you thinking that I’m some sort of kick-ass storm trooper who can face anything without trepidation. Far from it. But I’ll admit that at times I’d prefer it to look that way.

Admittedly, I don’t think I’m afraid of very many things. Now. I suspect that any courage that I’ve been able to muster in facing the challenges of recent years has come from having gone through some pretty harrowing ordeals in my lifetime. You couldn’t make this stuff up if you tried, it’s quite unbelievable that these challenges happened to one person in just one lifetime.

There have been obstacles that at times I simply believed could not be overcome. I can’t even begin to offer a formula for managing to get past them, for some I don’t know how I even did so. But generally, we do what needs to be done, dust ourselves off and hope that tomorrow will be a better day.

One significant fear that I’ve struggled with is the fear of letting others down. Throughout my life, pleasing others (or more so, not upsetting them) was an overriding concern. To the point that I often allowed myself to be diminished so that others could feel better about themselves, or permit them to do whatever pleased them to my own detriment. Sometime subjecting myself to abject cruelty as not to rock the boat.

Learning to assert my value as an equal to all others has been what I consider to be my last big lesson for this lifetime. Not that I’m terribly good at it yet, but making progress has lessened the fear that my tolerance of past disrespectful behaviour towards me has set a poor example for my daughter.

Not surprising to me, she’s been my greatest teacher for this lesson. Another fear that I can let go of before I leave, she’s on the right track and I’m grateful that I've been here long enough to learn from her. Perhaps her modus operandi will sometimes require her to do the opposite of what I would have done when facing difficult situations in her future; whatever gets the job done with her dignity and sense of self worth intact.

Nap Overdrive…

Sheer exhaustion.

I’ve spent the better part of the last two days sleeping, I just can’t seem to get enough rest.

On one hand I’m grateful, it’s been so very long since I slept more than four or five hours in a night and daytime naps have been few and far between. And short if they came to me at all.

Although I tend not to get myself worked up over new symptoms or worsening of old ones, there’s a nagging feeling that this level of exhaustion is significant.

I ponder whether the amazingly luxurious pedicure and leg massage that I received here at home on Tuesday evening from a friend relaxed me just that much.

Having my daughter living here has allowed me to worry less about how to manage in the apartment. She takes great care in keeping me fed and watered, attends to any visitors and deliveries, and is the best companion I could imagine. Just glancing her way provides me a great sense of peace, she sleeping beside me is what I tell my nurse is my magic  potion for helping to manage the pain.

I suspect that writing my last post “On The Beach” was the most significant factor of them all. That post was another step, albeit a huge one for me, in the process of letting go. With letting go, perhaps comes that precious sleep I’ve needed so badly.

I apologize to the friends whose calls I’ve let go to voicemail over the last few days (or worse, answered in my grumpy mid-nap state!) leaving Skype calls unanswered, and for not being terribly prompt with emails.

Well and truly zonked, back to sleep I go.

On The Beach…

A Royal Navy term meaning “retired from the Service”.

Also the name of my favourite novel, written by Nevil Shute. I was what you might call a precocious reader when I was young, my Grade Six teacher Mr. Bone would score me the brochure for the Scholastic Book Club that was reserved for the senior elementary (Grade Seven and Eight) students, not normally available to the lower elementary grades. It was our little secret, it was with great excitement that I awaited the monthly delivery of my new books (and that’s about the only thing I would spend my allowance on; the apple hadn’t fallen far from the tree with my daughter either).

On The Beach isn’t what I would classify as great literature, it’s generally not deemed Shute’s finest work. The story is that of several characters living in post-apocalyptic Australia, aware that certain death is to follow after nuclear bombs are presumed to have wiped out the rest of Earth’s population after the eruption of World War III.

I was watching a bit of TV last week, a show in which a young cancer patient is asked by her therapist what her favourite book is  -  to my shock she cited On The Beach. My jaw could have dropped.

It’s not that it’s an unknown entity, the book was made into a movie in 1959, again as a TV movie in 2000. Many of you may know the story.

It’s that this book, read over and over again throughout my teen years,  had been my guidebook from an early age as to how I would hope to cope with adversity.

What struck me at the first reading was how the characters each face  imminent death in their own way. Two characters, Lieutenant Peter Holmes and Commander Dwight Towers, became my heroes.
Despite knowing with certainty that they in just a few short months  will die of radiation poisoning, they go about their daily lives with as much normalcy as they can muster and circumstances will allow.

Gardens are planted, dinner parties are thrown, new friendships are forged. They continue with the mundane tasks of life as if nothing has changed, yet acknowledging at the same time that everything has indeed turned upside down.

My heroes. Facing the end of their lives not with anger, but with acceptance of what is to come. There is no hope, yet grace and gentility reign.

I’m sure that I’m not alone in having thought out in my younger days how I might handle a diagnosis of a life limiting illness. If and when those thoughts ever crossed my mind, my mind would go to this book.

The game plan I had imagined for how I would deal with serious illness is pretty much on par with how things have actually gone. I knew that I would investigate and try treatments, but would have a sense of when enough was enough. I reached that point last year when I decided that I’d no longer put my body through experimental treatments, nor would I have any more diagnostic tests done. I don’t need to know any more details of the ravages to my body, the knowledge offers neither comfort nor advantage.

Despite the overwhelming challenges to keeping some sort of normalcy, we do what we can to shelve my illness for at least a part of each day. I may not leave this apartment, but as a dear friend recently noted – it appeared to her that I seem to do more ”living” between these four walls than some others on the outside world do.

It was not without a sardonic twist when I named this  blog “Without A Manual.”  To be certain I’d had very little experience with serious illness and death in my lifetime, but I’d had plenty of adversity thrown in my way. I’d like to believe that all the challenges along my path were practice for the biggest and most difficult of them all. I don’t presume to know the answers, I can only acknowledge what I believe to be the right path for me. I can only walk in my own shoes.

I’m on the beach, looking out to the sea’s horizon. It’s there waiting for me, it’s my prerogative to choose whether I let the current carry me out or I swim towards it.

I am not afraid.

In Good Company…

I may or may not have a wee infatuation.

A friend and I have a running joke about our TV boyfriends. Neither of us watch much TV at all, but in chatting last year we discovered that we are in agreement that actor Peter Krause would be welcome to drop by anytime for coffee (no disrespect intended towards my friend’s fiancé, he’s quite a catch himself and my friend and her man know how lucky they are to have found each other).

That discussion led to her lending me the entire series of “Six Feet Under” DVDs last fall, and me making sure that I caught every episode that I could online of the show “Parenthood”. In keeping with the manner of dark humour that creeps into this household, I’m still allowed to look at and appreciate a good looking man. I’m not dead yet!

There are other men that I find quite attractive for various reasons. A great conversationalist is at the top of my list, if he’s got a good sense of humour and physically attractive it certainly doesn’t hurt either.

For many, many years I was a diehard Coronation Street fan. When my daughter and I were without TV and bandwidth this past summer it went by the wayside and I lost track of the plotlines.

After I settled into this apartment the only option that was within my budget was hooking up to the apartment building’s antenna, on a good day I get a decent image on three or four channels. The one dependable station is CBC, Canada’s national network.

After the flurry of moving in activities died down, I made an attempt to catch up again on my beloved Corrie. Not having a DVR/PVR, I had to make sure I had the TV on in time as not to miss it, it became habit to tune in while eating my dinner and catch up on the nightly news while I was at it.

After over thirty years of hardly missing an episode of Corrie, I found that I just wasn’t that interested anymore after my long break from the show. However, the programme that falls in the time slot just before it comes on caught my attention.

“George Stroumboulopoulos Tonight”. Affectionately nicknamed “Strombo” (a moniker that gives the rest of us a break from consistently misspelling his surname), George interviews his guests with an ease and humour that I find very enjoyable to watch. And his rotating trio of sidekicks can always make me laugh (more of comedienne Jenn Robertson please, I’ve been a fan of hers for years!) And…George is not hard to look at either.

For my U.S. readers, you might see George in action for yourself this summer, he’s landed himself a ten week stint on CNN.

You can imagine my delight when what you see in the attached photos was delivered to me yesterday afternoon by a mutual acquaintance. Yes, it’s a bobblehead George, he’s been placed on the dresser here in the bedroom. My daughter and I had a blast last night deferring to George throughout the evening. “Yes, it is time for a piece of chocolate, don’t you agree George?” “George agrees with me, Mom – time for you to rest”.

In an attempt to keep the atmosphere of the room where I spend almost 100% of my time as pleasant and cheerful as possible, bobblehead George is a welcome addition (it might be difficult to read here online, but George wrote “Sandy, Thank you for letting me keep you company" on the back).

Now, George – isn’t it time for another piece of chocolate?