This Would Be She and I…

When I wrote about taking family photos the other day, I had wanted to include one of my very favourite shots of my daughter. She had given her permission to post it, but when it came time to add it to the post it I just couldn’t find it on my computer or on any of my backup drives.

I was beside myself. The photo I wanted had been taken at our final formal session, one for which she had gone out of her way to select an outfit and get herself dolled up. It was also the last photo I took of her before our family of three disintegrated two weeks later; I couldn’t have known at the time that it was going to be quite a while before I saw a genuine smile again on her face.

With our two moves last year and many strangers coming and going when I was selling my possessions, I feared that one of my drives had somehow gone missing. Checking and double checking, the sought photos weren’t turning up. I kept telling myself that the memory of that afternoon might just have do, in the way that I’ve always consoled my daughter when an item had accidentally broken or gotten lost. It’s just a thing, it’s people who count much more.

Despite trying to think in those terms, my heart just wasn’t buying it. It was only tonight after numerous searches for the files that it occurred to me to try searching by the date of the photo being taken.

And I found it. A moment of joy overwhelmed me in seeing that gorgeous smile that I remembered so clearly capturing that day. I had accidentally placed the folder within another one. As was my habit to make at least two backups, I had also done the second backup on another drive with the same misfiling.

A while back while searching on the internet for something completely unrelated (an Arrested Development show plotline had caught my curiosity), I came upon the blog of a young women who is battling cancer. On her blog she regularly includes family photos, I was taken by surprise at what a difference it made to me to see the faces of the loved ones whom she was writing about. I felt more invested in her story, and I made a promise to myself to one day share personal images on this blog.

You may believe that in writing this blog I’ve opened up my whole life to you, but a great deal of what has transpired had been left out. For more than a year, and I suppose really from the time of my diagnosis, I’ve been quietly trying to come to terms with where my accumulated lifetime experiences and beliefs will lead me in decisions to be made at the end of my life.

What I need my readers to know is that this is, and will continue to be a story about two people, my daughter and I. When it comes down to it, it’s only what she and I think that matters. It’s she and I who walk in these shoes, and no one else. And we will continue to keep parts of our life private. You might be surprised just how much can be happening in the life of someone confined to bed!

The photo of Suzanna on her own was taken at that last photo shoot just over two years ago. I’m a wee bit biased, but I think she’s only become more beautiful each day. The photo of the two of us was taken when she was eleven. She in the meantime has turned from child to young woman, I not only look older but worn out now too. The smile however on most days is still there.

As we tell more of our story over the next few months perhaps it’ll resonate in having seen our photos that we’re an ordinary mother and daughter who happen to be in the middle of extraordinary circumstances. Despite the challenges, we make one heck of a great team!

Perspectives on Pain…

Sadly I have a number of friends who are at this time experiencing various ailments causing considerable physical pain and discomfort. Invariably a few times a week I’m asked how I manage to keep a smile on my face given the considerable bone and cardiac pain.

I’m often told by visitors that I’m good at covering it up. Mind you, they’re usually not around when the pain is at its worst in the wee hours of the night. It’s at those times I’m found as curled up as my stiffened body will allow, and permit myself occasionally to let the tears silently stream down my face. Not terribly desirable, I’m then stuck with a wet pillow.

A few weeks ago I had a conversation with the woman who used to be my family doctor in Toronto, whom since moving away I’ve been blessed to call my friend. She was my physician back in 1996 when a mysterious virus hit me.

It wasn’t so much pain as severe discomfort. Endless months of intense nausea, vertigo and retching made daily life unbearable. It was next to impossible to keep anything down (although the Ovaltine biscuits that my father-in-law would bring me seemed to often magically do the trick when a touch of appetite would finally arrive around 3 am each night).

I was beyond miserable. I couldn’t work, I couldn’t care for my daughter properly. Even turning over in bed seemed an ominous proposition. There were too many trips to emergency as my body repeatedly went into severe dehydration.

My doctor had given me her home phone number, I remember calling her one Saturday afternoon as I reached my breaking point after over six months of this torment.

She gently assured me that despite numerous tests not having yet determined a cause, this would end – she would keep trying to find an answer. It would be okay. Admitting how much I was struggling had brought me to my low point, hearing her caring words brought me back up again.

In case you’re wondering, it’s impossible to know if that rough patch was a precursor to my diagnosis of Erdheim Chester Disease. It was however yet another of many prolonged spells of ill health, with the most serious yet still to come. I sometimes wonder what surprises the pathologist will come upon when it’s time to take a look inside. Wish I could be around to hear the results, they might explain quite a lot!

When my friend and I had our conversation a few weeks ago, I reflected upon how I had handled my illness at that time compared to how I was dealing with my current situation. Mentally, I’ve dealt with each quite differently.

When I’ve been seriously ill in the past, attached to it was always a desperation to get better. The discomfort had to eventually let up, right? Something had to work, and eventually something would.

This time, it’s completely different. With no expectation of getting better (and a reasonable assumption that with each day, week and month I’ll be feeling worse) at the risk of sounding cliché, I can embrace the pain. It’s part of me now, and there will only be one way to escape it. There’s a comfort in knowing that eventually this will be over, just not in the way I’d hoped with previous health challenges.

I don’t have to fear that tomorrow the pain might be worse, I already know that there’s a fair chance that it will be. I don’t have to worry that this illness will kill me, I already know that it will.

To my friends who are going through illness and injury, please don’t shy away from telling me how bad you’re feeling in concern that it pales in comparison to what I’m going through. Neither of us can know that, but be assured that I can understand how overwhelming it can be.

If what you need is for me to just listen, I will. If what you need is to hear that it’ll all be okay, I can say that to you. Sometimes, even though sometimes that might be straying from the truth or from what can be known for certain, those words can be golden in their intention alone.

A Picture’s Worth…

Infrequently I have days when the ache inside my heart (the one that I use to love with, not the one that runs on a pacemaker battery) exceeds that of the physical pain in my body. Sunday was one of those days.

A few months ago, my daughter asked me how I would feel if she were to book a photo session with a pro photographer for herself and her boyfriend to mark their three year anniversary of being a couple.

Suzanna brought the request to me ever so gently, knowing that with me having been a family photographer for the years before my “retirement” I was going to be very sad about not being able to photograph the two of them myself as I had done several times before.

And I am. Terribly sad about not being able to do the session myself, but at the same time very happy that she’s come to value photos as a wonderful way to mark special occasions and the passing of time.

I of course gave her my blessing to go ahead, and she gave me the opportunity to contribute with discussions about her outfit, hair and make-up for Sunday. It sounds like she and her boyfriend had a wonderful time and I can’t wait to see the proofs.

Part of getting ready, for lack of a better term, for my death has been the exercise of determining what to do with all the photographs I’ve taken over the course of almost forty five years (I still have my first camera, a Diana that I received at age five). In my estimation, I’ve likely topped well over a hundred thousand images (it’s running about 50/50 landscapes to portraits) that need sorting. Now there’s a job nobody is offering to take off of my hands!

Although I’ve always preferred to be behind the lens, it makes me sad that there are so few photographs of me for Suzanna to show her own children years from now. Most of my childhood photos were destroyed (you can’t imagine how much I’d value having some of my yearly school photos, as horrid as they may have been).

I have a few photos that my high school boyfriend took (bikini photos, not exactly how I’d like my grandchildren see me solely represented in my school years!) but other than that just a handful of images. As designated photographer at just about every occasion it was rare that anyone took the camera from me.

I know that I’ve smiled for the occasional photo over the years, but unfortunately very few images to pass on to Suzanna. Hopefully in time a photo or two will make their way to her. 

Sunday was indeed tough to get through. It was also the two year anniversary of my husband telling me that he no longer wanted to be married to me. With all that has happened, I honestly can’t say if it’s been the longest two years of my life, or that it’s flown by; the answer changes on regular basis.

Incidentally just weeks before that, a photographer friend had offered us the gift of a family portrait session knowing that I wasn’t well, with the generous thought that my daughter and husband would appreciate having images of us together. I had put it off waiting for warmer weather (and for my face to deflate a touch more, a sorry side effect of one of my unsuccessful experimental treatments), but in hindsight any photos would be too painful to look at now. I suppose the universe was doing me a huge favour at the time.

You might wish to suggest to me that it’s not too late to have photos taken, and you’re right – it isn’t. My daughter and I regularly goof around with the camera phone. But it’s just not a look that I’m rocking right now though.

What I’d like to suggest dear readers in return is that you make an effort to capture your loved ones (and don’t shy away from a camera yourself either!) at every milestone, at every special occasion – but mostly in the moments in between. While life is being lived.

As for Suzanna, I know that when she shows her children the many pictures of her childhood self, she’ll tell them that someone who would have loved them very much was standing close by on the other side of the lens. I'd like to think that I’ll still be taking in the scene at those moments too.

Remembering Penelope…

Back in 1969, the year I turned five, Hanna Barbera Productions aired a cartoon entitled Penelope Pitstop. Just for one season, but I found the show and the lead character memorable. Race car driver brave (most of the time!) and extraordinaire, for a time in my childhood she was my role model and idol. So much so that for many years afterwards when asked what my favourite TV show had been as a child I would mention Penelope.

Except for maybe once or twice, my answer would be greeted with a lack of recognition. Very few remembered the show, and at times I would be asked if perhaps I was confusing a character, or it was suggested that maybe Penelope was instead from a printed comic. I’d shake my head, insisting that she had been on TV.

I’m not entirely sure at times whether an excellent memory is a blessing or a curse, but I knew what I knew (the internet has since proven that I had remembered Penelope accurately).

Having grown up as generally quite a shy person, I had assumed that I blended into the background and was easily missed or quickly forgotten as it seemed Penelope had. It didn’t help that I had poor self esteem and didn’t believe that anyone would have reason to remember me.

Things did change a bit over time, career successes brought with them more confidence. However, I maintained the belief that once out of someone’s life that I would also have fallen out of their memory and thoughts.

Through writing this blog and my CBC radio interview, a few people from my past have been in touch to say hello. To my surprise, the emails and phone calls have often started out with the phrase “You probably don’t remember me, but…” I had remembered everyone who has reached out, and with great delight had the opportunity to recount memorable highlights of time spent together.

It amazes me that others sometimes also feel that they’ve not had a significant enough presence to be remembered, it’s not just me who can feel invisible. And I certainly would say for the majority that had reached out that I hadn’t thought of them as lacking in self confidence as I had/have been.

Last night, I unexpectedly received a letter from the mother of one of Suzanna’s friends from elementary school. We hadn’t been in touch since Suzanna and I had moved away to another city eight years ago. This mother and I hadn’t known each other very well, but I have memories of some lovely conversations when we and our girls were together at school events, birthday parties and play dates (my bookish daughter did indeed have somewhat of a social life despite being the homebody that she is!)

The letter was beautiful, and brought tears of joy in reading that Suzanna and I had held a special place in their memories, as they had in ours.

Reminders come along frequently that despite thinking that I haven’t had any significant impact during my time on this earth, I have made footprints. Perhaps sometimes there are ones that I regret having laid down, or wish I had taken in a different direction, but all the same, I was here.

I’m often feeling like I haven’t accomplished even a small part of what I was supposed to in this lifetime, how can one at forty eight? A harsh realization came to me this week when my uncle at ninety was hospitalized once again. I was fondly remembering a few of his many adventures since I was born, he was just a few years younger than I am today. What difference could I make if I were to be around for another forty or more years? It’s only quite recently that I began to accept the idea that my actions and presence have at times made a positive impression in the lives of others.

I know have no idea if the creator of the character of Penelope is still around (I’m feeling very old when I realize it’s well over forty years ago), but I wish that he or she could have known that despite not being well known, Penelope made a difference in the life of a five year old girl a very long time ago.

Dwindling Piggy Bank…

Last month I wrote a post that detailed how I needed to reserve my energy, taking it down to the number of steps I estimated I could take each day without pushing myself too far (click here to view that post).

It seemed to be about one hundred steps, and no more than five minutes of standing each day. Today those numbers feel very far away, how dramatically things have changed.

That allotment needs now to be spread over several days if I’m to lessen the excruciating pain that accompanies having used my legs too much. If not the pain, it’s the accompanying respiratory issues that have me returning to bed as soon as possible.

There’s a dilemma in choosing how much to share with my daughter about the pain levels, it usually flares up at night when we’re trying to enjoy some quality time. This time usually consists of light-hearted banter and “punnery” whipping back and forth; the breadth of topics we can cover in an hour is a source of amusement to us. She has to take care in not saying anything too outrageously funny for fear of getting me gasping for air (she’s nicknamed me the Coughy Monster, she’s not far off base). Not an easy task, she has a terrific and wry sense of humour. By end of day my part of any conversation is usually held at a whisper, but between hand gestures and Suzanna knowing me well enough to know which words would have come out of me next we’ve made it work.

We’re getting creative on how to keep my “leg time” and talking to a minimum. During the day if Suzanna is away the apartment door is left open for friends and palliative team members to let themselves in (no worries, there’s absolutely nothing of any value here left to steal – least of all me!), and we installed a surveillance camera so that I can confirm from my iPad who has entered the apartment. As an added bonus I can communicate with Suzanna when she’s preparing meals in the kitchen (our apartment is long and skinny, she can’t hear my raspy voice if I call to her from the bedroom).

When the pain escalates, I get quiet. I worry about offending her, that she’ll think I’m not appreciating her attempts at keeping me entertained. I worry that she’ll think that I’m in more pain than usual that evening because she didn’t do enough for me during the day to keep my allotment of leg time to a minimum. When I do tell Suzanna that the pain levels are difficult to manage it’s so that she can understand why I’m not reacting as quickly, or at all, to her comments or questions.

This concern in not wanting to offend others by not participating fully in conversation has me withdrawing to at least some degree from my circle of friends and support team. The truth is, phone calls and visits do place additional strain upon me.There’s no question that there's a price to be paid for doing anything other than just laying quietly in bed. I know that my friends also feel badly when they realize that interaction has been taxing for me.

I realize that I’m likely to hurt some feelings in saying this, but some relationships going forward may need to be maintained more often over email and short phone calls. I do hope that friends who are wondering if they can visit will ask me or Suz, and understand if she or I tell them that it’s not something I’m up to.

Although I may be talented at budgeting when it comes to money, I have to apply the same principles to my energy reserves. The piggy bank is dwindling. It used to be that I had a balance that went up and down from day to day, finding a way to save up energy for an upcoming visit. Now, there are only withdrawals.

I know how I want to invest the balance. The biggest gift I’m getting now is knowing that my daughter is here, and that she approves of the spending plan.

Perks of the Job…

My daughter is a voracious reader, typically the only item that would be on her wish list come birthdays or Christmas would be a gift certificate to Chapters book store.

She knows that if I read at all these days (eye strain has become an issue) my tastes lean towards non-fiction lately. There was one book however that she had suggested I read, “The Fault in Our Stars” by John Green. She warned me that it was sad, that it was undoubtedly going to make me cry. She rarely sheds tears for the characters in her books, so I knew I’d best have a box of tissues at hand when it was my turn to tackle the story.

I won’t spoil it for anyone who has plans to read “The Fault in Our Stars'” but I will share one thing from the book. Cancer perks.

Erdheim-Chester Disease is at this time still not officially classified as a cancer, but recent studies have it leaning that way. The research community has been making significant strides thanks to several teams around the world focused on learning more about ECD. Even better is the news that the various researchers have been sharing findings and coordinating efforts. An excellent example they’re setting for politicians!

Cancer perks. Things that come your way only as a result of being seriously ill. Offered with kindness and compassion, I’ve often written about my challenges in learning to accept graciously what is offered to me.

Asking for special favours is another thing altogether. Suzanna and I loathe playing the “sick card”. Just about everyone has some sort of burden upon them and neither of us feel that we should get special consideration because of my illness.

As you might have already read here, Suzanna has left university to take care of me. The last months of classes were particularly difficult for her to get through as she grappled with making a decision for herself.

More than a few of my support team members suggested that Suzanna let her student advisor know what was going on at home, I learned that sometimes adjustments to grades can be made to compensate for the strain that a student may be under from circumstances beyond their control.

Suzanna wouldn’t hear of it. She felt it imperative to earn every mark on her own whether it was good or bad without, in her words, pity.

I applaud her for this decision. She passed all of her classes, some grades better than others - but she carries with her the knowledge that she earned every mark on her own.

The apple doesn’t fall far from the tree on this one I’m afraid. Unless it’s essential to the conversation I just don’t see any reason to mention to others on the phone or in emails that I’m ill. Before needing mobility devices (crutches, the special cushion and then the wheelchair) and oxygen, getting away with being perceived as ”healthy” had given me a bit of a thrill. A chance to fade into a crowd.

I played the sick card last night, and it burns me today thinking about how hard I had to slam that card down.

We’ve had intermittent, yet continuous problems with our internet and phone connections since moving in here. Techs have come and gone, yet the problems weren’t resolved.

We nearly had emergency services here a few days ago when a PSW was trying to call from the lobby downstairs. The only reason I even have a landline is to be able to buzz visitors in, when it’s not working I can’t get anyone inside the door. Protocol with my palliative team dictates that if I don’t answer the phone, help is to be summoned.

That particular situation turned out alright when another tenant opened the door for her more than twenty minutes later, but I’m sure you understand the importance of having a phone that works. Unfortunately my service provider didn’t see it the same way.

A call to the technical support line last night landed me a Thursday appointment for the repair, four days away. It was suggested that I have visitors call my cell phone, and I could go downstairs to unlock myself the door in the meantime. I respectfully explained to the agent that due to disability I’m not able to leave the apartment. That still didn’t get me anywhere.

I explained that not answering my phone would be setting off alarm bells with my support team. Still no luck.

So I did it, I played the sick card. Apparently the situation I’d already laid out still wasn’t enough to warrant sending out a tech the next day, but telling the whole truth finally got things moving. Being disabled wasn’t enough of a reason, but being palliative is.

Cancer perks? Not this time. Just the provider stepping up to do the right thing as I see it. Sometimes the bar needs to be raised for those who need special consideration. I’m not thrilled to be stuck on this boat, but I am getting braver about asking for the rules to be bent on behalf of myself and others who sit on the boat with me.

She’s Left the Building (But Coming Back!)…

What’s the phrase? I’m so proud I could bust a gut?

My heartfelt thanks to my daughter Suzanna for writing the last post. When she expressed an interest in contributing to the blog, I assured her that she could write about anything she wanted to. There would be no editing on my part, with one exception. I would only review content to catch any details that she might have inadvertently shared that we’ve mutually agreed are not (or not yet) for public consumption. As I expected, there was nothing at all in her words that needed revision. I’m sure I’ll have to give in to her sharing the occasional embarrassing tale, I do seem to have a knack for providing fodder!

The notes of support have flooded in, giving Suzanna confidence in visiting here again sometime soon. Thank you for the kindness and encouragement sent her way, I’ve shared with her all the comments that came to the email address I offer for private blog comments (sessa1@live.ca)

She’s away for a night visiting a friend from university, I’m pleased and grateful that we’ve been able to make it work. Things were quite rough here for the last few days with my health, thankfully I’d rallied a bit this morning – enough for her to feel less nervous about being an hour’s drive away.

What preparation is required for her to be away for more than a couple of hours?

Lots of water bedside. Suzanna had the excellent idea to bring the  full Brita pitcher to the bedroom as a back-up for the three tall glasses she’d already filled for me. And as an extra precaution a bottled water with the cap already unscrewed. I hope she’s not disappointed if I don’t finish it all!

Food at hand. I’ll sheepishly admit that part of the supply includes Kernels SuperKid flavoured popcorn (thanks to K. She’ll know I must really be off my game for it to have lasted this long!) I may be forty eight, but sometimes I have the cravings of a seven year old. Luckily I have friends who indulge me instead of making fun. Okay, they make fun too but that’s alright. The forty eight year old in me can take it.

The side of the bed that Suzanna usually occupies is strewn with my laptop, iPad, land line and cell phones, chargers,TV remote, lip balm, hand lotion (I’ve jumped up another level in the oxygen airflow, it’s desiccating me from the inside out), notebook/pen, tissues and a cat. You’d think that the cat would be a transient visitor, but somehow Scrabble knows when I’m on my own and rarely leaves my side.

The litterbox is clean, cat food and water bowls amply filled. The door is locked, Suzanna will arrive home in time to let the PSW in the door tomorrow at noon.

Laundry is all caught up, garbage has been taken out, and lights other than in the bedroom and bathroom have been turned off. The bedroom window is opened wide (who would have guessed that this apartment would get so hot? I haven’t managed to get it to a comfortable temperature since I moved in). If only we could turn off the volume from outside, visitors who park out back likely have no idea that we’re subjected to every word they speak when the factory noise from just beyond the wall doesn’t drown them out. Today? “Grandpa smells so old, why did you hafta promise that we’d come back next week Mom?”

There’s a long checklist to go through every time Suzanna steps out, she shared with me a few nights ago that it’s now all become second nature after four weeks of trying to settle into a routine.

She taking care of all these chores is the reason that I’m not in a nursing home now. Whether leaving school was the right thing to do I can’t answer, but if she tells me it was the right thing for her I will trust her. And I’ll continue to be very, very grateful.

Something she always makes sure to do before she leaves? A hug, a kiss on the cheek or forehead, and telling me that she loves me. And with that, even if I should pass while she’s physically away from the apartment, I’ll not feel that I died alone. We’re in each other’s hearts always.

An Introduction…

I’ve likely made reference to my daughter in just about every post over the last few years. As you might have gathered over the last four years of writing this blog – I think she’s pretty darned amazing. And it’s time that I introduced you to my Suzanna.

Why now? Suzanna will be doing me the honour of taking the steering wheel on this blog now and again. She insists that she isn’t, but I happen to think she’s quite a talented writer and I’m sure that you’ll enjoy reading whatever she has to say.

She’s welcome to post anytime she wishes (and I’m pleased to say that's she quite excited about participating!) Suzanna has also committed to letting you know of any significant updates should I be unable to write. This story needs an ending, and as many of you have very gently and respectfully requested over the last while – you will have it.

Here is Suzanna’s first post,  I look forward to sharing more of her contributions!

As my mum has previously mentioned in an earlier blog post, I’ve made the decision to take the next year off from my education at university to care for her during the end of her journey. It’s not that I want to take a break from school, and it’s not because it seems easier. In fact, it’s an exponentially (here’s my science nerd side coming out!) harder experience. So why am I doing this?

I am taking time off to see her through to the end because it is the right thing to do.

I’ve got to admit, it’s really hard being home. For one, I am not free to go and do as I please anymore. I can’t take off on a whim, wait six weeks to finally do my laundry, or eat pickles for dinner three nights in a row without it affecting someone else. In my two years away at school, I became accustomed to being totally independent and enjoyed that. Moving home has definitely changed my level of freedom. Secondly, while away at school I didn’t have to face how hard my mom’s declining health really was. When I was away, I could take my mind off of her for short periods while I concentrated on lectures, labs, and work. Living at home, I see the daily struggles she faces, and how much work goes into making a day go smoothly for her. Physically seeing my mother get sicker before my eyes is - not to be dramatic - heart wrenching. This is the woman who cared for me for years, and now she needs my help caring for her. There is no one else who can do what I do, which brings me back to the point of doing the right thing.

It would be easy to go back to another year of school and try to forget about what is happening at home. I don’t believe that I could think highly of myself, however, knowing that I neglected my mom when she needed me most. Doing the right thing is a great source of pride for me. I am proud that I am running a household of myself, my mom, and two cats that cause so much trouble and mess that I liken them to toddler twins in their terrible twos. It has been hard to have to grow up faster than others my age, causing a disconnect between myself and my peers, but I know that it will be beneficial in the long run when I don’t have a mother to teach me all of these things later in life when I actually need these skills. This experience has taught me a lot more than just skills in how to run a household, and I feel I have grown as a person because of what I have been through and continue to go through.

This journey has been as hard as I have expected it to be. I am a person who expects the worst, and hopes for the best. In this case, it was closer to the worst, but at least I came prepared. As difficult as this is, it is rewarding too. Knowing that my mom appreciates what I’m doing (and she thanks me a lot, at times excessively!) makes me feel like I am making a positive difference in her life, and that I am needed. My mother is my best friend, and knowing that she won’t be enduring the end alone is a bigger reward than I could ever have next year at school.

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?