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.
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.
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.
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.
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
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).
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.
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