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.

Another One Passes Without Change…

Today is International Rare Disease Day, the fifth observance since I was diagnosed in 2009 with Erdheim-Chester Disease.

I’m sad to say not a lot has changed in Canada regarding the availability and funding of treatment of rare illnesses.

Several years later and I still find myself embroiled on a regular basis in arduous applications (along with a fair amount of begging and pleading) for funding. The battles for me are no longer about experimental treatments in hopes of slowing down the progression of this disease, but instead pleas for pain relief, mobility aids and oxygen. Items to make a poor quality of life just a smidgen more tolerable.

Might things have turned out differently if access to treatments and medications had been more readily available? Would I have given up on treatments as I did after the high dose radiation sessions in the fall? I just didn’t (and don’t) have the strength anymore to keep on fighting. Perhaps I’ll be judged as giving up, as weak – but truly, until you’ve walked in these shoes… (and I pray that you never need to).

Click here if you wish to listen to the episode of CBC Radio’s “The Current” in which I was interviewed almost two years ago on the subject of rare illness in Canada. I won’t be listening, I’m afraid to hear the hope that I had in my voice at that time for myself, the fellow ECD patient interviewed (who sadly passed not long after, his family remains in my thoughts and prayers) and other rare illness patients in this country.

The system has exhausted me. Fighting this illness and all the challenges surrounding it has annihilated me. I’ve raised my white flag, and it’s awfully hard to keep waving it.

Getting Nostalgic…

A day of bringing back memories.

A very long chat this afternoon with an old friend whom I’ve not seen in about thirty years. How sweet it was to pick up where we left off so long ago and have it feel comfortable and warm.

It was to have been a visit in person today but unfortunately my body wasn’t cooperating with pain levels that have been difficult to get under control over the last few days. I suspect that my Friday grocery trip has something to do with it, but I’m still saying it was worth it (but if things haven’t calmed down tomorrow I may look a little less favourably upon the tub of ice cream I purchased on that trip – or just finish it off so the reminder has been removed!)

Cancelling was a difficult choice, but as I told my friend – there are days when I can cover up how much pain I’m in and others not so much. And when it’s not so much, I know it makes others uncomfortable to watch and I’d rather not put people who care about me through that discomfort if it can be helped.

I haven’t been able to see many friends in person over the last couple of weeks with the pain management dance I’m doing. Getting me to a point of lesser pain, not be nauseated and still awake takes some intricate timing these days. I’m not yet sure if I’m just not getting the hang of it, or the pain is indeed getting worse as the weeks pass. Today I’m going with the latter, and I’ve needed some pretty intense diversions to occupy my mind.

Tonight I needed interaction with people who exude positive energy, but it’s too late to be calling friends (I know a few of you will be wagging a finger at me to remind me that you’ve offered an ear 24/7, but in reality I just can’t see myself calling at this hour).

Instead I did something that I’ve been putting off because I thought it might make me too sad, but in reality it was just what I needed.

You might know that I used to be a pro photographer. Closing my business and selling all of my equipment has not been without a very heavy heart. But what a wonderful ride it was was to do a job I loved so dearly!

To start, I apologize for the length and for the fact that it can’t be played on mobile devices (I lost the original video and unable to convert  this one) – but I’d like to share what brought lots of smiles to my face tonight.  It’s a collection of portraits that I shot in 2009, compiled in a YouTube video to market my services when I still had services to market.

Like I said, it’s long. But exactly what I needed tonight. If I had a talent for anything, I’d like to believe it was capturing love in my subject’s eyes. I’d also like to think that this talent to see love in others hasn’t disappeared.

Click here for gorgeous smiles!

Take Five Minutes…

“People are just as happy as they make up their minds to be.”

Abraham Lincoln

A few of my friends and family members are going through a heck of a rough stretch lately. Serious illness, financial troubles; for some it seems that each day brings another another unwanted challenge. Yes, I do count myself in all these categories, if you’ve followed this blog you know that it’s been a really rough go for both my me and my daughter. I wish I could tell you that the onslaught has slowed down, but it has not.

The friends and family that I speak of now astound me. Even though we’re discussing some deeply troubling issues, they still have a light hearted lift in their voices, still speak of happy things in their lives, still laugh with me about the silly and mundane.

I had several lengthy conversations this week with others about happiness. The quote noted above from Abraham Lincoln is one that I remind myself of often, and have shared many times. Just more often than usual this week as I note how many of the friends surrounding me at this point in my life seem to subscribe to this philosophy.

Yesterday, a large number of people would have seen a middle aged woman (ouch, it hurt to write that little truth!), bundled up with a grocery basket in her lap as she sat in her wheelchair, oxygen tubes in her nose, oxygen tank fighting with the grocery basket for room. Pushing her was a lovely bundle of energy who always has a genuine and warm graciousness about her.

As others on our journey complained about the cold outside, the bitter wind and how miserable the week had been – what they might have missed was the sheer bliss I was experiencing at that moment. I was out. Icy or not, it was finally fresh air on my face (even though it was just a few minutes out in the parking lot). After months of anticipation, I was finally in the company of more than a couple of humans at once. They may not have been interacting with me (I refer to an earlier post about how one becomes invisible in a wheelchair), but I was out in public at long last. I pray that nobody looked at me with pity, it’s not something I was feeling for myself.

I feel like I share a delicious secret with many of the people who are currently in my life. That true happiness can be found in between all the crap that happens in life. Very few escape challenges and lows in a lifetime. It reminds me of when I’ve had the flu or a cold, experiencing the relief that comes when I can breathe easily again or my appetite has returned. Sometimes you just need to appreciate the moments that are absent of pain or discomfort.

Of course I complain about tough challenges, I’m unlikely to stop. Nor should anyone, in moderation it sure lightens the load when you can share your burdens.

But if you’re not already in the population who can find happiness in the little things, I implore you to set aside five minutes to appreciate the good in your life. The feel of a warm sweater, the taste of a favourite food, the hug from a loved one. And the opportunity to hug the ones you love. I hope you can truly appreciate that last one (I apologize if I’m coming across as sanctimonious, but on this last point I especially believe that I know of what I preach).

You can decide that every day will hold a moment to be singled out and appreciated. You might find that there are more of them to be found that you might have believed.

And now, I’m going to hug the person whom I love most of all. Having her home for the next week brings me more happiness than I could possibly express!