Not Driving the Neighbours Crazy…

I have to be cognizant that absence from the blog may lead readers to wonder what’s happened to me, I get worried emails asking if all is okay at my end. Thank you for checking in on me :-)

This blog now averages about 200 hits a day, a good number of those being repeat visitors. I appreciate that so many of you are coming along for the ride on this journey. To know that I’m in the thoughts and prayers of so many means a great deal to me.

After reading my last post, one might have feared that I started singing and just didn’t stop! Not the case, I’ve had other endeavours on my plate.

The task that’s taken the most time is getting back on line with a computer. Some of you know that my laptop died during the summer (after a slow and painful decline), leaving me without access to much of my data, contacts, a printer, scanner etc. Quite a challenge when I had pressing legal issues to take care of.

I’m back on line thankfully and working away on getting programs reloaded, data synchronized – but the best part of all has been getting access once again to my libraries of photos! In case you’re not aware, before illness stopped my career short in its track I was a family and fine art photographer.

As the photos moved from my backup hard drives to the computer, images would briefly flash across the screen. It felt like I was greeting old friends. I was explaining to a friend the other day who was asking about some of my older images (and we’re talking up to thirty odd years ago) – I can remember with great clarity what circumstances surrounded the capture of each image. What the weather was like, what sort of mood I was in (and there were generally two modes – joyful or contemplative), who I was with (or had just left or was about to meet up with).

The images form a story of my life. And in the case of the portraiture, the stories of others as well. An opportunity and privilege that I will always hold dear.

Below I share the first image that was transferred over last night. Bronte Creek Park, just above freezing temperatures. Taken as I was leaving the park after what I considered a successful afternoon of shooting new images for a greeting card series. Bliss.

With a Song In My Heart...

The moment hit me with a slap, and brought tears to my eyes. 

The realization that although I've been playing music (quietly!) in my new place once in a while - more so for company, it was first time in almost two years that I was actually singing along. It startled me, I hadn't even realized that I was doing it - until Scrabble tried singing along in the cutest soft mewl (that little creature is one of the best things to come into my life in quite a while - human friends notwithstanding!)

On top of it, I was singing to a song that I've been skipping over on my play list since my marriage ended - it raised sad and painful memories. Tonight was different, it's almost as if I was embracing all that the song had ever meant to me (sorry, not sharing the name of the tune tonight - I have my reason which in time may make itself known).

It's been a challenging week, but there's been a reassuring sense of peace flowing alongside of the pain and difficulties. Lately I find that I'm giving gifts to myself. Burning a scented candle when it's just me, using the good dishes, cooking a meal for myself and a friend. Saying yes to an invitation out last night when I normally would have declined out of exhaustion. And singing (although many wouldn't consider it a gift, I'd like to believe that the kitten was singing along. However in all likelihood he was raising an objection!) 

It hasn't hurt that I've had some positive male attention in the last couple of days, letting me know that although what I see is a broken body - some out there consider me beautiful nonetheless. I shouldn't let a man's opinion dictate how I feel about myself - but heck, I could write a whole book on the impact that cruel words can have. The last bout of that kind of talk just about broke me and I've been trying to pull myself up ever since. 

It's helped that I'm filling my head with new ideas, knowledge and concepts - thanks to a dear friend I have an array of on-line college courses that I'm working through. At the moment I'm taking a course that covers the basics of what my daughter is studying at university, it allows me to feel a little more connected to her through the physical distance between us.

It helped that I had loads of kindness tossed my way when I ran into more obstacles last week. Maybe a little more than usual - but lots of it surrounds me at all times.

It helps that I'm now certain beyond doubt that I'm still me. My illness hasn't changed the core of who I am and what I believe in, if anything it shows me the path towards becoming a better person. Perhaps a reflection of those beautiful souls whom I spend my time with?

It feels damned good to sing out the clutter that's been stuck inside of me. I'll do my best to not hurt the neighbours' ears, but as for Scrabble, well - he can either join in or leave the room because I'm not turning back now.

Wanted - New Keychain...

When the previous tenants of my apartment handed the keys over to me, they were all together on one link. I handed one set over to my daughter, and not having a key chain myself - I kept carrying the new keys over the last few months as they were presented to me.

I misplace my keys a lot, not an easy feat in a small apartment but my friends who are in the same ballpark in age assure me they're often doing the same. I don't yet have any sort of an entryway table to lay keys and the mail down on, so those items usually travel elsewhere into the apartment. I'm just not yet consistent about the destination.

What makes my keys a bit easier to find is the bright purple colour of the keychain.

Last week one of my volunteers took me to the bank, a trip to my safety deposit box was required. At the customer service representative's desk (I don't think we're to call the staff tellers anymore, are we?) I searched through my purse to find my ID. In doing so (I too have one of those bottomless pit purses in which I'm sure I'd be as likely to find a sink stopper as I would old receipts with the way it looks some days in there), I laid my keys on the counter.

"Ready for the weekend there, are you Sandy?" piped in my volunteer. I looked at her quizzically, and she elaborated. "Always ready for a beer?" with a grin on her face.

All this time I've been going around with a purple beer bottle opener on my key chain, thinking it was a tiny ski. 

So for all of you who might have seen my keys, I can only imagine what judgements you might have made. No, I'm not tossing back Heinekens or Coronas to ease my pain, I've never even had a beer in my life. But this keychain confusion has led to some fantastic belly laughs with friends since this happened. If you can't laugh at yourself, there's always someone not too far away to laugh at you. It's far more enjoyable though to beat them to the punch.

Now I just need to find a keychain that won't scream substance abuse issues. For the record, I thought that the raised part of the keychain represented the boot binding. Clearly, I've not skied in my my life...but then again, not opened a beer bottle either!

Making Lemonade...

Maybe you're expecting me to offer up the adage "when life hands you lemons, make lemonade" - certainly a philosophy I try to follow but really, I'm going to make lemonade.

Despite a lot of challenges happening in my life (when is it not a roller coaster?) I wanted to share some of the lighter moments of the last few weeks. Some of these references might make no sense at all to you; in that case just ignore them - there are thank you messages in here for friends whom I know might be shy about me being any more specific.

Today a new friend dropped off a bag of my very favourite fruit, Meyer lemons - never having heard of them but he had read on Facebook how excited I was that they were back in season. Along with that a jar of Nutella (have I ever mentioned that particular obsession on the blog?) and also very thoughtfully, a new pain cream to try out. Never having tried to make lemonade with Meyer lemons before, it's high time I tried a glassful. As for the rest, they'll be impetus to actually cook something for myself this week (as terrific as the donated meals have been, I want to break out my pots and pans!)

A friend's Mom wanted to make sure that I was able to get something for myself that falls into the category of "I would like" rather than the basics that my very strict budget allows. A very generous gift which allows me a few treats that I've had to take out of my budget. First on the list? Some new sweaters and a pair of colourful shoes! 

My wheelchair arrived this morning (which will be invaluable in hunting down those sweaters and shoes...) I'm getting coaching on how to pull off a decent wheelie, something to practice when I can't sleep at night perhaps? Two additional assistive devices have been generously purchased by friends. One will be helping me avoid waking up with the "night gasps" (which are frightening episodes I could do without, thank you very much) with the purchase of the bed wedge, and another pair of friends are helping to ensure I can get more safely into the tub every morning. 'Cause the bathroom floor is hard and I break easily now!

Yesterday was quite a therapeutic afternoon, sitting by a campfire with a friend as we fed the fire. I brought the fuel. And for those who know where I was, the answer to the question is green and yellow.

An aforementioned friend enlisted the help of another to take me on another delightful virtual New York City excursion. There may be a few too many photos floating around of me as the Statue of Liberty, the one with the pumpkin I have to blame on the volunteer who leads me into the most trouble (but darned fun trouble...)

Six Feet Under, Season One with more to come. Yes, the person who loaned the DVDs to me can also see the humour in this. The funniest part is that it was her suggestion (I'm grateful that she so often forgets that I'm not well and we can laugh about the irony together).

There are so many other wonderful moments, but I'll finish with one that will be a long lasting reminder of what joys can be found in the midst of the messes. In my lap sits the cutest and furriest four pounds of adorableness, my new kitten Scrabble. My conversation with the group of palliative volunteers finally pushed me over the edge to adopt a wee companion, I recognized that I truly need to be needed. I need to care for someone to feel useful, and this little guy needs me. 

What has warmed my heart the most is that whenever a loud noise comes from the industrial area situated behind me, Scrabble makes a made dash for the safety of my lap. Being trusted as a safe place is the best feeling ever. And the tickling I get when he insists on licking under my chin in the middle of the night puts a big smile on my face too.

The Difference An Advocate Can Make....(corrected)

Correction to text below. Wow - what a error to make! A few paragraphs down I had stated that the latter (without an advocate) resulted in better health care. What I hope became clear in the sentence following is that I meant former - with an advocate results in better health care. Some who know the details of how I came to be without an advocate by my side may suggest it was one intriguing Freudian slip...

I'm bowled over by the volume of support coming my way after yesterday's post, thank you to all who took time to express outrage and share incredibly kind offers to help improve my situation.

Let me first give you an update. This morning I received a call from the occupational therapist who had visited yesterday. After leaving here yesterday - visibly upset by the rules which were working against me in trying to be as comfortable and independent as possible - she placed a lengthy call to her supervisors to ask for special consideration for my situation.

Her pleading worked, I'm now permitted to keep my wheelchair pad - and I get a wheelchair to go with it. As grateful as I am, I'm disturbed by the inequity in our health care system (and I have a few bones to pick with our family law system as well) when it comes to how rare and/or serious illness (and the unique situations that come attached to them) are handled.

I'm grateful for the wheelchair that should be arriving soon, but why shouldn't anyone in my situation have the same opportunities for mobility assistance regardless of which town, city or province they live in? How does it happen that a palliative patient can have fewer (or no) assistive devices available to them than someone who is chronically ill?

Having had far more experience in the health care system than the average citizen, I could write a book on the subject of inequities to be encountered. In my humble opinion, there are lots of wonderful aspects to our health care system in Canada - but there's also plenty of room for improvement for patients with rare illnesses.

And then there's the second point on my mind regarding what has transpired over the last two days.  Over the last years I've been a traveller through the health care system with both an advocate at my side, and without one. From my experiences,  the latter (I mean former!!!!) leads to better health care. I've come to the conclusion that there is absolutely no doubt about that statement. Someone who sits by as a second set of ears during appointments, someone who makes sure that  all questions are adequately answered, someone to think outside of the box when roadblocks are faced. Someone to spur insurance companies and government agencies to do the right thing. Should it really have taken me being interviewed last year by the CBC to get funding for one of my treatments? And I note that the interview wouldn't have even happened had I not had an advocate tirelessly working on my behalf. Every single step is a battle in itself, and now doing this on my own I find myself falling between the cracks over and over again.

It's all well and good if one is only remembering what I used to be capable of; I was a person who had perhaps an overdeveloped sense of right and wrong and would fight for fairness for all parties concerned in a situation. That person just doesn't have much fight left in her, sometimes just getting showered and dressed for the day has taken all the energy I had available for the day.

I thank my advocates who've stepped in to make today better. My occupational therapist who pleaded for rules to be bent, the friends who quickly offered to rent/buy the equipment I need to maintain a small amount of independence and better physical comfort. 

I'm grateful for the friends (and sometimes near strangers) who offer this help knowing how hard it is to me to accept it, and also know me to be a person who'll try hard to fix a problem myself before ever letting on that I need assistance. Stubborn old me has to admit it. I just can't get through the rest of this journey without others stepping in to take the reins when I'm too tired to hold them.

What Else is Coming My Way?

This is one seriously messed up set of circumstances that I try to maintain some equilibrium within.

One short week ago, I was speaking to a group of volunteers about how palliative patients can be assisted by maintaining some normalcy in life wherever possible, and how much it has meant to me that my team of volunteers has helped me in doing that.

A meeting with my occupational therapist was set up for today, requested by one of my nurses who is keenly aware of my declining health. On the list were the following items: a wedge for my mattress to hopefully allow me to breathe more easily at night (laying down causes shortness of breath, severe enough that I have to try to sleep sitting up on some nights), and a wheelchair since it's becoming increasing difficult to walk or stand for more than a few minutes at a time.

The occupational therapist also recommended some amendments to the bathroom to make bathing easier.

All well and good, yet our regional social services have recently changed their policy so that palliative patients no longer receive any assistive devices. I can have a loan for twenty eight days, but no longer. So I'd better plan on passing within the month or I'll find myself back at square one.

On top of this, the rubber wheelchair pad that many of you have seen me toting around gets taken away too. This has allowed me to tolerate the drives to hospital appointments in Toronto, to sit on harder surfaces for a short while. I've fought that battle for some months, but solidly lost that one today.

The suggestion was to see if my doctor would take me off palliative status in order to get these devices (??? You get help if you're not as sick?) In which case I'd lose my volunteers - so there go the outings that have brought me a lot of joy of late - so no point in getting that wheelchair. To add to this, if I move to Oakville (the neighbouring jurisdiction) I could have all the assistive devices I could want at no cost. I can't even afford many of the basics in the one bedroom where I'm living now, much less move to that affluent community. Moving from the cheapest place I could find with handicapped accessible doors is not an option.

My ex-husband's insurance might possible cover some or all of these assistive items, but the legwork is beyond my current physical and technological capabilities (getting around to the various suppliers to get quotes is a challenge, and the computer has died on me once again, so no printer, scanner etc.) On top of that I need to get a denial letter from the government plan (which I already know I don't quality for because of a short-sighted decision re Canada pension plan contributions when opening up my photo business ten years ago). If you live in my province, you're probably aware that filling that requirement will take months.

Is it any wonder that my head is reeling right now, wondering how the heck I'm supposed to manage all of this on my own? I've tried so hard to believe that life continues to throw challenges at me as part of a bigger plan. I'm getting to the point that the longer this goes on, the less I understand how one lifetime can be filled with so many obstacles. It's very difficult to get on with the process of just trying to do some living when one has to spend so much time answering the question being asked of why I'm still kicking around. It's an answer I don't have.

Sharing the Journey...

When I'd thought about the conversation I was about to have last Monday evening, I'd envisioned a lonely table in a bar too dimly lit to be able to recognize anyone further than halfway across the room. Two glasses, and a bottle of scotch.

For the record I don't drink scotch, nor have I ever. Outside of the occasional (as in maybe twice a year) half glass of wine, I don't drink alcohol; it leaves me feeling outside of myself and it's not a feeling I enjoy. I don't know why I equate solemn conversations with a good stiff drink - too many Hollywood movies I suppose filling my brain with such ideas.

In a previous post I'd mentioned that I'd been asked to speak to a group of volunteers being trained in palliative care. A brave move on their part to participate in this program, the word palliative can scare many a folk away and here were men and women who were embracing the idea of caring for patients with a poor prognosis.

Things happened pretty quickly last weekend starting with a call on Saturday afternoon from the training coordinator, asking if I would be up to speaking to his students in two days time. How does one go about preparing to have a conversation like this? To share with complete strangers what it feels like to be facing this journey? To let them know what I need and want from a volunteer?

The safest bet seemed to be to not overthink what might transpire. My first priority would be to establish that I spoke only for myself and my own experiences, I couldn't possibly come near to accurately expressing how other palliative patients might feel about their own unique situations.

I won't go into the long winded details of the hour and a half that I spent with this large group of caring and generous individuals. I went into it wanting to be of some small help (I feel pretty useless most days), but what I received from them was a far greater gift. I left feeling like I'd had that good stiff drink and had made new friends in the process, the welcome and the goodbye I received from the group lifted me to a place I'd not yet visited along this journey. 

My foremost goal had been to not scare these volunteers off the idea of caring for palliative patients; my participation in the evening felt like a great deal of responsibility. Turns out that we shared many fears. The fear of saying the wrong thing, the fear of not being helpful, the fear of offending, the fear of being misunderstood when ones' intentions are true.

There was a moment that struck me particularly deeply that evening. We'd been discussing what missteps (and I reiterate that I can speak only for myself here) can happen when strangers say things about my situation that I find difficult to digest. An example might be when I'm chided by a complete stranger for using the elevator when travelling only one level down, instead of taking the stairs like a person my age ought to. In their opinion I appear to be able-bodied (apparently if I can walk a very short distance into the elevator  and stand in it for a few moments I may as well be running marathons!)

There was a collective sigh of relief in the room when I answered the question of "have any of your volunteers made a misstep?" My answer came very quickly, and it was a decisive "No". 99% of what I need of a volunteer comes from the fact that each of these individuals were in that room on Monday evening. That they wanted to be a part of the journey for patients who have a rough road ahead. 

And an important detail, a good deal of the conversation was far from solemn - champagne would have been a more appropriate accompaniment from my perspective!

Showing up and wanting to be with me on my journey is just about everything I need wrapped in one beautiful package. I thank God and my lucky stars to have so many of these beautiful gifts around me.

A V-8 Moment (Among Others)...

If my posts a few weeks back about discovering what the buttons on my TV remote did made you wonder how I manage to match my socks in the morning, you'll love this story. I promised to post this one for my new friend S. What would my daughter call it? Epic fail? :-)

You've probably come to the conclusion that I'm not terribly keen on my new/old apartment. I've been here two months and it's not yet growing on me. Hopefully the hanging of some artwork with the help of friends over the next week will help make it feel more like home.

The one area of the apartment which I do like more than the rest is my kitchen. I wrote of the beautiful kitchen counters (which on move-in day I nearly cracked when I made the mistake of trying to lift my bowl mixer on my own and dropped it). The previous owners had renovated seven years earlier and had kept it in good shape. 

I hardly use a microwave, yet one sits above the stove where I'd rather have had an exhaust hood. To any of my friends who cook I'd grumble about how dim it was with that contraption in the way. It, and the stove both being black made it quite dark and difficult to see what I was preparing. So dark in fact, that I'd propped up a camping lamp on the counter beside the stove to be able to peer into the pot to see how far along my meal was.

One of my new volunteers heard this complaint when we were speaking of her own kitchen reno (finally finished, yay for S!) She stopped by earlier this week to take me for an appointment at the bank, but first came upstairs. S slipped off her shoes, headed straight for the kitchen and pointed to the control panel on the microwave. In a gentle voice, she said "Light?" A light button! Here I was thinking that was for an interior light in the microwave - lo and behold the space underneath was now brighter. "And fan?" A fan button! Although not a strong exhaust, it sure was better than the nothing I had before.

Who woulda thunk that a microwave was specially designed to make use of the space underneath? I know, stick with matching my socks...

Some of you know of what I was up to this past Monday evening. An incredibly moving experience, but I'm not quite ready to put it into words yet. I didn't want the participants and my friends to think that it was not worth posting about, quite the contrary - I feel it needs more time to fully sink in. Bear with me!

And if you don't get the V-8 reference, you're probably too young to remember when there were no microwaves in the kitchen either.

Just Accept...

At astounding speed, old friends are flowing back into my life and new friendships are blossoming. And God bless the friends who just keep hanging in there with me through thick and thin.

I don't know why all of this wonderfulness is happening, nor do I dare to question it. Thank you for all the positive energy being sent my way. The kindnesses, generosity and love lift me in a way I can't begin to explain.

'Tis a brave and courageous thing to join me on this journey, it makes me sad that I can do so little to reciprocate all that my friends and my support network do for me. So many of you are a good distance away and have expressed your frustration at not being closer to help with everyday tasks, please know that I feel your support and good wishes. And without question, this "back office" support helps a great deal too.

I'm learning slowly but surely. Just accept all that is coming my way, it's happening as it's meant to happen (and I welcome the idea that angels appear around me in human form, nothing could convince me otherwise anymore!) I don't know if I'm here for just one more day or another few years, but for those that are riding this out with me - I'm humbled and so very grateful.

And now, I need to go have a really good cry. Because that's just what I do when I'm feeling so overwhelmed with appreciation. Even though I'm mostly by myself in this apartment, my friends are making it impossible to feel alone on this journey.