Double Vision…

Today’s photo is in honour of sleep. Glorious sleep.

Last night I had the longest stretch of sleep that I’ve had in several years, thanks to a new pain medication that I’m trying. I can’t say that it’s helped yet with the pain (it can take several days to weeks to become effective) but one of the side effects can be unusual tiredness.

It was with a bit of shock when I woke up close to noon today, realizing that I’d had over eight hours of uninterrupted sleep. I’ve become quite used to going to bed around 3 or 4 a.m. and being wide again just a few short hours later.

Not only did I have a great night of sleep from the one dose, I fell asleep again for another three hours this afternoon. It’s not so much about catching up on my rest as it is to have had fewer hours awake having to deal with the pain.

I’m not sure how this new medication will work out, it can have some undesirable side effects. We have yet to see if it even helps with the pain, the documented success rate is about 30%.

But just for last night’s rest alone I’m grateful.

Another side effect is double vision, which lasted for about half an hour after I woke up. The vision issue reminded me of an image I’d created about six years ago, called Trees in a Dream.

An aside, a few blog readers had asked if I was going to post portraits on my website again. I have added some, and hope to change them up from time to time. http://www.theintrepidlens.com

The link to download this photo is here:

https://www.dropbox.com/s/wybp4jafe6nu00k/IMG_2732.jpg

When the Rubber Hits the Road…

Not one of us can escape the reality that our life will come to an end. We’ll all die whether it comes quickly without warning, or we’re given time to deal with what’s to come.

Given that it’s something we all must experience, why is it so difficult to talk about?

I should clarify that. It’s become commonplace to see advertising for life insurance, cemetery plots, funeral services and crematoriums – the death part. When death is seen as something not to be worried about until far off into the future is doesn’t seem so ominous to most.

What we seem to struggle with is the time leading up to death when it’s known to be not that far off. On one hand we’re encouraged to write a will, appoint powers of attorney, decide what we would want for ourselves should serious illness be something that we’re faced with.

Does it matter what we want for ourselves? It ought to. In my humble opinion It ought to matter very much. I believe very strongly that we should have a say in how we want the end of our lives to play out. Whether your wish is to have every reasonable measure taken to prolong your life, or your wish is to have little to no intervention to alter the course of your illness (or something between the two), you have a right to speak up for what you deem to be best for yourself.

When dealing with end of life, so many choices are already taken away from us. Serious illness can rob us of our physical abilities, our mobility, our sense of wellbeing, our security, our freedom, our livelihood, our finances, our dignity, our dreams and plans for the future, and even  the company of our family and friends while we’re still here. I personally have been hit on each of these fronts, on some harder than others. And serious illness can, and likely will offer significant consequences in the lives of our loved ones. I need only look into my daughter’s eyes to see how deeply it hurts her to watch me deteriorate in this way, and recognize how my illness has turned her life upside down.

If I haven’t yet made myself clear, I am a strong supporter of end of life options. I embrace the possibility of a gentle death for myself, we know with certainty I’m not going to get better – every week that passes becomes more challenging.  My daughter and many close friends have made it known that they understand and support my position on the matter. The difficult events of the past week (a meeting with my palliative support team, and numerous conversations leading up to it) have only strengthened my conviction for a gentle death to be an option available for all Canadians at end of life.

Recent announcements by the Ontario government suggest that this province may soon follow in Quebec’s footsteps (where introduction of the bill to the legislature was welcomed with a standing ovation) in bringing forth legislation to permit physician assisted death. I applaud this move, as do many other Canadians if the polls are accurate.

Wherever you sit on this issue, I would encourage you to watch a movie entitled “How to Die in Oregon”. Not yet available on Netflix Canada, but it can be rented/purchased on iTunes. If you’re visiting me and want to see it, I have a copy and would watch the movie again. I’ll provide the tissues.

Even if physician assisted death is not what you would choose for yourself, is it something that as a society we want to deny to those who are suffering with terminal illness who desire a gentle end to their suffering?

I’m not even sure if a physician assisted death is what I would choose for myself if it were available, but I would find great comfort in knowing that it was legally available should I feel unable to tolerate the circumstances of my illness any longer.

This is a contentious issue, and I wish no disrespect to anyone whose personal beliefs are contrary to my own. I do ask however to be respected for my own experiences of walking in these shoes. When the rubber hits the road, you may (and perhaps unexpectedly so) find yourself wanting to have options available to you should you be dealt a terminal prognosis coupled with unrelenting pain and suffering.

Your Chance to Strike it Rich…

Aside from some truly enjoyable visits with friends, this week has been a quite the downer. I’ll eventually get around to writing about the events of the the last few days and the coming ones, but I’d rather end today on a higher note.

I’m the queen of thinking of creative solutions for predicaments, but then saying “someone should invent a device that does…” without realizing that I’m the one who just then might have invented something quite useful . Many ideas I’m sure would have been complete duds, but had I invested a bit of time on research and development I imagine that it’s entirely possible that I’d have a patent or two under my belt.

When I was in the corporate world, for years I worked  with a woman who then and in the years since, has been a close and trusted friend.

D. and I have never been at a loss for topics to discuss, and can’t imagine a subject that we’ve not chatted about at least once over the years. Many times she’d hear my ideas for a new product (often times we’d quickly agree that it was one for the trashcan) but occasionally she’d tell me that I really ought to act on the notion.

One idea particularly sticks in my head. I detest feeling cold. I’m not that thrilled about feeling overly hot either, the Canadian spring and fall seasons are by far my favourites. I prefer temperate rainy, foggy days and my photography archives certainly reflect that.

Wouldn’t it be a great idea to invent a vest that’s battery operated for warmth, just like an electric blanket? D. jumped all over that idea, and every time I mentioned it she urged me to pursue the concept further.

Jump ahead fifteen years, and I’m going through one of my experimental ECD treatments. And I’m cold. Not just chilled, but iced down to the bone. Walking around the house wearing a blanket tightly wound around me even though it’s on the cusp of officially being summer, kind of cold.

I was already in pretty dire financial straits by this time, about to be without a home and absolutely no income other than the proceeds of a garage sale (a whopping $263) to get me and Suz through who knew how many months ahead.

Time to kick that electric vest idea into gear!

That high lasted all of the two minutes I needed to search the internet to see if someone else had the same idea.

They had, about three years earlier. Had I acted on my creation way back when, I might have had a good ten years or more of raking in the big bucks.

Of course chances are that would never have come about, but it gives me pause sometimes to think about the ideas that got away from me.

Now I’m going to pass the baton over. Something needs inventing, and it needs inventing badly. Somebody please invent it, and make a gazillion dollars in the process. Put a little aside for charities, I have some names of wonderful organizations to offer up.

Wireless oxygen delivery. I know, I know, a crazy idea. But perhaps one day people like me might be able to free themselves of the long tether and put away those heavy portable tanks.

One of my visitors this week is a brilliant man whom I’ve known since he was a brilliant boy, before we started kindergarten. He agreed that technology needs to catch up in order to adequately power a tiny oxygen concentrator, but it’s not out of the realm of possibility.

So go forth. Make the big bucks and help millions of patients who like me are tired of feeling like an animal on a lead. And make sure my friend D. gets a commission out of it, will you?

Might You Be Able To Help?

Yesterday was a source of many reminders to myself for topics for future blog posts, but there’s something that I wanted to share that’s of greater importance.

Over the years I’ve mentioned the tremendous support that I and other ECD patients have received from the Erdheim-Chester Disease Global Alliance. Rather than paraphrase the goals and significant accomplishments of the Global Alliance team, I’ll provide an excerpt below from the email I received.

After the excerpt, there’s a link that we members are being asked to share, I do so gladly and in the hopes that perhaps a few of you might consider a donation to help out this wonderful organization. If you’re short on time, I’ll make this even easier with this link for online donations.

http://www.razoo.com/story/Ecd-Global-Alliance

We need your help.  Progress is being made in learning more about ECD and raising awareness, but there is still much to do.  Unfortunately, many activities take funding to accomplish.  As an organization we are committed to helping patients rather than focusing on raising funds, but the fact is that funds are needed to accomplish many of our goals.  Many of you have already volunteered and made donations this year, and we thank you greatly for your contributions. 

The following are but some of the organizational activities that are ongoing at this time:

· Funding a third research study devoted to learning more about ECD

· Hosting the first ever ECD Medical Symposium 

· Teaming with researchers who are actively studying ECD

· Hosting the first ever ECD Patient/Family Gathering (Nov. 1-2, 2013) 

· Creation of a video to explain ECD

· Supporting patients/family members through the chat sessions, www.rareconnect.org, phone calls, emails, etc..

And here’s the link to the letter with even more detail:

https://docs.google.com/document/d/15aYDikRHfNsMET3GlwtQSxs3fJMJAR21lT2BC9BsCCQ/edit?usp=sharing

If you got to the end of this post, I extend my thanks for reading about what the ECD Global Alliance is doing for patients like myself. I truly don’t know how I would have waded through the realities of dealing with this illness without their support and encouragement. Special thanks and much love to President Kathy Brewer, a woman who moves mountains for we “ECD-ers” and our families.

Dropping the Ball…

Not a ball exactly. A little pill less than a quarter of the size of a pea. But what an important little pill it is.

It was 2:30 am when I was getting to bed, and as usual had reached for my night time dosage of my medications. My hands are often quite shaky, and one of the pills slipped between my fingers. I noticed before I had put them to my mouth, usually I do a quick inventory with my tongue to make sure no pill went astray between hand and lips. You can’t be too careful when your hands aren’t steady.

In the dimness of the night light, I couldn’t tell which of my pills was missing somewhere in the carpet. My first thought was concern that the cat would get to it first. He’s quick, and I’m not able to reach the floor. My second thought was the hope that it wasn’t one of the expensive meds for which the dosage is closely monitored by the insurance company. The carpeting in this apartment is pretty grungy and the thought of putting the dropped pill in my mouth was completely unappealing.There’s one medication in particular that I can’t get refilled until I only have just two pills left, the insurance company will only cover thirty days worth at a time of any of my meds. And no automatic refills so my doctor has be bothered each time. There is no end to the additional red tape that comes with being of palliative status, I really didn’t need a replacement pill being one more headache for me to address this week.

I needed Suzanna’s help, calling over to her side of the bed to give me a hand. She quickly got up, found the pill and got me a replacement. It had been my beta blocker, a cardiac medication used to help regulate my very irregular heart rate. Not taking it would have been problematic, as would accidentally taking a double dose if in the dark I had guessed the wrong medication to be missing from my hand. Thankfully it wasn’t a pill which would require a call to the pharmacy, it’s the one for which I need to adjust the dosage based on how my heart is behaving so I’m provided with a bit of wiggle room in my supply.

Prior to the last six months or so dropping something wouldn’t have been such a big deal. Not being able to pick anything up off the floor has been very frustrating for me. Adding to the frustration was the fact that I had taken off my oxygen a few minutes earlier to wash my face and brush my teeth, I was unable to get enough air to speak to Suzanna. I had to communicate with her through gestures and whispers.

Ever so gently she placed the replacement pill in my hand, and after I put them in my mouth she handed me a glass of water. These days I have to hold a glass with two hands to drink, and my teeth clink annoyingly against the glass as my hands shake.

She then replaced my day bed wedge (steeper to allow me to lay at a higher angle in bed) with the night wedge (my head and chest needs to be raised while I sleep to help avoid the dreaded night coughing and gasping).

Suzanna takes wonderful care of me, but I can’t help but dread what else my failing body will cause me to drop the ball on. With that, comes the responsibility for her to pick those balls up for me. I detest the reminders of how the scale is tipping more every day.

A Favourite Spot…

This photo is of a favourite, and oft visited, spot in north Burlington in my shooting days. I found the property so captivating that I took a chance and left a message in the mailbox asking if the owners might consider allowing me to photograph more of their property in exchange for a print. They graciously and generously agreed (I was permitted to the very back of their extensive and gorgeous property), and was given the privilege of photographing the property for a number of years.

On my last foray into the country last year, I asked my friend to drive by this laneway so that I could take one last look. No matter the season, it’s always stunning!

Download available here - https://www.dropbox.com/s/4j6qs2lizu2guv3/laneway.jpg

Job Posting…

Shouldn’t the ability to make the world go away be a perk of being seriously ill?

Before I go further I need to mention that when I speak of the world, I’m not thinking of the family and friends whose company brings me great joy. My closest friend’s visit today was anything but an intrusion, in fact her timing was impeccable. Somehow the universe lined up one of my more challenging days alongside her visit.

The outside world has been sticking it to me with hot pokers this week, and today was brutal. I needed help to take away the sting, and luckily both my friend and Suzanna are masters at the task. And both have fortified me for what will undoubtedly be a tough week ahead. Sometimes you see it coming, sometimes you don’t. This next one has me square in its sight.

The entrepreneurial spirit in me thinks that I might be on to something. Someone for hire who can hold the outside world at bay for a few days, that’s a gift that Suzanna and I would truly appreciate right now.

There are times when I think that the pain of dealing with bureaucracy and red tape outweighs the physical pain my body delivers around the clock. It would be lovely to hand over the reins to someone else to deal with the bills, the insurance companies, the pharmacy and the numerous support agencies to allow me to get a break. Not that there aren’t some really terrific people to be encountered along the way, but at times the idea of having a few completely uninterrupted days with my daughter is overwhelmingly desirable.

While I’m on that thought, it would be a tremendous bonus if that person could also step in to provide the body for the nurses to check over. Surely it wouldn’t be so bad if the record shows that my blood pressure, heart rate, blood oxygen and temperature looked a little more consistent for just a few days.

There is no way to keep the outside world away for any length of time it seems. It reaches in, and I have to reach out. However, I may yet work on that job description. I can’t have been the first to wish for a bit of peace during a time of life in which almost everyone agrees it’s most deserved.

Still Hanging In…

My dearest friend will be paying us a visit tomorrow, a quick stopover in Toronto in the midst of a heavy work schedule that has her crisscrossing Canada for three seasons each year.

I’m always very happy to see her. However rare our opportunities have been to get together in person over the years, distance has never been an obstacle in our friendship. Granted, we’ve likely seen more of each other in the last eighteen months than in all the years leading up to them combined.

We’ll greet each other with a big hug and enjoy our hours together. The goodbyes however, get more difficult each time we part. We both know that it might be the last time we see each other. Yet we continue to end our visits saying that we’ll see other soon again.

There are friends whom I see more frequently, others less so when distance and busy schedules get in the way. There are also the friends (and family) for whom I know seeing me is overwhelmingly difficult.

I try to understand.

The hard part for me is not knowing if the last time I visited with a friend will have been the last time I’ll have seen them. I suspect for some, their perspective is that they’ve already said their goodbye to me. Sometimes I wonder if I missed it. Were they saying farewell and I didn’t recognize it for what it was?

Looking from the outside in, this situation is ugly. I’m hooked up to oxygen tubing, confined to bed, and I know it’s hard to watch me try to shift about in bed, or hobble to the bathroom, or see me wincing when I’m not doing a good job of covering up the physical pain.

From the inside out however, I’m still me. I still want to converse about everyday subjects, joke around and share in the ups and downs of the lives of my family and friends.

Inside, I’m still very much alive. My body may be wasting away, but my mind is sharp and wanting to keep engaged with life outside of this bedroom. It just has to come to me now.

My hope was, and is, that I’m not going to need to say goodbye to anyone. I’ll hopefully just slip away in the night, and would be happy at the prospect of friends saying “I just spoke with Sandy the other day, discussing the kids, our vacation plans. Who would have imagined that she’d be gone just like that?”

Of course it’s not “just like that”, the way out the door has been agonizingly prolonged. Even so, I’m not yet ready for goodbyes. In fact, I’m still making new friends along the way (a brave lot, wouldn’t you say?)

Maybe Not What You Think…

An image that was a client favourite when it was available for rental at the Art Gallery of Hamilton in Ontario, Canada. Nope, I didn’t use Adobe Photoshop to get this effect. Nor a camera.

I’m honoured to know that the original print now hangs in the home of friends living in the state of New York. A kind reminder that although I’m not photographing anymore, my work endures.

You can download this image by clicking on:

https://www.dropbox.com/s/fbmpo498byaotxf/Lemons.jpg

Learning to Trust…

I’ll trust you until you give me a reason not to.

This wasn’t an easy philosophy to embrace, it took me almost thirty  years to get there. I’d been provided with ample opportunity in my early life to learn that sometimes people had hidden agendas, that their actions could be highly destructive to others. That others could act with utter disregard for the welfare of others, leaving a trail of misery behind them. And I’ve been reminded a few times since.

I wanted my daughter’s world to be different. It’s not that I wanted to do the impossible and shield her from all that was difficult or painful, but I did want to teach her to give others the benefit of the doubt.

It started at home. To this day, I’ve never searched her personal belongings. Never peeked in her diary, never opened up her phone (and she can attest to the fact that I can’t even figure out how to turn the alarm off when it trills while she’s in the shower, much less look up any info).

The deal was and is, unless she gives me reason to worry about her safety and wellbeing, her privacy is respected. And she respects mine. It’s brought us to a place where we can feel safe to speak to each other about anything on our minds, and it’s an amazing place to be with her.

When it came to others, I asked her to assume the best of intentions. When someone cuts you off in your driving lane, they might be trying to reach a loved one who’s taken ill. When someone is rude to a store clerk, maybe they’ve just learned that their job is in jeopardy.

We all have bad days, and we all at times take it out on others. And yes, sometimes people are complete and utter jerks. My suggestion to Suzanna however was to give them more than one chance to prove it.

I’m not entirely sure at this moment if this was indeed the healthiest way to look at the world. I’ve found myself too many times over the years excusing inappropriate behaviour, thinking that surely the person who was being hurtful was just having a bad day and tomorrow would be better. Surely nobody could be that indifferent to the feelings of others. Indeed, sometimes they can.

Our faith in the world outside of this apartment has been tested again over the last weeks. A casual acquaintance of my daughter’s was found murdered recently. Disturbingly, she was a stone’s throw from the young man’s body before it was discovered. She was at the neighbouring car repair shop only due to the actions of a person who drove into our old clunker and left without leaving a note a few days earlier. Our car (nearly as old as Suzanna) literally held together with a bungee cord on the drive there to prevent her from being pulled over by the police.

A racist comment from a customer at her place of work. And not the first one. Me tripping across the “hate map” online, a deeply disturbing mapping of tweets sent from across the U.S. containing phrases indicative of racism, homophobia and intolerance for the disabled. Would a Canadian “hate map” prove just as unsettling?

A theft from our apartment, ill intent has also crept in here. Really? We have next to nothing as it is, yet someone helped themselves to a little bit of the little we have left.

I still have numerous examples held up to me daily about what is good in the people around me, and I won’t let go of the faith that there’s far more good than bad out there.

However world, please show my daughter a sign that despite the risks, trusting in others is ultimately more rewarding. A few jerks are blocking the grander view right now.

The Slow Burn…

A topic that comes up with others – am I grateful that I have had my chance to say goodbye, or would I rather that my death would have come without warning?

I don’t know that I could answer that one consistently, there are many days that I believe that it would have been much easier on myself and my daughter had I had a quick and fatal heart attack. Goodness knows that my heart keeps unsuccessfully testing out that game strategy.

There are days that the suffering for both she and I can be unbearable. Trying to make the most of our days together, yet me being so limited in my energy and mobility making it all that more difficult to forget that which always hangs over our head.

Knowing that my time is limited, this is not how I would choose to spend this time with her. I’d have taken her travelling, to all the places I promised I would when she was small. We’d be zipping around the city together, visiting whatever restaurants caught our fancy. We’d go to the movies, we’d entertain our friends. We’d drive into the country far away from the city lights on summer nights to watch the meteor showers, laying on our backs anxiously waiting for a chance to wish upon a falling star. We’d chase the northern lights. How could I have lived in Winnipeg for two years and not noticed them? It was a time long ago when I didn’t yet appreciate the wonders around me.

What I wouldn’t have chosen is for her to be here day in, day out looking after my every need. My heart breaks for her, every morning I wake up it starts to hurt all over again.

This morning we had quite a fright. A small electrical fire here in bed that could have had dire consequences had we not been awake at the time.

Had I been on my own this morning, things may not have turned out as they did. Suzanna’s quick thinking, and ability to move much faster than I can saved the day.

As much as I’m overwhelmingly relieved that Suzanna was unharmed and our neighbours were spared danger, the experience awakened in me a deep sadness today in being reminded that more suffering still lies ahead for both of us.

When Suzanna comes home tonight from a visit with her father, she’ll snuggle and as always tell me how much she loves me. A big part of me will be wishing that my body would just let go and allow her to get on with the rest of her life. I’d think it far from selfish if she were wishing for the same, a chance to bring this chapter to a close and no longer live on this tightrope.

Zero Minutes of Fame…

Another image to share, this one has a fun story behind it.

This photo was taken in Caledon, Ontario at dawn, having left home at around 4 am to reach my destination in time. Although I had a digital camera at the time, I often preferred to shoot film for my landscape work for both colour and black & white.

For several years my images had been represented by a Toronto gallery which rented images to set designers for TV and movies. Imagine my thrill when I received a letter from Twentieth Century Fox asking permission to use this image on set for the movie “The Sentinel” . Of course I said yes!

We went to go see the movie in the first few days of its theatrical release. Could I have missed it in the background of one of the scenes whilst I was concentrating on the plot (which I thought might have been  hard to do given my level of excitement)?

When the movie came out as a rental months later I gave the search another try. Still no luck. If actors could deal with ending up on the cutting room floor certainly I could handle a bit of disappointment.

What made it less disappointing was hearing that the framed image was indeed used in the movie, and one of the actors liked it enough to purchase it for themselves. My gallery wasn’t at liberty to tell me who the purchaser was, but given the secrecy I’d like to believe that the image now resides in the collection of Michael Douglas, Kiefer Sutherland or Eva Longoria.

I may not have had my moment of glory, but it’s always nice to be invited to the party.

https://www.dropbox.com/s/h0lbmjerqljo1t5/sentinel.jpg

Happy To Oblige…

One of my readers mentioned liking a particular photo on my website, I’m happy to provide it for download (click on the DropBox link just under the photo).

It’s one of my favourite too! Allium flowers, photographed in 2006 at Burlington’s Royal Botanical Gardens.

https://www.dropbox.com/s/i134enwoyeb30h3/Allium.jpg

She Was In There All Along…

Darn it, I am brave. I’m finally going to take ownership of that.

Whenever anyone has ever told me that they thought me brave, I would  dismiss it in saying that I was only doing what anyone else would do in whatever situation I was up against.

What brought this acceptance to me today was the gift of more than a dozen photographs from my childhood. Photos I’d never seen. In reality I had little concept of what I had looked like as a child and teenager because I had only my memories to go on, that in itself was quite a surprise. I wasn’t the ugly and awkward duckling I’d believed myself to be. I was actually a fairly cute kid if I may say so myself!

Several pictures took me by surprise. I’d believed that I’d only ever been brave when there was a need to make a bad situation better, but that I hadn’t been one to push my limitations for reasons other than survival.

It may seems trivial to many, but this photo speaks volumes to me. When it was sent today, it was a “guess who”, and neither Suz or I could be sure of who the subject was. It’s me, and although I do remember the time it was taken – I’d never quite been sure whether I had just wanted to pull this off, or had actually done it.

I don’t know how to swim. Am I allowed to say that I’m totally impressed with almost thirteen year old me?

Other photos of me followed today, all taken between the ages of five and thirteen. Horseback riding (not a trail ride, me alone across fields at my uncle’s and aunt’s farm), driving a horse drawn sleigh on snowy back roads by myself, travelling unaccompanied to Germany when I was five.

These photos brought back a flood of other memories. Sticking my arm into a goat’s insides in the wee hours of the night to turn her kid around when the birth became complicated, going off to sleepover camp for two weeks when I was ten without knowing neither any other campers, or anyone who’d ever been to that camp.

Although most who knew me as a child would say that I was timid and hardly spoke, inside the beginnings of a warrior princess were emerging. Albeit, a rather quiet one. She’s served me well.

Why June 12th Is Special…

I pay little attention to the calendar anymore, there’s little need to. All upcoming visits and phone calls are logged on to my iPad, and it keeps me notified of what needs to be prepared for the following day. Most days that consists of little more than asking Suzanna to wash the spare set of sheets so that the PSW can freshen the bed the next day.

There are days that I don’t wish to remember. Days that I used to count down to celebrate, but have no reason to anymore. Today was one of those days. I probably wouldn’t have registered the date in my brain had it not been that I needed to figure out that I have only a few days left for the insurance company to reimburse me for the monthly oxygen charge before my credit card balance is due.

06/12 had been a very special day for me for many years, and for that reason used those numbers as my cell phone voicemail password, for the combo lock that stored the spare house key, my debit card password (don’t worry, they’ve all been changed. I wouldn’t be announcing them to the world at large!)

Instead June 12th will be remembered for the following reasons:

Today I saw for myself that a friend was on the mend from a recent, and very serious health crisis.

Today we welcomed a new volunteer to the team, and both Suz and I very much enjoyed her warmth and positive spirit. Angels everywhere I tell you.

Today I received an enquiry from my work website for a quotation and information on my wedding photography services. For a very short instant a punch to the gut, but when I learned that the referral came from a guest that had been photographed at an event I shot five years ago my heart filled with joy.  When I looked up the young woman who had done the referring on the internet, I immediately recognized her beautiful face although I had never come to know her name. What an honour to be remembered in the way that she had remembered both me and my photographs.

An added joy was hearing that the venue for next year’s wedding was a spot that my friends and I while in high school had a few times snuck into for midnight tobogganing on the snowy and pristine hills. I wasn’t always such a goody two shoes!

Needless to say I had to decline the opportunity to provide a quotation, but it was a thrill to have been asked.

Today was a day when a dear friend came to visit; she sat on my bed and so lovingly listened as I lamented about the further decline of my health.

Today was a day when my daughter surprised me by coming home early because she wanted to be here instead of elsewhere.

Although each day holds its own challenges, each also holds its own joys. Today was special for many reasons, just as I’ll find tomorrow special for different ones.

Laying It On the Table…

Some (I think especially some of my female readers) might relate to one of my small pleasures in life. Getting my hair washed when preparing to get my hair cut.

Always the highlight of a salon visit, especially when head massages began to be incorporated a few decades ago. I practically purr when someone is playing with my hair!

I’m not able to get to the salon anymore, yet my hair still annoyingly continues to grow. A friend connected me to a stylist who was willing to come to my apartment to cut my hair – and also make allowances for my difficulty in sitting up and needing oxygen. My friend also happens to be an aesthetician who takes care of my pedicures for me now (I can’t reach my feet anymore). Today I lucked out having both aesthetician friend and stylist friend come over at the same time.

To make things easier, I suggested that Suzanna could wash my hair before their arrival. Normally I’d have washed it seated in the shower, but my daily shower had already taken place hours before. Certainly my daughter and I could figure out a way to get the job done in the bathroom that wouldn’t be too uncomfortable for me.

Think back to your own visits to the salon, leaning back into those big comfy chairs with your head titled back over the sink. Imagine if you then found when you tried to get out of the chair that you couldn’t. Your muscles (or lack thereof) just wouldn’t put out the strength that was needed.

It wasn’t just hesitation, it was flat out lack of cooperation on my body’s part. The most frightening part was the lack of strength in my neck. Then it hit me that my stomach muscles weren’t up to the task of getting myself upright again. I’m already used to not being able to get out of chair by myself without a grab bar, but I couldn’t even reach out for anything to pull myself up on.

Suzanna of course was there to help me up, but I can’t ever remember feeling such helplessness in realizing how badly my body is failing me. The sobs poured out of me.

It’s not just the lack of strength. Over the last week I’ve had to go off my pain meds due to stomach bleeding and we have nothing to replace it with. I won’t even try to describe what going without has been like.

Swallowing has become a lot more difficult, it’ll soon be time to switch over to a liquid/soft food diet. For anyone who knows how much I love good food, you might understand how much this reality is kicking my behind.

Then there’s the ongoing discussion about when it’s an appropriate time to have a catheter put in. It’ll probably won’t be long and I’m dreading the arrival of that day.

Sleeping is another interesting proposition. No position is the least bit comfortable, the only way I can get three or four uninterrupted hours of sleep in a row is to knock myself out with a strong sleeping pill. Even then, more often than not these days pain prevents the pill from working for several hours (I’m almost always still up at 3 am), or pain wakes me up again far too early.

I’m done with sugar-coating how I’m really doing. If we’re to have open discussions about dying with dignity, I’m going to lay on the table what it’s like to be living in this body. The realities are harsh.

Even so, I’m still trying to greet each day with smile. When my daughter awakens beside me each morning, I tell her that I’m happy to see her beautiful face.

The measurement of quality of life? Ultimately, that should be mine to define.

Sharing From the Vault…

One of several tasks left on my to-do list is to sort through the vast library of images taken over the last thirty years or so. After my diagnosis Suzanna selected one of her favourite fine art images and I had it printed on canvas, and there are a few of my favourite framed prints saved for her as well.

As for the rest of the photos, I can’t imagine that the fine art film and digital negatives will be of use to anyone after I’m gone. I figure I may as well share some of them while I’m here.

I’d like to offer up the occasional image for free download, sized (I hope appropriately) as wallpaper for a computer, tablet or phone.  I’ll tweak the process as needed as I go along.

If you’ve visited my website at http://www.theintrepidlens.com , you might have seen some of the images there – but being a flash site they can’t be copied. I’d be happy to entertain requests for anything that catches your eye there, with the exception of portraits. None are there right now, but I might get around to putting a few back up. One of the other tasks on my list is to freshen up the website now and again, my visitor counter tells me that quite a few people still visit the site even though my business has been shut for almost two years now. I’m happy to see that the photos are being enjoyed!

The link I’m providing is via DropBox, I don’t believe that you need to do anything except click on the link and save the image to your computer or device if you’d like to have it. This is anonymous, I don’t get any info about who has downloaded it, or how many times.  If you do (or attempt to) download the image, I’d appreciate it if you could let me know just for this first offering if it worked. More importantly if it didn’t work (this can be done anonymously via the comment section on this post, or by email to sessa1@live.ca ).  And feel free to share, all I ask is that if an image is posted on line that credit be given to the photographer. That would be me.

The image is watermarked (although I still haven’t found my Intrepid Lens logo file, it’s somewhere in a box in this apartment on a drive!) I respectfully ask that it not be cropped out if you’re sharing the image.

Tonight’s image is one taken about ten years ago in the Beaches area of Toronto, on black and white film. I was with a photographer friend, although it was early afternoon an exceptionally heavy fog was still laying low on the ground. As dense as pea soup, we had almost given up on shooting for the day when the sun slowly started to burn through.

Here’s the link for the image shown in this post: https://www.dropbox.com/s/xfomsdtyyck1oip/Beach_wallpaper.jpg

A Good Day, But…

Back in April I wrote about a failed attempt at a revised bucket list trip (here) to Toronto instead of my original wish of going to New York City.

Almost two months later, it still hadn’t happened. Both my health and the weather were working against me. And I was suffering from some serious cabin fever.

As the weeks went by it became very clear that I wasn’t well enough to travel to and from Toronto. However, could we perhaps manage a destination that was closer?

With the help of Suzanna and a good friend, I finally escaped these apartment walls for the first time in almost three months (previous trips were no treat, one to the dentist and the other to a Hamilton hospital).

I picked a spot that is special to me, a spot in which I’ve spent many hours photographing and walking. A spot that was perfect for when I had needed quiet contemplation. Seemingly a perfect spot for my great escape.

Poor Suzanna. Let me say that we’re learning the hard way to not take the words “wheelchair accessible” (starting with our apartment unit and building) at face value, and Tuesday was one of those days. What a trouper she was in pushing my chair along deeply rutted gravel paths, despite my urgings to turn back so that she didn’t hurt herself. And thanks to my friend who hauled the spare, and heavy, oxygen tanks. It turns out that we needed all three, I’m sucking up the stuff big time these days.

I was thrilled to be out in the fresh air. The sun was on my face, and when we had a short clearing of smoother path, Suz gave me a fast enough ride to have the wind blow through my hair. Not something I had anticipating feeling again, and it was simply blissful to have those moments with her.

As wonderful as it was to be out, it was a mistake to set it up for myself as fulfillment of the top item on a drastically revised bucket list.

A beautiful spot, but a substitute for New York City it ain’t. There are the rare times that trying to see the glass as half full just doesn’t work that well, and Tuesday was one of them. It didn’t help that it was a spot that I had gotten to know so well as an able-bodied person, and the grand majority of the property was now off limits to me. I think going forward it’s healthier for me if I don’t get such a close look at what’s out of reach.

(This photo wasn’t taken on the trip, it was shot on a morning years ago when I got up – as a dear friend would say – at the crack of stupid to get the early light).

Standing Up For Choice…

I’m prepared to learn that perhaps two or three out of every ten readers of this blog might decide to not come back after I share my thoughts today on a topic that is quite relevant to my situation.

That would be in line with the stats that tell us that 70-80% of Canadians support an issue that’s been hotly debated for some time, but it would seem especially so in the last few weeks.

This issue is one that fall under many names. Dying with dignity, end of life options, gentle death, physician assisted suicide, the right to choose. You might be aware that Vermont recently became the third U.S. state to allow physician assisted death for patients falling within a stringent set of parameters. It likely won’t be long before more states pass similar legislation to allow a dignified, peaceful death for individuals dealing with terminal illness.

The reason I’m coming forward with more detail about my personal situation is because I strongly believe that Canadians should be given the opportunity to make a decision that is right for them. As a person with a life limiting illness, I deserve a voice in the matter.

Dying with dignity is an option that I would like to be available to me legally. I’m not saying that I’m certain that assisted suicide is the right thing for me, or if it is, what I would want the timing to be.

What I do know is that as my health continues to decline and my independence diminishes day by day, I’d like to have some control in how my last weeks or days play out. It’s my life, my body.

Issues surrounding my wish to have a more peaceful death have been under discussion for quite some time with my family, my doctor, my palliative team and the local hospice. By no means has this been an easy road, but it has been for the most part been addressed with respect and compassion.

Well over a year ago, I made two important decisions. The first was to sign my “Do Not Resuscitate” order, under no circumstance do I wish to have heroic measures used to save my life if my body has decided otherwise.

The second was a decision to not have my pacemaker replaced when the battery runs out. For anyone wishing to do the math, it was implanted in 2003. The time I’ve been using it is a whole lot longer than the time that is left on the battery.

This issue is not nearly as simplistic as perhaps I’m making it to be; I’ll share more in the coming weeks. For now I will leave you with a passage that my daughter shared last night with me from the book “Life of Pi”, written by Yann Martel . After reading it, she asked me if this is what dying slowly felt like to me.

“Oncoming death is terrible enough, but worse still is oncoming death with time to spare, time in which all the happiness that was yours and all the happiness that might have become yours becomes clear to you. You see with utter lucidity all that you are losing. The sight brings on an oppressive sadness that no car about to hit you or water about to drown you can match. The feeling is truly unbearable.”

I told her that perhaps I didn’t see it as unbearable – yet – I try very hard to not allow myself to go there. The passage did strike me as particularly poignant looking at it from the perspective of a younger person who will not have the opportunity to live to a ripe old age.

The fact is that the end in many ways looks like it could be quite ugly. Yet there are measures that can be taken to ensure that the end is not as awful as it might be. That to me is something worth speaking up about.