Sacrifice…

As parents, we make sacrifices to help our children reach toward the goal of being productive (and hopefully happy) members of society.

Many years of teaching them, trying to set good examples, doling out gentle discipline and above all offering love in hopes that our children will become adults who feel good about who they are and the choices they make.

As parents, we sometimes sacrifice opportunities for personal or financial gain, give our time (and in the early years many hours of precious sleep!) with the intent to do what is best for our children. If we expect nothing in return, we may truly delight in whatever joys come to us through our children.

Not every child grows up this way. I speak from personal experience. I don’t care to have a go at my parents in this post, it’s no secret that my upbringing was less than idyllic.

I wanted my daughter’s upbringing to be different than my own. My parenting choices at times have fallen under criticism, my goal was and always will be to be a parent that can be counted on through thick and thin. My daughter went through tough times after her dad and I divorced; and then again when her stepfather left.  I didn’t care how much ribbing I endured about running to her side when she said she needed me, nothing could stop me. Whether it was dropping whatever I was doing, or taking her 2 am phone calls in first year university, I was going to do whatever it took for her to know that I would be there for her. That I could always be trusted.

My daughter has many times told me how grateful she is that I never failed to be there when she needed me. Not to say I didn’t make many mistakes along the way in raising her, absolutely there are things I might have done differently given another chance. As my own mother told me, the first child is the “try baby”. You try to do your best, but hopefully learn from what does and doesn’t work and refine your technique with subsequent children.

My daughter was my one and only shot at parenting. One could argue until blue in the face how much of a child’s behaviour and personality come from nature vs. nurture, but I’m going to allow myself a small amount of credit that trying to do right by her led in small part to her being the wonderful young woman she is today.

In an ideal world, I envision myself easing her mind when she has jitters about entering the work force, listening to her as she stresses about wedding planning, reassuring her that she’s doing her best when the toilet training of her little one isn’t going as smoothly as she hoped. Reminding her that along with the tough challenges in life come moments that can bring such joy they can seem surreal. It’s unlikely that I will be around to support her as her life plays out. If we allowed ourselves to wallow in this reality, we wouldn’t have room to continue to make new happy memories together while I’m still here.

Sometimes she tells me that she’s fearful that she’ll make poor choices if I’m not around to offer guidance. If I allow myself that I did the best I could as her mother, I tell her that I have every confidence that she already knows the answers that are right for her.

I’m lucky to have had a child to make sacrifices for. Although in my younger days I was convinced that I didn’t want children, by the time my daughter came along there wasn’t anything I had ever wanted more.

My daughter is now making tremendous sacrifices for me. It’s the last thing I would have ever wanted, my goal was always to do the best I could in my role as her mother and send her off into the world to find her own life. I knew that I would always be included as an important part of her future, but she was free to make her own choices – my job was more or less over.

She’s putting her future on hold to help me. Come September, she’s not returning to university.

It’s been a tremendously hard school year for her. As much as I tried to keep the details of my declining health from her (with that you may correctly assume that I’ve also not shared many details with the readers of this blog), it was impossible to shield her from the visible evidence when she would visit home.

Coming home became more and more of a challenge for her, the guilt of leaving me at the end of a weekend visit became more agonizing for her. It became more difficult to concentrate on her studies, and it wasn’t made any easier by others suggesting that she ought to be at home with her ailing mother instead of at school.

If it were my choice, I’d ask her to go back to school. The thought that she might not go back later scares me. She has passion, potential, intellect and an unwavering curiosity. Good things lay ahead for her, of this I am sure.

It’s time to sit back and trust that if I have done the best job I could do as her mother over the last nineteen years, she’s now making the best choices for herself. Even if it means shelving immediate educational goals to be by my side.

How blessed I am that my daughter would make such an immense sacrifice to ensure that I’m not alone on the next part of my journey. A gift I didn’t expect, and didn’t ask for, but will appreciate with every last breath. And I will pray that karma ensures that the remaining decades of her life bring less heartache to her than the first two.

Touching Down…

Overall I think I do pretty well with not dwelling on what I’ve lost. I do have my moments, but considering how many things in my life that I had loved have disappeared over the last two years I believe I’m entitled to feel sadness over the losses once in awhile.

This evening is one of those times. For the first time in ages, I put on music to entertain myself instead using other diversions to keep my mind busy.

Going through my playlist of most often played songs I’m saddened to realize that in the past it was hard to keep myself from singing along. My natural impulse is to join in regardless of how awful my singing voice is.

I miss my voice. It’s become hoarse, creaky and sometimes entirely missing in action. A symptom of the mess in my chest. Some days I’m grateful just to get out full sentences.

Singing is entirely out of the question. So is dancing to the music. These things have to take place in my imagination now. They still do.  Sometimes as fleeting daytime thoughts, more often in my night time dreams.

I have to wonder if my body knew all along that I’d lose so many of my physical abilities. It seems that I’ve gone through my life taking note of how good it felt to walk, run, sing, dance, jump, spin, and so much more when I could.

A memory floods back of teaching my daughter how to jump rope at our old house in Toronto. We’d tied one end to the fence, while she and I took turns making the rope turn circles. I didn’t care that the neighbours were watching a woman edging into her late thirties skipping rope like a schoolyard girl. I so clearly remember my feet hitting the ground beat after beat, appreciating the connection to the ground, and then feeling glee over the weightlessness at the height of the jump. And praying that my daughter might also learn to appreciate these small moments of bliss that can enter at unexpected moments.

Another memory of being at a dance theatre when I was married to my daughter’s father. After a performance the dance company (to which he belonged as a performer) and guests had moved to the foyer. The stage was mine alone. I leapt up from the seating area onto the stage and ever so quietly led myself through a ballet routine that I vaguely remembered from the dance classes I taken when I was very small. I’d performed with my class at the since long gone Eaton Auditorium in downtown Toronto, I believe I was only five or six years old.  I can still remember the feel of the sequins of my purple butterfly costume wings between my tiny fingers (and I was tiny, until about the seventh grade I was always the shortest in my class. Always at the end when the teacher lined us up by height). On that stage I felt strong, tall, beautiful and capable of executing a complicated dance routine. In reality of course, a few strides, spins and waves of the arms that might have caused any of the professional dancers to giggle. The delicious part is that that they would have been laughing with me, not at me.

I can think back to so many of these moments of awareness of feeling happy. Wondering if I was given this gift to help me through the challenging times. I cling to this belief, it seems to make sense to me.  The ability to bring forth a happy memory whenever I need one.

Tonight I need these memories. Thunderstorms, the softness of my daughter’s cheek when I kiss her, the frenzied enthusiasm of a puppy let loose, finding the daisy among the tulips, a squeeze of my hand when I’m scared.

I’m still trying to make more of these happy memories. I’m grateful that my mind is still sharp, my memory is still good (which at rare times I wish it weren’t so much so). That I can still feel, be it good or bad.

I pray that for as long as I’m here I can still see the beauty in the faces of the people who surround me, hear their loving voices and feel their touch when they hug me.

Tonight however, I’m allowing myself to grieve a little. Yet still trying to find space in the pain to be grateful that I can hear the music even if I can’t sing along.

Connecting the Dots (Stripes in This Case)…

When I adopted my kitten Scrabble back in November, the shelter had him listed simply as Domestic Medium Hair, colour Buff.  Name Brennan. He doesn’t answer to Scrabble, I wonder sometimes if I should try calling him by his shelter name to see if he reacts. In a strange way I’m almost afraid that he will, that he will slyly look my way smug in the knowledge that it took me this long to figure out the riddle.

How he came to live with me is a lovely story, perhaps one that my daughter will tell you someday. He was meant for me, of this I am sure (but I fear I’m starting to sound like a batty old cat lady).

I’d given a bit of thought as to which breed he might be, but as time went on more and more visitors were commenting on his unusual features. A face and tail like a fox, beautiful colouring and the softest hair. He looks quite different than any other cat I’ve had, with an unusual temperament to boot.

This afternoon a friend was visiting (donning Nutella treats and lovely reminders that spring is around the corner, my bedroom has been transformed into a delightful garden!), she was captivated by Scrabble’s tail – conversation later ensued online about what sort of cat might sport these unusual features.

After a bit of research, we had it nailed. The physical description was dead on, but it was the personality traits of the breed that had me grinning. A perfect match for his antics, and sweetness.

Scrabble may be quite adorable, but also quite a handful at times. An insatiable curiosity, and rather impertinent at times. Not unusual for a kitten of any breed, however he manages to take his misadventure to a new level. He mocks the spray bottle that was meant as a training tool to keep him off the kitchen counters, to stop him from chewing on my oxygen hose, to keep him from climbing the curtain that’s used as a makeshift wall to offer a bit  of privacy within our apartment.  When the bottle is brought out, he squints his eyes to keep the water out but holds firm to his mission of destruction.

He seems to have a sixth sense when it comes to cuddling with me when I’m in more pain than usual. As I write, he’s sitting on my shoulder with one paw to my cheek – the spot in which he can usually be found when it’s just the two of us in the apartment. Other times he wraps his paws around my wrist, as if he understands how badly I could use a hug. And he licks. Constantly. Any uncovered skin is subjected to his unusually rough tongue (most often my chin). It’s impossible for him to receive gentle nuzzling and cuddling unless he can reciprocate.

This wasn’t meant to be a drawn out account of life with Scrabble. What struck me today was how his behaviour, seemingly unusual to me and my friends, is actually quite common for the breed. Unrelenting curiosity (key word is unrelenting, I’ve never seen a cat persevere so!), defiance towards attempts to curb unwanted behaviour, strong bonding with “their human” including frequent licking, deftness with their paws (which leads to no end of trouble around here!) and a fondness for playing with water.

Desirable and less desirable traits, I love having him around. He can be a royal pain in the neck, yet a moment later be of great comfort to me.

Reading that his quirks are quite common to his breed  put puzzle pieces together for me (if you’re a cat fancier, he’s a Somali. How such an expensive cat could have ended up in a shelter is a story only he could tell).

This sense of satisfaction when connecting to answers has been important to me, especially over the last years. There have been some situations that had perplexed me until I was able to learn that they weren’t as uncommon as I had imagined. Some still perplex me, but with a bit of insight now seem less shocking. Having pieces fall into place is something that perhaps not surprisingly offers me a great deal of comfort when dealing with a with a very rare illness that leaves so much answered.

Intentions. We Prefer to Assume They’re Good…

A few weeks ago a fellow blogger who is living with terminal illness put up a post about things that people sometimes say to the dying (and their loved ones) that can come across as hurtful or upsetting. I’m not using the exact phrasing for reasons that might be become clear in few moments.

Dozens of examples were provided, and her readers added plenty more over the following days.

Although I could relate to many of the comments that patients had found upsetting, I had felt that perhaps the author might have embarrassed people who would recognize their own words. I’d discussed the blog post with a few friends, recognizing some phrases that had come out of my own mouth over my lifetime when speaking with ill friends and their families.

I had at no time ever meant to be insensitive, I just didn’t know what to say. Sometimes when I don’t know what to say, the wrong words come out. My friends shared that they’d had similar experiences over the years. I’m generalizing, but I’d say that in North America we’re not as comfortable addressing death and dying as some other cultures around the world.

Yes, in rare moments I do bite my tongue. And when it happens it’s almost always someone I don’t know well to whose words I took offence. I remind myself that the speaker was most certainly well intentioned and caring and I have no wish to let them know that the comment might have hurt a bit, or that it reminded me of something I don’t wish to be reminded of.

A few days ago however, something was written to my daughter that floored me. Someone from our past sent her an email with a request for her to do something to benefit the sender. No offer of help, no recognition of the struggles she’s going through. The request was prefaced with a phrase that deeply offended both of us. No, life is not treating her well. The sender should have a pretty good idea of how tough her life is right now in trying to balance getting an education with having a mother who is dying without a caregiver.  Not to mention all the other usual stuff than can crop up in a nineteen year old’s life.

Despite our best efforts to keep my daughter at school and me at home, something had to give. And it did over the last weeks. For the moment, that’s a private matter until we have more details sorted out.

The mother bear in me reared up. I told my daughter to forget the request, forget the email – just concentrate on the exam that she was stressing over. That I would look after the issue, and I did.

Let me just say that despite the fact that she and I both try to put on a brave face with a smile as much as we can, everyone may safely assume that our situation is pretty lousy at the best of times these days. This is really hard on so many fronts.

We appreciate the smiles, hugs and kind words. A lot. We appreciate the offers of help, we appreciate when we can share how we’re feeling. And also appreciate that sometimes we’d rather not talk about what’s going on and just want a pleasant diversion.

The next while will be even tougher as we face some difficult decisions, realities and consequences.  I won’t always be around to stand up for her, and frankly that truth hit me pretty darned hard across the face this week.

Antithesis…

Polarity, opposition, extremes – my life is full of contradiction.

The physical challenges continue to mount. My nurses visit daily now, the need for assistance from friends and volunteers has again increased. I sit often on the edge of very tough decisions. An illusion perhaps, it would seem most are out of my control.

It seems that that the more I require assistance with my daily routine, the more I miss my independence. If I let myself think about it that is. I’d rather not go there, and I invest significant effort to direct my attention elsewhere.

A wise friend reminded me last week that there is a huge difference between giving up and surrendering to reality, I struggle to keep that delineation clear. If I’m able to do something myself, I will. If I can’t, I’m learning a difficult lesson of acceptance that the goal is beyond my capabilities.

I liken the experience of my declining physical health to that of going through labour when I gave birth to my daughter. My body is going to do what it needs to do, I have little say in the process.

I’ve mentioned before that I have vivid dreams when I sleep (which is now more of a precious commodity than ever). Asleep, I can run, jump, drive, cook. Asleep, I live the opposite of my waking hours. But only when I refer to my physical self. Circumstances that gnaw at me while awake have a way of creeping into my dreams.

A life of extremes. A body suffering, yet a spirit richly nourished.

Knowing that when I need help, I need at least all my fingers to count out the number of friends who would in a heartbeat drop whatever they’re doing to come to me. And their gentleness in understanding that asking for help sits well outside my comfort zone.

Learning more life lessons in this lifetime than I thought possible. Finding out that despite a very bumpy road dealing with plenty of difficult situations, there is far more love and kindness to be found than I ever imagined. Some of the most challenging periods of my life have not been shared on this blog, believe me when I tell you that I’ve first hand experienced the opposite of love however you might define that. Hate? Indifference? Fear? (Which reminds me of a quote I shared with some friends last week. “I don’t have time to hate the people who hate me, I’m too busy loving the people who love me”).

Finding out that while there are some people who don’t seem to care a shred beyond meeting their own needs, there are far more with so much good in them that they have not only enough to share with their own friends and family, they have an ample supply in their hearts to spread around to strangers.

Great pain endured, and love sent to me in abundance at this time. To me it seems the universe has me going in two very different directions. In the bigger plan, maybe they have to go hand in hand for me to better understand each.

Need to Spell It Backwards…

You might have run into this situation. You suspect that an idea of yours is a bit odd, that if others knew what you were thinking they’d look at you sideways?

It’s happened to me more than a few times, and the result is always the same. I’m not alone. Others have self-doubt, odd habits, quirks. It’s only by sharing these thoughts with people whom I trust do I realize that the thought is not so unusual after all.

Case in point.

I live under very challenging circumstances, there’s little argument about that. And it’s not getting any easier in many ways, except for the fact that the net of support around me tightens as each day passes. I’m so darned lucky in that respect that it blows me away.

However, after a long period of time over the last two years during which I felt I hardly stopped crying long enough to catch a breath of air, nowadays I can find it difficult to shed tears for myself and my situation. Yet once in awhile I need a really good cry to release whatever sadness and frustration is inside of me.

Enter “Cry NROP” (I’ve intentionally spelled the second word backwards, I have no desire to have internet web crawlers bombarding me with spam with content of a nature inappropriate to this blog).

What the heck is cry nrop? It’s a movie I’ll put on so that I can cry over someone else’s troubles, in turn letting me get out the tears that can get trapped inside.

I had a good laugh this week with a few friends over this subversive use of a sad movie, only to hear that others too sometimes find it difficult to get a good cry started and have used or recommended this tactic themselves.

Cry nrop. The one that got me going most recently? '”Extremely Loud and Incredibly Close”. I sobbed my heart out, and at some point I realized that I was letting myself cry for me. And that’s okay once in awhile.

“Fatigued”…

I’ve just finished a phone call with my dearest friend who has been vacationing with her husband in Thailand for the last six weeks. It’s an annual trip to the other side of the world, yet she doesn’t let distance get in the way of checking in with me every day.

She’s just heading off to bed, and I’m somewhat into my day. ”Day” is a loose definition these days for me, last night was pretty typical for the way things play out. I was up until after 4 am, then up again at 7 am. It’s noon and I’ve not yet felt strong enough to haul myself out of bed (that treat of my daily shower still lays ahead!) Quite simply, it’s pain that keeps me awake. Nothing seems to knock it down enough these days to be able to get decent rest.

We chatted about some difficult matters that require discussing regarding my declining health, and ended our call with recalling my last blog post. “Soldier on by myself” was the term I used, and we began to imagine what that might look like if we were to be literal about it.

It started out with army boots. Getting my socks on these days requires great effort, are army slippers an option? The wheelchair would need to be repainted with camouflage shades (which I wouldn’t mind so much anyway, there’s no way I’d describe the colour as the copper I’d ordered, it’s Halloween-ready with that shade of orange).

Next, the enemy line would need to be very close. No further away than the length of my apartment, that’s about all the steam I have in my arms to propel the chair (it’s also the length of my oxygen hose). And do they make army fatigue yoga pants?

Pretty useless as a soldier, wouldn’t you say? Yet the fight continues whether I’m up for the challenge or not.

My friend and I ended our call as we often do – recalling some funny event from our day. Laughing so hard that it’s hard to finish our sentences, yet knowing each other as well as we do we usually know the words that didn’t get out. As I hung up the phone I wiped away tears of laughter, wondering which wins out more often these days – the tears from laughing, or tears of sadness and pain. I don’t think I want to acknowledge my honest answer to that.

Not Doing Myself Any Favours…

It was two years ago today that I was interviewed by CBC Radio on the subject of rare illness in Canada. How difficult it is to recall that day; hope that a new treatment would offer relief from the pain (which it did to some degree for about six months), my husband cheering me on teary-eyed from the green room – telling me how very proud he was to be at my side throughout this battle. And he spent the next few days emailing just about everyone he knew to tell them about the interview, letting them know how much he appreciated that I continued to keep a smile on my face, that as best I could I was trying to keep life “normal”. It seems a very cruel joke that the particulars of that day stand out so clearly in my memory as I soldier on by myself.

What is normal? My days look very different than they did two years ago. If you visit me at home in my bedroom, besides the oxygen hose you might be hard pressed to know that I’m ill. I’m constantly told how well I look. If I try to stand it quickly becomes apparent that something is very wrong. Going without the oxygen means that I’ll have difficulty speaking. So in bed hooked up to oxygen is how I must stay most of the time.

What is a terminally ill patient supposed to look like?

Growing up, in my ignorance I believed terminally ill meant a patient confined to a hospital bed; machines clicking and whirring above the laboured breathing of the patient.

Until I met other terminally ill patients over the last two years did it hit me that one could know that death was on its way within a somewhat predictable time frame; yet the patient still look quite healthy. Still active with family and friends, perhaps even continuing to work.

I’ve come a long way in understanding what “living while dying” could look like. Sadly I’m now much closer to the scenario imagined in my youth; however I continue to engage in however many ways I can with friends and family.

I have no idea how to respond to others telling me “but you don’t look sick!” when they visit. It’s well-intentioned and caring, and I don’t dismiss that.

There’s a firestorm on the inside. Pain, discomfort, conflicting feelings about what is happening inside me and around me. A clear understanding that this battle is nearing the end. I refuse to say that I’ll have lost the battle when I pass, that would suggest I haven’t tried hard enough. You may interpret my decisions along the way as you wish, my definition of “trying hard enough” is my own personal business. I’m at peace with my treatment choices (or choices to forego treatment) and that’s all that should matter.

My gift to myself every day is to save whatever energy I have to take a shower (with quite a creative set up to accomplish this on my own), to dress and to put on a face. Not a lot of make-up, but just enough to add healthy looking colour to the sallow pallor that presents itself on my freshly scrubbed face. Then a rest of some length to recover from that process.

This daily ritual makes me feel better. If it’s all that I’m able to accomplish in a day, so be it. But being clean, dressed and made-up isn’t doing me any favours in helping others understand how the inside of me is being eaten away by this disease. But as a friend and I laughed about last night, is it any easier to be told that I look terrible?

Love is in the Details…

People around me may believe that their words and actions are small and insignificant, but perhaps don’t realize how powerful an impact they so often have for me.

Today, remembering kindnesses has been what’s gotten me through the day. There’s no need to go into the details of what today looked like, it’s like yesterday but harder. And yesterday was more challenging than the day before that. The trajectory of this illness is undeniable, unrelenting and some days – like today – almost too difficult to stare in the eyes.

I’m paraphrasing what someone else who is seriously ill posted recently on Twitter. I need a vacation, but unfortunately I’d have to take me along.

Time for gratitude is set aside everyday, but it also floats in throughout my day unexpectedly. Those moments are as far away as I’m able to get from from the challenges I’m facing, and I savour them.
Just a few recent gestures that I’m  appreciating tonight. There are so many more, enough to fill a book or two (but likely even more)  if I were to list them all.

A call from a volunteer who’d delivered a beautifully prepared meal days earlier, thanking me for the thank you message I’d left on her voicemail. Apologizing that she might have appeared awkward when she entered my apartment, admitting that she felt uncomfortable with my health situation and hadn’t known what to say. Her children are lucky to have a mother so giving, honest and courageous.

An email today from a newer friend who has come to know me well enough to feel comfortable in sending me a short essay. written by a young woman, that was guaranteed to rip my heart open. And know that it would be a launching pad for something positive for me to leave behind when I go.

A call from a friend letting me know that even though we may not be in touch every week, I’m in her thoughts every day.

A note from my daughter letting me know that she’s feeling happy today. I so desperately want her to have as many of those days as possible, knowing what a feat that is right now with the worries that weigh upon her.

The smile from a bank employee who saw past the wheelchair and oxygen tubes. She wouldn’t have understood how much I needed the kindness at the moment, not understanding the gravity of the reason why I had to access my safety deposit box.

The offer of a kind friend to sell what’s left of my photographic art prints in her shop, and promise that my daughter would continue to receive the proceeds after I’m no longer here.

The desire of a dear friend that I meet her beloved Mom. I’ll see for myself where such a big heart has come from.

So many kindnesses have gone unmentioned. For all of you who think that the little something that you said or did for me was small, know that they’re all significant pieces in letting me finish off my journey knowing that the world can be a very kind place indeed. Something I might not believed many times along the path.

Looking Inside the Door…

My uncle’s 90th birthday today has brought me some luck and good news.

I need to preface the balance of this post by saying that by marrying my aunt and joining our family around seventy years ago he fixed himself in position to be one of the most important people in my life. Unwavering in his love and support for me, he has throughout my life been my role model for what I’ve come to believe unconditional love to look like.

The wheelchair arrived today. It’s an interesting perspective to realize just how excited I was about it getting here, you’d think I’d just been handed the keys to a Porsche.

It’s been a long and very challenging trek to get to this day, it was back in October when I conceded to the urgings of my support team that it was time to give in and use a wheelchair. It felt like a failure on my part to do as much for myself as I could. I’ve since been able to look at things a little differently, for now it’s my ticket to being able to get out into the world once in awhile. And to stay in my apartment perhaps a bit longer than I could without it.

I’ve had loaner and rental chairs in the meantime, but none of them fit me properly. Or they were much too heavy for my friends and volunteers to lift into the trunk of their vehicle.

This one  is light, comes apart for transport and it fits. The delivery person laughed when he saw the rental and the new purchased chair beside each other this afternoon, the difference in size was remarkable.

More good news was to come. The phone rang a short while ago, I saw that it was my contact at the insurance company. I thought she might be calling me back to acknowledge the message I’d sent to thank her for all her efforts to get me the chair.

Instead she was calling to let me know that my oxygen treatment funding had been approved. Within 24 hours. You could have knocked me over with a feather. Maybe not the best way of putting it, you could knock me over with the lightest of drafts these days!

I had steeled myself for yet another long insurance battle. More letters from doctors, more pleading, more of everything that I really didn’t need on my plate.

My government funding runs out March 28th, the insurance coverage kicks in that day. The thought of having to do without the oxygen that has eased my breathing considerably might have paralyzed me if I had let myself consider that scenario.

I won’t lie, it’s a royal pain in the behind to live with the nose prongs and tubing. I trip over the hose, it gets caught on corners, and trying to propel a wheelchair and keep the hose out of the way (and not run over the kitten who insists on lying down in front of the wheels) is a talent I’ll have to work on developing. Gasping for air and coughing so hard I choke and gag is a far less attractive option so I’m learning to deal.

On this blog I attempt with words to paint a picture of what life looks like around here (thank you to F. for putting it far more eloquently in an email to me a few days ago), today I offer a photo. This is my new chair, with one of my replacement oxygen tanks that was delivered today. I celebrate both successes tonight. I’m by myself in my apartment this evening, but feel far from alone. And Happy Birthday to my uncle who unknowingly (but most characteristically) shared his good tidings with me today.

 

The Inbox…

Thank you for the huge wave of support sent my, and my daughter’s way after my most recent post. Although I’d mentioned it in last year’s Rare Disease Day post, I had decided that I wasn’t this year going to mention the petition asking our government for help addressing rare illness concerns (you might see it on the right hand side of this blog depending on your browser). What point? After almost two years it sat only around 1200 signatures.

Thanks to my daughter and a dear friend who shared a request to sign the petition on their Facebook pages, it now sits a little higher. Certainly not representative of the hundreds of thousands of Canadians who suffer from rare illness. But it’s a start. And the lovely notes and words sent our way were heart warming, especially for my daughter who was for the first time widely acknowledging to her circle of friends what we’re up against. I’m so proud of her bravery. As she stated, “people are so kind if you let them be”. I concur. Most of the time.

With my body not cooperating much at all, I truly have no choice but to be confined to bed very close to 100% of the time. I’ve written about my various diversions – learning continues to a preoccupation with me.

One subject that I’ve tentatively broached over the last few years is the subject of how to die. I’m learning through the wisdom of others about different ways on how one can go about it when death is known to be on its way.

I’m often given the opportunity to speak freely with my palliative team, friends and volunteers about their own experiences and about how I’m doing on my journey. When I was first diagnosed it was reasonable to speak in increments of years, realistically that no longer applies.

This week I’ve been reading a book called “Final Journeys” by Maggie Callanan. It’s meant for caregivers of the terminally ill but I found it helpful nonetheless.

One simple paragraph from the book lifted a huge weight off my shoulders today. “We are never done. The inbox is never empty. The desk is never cleared. The dreams are never all realized, nor the projects all completed”.

This past week I’ve been able to tick a few major items off my to-do list. It lifted weight off my shoulders, yet it nags at me what I still feel I need to accomplish before I leave.

Being the uber-organizer that I am (a few of you who know me all too well can stop laughing anytime now…I’m not blind to how annoying that trait can be at times!) I need to give myself permission to accept that I won’t get everything done. And believe that those whom I love will see what I was able to do, and not what was left undone on my list.