Without a Manual

     I have some exciting news to share about my mom's book, Without a Manual... It's finally been published, and is available for sale!

     In addition to many posts from this blog, for the book my mom wrote some additional posts. I also wrote the final chapter of the book, wrapping up the ending of my mom's story. Many of her dear friends also contributed their words to the book - I may be biased, but I think the combined efforts are a beautiful tribute to my mom's life.

     My mom and I had decided that we would like 50% of the proceeds of the book to be donated to charity. I had the idea that the charity would change on a quarterly basis, and I will be updating that information as it comes up.

     Currently, the book is available for sale through the publisher - this is the best route regardless, as a higher percentage of royalties is achieved that way. A higher portion of the proceeds coming to me means, essentially, that a higher amount can be donated to charity. Paperbacks and hardcover books can be purchased through the publisher, FriesenPress, and I have been told by friends who have already made purchases that the book is available as an eBook on the kobo store and the iTunes bookstore. I haven't received much information about eBook availability, but will update once I know more.

     The book through the publisher is $16.99CAN for a paperback, and $22.99CAN for a hardcover. 

     In the coming weeks, the book will also be made available on Amazon and other online retailers. Again, when they are available through those avenues I will post more information about it.

     Thank you to all the readers of my mom's blog, Without a Manual, for your support over the years - both in times when my mom was still with us and when she wasn't. I know she appreciated all the positive thoughts sent our way immensely, as do I.

     I am so proud of the beautiful book she put together. It can be purchased at http://www.friesenpress.com/bookstore/title/119734000013246088.

Thank you,
Suzanna

A Long Time Coming...

It's been quite a long process, and I'm sure many of you have been anxiously watching for news about the book, Without a Manual. I'm glad to announce that the final forms have been submitted this morning, and the book should be for sale in a few short weeks. I'm finally able to bring to fruition the book that my mom dreamed of, and I could not be more excited to see the final product.

Thank you for sticking with me through the creation of this beautiful piece of work. I'll update you when it's officially available for purchase!

A delayed post from September...

Wrote this in mid-September and wanted to share it with you on the blog here.

Feeling a little introspective tonight, and just wanted to share this...

I'm in the process of reviewing the edits made by the publisher of my mom's book. For anyone who wasn't aware, her blog "Without a Manual" is being turned into a book - including her entries, a few special ones she wrote to include in the book, contributions from some very special people in her life, and the final chapter written by me.

Going through her entire time of writing (which ended up being almost four and a half years) has been emotional to say the least, and I'm just over halfway through. Reading her writing, however, makes me feel closer to her than I have since she passed. One minute she is making me cry, and the next I'm laughing out loud, much to the alarm of the two cats. It makes me feel like she's here with me again, talking to me through her writing.

It reminds me that as hard as it has been to lose her, I feel like the luckiest person in the world to have had to opportunity to love her and be loved by her. She's my role model, and I couldn't think of a better one. I'm so thankful to her for leaving this body of work behind, and I see it primarily as a gift to me. Any happiness it brings to others is just a bonus.

Basically, I just wanted to share how excited I am for this book to finally come to fruition (I know it's been a long time in the making, with many delays), and to share with you how much joy my mom has given me, even after her passing.

Thank you for continuing to check in on the blog, I'm hoping I'll have a solid date to give for the release of the book soon!

- Suzanna

Without A Manual book

Thank you all for continuing to check my mother's blog - the "final chapter" is in progress, and I will be posting on this blog to let you know about the official release date of the book. 

Keep an eye out, and thank you all for your continued support!

- Suzanna

Death Notice for Sandy Trunzer

I’m gone; a good number of you reading this will have known that it wouldn’t be much longer. I took care of that quite publicly by participating in the CBC documentary “Last Right”. Here’s hoping that the end was as peaceful as we’d hoped.

Harder than anything I could ever have imagined was to leave behind my sweet daughter Suzanna, who put her education on hold to take care of me in my final months. If that’s not love, I don’t know what is. It’s been the highest privilege imaginable to be her mother; I suspect that she’ll feel the same way about her own children one day.

Also with me at the end was my dear friend Sue. Perhaps not a sibling by blood, but as close as one could come to being the perfect sister without sharing DNA. Other good friends stuck by us through the tough parts, I couldn’t have asked for better companions on the last leg.

Also survived by my mother, Karin, and my brother Oliver (Kelcina) and their children Allyson and Kristian.

My thanks go to my wonderful and amazing medical/support team. In particular Dr. Ho Ping Kong,  Lorelei Cornish, Dr. Mathur, Dr. Downar, Dr Grossman, nurses Annelies and Cynthia. Nurses at TGH MSICU, Baycrest Hospital Palliative Unit 6W, Dee Kearns/ volunteers (especially my angel Jane), Wellspring (Halton) and Dale Massender.

In lieu of flowers, please consider donations to one of the following: the CEEP team at TGWH Foundation (416-340-4430), Baycrest Foundation (Palliative Unit 6W) 416-785-2875,                     TGH/TWH foundation "Palliative Care Research” (Fund 5790 6090 0773 ) 416-340-4430

Cremation and a private ceremony have taken place.

If you would care to share a memory with my daughter, please email her at sandytrunzerstories@gmail.com. Embarrassing tales are okay, she should know that her mother was just as goofy before her arrival as after!

For those who followed my blog Without a Manual, the book will be out in a few months. A portion of the proceeds will go to some very special organizations.

Suzanna – thank you for choosing me, the best birthday gift I ever received. What a ride you and I have shared.

CBC Final Segment

For those of you following the entire series of “Last Right”, the fourth segment will air this evening on The National – featuring viewer responses.

In the next few days there’s a possibility of an on-line discussion, if energy permits I hope to participate.

Here’s a link to an on-line magazine (comments welcomed) created by CBC at:

http://www.cbc.ca/newsblogs/yourcommunity/2013/12/assisted-suicide-in-canada-your-stories.html

For anyone wishing to view my and Suzanna’s segment from last week please visit:

http://www.cbc.ca/thenational/indepthanalysis/lastright/index.html

Thanks again for the support coming our way, I’m amazed by how many friends from my past have reached out. It’s been quite a week!

Thank You

Thank you for watching our story on last night’s episode of the “Last Right” documentary on CBC.

We thank you for your support, we thank you for listening with an open heart, we thank you for the many, many personal notes that have had us smiling, laughing and crying.

We thank you for letting us know that whether you’re friend or stranger, you care about the rest of our journey.

Warmly,

Sandy and Suzanna

 

If you haven’t yet seen the episode, you can find it here:

http://www.cbc.ca/thenational/indepthanalysis/lastright/index.html

(and thank you to the many who have shared this link with others).

News that Has Been Busting to Get Out!

In past blog posts I’ve mentioned having unbelievable kindnesses bestowed upon myself and Suzanna. I’ve also spoken of new friends whom I’ve come to know only because of my illness.

Here is a story that I’ve been waiting to share for a very long time, and it’s with great joy and gratitude that I do.

Back in April (not long after discussions with the CBC to take part in the “Last Right” documentary were finalized) I received a call from Dee, a member of my palliative team who has become very dear to me and Suzanna.

It was Dee who arranged for me to speak last November with a group taking part in a training course for palliative care volunteers (I wrote about this experience on November 10th of last year).

When walking into the training room I immediately recognized a gentleman off to my left; he and I had met a few times at the luncheons I’d attended at the local hospice. It was reassuring to visit Ken’s familiar face as I tried to make eye contact with everyone in the room during the course of the group discussion.

Going back to that call in April, Dee told me that Ken had asked permission to contact me directly, there was a gift that he wished to offer to me and Suzanna. Intriguing to say the least!

I can finally tell all of you what this gift was, and it’s a tremendously thoughtful and a very generous one.

Many times over the years readers and friends have suggested that this blog be turned into a book, and dear Ken is turning this idea into reality.

There have been a few of us diligently working as a team to create the book, which will include a few extra components that are not part of this on-line blog.

I can’t yet give you a publication date for “Without a Manual”, but be assured that Ken and the publishing team are making provisions to have it available for purchase as soon as possible.

A portion of the profits from the sale of each book will be directed to organizations which have helped us get through the years since my diagnosis. The book will be available as hardcover, softcover and eBook; at numerous venues (including directly from the publisher – this latter option allowing for a greater portion of the purchase price to be directed as donations).

Although I won’t be writing any more of the posts in the format that you’ve come to follow here on the blog, we will still be using this blog to keep all of you updated on personal news (I promised long ago that my readers would be not left without an end to this story), as well letting you know the publication date and other pertinent details.

I’ve hinted that although I’ve been confined to bed for almost a year that it’s still been quite busy around here – now you know all of the secrets I’ve been keeping!

Our overwhelming gratitude goes out to Ken, his family and other friends who’ve enthusiastically jumped on board to allow me to add published author to my life’s resume. What a ride it has been, angels all around me.

New Date for CBC Documentary

The new broadcast date for our segment of the documentary “Last Right” will be Monday, November 25th. It can be seen as part of the nightly CBC news program “The National”, or afterwards on the CBC website.

I’ll let you know if anything changes. Thanks for being patient!

CBC Segment Postponed…

Our segment of the documentary “Last Right” that was scheduled to appear this evening will be postponed due coverage of the typhoon in the Philippines and Rob Ford (mayor of Toronto – for those not local, he’s been quite the newsmaker of late).

I don’t know the new air date, but will post as soon as I hear any news.

Cryptic Me…

Although close friends knew what was going on, I was quiet for many months on this blog about the CBC documentary. Two days away from the air date, and Suzanna and I are not quite sure how to describe how we feel. Not anxious or nervous – maybe just grateful that chances are fairly good that I’ll be right here beside her watching it on Wednesday night? We’ll be seeing it for the first time when you are!

Months ago I alluded to two projects on the go, you know about the first now.

I’m not quite ready to share details of the second project (we’re THIS close!), I’m going to tease a bit longer – but did want to open the window up ever so slightly.

As I’ve mentioned in the past, I’m overwhelmed by the number of readers visiting this blog. Some known to me, others are strangers from around the world. Some of you have chosen to share comments, either anonymously or by name.

If you’ve enjoyed the blog as a regular reader and would like to participate in a small (but very meaningful) way to the second project, please send me a private email at  sessa1@live.ca and I can elaborate.

Once you’ve heard the details, I would need permission to use both your first and last name if you decide to participate.

The friends who’ve already participated with this project – I thank you sincerely! What an incredible experience this is, and I can’t wait to share it with everyone else very soon.

Our CBC Segment

I want to clear up some confusion.

Although CBC has aired the previous two segments of “Last Right” on Monday evenings, our segment will be broadcast this Wednesday evening, November 13th.

The documentary will be incorporated into the the nightly news program “The National” in Ontario at 10 pm EST.

CBC has within a few hours of broadcast posted the last two segments on the CBC website for on-line viewing, I expect the same will happen with this next segment – I’ll put the link up here on Thursday.

More Info on CBC Documentary

The first portion of the documentary “Last Right” was broadcast on CBC’s “The National” this past Monday.

In case you missed it, the twenty minute segment can be viewed here: http://www.cbc.ca/player/News/Health/ID/2414736523/

Promo clip: http://www.cbc.ca/player/News/TV+Shows/The+National/ID/2414223022/

Promo clip, Duncan McCue’s thoughts as a reporter for the series: http://www.cbc.ca/player/News/TV+Shows/The+National/ID/2414736568/

(the clips can also be found on YouTube in case your mobile device doesn’t allow you to watch the links noted above)

The next segment will be broadcast on “The National” this coming Monday, November 4th, featuring Harriet Scott. At the end will be a short promo clip for the segment featuring my and Suzanna’s story, airing Wednesday November 13th.

Suzanna and I would like to thank the many who have been in touch with us to offer support since the promos started airing. For the viewers who have been wondering, yes – that is my photograph entitled “Solitary Stroller” that is being used for the series title screen.

In an ironic twist, “Solitary Stroller” had been by far my best selling photograph over the years. When I’d make deliveries to the stores selling the image on greeting cards, I’d often be told that this particular card sold well as a bereavement card. Hearing that wouldn’t make me sad at all, I was honoured that there was something about the image that evoked feelings of compassion for someone who had experienced a loss.

As a now “retired” photographer, I’d like to hang my hat on that thought. I accomplished what I had set out to do with my camera, to share the beauty of what I was seeing around me.

CBC Documentary Update

I’d mentioned that Suzanna and I had participated in a CBC documentary, we’ve heard today that the series “Last Right” will be begin airing this coming Monday October 28th, on both the CBC News Network at 9 pm EDT, and on the National at 10 pm EDT.

The segments that were filmed with us will appear in about two to three weeks time (part three of the series), I’ll let you know when I get confirmation of exact dates. I’ve been told that I’ll appear briefly in the promo at the end of the news programme tonight, Friday and Sunday.

Thank you to our friends who listened when I was making my decision whether to participate, those who helped me get ready for filming days, and everyone who offered their support along the way.

Most importantly, my gratitude to my beautiful Suzanna for giving her blessing to go forward, and for bravely speaking up herself on camera.

I encourage you to watch the entire series. Wherever you sit on the issue of end of life choices, this promises to be a compelling story.

I’d mentioned something of importance to me in a post months ago, bear with me as I repeat myself.

Wherever you personally stand on the issue of Dying with Dignity, please let your voice be heard by those organizations and government bodies who can speak on your behalf.

The next while is special time that is to be cherished with my daughter and close friends. My personal views and experiences are voiced in the course of the documentary and I stand by them.

Best wishes,

Sandy and Suzanna

Guest Post Continued…

Another post from my dear friend Deborah, as she offers us more of her heart wrenching account of her experiences as her husband’s caregiver. Get the tissues ready, her words make me appreciate Suzanna all the more.

(I’ll mention that if you’d like to communicate with Deborah privately, please email me at sessa1@live.ca and I’ll make the introductions off line).

I tend to get a bit anxious when packing for a business trip - I usually forget something, like dental floss or my hairbrush, or worst case scenario, my hair straightener. On my ride to the airport, I’m mentally unpacking my suitcase to see what I forgot and will need to buy when I get there.

This time was different. I knew if I forgot anything it was a ten minute drive home. I didn't want to be too organized and have everything packed on this first trip as it was already emotional enough.

Of course he didn't want to go, and it was obviously a difficult day for the kids so I was thankful they were at school and didn't have to go through the heartache and awkwardness this next step was bringing. He would be 4.6 kilometres away and coming home on weekends. This was all for the best under the circumstances and as my mom would say (quoting the motivational poster in our mudroom of a disturbing looking face made out of lemons, and a faucet for a nose with lemonade pouring out of it) “When life gives you lemons, make lemonade.” We were stuck drinking the lemonade, hating every mouthful.

It's not a typical reason to request a day off work, to pack up your husband's belongings, put him in the car, his walker, wheelchair and suitcase in the trunk and drive him to a Nursing Home, where he will live out the rest of his life while his body and mind slowly betray him, until he dies.

The drive was quiet, except for his insistence he was going to get better and come home. Over the preceding few months while we dealt with the steady decline in his health, the ongoing management of his health care needs, and the awareness that our family was suffering from the grind of trying to integrate a hopeless situation into normal suburban family experience, we did the respite thing. Some nursing homes have respite beds - beds designated for people who are living at home with an illness that requires a lot of support, and the wear and tear of the care being provided calls for respite for the caregiver. Definitions of respite include "an interval of relief" and "a delay or cessation of a time, especially of anything distressing or trying" So basically I could 'send him away' to be cared for in a nursing home while I took a break from the daily insanity loop of caregiving, which I turned into focusing on caring for my kids and job. With all of the medical appointments and increasing care needs, I felt like my kids were falling into the category of 'being raised by wolves'. I was physically and emotionally absent and exhausted. The guilt I felt over the need to take care of myself over my husband was overwhelming. That became my state of being, and major life decisions were being directed by emotionally unattached health care professionals, who assured me through their experience of seeing this cycle a thousand times, that this was a necessary step.

I can still vividly recall the first respite experience, and the mixture of feelings... emptiness, betrayal, resignation and self preservation as I drove out of the parking lot that day, unable to stop crying as I was leaving him for a two week stay at a nursing home, in a ward room with three other room mates, all of whom were at least 20 years older than him. How does anyone even get to the place where this is even necessary?

As we pulled up to the home where he would be living out the rest of his days, I expected Nurse Ratched from "One Flew over the Cuckoo's nest" to be waiting for us, in a stoic stance, her nurse’s cap firmly pinned to her head, arms crossed, tapping her foot impatiently as she had many more pressing things to do. No one was waiting - it was just another day at a nursing home.

The discomfort that comes with uncertainty enveloped me - I thought "just keep moving like you know what you're doing. It will all be ok”. But this wasn’t a nursing home visit I was conducting as part of my job. This was personal. I wondered how he felt in this life changing moment. Did he feel like a kid being dropped off at an orphanage? Or being thrown to the curb? Or thinking about the significance of what was happening - being admitted to an institution where he would be living with people he didn't even know, many much older and frailer than he. Did he understand that people he would meet, eat meals, play bingo with, enjoy pub night with, have music therapy with, and consider friends, would die. This wasn't a hospital stay where he would receive treatment, be discharged and return home. This was his new home, without the excitement and pride of home ownership.

My husband could still walk short distances using his walker, and that's how he made his entrance to his new living space. I left everything else in the car. We would walk in without all of his belongings, as if trying to be nonchalant would make it less surreal.

We needed to go through the 'admission process'...something that's done many times every month in hundreds of nursing homes across the country. The average "turnover" rate is 50% - imagine - a business where half of your clients die every year. Better than the funeral home business I suppose. Here I was working for one of the largest nursing home chains in Canada and my identity was shifting from someone who visited Nursing Homes from Corporate office, name-badge securely magnetized to my jacket, to suddenly becoming one of the members of this home’s community. I am now a Nursing Home resident's wife.

We took the elevator to the second floor, to the wing that would be his new 'neighborhood'. That's what they call them. I was acutely aware of the institutional feel...the bright lighting, the shiny floors, the noise of call bells ringing and the sanitized smell of being in a Long Term Care Facility. I had this whole self-critical conversation in my head for not having visited before and being more familiar with his new home. Perhaps then I wouldn't have felt so out of control. Control was a state I was desperately trying to create for myself.

I had just received the phone call a few days before. For a month while he was on the crisis list for placement I knew my phone could ring at any time and a voice at the other end of the phone would tell me in a detached and procedural way that a bed in one of the 7 homes we selected on the list had become available. I wouldn't know which home was going to select him or when. I had this love/hate relationship with my phone. I knew I could no longer take care of him at home, yet I was dreading the responsibility of pulling the trigger of acceptance. Once I got the call, I would be required to make a decision within 24 hours, and then the move in date would be determined.

Nursing Homes need to turn the beds over quickly - usually within 72 hours. It was headspinning how fast we went from barely coping at home to this life altering change.

Our admission appointment was scheduled for 11:00. As I learned, appointments typically run late as they deal with the busyness and unpredictability of the day dealing with their elderly, frail client base. On any given day in a nursing home, situations that require immediate attention are happening. A resident has fallen, a responsive behaviour is occurring that requires intervention, a family member is complaining, or someone just needs eye contact, a warm smile or a hug.

We were invited to wait in the sitting room, and the intake team would be with us shortly. It was a welcoming room, with a piano that to this day I've never heard anyone play. As I sat on the firm, spill proof treated love seat, I watched staff and residents walk and wheel by, going about their day, and I felt annoyed that no one acknowledged how significant this was for us. What I was feeling inside started to leak out through the tears I was fighting to keep from glossing up my eyes. How did it come to this? The inability to process this moment was reflected as a forced polite game face smile on my apprehensive looking face while I sat with my hands neatly folded on my lap. In that moment he became "that man who is way too young to be in a nursing home", and I became 'that poor woman whose husband was dying in a nursing home".

The Director of Care, Attending Physician and Neighborhood RN filed into the room, introduced themselves and welcomed us to their community. There are two institutions people don’t want to go to – jails and nursing homes. I had to bite back the anger I felt, knowing it was misdirected, and understanding they are doing their best to help us ‘make lemonade’. The Doctor had a big binder in his hands, which held my husband's admission papers and questionnaires that needed to be completed. In the last two and a half years, we had appointments with twenty seven specialists in seven hospitals in three cities - I could answer any question as it related to his medical history. I had even created a timeline chart of all his appointments with an Excel spreadsheet breakdown by specialty. What I didn't expect so soon in this process was the advanced medical directive question. I felt like I was being pitched by a salesman going for the close without explanation of the features/benefits of the product. If my husband were to have a significant event (stroke, heart attack), did we want them to intervene to save his life, or...no heroics. Sure, he had an incurable degenerative disease, but I thought, “Really? You need to know this now”? It is part of the Long Term Care process and it’s a Ministry of Health requirement so yes, they needed to tick off one of the boxes on the form.

So which one was it? We were told it could be changed as his health changed (aka declined) so we went with 'heroics, please".

I've never focused so hard on holding back the urge to sob uncontrollably - I couldn't comprehend how quickly we got to the bottom line of things. Not that people who admit a family member into a Nursing Home ever expect their family member will walk out those front doors clicking their heels and heading home for the twilight years..I just thought - can we ease into this a little more slowly and respectfully, allowing the brevity of the situation to sink in - versus getting all the checkmarks on the to do list done?

A Guest Post …

Happy Thanksgiving to my Canadian readers – and tonight I need to correct that opening line to say “our readers”; a dear friend graciously agreed to write a guest post on a topic of her choosing, one which I’ll share with you now.

I’ll tell you that I gave Deborah a bit of a hard time about how generously kind her words are at the end of the post, a compromise was reached when she agreed to write a second guest post very soon that doesn’t mention me at all <and I’ll hold you to that promise Deborah!> <grin>

"They" say…adversity builds character, and what I've also discovered is you can meet the most amazing people while experiencing adversity, and they become contributors to your character.

I met Sandy as a result of her blog …my husband had just been diagnosed with Erdheim-Chester, after a year and a half of cycling through 27 specialists in 7 hospitals between Hamilton and Toronto, to finally get what they referred to as a '98% clinched diagnosis". As I read what I could find, I quickly realized this did not fall into the category of "if you had to pick a disease, choose this one".

While researching online, trying to find a glimmer of encouragement, I came across Sandy's blog. I felt this honesty and approachability in her words. I sent her an e'mail, thinking she was in the States somewhere and at best we'd have an e'mail chat, and maybe I'd learn a little bit about this disease and any support organizations out there. I couldn't believe it when I received an e'mail back within a few hours, and to learn that we both lived in the same city. Actually, only 15 minutes apart. If memory serves me, I think we met the next day at a coffee shop and I felt this instant connection which was sparked from a mutual experience of a rare disease that at the time only 400 people in the world had been diagnosed with.

I have to say I felt a bit awkward - I wasn't the one with the disease, I was the 'caregiver/advocate/wife' and full of questions - I knew enough about the disease to be fearful of it, and I didn't want to say or ask anything that could be perceived as insensitive. The prognosis for this disease is obviously not good, and my husband was still in a place of hoping for the 2% that they were wrong, and it would pass, and he would get better. He played football when he was younger and he had that mentality of staying in the game to the last few seconds, no matter what the score was. Hail Mary pass - win the game. He was an optimist off the chart - my mother called him a 'dreamer'. I on the other hand got to be the realist in this situation - we have two kids (who were 11 and 16 when he first started showing symptoms), over the year and a half of our quest for a diagnosis he went from requiring a cane to walk, to needing a walker, to then being fitted for a wheelchair. He was also going to 'adult day care' as I worked all day, the kids were at school, and he was requiring more help with things. I could see where things were headed, and the specialists who knew something was wrong, were also realists, as was the team from the CCAC.

Sandy and I talked about the disease, and she gave me all the resources she was aware of. I asked her questions about her experience, symptoms,thoughts/feelings/beliefs. Sandy's EC is very different from my husband's - it's a puzzling disease that way in how it manifests so differently. For my husband, the main area of impact is his brain stem. The initial signs were speech and balance. It's been 5 years since he had his first 'acute episode' was rushed to hospital, the thinking being he had a stroke, to be told he had lesions covering his brain stem, and had an 'unusual brain disorder'. Two and a half years ago he was at a level of needed care that required the skills and support of a Nursing Home, where he has a team of people who fully help him with his 'Daily Activities of Living' - i.e. getting up, dressed, bathed, fed.

As I have journeyed through this as a caregiver/spouse, Sandy has journeyed through it herself. Yet she always asks how I'm doing, and how my husband is doing. For all that she goes through, there has constantly been that caring and 'how can I help' support. We are able to have conversations that I wouldn't be able to have with anyone else - we both get it...from different perspectives, and when we have those deep conversations where thoughts and feelings are transparent, I no longer feel awkward. I feel blessed to have the opportunity to connect at that raw, no bs, this is what life is about level.

What a gift my friendship with Sandy has been. Through our unique paths of adversity, she has significantly contributed to my character.

Measurement…

There are all sorts of reasons why I haven't posted for a week and a half, none of them make me particularly happy. I wish I could tell you that it's been a whirlwind of friends coming through our door keeping me entertained, when in reality I have to turn down just about every offer of a visit because I'm too exhausted for conversation most of the time.

As much as I wasn't pleased that Suzanna had to give up her job to keep a closer eye on me, it's been a great relief to have her near. I can do less and less for myself with each passing day as I get physically weaker. Moving my laptop to my lap has become a two person job if one of the persons is me. Even holding my wrists up to my iPad propped on my chest for more than a few minutes has become too difficult. With this knowledge you might forgive me if my emails have been short and to the point, if they come at all.

In case you're wondering this post is being dictated, with breaks for giggles at the strange interpretations that the auto-correct feature has offered up.

My diminishing strength can't be ignored. Suzanna had set up a belt to help me pull myself up to get out of bed to use the bathroom. This worked for several weeks until I lost the strength to sit up on my own. Her hand has to either help pull me up from in front, or push my back to get me past the point at which I find myself stuck.

The hardest part of all is at times losing my ability to speak. My thoughts are lucid, what I would like to say is clearly formed in my mind but turning that into spoken word eludes me more often as the weeks go by.

I'm frustrated, Suzanna is frustrated (although she tries so hard to not let it show). It embarrasses me when I struggle through a discussion with one of my care team members (I can't reschedule them as I do with friends when it’s a particularly hard day), hoping that they can see in my eyes that I'm still on top of my game mentally - it's just the output that is filled with gaps and missteps, at the very least a much slower pace than my usual rapid fire banter.

My short term memory is also faltering, poor Suzanna often has to tell me the same thing several times over. Thank goodness she’s around when my nurse asks me how the previous day went, the days run into each other as one blur. And please don’t ask me what my last meal was, half the time you’d see me defer to Suzanna for the specifics.

A few nights ago, I was teary and filled with self pity over my diminishing abilities. I've been able to do so little for myself for so long, I've been dearly hoping that a fatal heart attack would save me from these indignities. Suzanna gently held my hand and asked me if it was just now truly hitting me that I was going to die? My girl knows me all too well, I nodded through my sobs. There was some truth to her thoughts despite me having had years to get used to the idea.

Trying to be stoic is bloody exhausting. Trying to hide how awful I really feel can be excruciating. The realities of what I'll be missing out on in the lives of my daughter and loved ones hit fast and hard these days.

I think a lot about how much I will miss the people I care about. Maybe a ridiculous idea that I will be missing them after I'm gone, but for now a comforting measure of how just many wonderful people fell into my life and how much I care about them.

My Guide to Getting By…

As I come close to finishing off this blog, there are a few thoughts I wanted to share. Words I’ve tried to live by, ideas that I felt compelled to explore, concepts that I aspired to incorporate into how I act and speak.

Some old friends from my office work days might remember that I could be depended upon to have a motivational “thought of the day” calendar on my desk, anyone was welcome to goof around with the magnetic word tiles I’d arranged on my file cabinet in a quest to inspire, and I had a lending library of motivational books on the shelf. Yes, I was one of those annoying people.

And I’m not yet done with being that annoying person who tries so hard to see the upside of every situation and the recognize the best in every person. 

So here comes my list. I take credit for none of these ideas, I’ve borrowed and revised as I went along to see what worked for me. Sometimes success came along, other times crashing disappointment. Life?

What we put out into the world gets reflected back. If you don’t believe me, spend a day offering every single person you come across a genuine smile and see what happens. It’s magical.

On that note, smiles and a kind word are contagious. Nothing can convince me otherwise.

If your intuition has served you well in the past, keep trusting your gut.

Work hard, be nice. (Quote by Rafe Esquith, Los Angeles teacher featured in the film “Hobart Shakespeareans”). Not only does it cover off karma and The Golden Rule succinctly, it sums up the guiding principles of pretty much every religion quite nicely, doesn’t it?

We all make a difference. We can have a positive influence or a negative one, we each hold the power to shape the lives of others. A tremendous responsibility to be taken seriously.

Listen to children. Amazing insight can be found in the most innocent of observations.

You can choose your family, and define for yourself what that word means to you.

If a doctor or teacher gets high ratings on internet rating sites, you can bet that he or she is also someone very special outside of work too (I had to add that one, I delight in the fact that I’ve yet to be proven wrong on this!)

Walking on eggshells is just impossible. Any relationship that required me to do so is gone for good, I always ended up crashing through.

Giving the benefit of the doubt doesn’t always end well, but it wins out most of the time.

“The first time someone shows you who they are, believe them” Maya Angelou

“Once a word leaves your mouth, you cannot chase it back even with the swiftest horse” Chinese Proverb

There is a big difference between sympathy and empathy, there are times and places for each. The first is closer to pity, the second essential to the human experience.

And to finish, my hardest lesson. I can’t make everyone happy. Goodness knows I tried.

Unconditionally…

I’m fudging the truth when I tell others that I’m recovering from the events of last weekend, when Suzanna twice had to call for emergency help for me. Who am I kidding? I’m not recovering, it’s just further decline and there’s no escaping that reality.

When I had a visit from my doctor two weeks ago she and I had a frank discussion about what the immediate future might look like. The hardest part was sharing my doctor’s thoughts with Suzanna when she arrived home a few hours later. In the oceans of uncertainty surrounding the final stages of this illness, she grasps for the small amounts of definitive information we have. I hide nothing from her, it simply doesn’t work in our relationship to have any secrets between us.

Suzanna immediately made a decision to take a leave of absence from work, choosing to finish out what was left on her schedule so that her employer wouldn’t be left in a bind.

It broke my heart. Not only had Suzanna postponed university for me, she was now giving up the one thing that guaranteed her a respite from what she faces every day here with me.

After the events of this weekend, she felt that she didn’t want to be out of touch for any length of time (at work her phone was accessible only at break time), the idea of me not being able to reach her immediately if I needed help was too much for her.

Thankfully, her employer was compassionate and understanding, ensuring that they would find staff to take on the remaining shifts on her schedule.

The closer we get to the end, the more surreal it seems. The more we feel cheated out of what ought to have been ours to share as mother and daughter. I’m going to allow myself to be boastful, I think I would have made one very loving and kickass fun grandmother!

Suzanna mentioned that when she does go back to work, everyone there will know what will have happened to allow her to be there again. She wondered how she’ll handle the comments from well meaning workmates, the same will apply when she returns to school, she goes back only because she lost her mother.

In our usual fashion, we try to find a smidgen of humour in all the sadness. We joked that she goes back into the world as “half orphan”, but we both know it’s not nearly that simple.

Throughout Suzanna’s life I’ve kidded her that I knew her better than she knew herself. As many parents do, we so intimately know the patterns and habits of our children as to often predict with great accuracy how they will react in a given situation. Even today, there are times that she’ll look at me sideways wondering how I could have known what she was about to say.

Over twenty years together, the tables have turned. Suzanna has come to know me better than I know myself. She has a knack for pinpointing what’s at the root of whatever is eating away at me, often before I figure it out for myself. Something that I’ve come to realize can only happen when you trust completely in someone’s love for you. I find great comfort in thinking that that my daughter has trusted me enough to let me know who she is, and that her unconditional love for me has allowed me to be human too.

One Thing That’s Kept Me Busy…

Many surprises and opportunities have fallen into my lap over the last six months, it’s hard to imagine that so much could happen within the confines of the four walls of my bedroom. Outside of telling close friends, I’d decided initially that I was going to keep fairly quiet about two of the projects until they were completed. As things are going, my chances of being around at the time of completion are getting slimmer and I’m being graciously guided as to what information I can share while I’m still here to tell you myself. Sounds a little mysterious, doesn’t it?

Followers of my blog might remember that I had a pacemaker implanted about ten years ago. I’d been diagnosed at the time with vasovagal syncope, sudden and significant drops in my heart rate were causing me great discomfort often resulting in me ending up on the floor in a faint, or near faint. Injuries were a common occurrence, sharp corners on furniture had a way of leaping into my path. This condition was preventing me from leading a normal life; I couldn’t drive, work or take care of my daughter in the ways I would have hoped.

Thankfully the pacemaker returned me to a fairly normal life for a few years, until I was diagnosed with Erdheim-Chester Disease in 2009. If you’ve been following the blog you’ll have a fairly good idea how things progressed from there, cardiac issues continuing to be of major concern.

When I signed my Do Not Resuscitate order early last year, I had to give pause as to how my pacemaker would be handled. As I mentioned a few months ago, I’d already decided that I wouldn’t have the pacemaker replaced when the battery died.

Two concerns quickly came to mind. The first, if my daily health issues were already so challenging, what would they be like with a non-functional pacemaker on top of that? Knowing my triggers of ten years ago, even getting out of bed to go the bathroom would be out of the question with an expired pacemaker battery. I also had to consider that ten years ago I was in otherwise better health, a much sturdier state than I’m in today.

The other concern was whether the pacemaker is keeping me alive artificially. Might I have already died if it hadn’t been bringing my heart rate back up again after every crash? The data downloaded from my pacemaker over the last ten years tells us that I average at least forty major drops a day.

A year and a half ago, I set out to have my questions answered in preparation for a time that might come when it could appear that the pacemaker was the only thing keeping me alive. What rights did I have as the patient to have the pacemaker turned off?

The path has been a complicated one. The charter of rights of Ontario clearly states that I have the right to have the pacemaker turned off, in the same way respiration or dialysis treatment can be refused. On paper a clear option, not so clear in practice.

About six months ago I was speaking at length with a member of the Ontario Dying With Dignity association about my questions and concerns, when she asked if I might consider speaking with a representative of the CBC whose team was producing a documentary on end of life issues facing Canadians.

I did speak with the CBC and was asked if I would consider participating in the documentary, and I agreed with one stipulation. My daughter Suzanna had to be fully supportive of my involvement, it would be another four weeks before she was finished her exams and I didn’t want to raise the idea of my participation until she had cleared her plate.

The documentary is scheduled to air sometime in November, which will tell you that Suzanna did indeed give her blessing to the project.

There a few points I’d like to raise. First, the CBC team has been absolutely wonderful to work with. Not only have they been very appreciative about how much energy this project has taken out of me and make every effort to lessen any burden on me, they’ve been at every point very respectful and compassionate towards me and Suzanna.

I’m going to use the term “dying a gentle death” as a way to describe what I’ve been trying to achieve for the end to my own story. Each of us will have our own perspective and feelings on the issues of when modern medicines and medical procedures ought to be used to try to extend life, and we will also will have our own thoughts on when it’s appropriate not to intervene.

My decision to participate in the documentary comes from a desire to allow other Canadians a chance to “walk in my shoes”. You may find yourself agreeing or disagreeing on some of the points raised, to that you’re perfectly entitled. What I do ask is that if you feel compelled to speak out on whatever your position might be, that your comments please be directed to those in our government who can speak on your behalf.

Suzanna and I are trying to do what’s best for the two of us. Despite going public with our story, ultimately for us this is about a mother and daughter who love each very much, neither of us wanting the other to suffer beyond what we feel we can handle.

A side note: it took me a few weeks to find the words and the courage to share this post. Two emergency calls for help this past weekend had me and Suzanna again revaluating time lines and decisions, encouraging me to share this information sooner than I might otherwise have done so. It was my wish that you hear about the documentary from me rather than recognize my name spoken on your TV one evening a couple of months from now. I’m grateful to my CBC team for giving their nod to sharing this news before the piece is complete.