What Goes Around, Comes Around

Some of you know that a dear friend recently gave me the gift of some downloadable university lectures (and another friend kindly provided the bandwidth for me to transfer them to my laptop). The course which I selected was Great World Religions; it’s been absolutely fascinating and what I’ve heard has led to some truly amazing conversations with friends. Normally I’d consider religion to be a sensitive subject to address, but these are friends whom I trust to converse about these issues without judgement.

The subject of karma is often brought up. Many of you may understand why I struggle with this. Over the last year and a half I’ve faced the end of my marriage/loss of my partner and most avid supporter, the loss of our home, the shutdown of my business,  and my only child leaving for university. Not to mention that whole serious illness business. All of these falling into the category of the top stressors one can face in life. And all at once. I’ve tried very hard to be a loving, honest and kind person (as like most people, at times I’ve had my failures in my attempts to be the best person I can be). Asking “why me?” seems a natural question to ask.

As I go through my course, one message seems to be abundantly clear. All religions, however differently worded seem to attempt to follow a version of the Golden Rule. Treat others as you wish to be treated. Karma as I understand it follows a similar basic concept. What you give out comes back to you. The religions vary as to whether one might expect the repercussions to occur in this lifetime or another; but it all comes down to doing the right thing. “Work hard, be kind”, to take a quote from an inspiring documentary that was loaned to me about a teacher in a Los Angeles elementary school.

Seven years ago when we moved to Burlington, I was trying to gain a foothold locally for my portrait photography business. It’s often suggested to photographers starting out in a new market to donate one’s services to a local charity; when a local clothing store mentioned that they’d gladly accept a portrait package to be auctioned off in support of the Juravinski Cancer Centre in Hamilton, I was pleased to participate.

Shortly thereafter, I had the pleasure of photographing the family of the woman who had placed the highest bid at the auction. And it was my pleasure to do so several times more over the years; this in turn led to referrals to photograph quite a few of their friends. One little donation led to many photo gigs, not to mention to new friends who might well be among those of you reading this.

It didn’t go without notice and a smile that yesterday I sat in an examination room at that same hospital, the Juravinksi Cancer Centre. I was hearing the news that upon review of the pathology of my bone tumours (I’m the first case of Erdheim Chester that they’ve seen) – they’d be happy to give radiation a try. In their opinion, I had a about an 80% chance of pain reduction. We’d start on both legs (I received confirmation that the tumours have spread to the left side in addition to the right). If successful, we’d move to where other bone tumours have grown and cause me significant pain.

The doctors had clearly done their research. The few ECD patients elsewhere in the  world who’d tried radiation treatment for pain had been administered a lower dose, and in these cases it appears that pain returned fairly soon after completion of the treatment. With my permission, they were proposing high doses of radiation in hopes that pain relief would be longer lasting.

In the next week or so I’ll be heading over to the hospital to get my marker tattoos to accurately guide the radiation beams. My vanity disappeared long ago; I’m so marked up by surgery and accident scars I’m not the least bit bothered by the permanent markings. Heck, we can even have a bit of fun playing connect the dots to see who comes up with the most creative design!

The treatment schedule unfortunately is likely to be delayed, two months out and my daughter and I are still without a home or financial support of any kind. The last thing I need is to be packing up again (albeit on a much smaller scale this time), moving and unpacking during the rigors and side effects of treatment.

But there is one huge bonus in this. For once, funding of treatment is not an issue, all radiation treatments are going to be taken care of.  Bless you karma. I’d like to believe this has come my way because the owner of a lovely little shop in Burlington gave me the chance to give so many years ago.

P.S. My mail was just picked up, my first opportunity in the last week. Nine more anonymous NYC postcards. Thank you, whoever you are! I promise that once I’m in my own place I’ll make every effort to watch all of your favourite NYC themed movies. Some of which I’ve seen (and will happily watch again) and others will be new for me. What a delightful surprise to distract me on a day full of calls and paperwork I’d rather not be tackling!

A Bit of Levity

I'll soon explain in another post why I was there today (and for me, it's significant Erdheim Chester Disease related news!), but I wanted to share the following conversation overhead in my oncologist's waiting room this afternoon. Some of you have already read this on Facebook, I'm happy to see the "likes" to know that you found it amusing as well. I was hoping it wasn't the case that I get out so infrequently in public these days that I find just about anything funny! 

Envision three elderly women, seated with walkers at their side. Very animated as they speak, and apparently unaware that everyone else could hear them.

"What's your favourite ice cream flavour?" They exchange replies.
"How about the best burger place?" again, answering each other.

"Did you know that bar food is better than anything else?" Oh really?
"Have you ever boiled lettuce by accident, thinking you were making cabbage soup?"

 By this time, I look up from my iPad to realize that these women had the rapt attention (yet the pretense of not paying heed) of all the other patients in the room.

 "Have you ever tooted on a bus and pretended that someone else did it?"

And with that, I got called into my appointment so I'll never know if it's just something that elderly ladies in general try to get away with.
:-)

Can't Think of a Better Problem to Have

The view is pretty astounding from where I am at the moment. The majestic New York City skyline spreads out before me as I look out from midtown Manhattan down towards the Financial District. I'm straining to pick out the neighbourhoods I've familiarized myself with over the years as I've researched my trip to the Big Apple. It's a beautiful day and I've let myself get lost in the wonderous scene in front of me.

All this from the comfort of my bed. Across the room sits a most spectacular (and huge!) photo canvas, in a style of how I would likely have photographed the view had I been there to do it myself. With a fish eye lens, printed in black and white, capturing the wispy clouds as they waft by on an otherwise clear day.

The canvas, along with a beautiful note and an inspiring book for my daughter (with a heartfelt inscription) were waiting at the entrance of our temporary home when I came home from the hospital today. The note and inscription, unsigned.

Here's the wonderful problem. Although I think I might have narrowed the suspects down a bit by the handwriting and phrasing, I can't be certain of who presented us with these amazing gifts. It could be one of several women I'm so very lucky to count as my friends (not that a man wouldn't be this thoughful, but I suspect the lavender ribbon around the canvas and the smiley faces in the note were the work of the fairer sex).

Just when I think I'm pretty sure it's one friend, I allow myself to reconsider that it might be another. At first I though it must be a local friend, but then again I have some pretty darned ingenious friends who live far away who could have pulled off a surprise like this too.

Over the last hours I've let myself ponder over who this very thoughtful soul might be - but instead I'm going to marvel in the fact that I'm blessed to be in the positive of wondering at all.

Whomever you are, thank you. You must have your reasons for leaving these wonderful gifts anonymously, and I'll respect that. But know that when we have a place to call home, I'll be watching the faces of all those who visit me to see if you're scanning the apartment to see where I've hung this gorgeous photo. I promise you won't have to search very long at all, New York will be there for me to enjoy anytime I like. And thank you for including my daughter in your generosity (and by the enscription there was a solid clue that you've met her!)


To anyone else who contributes to the "New York Project", I do hope that you'll give me a chance to thank you directly. Friends (and friends-to-be) have gone to much trouble to launch my virtual adventure. Dear readers - please know that every contribution however brief is much appreciated. It all adds up to one heck of a collection of New York experiences that I'll treasure.

Resurrecting the "New York Project"

When I was diagnosed three years ago with Erdheim-Chester Disease, my then-husband asked me to think about my bucket list. What would I want to do, see, experience, taste, feel, or own before it would become too late?

The first thing on my list was easy and it never felt like it actually needed to be written down. I’ll let you figure that one out, let’s just say that my family situation couldn’t be further from what I’d envisioned or had been promised would be there for me unconditionally when I was first told that I was facing a daunting future. 

The first  (and only!) “official” thing on my bucket list was a trip to New York City. I’d been privileged to travel a fair amount in my twenties – visiting wonderful cities around the world but somehow never made it to the Big Apple. To be clear I had been in NYC airspace many times in my frequent commute to a second office in Princeton, New Jersey in the mid 90’s – always hoping for clear weather for a good view of Manhattan and the Statue of Liberty as the plane made its descent into Newark Airport.

When I imagined visiting the city on my first and likely only trip, I saw myself enraptured by all that my senses could take in. We’d be trying new flavours offered up by street food vendors, I’d be walking through Central Park hand in hand with my sweetheart, visiting the MOMA trying to understand what the artist was trying to convey as we viewed some abstract piece of work, checking out the creativity of the High Line Park ... the list goes on. As I planned my trip it became apparent I’d have to trim down my list of “want-to-do”s – a week wouldn’t be nearly enough!

And by some miracle, my leg pain would subside just enough to do the walking that would be required to really experience New York. A girl can wish, can’t she? And of course I’d have my camera around my neck the entire time – except for the times that it would be raised to my eye to capture what I would interpret as the essence of the city. The people, the architecture, the sights (the sounds and smells however would have to be committed to memory rather than a digital file!)

The trip never happened. The risk of going across the border without medical insurance was too high, and even walking half a city block was now out of the question. When we realized about a year and a half ago that this trip wasn’t going to happen, my then-husband made a lovely suggestion. Why not go to New York virtually? He immediately went to work contacting friends and family asking them to share their experiences, and a few did before our marriage suddenly took a very different direction and my bucket list had no importance to me at all anymore.

I recognize that I still very much want to go, but it’s truly not an option. A dear friend took me on a virtual trip to NYC last November, it’s a gift that I’ll treasure always. If you’re visiting me, I’d be happy to share the experience with you – it was a gift put together with forethought, ingenuity, a bit of gumption and most of all lots of love.

And now I reach out to all of you to help me fill “my week” in New York City. If you’ve had the opportunity to visit, live or dream of going there yourself, I’d be most grateful if you’d share your experiences (or anticipated ones if you, like me, would love the chance to see it for yourself but haven’t). Please share your funny stories about a wild cab ride, a fantastic meal, a sight you’ll never forget, a description of a New Yorker who was imprinted in your memory. Please share photos, quotes, tales of adventure (or misadventure!). Even if it’s just a quick sentence – or more if you’ve got a great story to share, I’d be honoured if you’d send me your version of what New York is to you. With Google Streetview, I love looking up the locations that are mentioned to me so please include street addresses, it certainly enhances the experience!

With that, I thank you in advance for your contributions – and thanks to those of you who had contributed when this project had been initiated last year. It’s time for me to pick it up again on my own now. I’m including a link to a blog post written just after I was diagnosed including images by a wonderful photographer named Aris Wells, who at that time gave me her permission to post images that she had taken and I’m taking liberties in sharing them again.  http://withoutamanual.blogspot.ca/2009/08/my-bucket-list-and-new-friends.html

To share your New York moments please email me at sessa1@live.ca, or if you’re comfortable sharing with my blog readers, by all means post as a comment to this post (you can include your name or contribute anonymously). Let me know if snail mail works better for you, I don’t have a home yet but do have a post office box address.

It’s not the same as being in New York, but it feels like with your help it could get very close.

R U Kidding?

My daughter tells me that I'm a really cool mom. High praise coming from an eighteen year old! But of course by using that title for my post I've just made myself totally uncool. Does not caring that it might appear uncool make my cool again? You'll have to ask her yourself :-)

Really though, a week we could have done without.

I'll start off with my daughter's car accident on Saturday. She'll be fine but it was quite a scare for us. Whiplash and her body reacted to the jostling with a fever that went over 104 degrees. Several times. Her first ride in an ambulance ensued (can we make that the last one too honey?) Lots of physio and massage therapy and she's on the mend. As for the car, it really didn't take it well either. Or rather my Visa didn't. Less than a week later and we can (sort of) laugh about it. But only a little bit.

Then there was my cardiac assessment today at Toronto Western, the news was not welcomed with open arms. I need to undergo an emergency specialized cardiac CT scan on Monday (and I have to forego chocolate in the meantime - simply unacceptable!), followed by a decision as to whether surgery is required. Those of us familar with Erdheim Chester Disease might know the term "coated aorta", and it's not a good thing. The only thing I want coated these days is the outside of me, with all this weight loss I'm shivering half the time even in the heat southern Ontario is dealing with. But on the upside - a roomful of doctors agreed that I'm just about ready to take the medical school entrance exam with all that I've learned during my many, many hospital visits. I speak English, some French and German and enough medical jargon to impress the chief resident. C'mon -for a lark let me just see how high I can score!

Almost six weeks now without a home. It's getting quite tiresome living out of a suitcase. At least once a day I think to myself "I'll go get my....oh, yeah - it's in storage" Grrrrrr. My daughter is being such a trouper over this situation but it weighs heavily on both of us. And although I know she loves me very much, sharing a small room and a bed with your mom isn't the most fun. One of us likes things quite neat, the other not so much. You might envision how I'm dropping down on the cool mom scale as each day passes.

This weekend I'll be trying to figure out how I'll kill lots of waiting time in hospitals  next week(Thursday will be spent at the cancer centre assessing surgery/radiation for pain management). There's only so much of Words with Friends (anyone wanna play with me?), Angry Birds, Plants vs. Zombies, Facebook, Twitter and Zite (thanks for the recommendation for that app D., it's as engrossing as you promised!) a girl can take.

Bring on tomorrow...but I won't turn down a completely boring day where my biggest concern is pondering whether my daughter thinks that the title to this post was indeed completely uncool :-)

When One Door Closes, Another Door...

Can't even be nudged open a tiny crack.
I had mistakenly believed that the Ontarians with Disabilities Act meant that any building erected after a certain date had to be handicapped accessible. Sadly I'm learning that term usually means only if one has additional persons to help.

 In an attempt to be somewhat optimistic that I'd soon be able to find a home for myself and my daughter I had a good friend take me to view a few apartments. I was dropped off at the front door to avoid the painful walk through the parking lot. Being a crisp morning, I thought I'd go into the entry foyer to warm up and wait for my friend to join me.

A harsh reality hit me. The doors were just too heavy for me to budge (my increasing weakness prevents me from doing lots of things for myself these days, but having relied on automated doors at my usual haunts of hospitals and clinics I hadn't even attempted a non-automated door in quite a while). Simply not an option for accommodation if I can't get the front door open by myself.

And so the morning continued in much the same manner. Each entry door was simply too heavy for me to manage on my own. We thought we got lucky with one building that had a handicapped entry button - but it proved to be out of order (and the apartment once we got in to see it was simply disgusting. Even the agent agreed that it needed a total overhaul to make it livable). I was already looking at the top end of what I'd been counselled I might be able to afford once all the legal separation details are at long last settled, and this was unnerving to see what was on offer.

I've since learned that newer buildings meet Disability Code by having doors wide enough for a wheelchair, but that only works if you have two people with you. One to push the wheelchair, the other to hold the door open. This wasn't coming together at all in the way we had hoped and prayed for under already trying circumstances. So many apartments that had seemed like they would meet our very basic requirements for an affordable apartment in a safe neighbourhood were no longer options. 90% or more of potential housing off the list in one fell swoop - and I'm only on crutches at this point, totally out of the question when a wheelchair is required.

As you might know from previous posts, my daughter and are currently without a home. Amazing friends have rescued me from the disheartening alternative of a homeless shelter offered by social services, but "couch-surfing" in my condition is far from ideal. My daughter and I currently share a small room, and share a bathroom with others (those of you who are familiar with my susceptibility to infection will understand the concerns there) and have to deal with stairs. And lots of them. And relying on friends to feed us - and I'm surely driving them up the wall with the restricted diet I have to adhere to to avoid the dreaded Epi-Pen.

Living out of suitcases for the last four weeks is taking its toll. I end up resting in bed for most of the day in an attempt to take the pressure off my leg and hip. Talk about a serious case of cabin fever! No TV in there (I miss my Corrie!), limited internet access, a computer that shuts down from overheating after just ten minutes of use. And almost invariably I've forgotten my towel or toiletries after making the trek down the hall to the bathroom. Don't mistake me, I'm so very grateful for the friends who have given us shelter when there wasn't any other viable option - but we all recognize that this was meant to be a temporary fix to a larger problem that should have been solved long ago.

This goal of a fixed address slides further and further away. Landlords turn me down immediately for rental units, I have no income and insufficient liquid assets to assure them that I can pay out a for a full year of a lease (a good portion of my retirement savings was depleted over the last three years and most of what's left is locked into a pension fund that I can't access). And no landlord will allow me to alter a rental unit with mobility aids required to allow me to remain independant as long as possible.

Nor can I buy a small condo because the portion of the house proceeds that I'm entitled to stay in trust until legalities of my separation are worked out. Buying a condo would be the ideal scenario so that I could make alterations (for example replacing a bathtub with a shower/seat) as my illness progresses and stay as long as possible in a home of my own before moving to a nursing home or into hospice care. If you know me personally, you know how doggedly determined I am to be independent and do as much for myself as possible. That's another post altogether.

Over the last few months I check the real estate listings first thing upon waking; they will have been updated overnight. There are only a few complexes in Burlington with that precious handicapped button that even come close to my very meager budget (where it would be best  for me to stay to be close to my daughter's father for her sake, my friends, the healthcare network that's been established with social services). Apartments are listed, and disappear almost as quickly. And now that we're into summer, hardly any appear at all.

The thought of further imposing on friends deeply concerns us; my daughter and I are both anxious to find a place of our own. In two short months she heads back to university and for her own peace of mind she wants to see for herself that I've been ensconced in a safe environment and that the nurses and personal care workers are in place. And that care too is at risk right now without proof of permanent residency in Burlington.

I was reading a piece yesterday that actress Rita Wilson wrote about her dear friend Nora Ephron, who sadly passed away this week. She wrote " How many times can you say that, as adults, you lived with your friends over the course of months?" after Nora and her husband gave a home to Rita and her husband Tom Hanks after their apartment had suffered severe water damage.

Hopefully you never find a need to impose on anyone in this way, but we certainly count ourselves very blessed to have the kind of friends who would welcome us in the way they have. However it's difficult to accept that my health issues create a burden on others  - especially knowing that there's a window of independence left for me that I've not been able to take advantage of.

And c’mon builders – how much more can it cost to install automated doors on the front door of an apartment building?

By The Skin of My Teeth

I'm not a big Twitterer myself, but do enjoy following a number of people.

My daughter for one, who can sum up quite a lot in only 140 characters. She often posts with courage that I lack in admitting her struggles with what she/we have been going through. You're right my sweetheart, a lot of this really, really sucks. You may put it in different words, but know that I hear you. For the beautiful, honest, loving, smart, courageous (and often hilarous) person you've always been. I'm so proud to share you with others in your life who love and care for you. This post is dedicated to you.

I digress, back to Twitter. I follow Jasmine Star, a California wedding photographer (whose work is just gorgeous!) - who could have easily have gone into a career of standup comedy - her Tweets often make me laugh (I'm a fork-catching ninja too!) and are at times inspirational. They lead me to wish I knew her whole family reading the wonderful things she says about them. We used to have the same wedding anniversary. Don't worry Jasmine, I won't hold it against you that we no longer have that in common.

I recently started following a gentleman by the name of David Roads (Motivational Quotes). A few hours ago he posted the following:

'We all at certain times in our lives find ourselves broken. True strength is found in picking up the pieces".

Broken. This is a word that has come up a lot in conversations over the last year and some. Broken. What does that mean? I've said I feel broken. My physical body is surely broken, and my spirit at times has been broken. Almost as palpable had my spine been snapped in two.

By admitting that I've felt broken, others have shared that they too have felt broken at times in their life. We have words for this emotional pain; shattered, torn apart, ripped open, stabbed in the heart, crushed. All physical descriptions for that which has devastated one's very soul and not left a single mark of evidence on the outside of what has happened on the inside.

I'm not alone. Having felt broken doesn't make me less of a person. It doesn't make me irrational, unbalanced or immature (I'm using the gentler of the descriptives that have been offered up to me). It doesn't make me undeserving of respect and compassion. It makes me human. And if you've been there, welcome to the clan - you're human too.

I'm picking up the pieces. By the skin of my teeth. With the love and support of friends, family and even lots of people I hardly know (since starting this blog three years ago, I'm astounded as to how many strangers have taken the time to write to me with words of encouragement, faith and stories of their own to share).

Major obstacles keep being thrown in my way and sometimes I do feel myself nearing the lip of the Pit of Despair (Princess Bride reference - one of my alltime favourite movies. I could use a Wesley of my own right about now!)

But I pick up the pieces. And try to pick up my daughter's pieces. True strength, or is it having just enough optimism to hope that tomorrow will be better?