Seventeen Hours…

“Nothing fixes a thing so intensely in the memory as the wish to forget it.” Michel de Montaigne (1533-1592)

If I’m lucky, I get about four or five hours of sleep a night. To get even that takes a dinger of a sleeping pill to reroute the pain to Never Never Land for a short while. Even then, I’m subjected to some pretty horrendous nightmares, one of the possible side effects of this medication. Even unconscious I’m unable to escape this situation.

Being awake at 4 am has always bothered me, there’s just something especially unsettling about it. To dodge that hour, I stay up every night until at least 1 am, take my sleeping pill and hope that I make it to at least 5 am before waking. Almost always waking up on the edge of a dream that has upset me, almost always a replay of disturbing events that have happened in real life over the last two years. Very seldom does my illness creep into these dreams, for the most part I’m able to walk and do pretty normal things. Just under abnormal circumstances.

These days my level of exhaustion hits new heights. I’m not able to nap due to the pain, so I lay quietly trying to think of pleasant things. More difficult to do as the weeks wear on. Being more or less confined to bed leaves far too much time to think, despite my best efforts to occupy my mind.

For the sake of argument, let’s say I get five hours of sleep. A good night. That leaves nineteen hours. Most days I have a visitor or two (friend, volunteer, nurse, Personal Support Worker), visits might add up to a couple of hours.

This still leaves about seventeen hours a day when I’m on my back (or in some contortion that I feel a bit more comfortable in), alone in my room…time that has to be occupied. I don’t have cable, so I listen to audiobooks and on-line courses, watch DVDs that have been loaned to me, try to find something on Netflix that I’ve not already seen. It’s around this time of the month that I have to slow down the online access as I get too close to my monthly bandwidth limit, leaving me even more time to fill in creative ways. Let’s not forget the insurance issues I wish I didn’t have to deal with on a regular basis, I just don’t have the energy for it. And sometimes all I can do is to push away the attempts at distractions and bear down against the pain.

I had a thought provoking conversation with a spiritual counsellor this week that was of help –the reality is that this really sucks (his words!)

We discussed quality of life. There truly isn’t much left. I’m grateful for the visitors, emails and phone calls. Grateful for the social assistance that’s been made available to me in the form of volunteers, nurses and PSWs.

Being hooked up to oxygen, having to limit time on my legs to about ten minutes a day (preferably less if I can get away with it to lessen the aching at night), not being able to escape these four walls, not being able to prepare proper meals for myself. All more frustrating than I could have ever imagined when I years ago thought about what the later stages of this disease might look like. Who would have thought that I’d blister at the top of  my ears from the oxygen tubing?

For the next few days I’m able to put this aside. My dearest friend is flying in to be with me, to help me with some lingering loose ends. The apartment will be full a good part of the time with other friends, my daughter will be home too (an important note for anyone who’s had the thought, it’s at my insistence that my daughter is away at school. We’re in agreement that it’s the best way - and our way - to go forward at this time). We’ll laugh, we’ll cry. And then laugh again.

But when the next few days have passed, I need to look at rewriting the header to this blog. The words (edited as appropriate a few times)written almost four years ago have become a lie.

Far too much time left over to try to forget things that insist on fixing themselves in my memory. Not a terribly productive use of my time, but it’s the reality that is.

Dying  alone slowly and painfully is something I wish nobody had to go through (and I know how much the people who care about me hate seeing me like this too, God bless them for their prayers for a more peaceful end to this). I have to take it hour by hour, seventeen at a time.

Special Favours…

Many wonderful people do very nice things for me. Some I know better than others, but generally the people helping me out know my situation and go above and beyond to make my days easier.

Most of my interactions these days are over email or over the phone, getting out is getting close to impossible. In the last three weeks I’ve stepped out of my apartment just once (although a challenge to make it happen, I was thrilled to be present for an event that brought a smile to my daughter’s face during her visit home from school).

Although friends and volunteers take care of most of the everyday tasks that I can no longer manage, there are still interactions that require me to pick up the phone – I just have to pick my moments carefully these days and make sure I’m juiced up with oxygen so that I can get out full sentences without a coughing fit.

If I have the choice, the person at the other end of the line need not know I’m ill if it’s not relevant to the conversation. It’s my chance to feel somewhat normal in a life that is quite far removed from what normal used to look like.

Today I played the “sick card” to get a matter attended to more urgently, and it weighs on my mind. Looking at the situation practically, the matter needed a very quick turnaround – and the only way to make it happen was to very briefly explain why I was not able to appear in person to complete a transaction. That I needed to have an exception made for me because I’m ill, that I needed to be treated differently than the average customer.

Although this challenging health and living situation is with me 24/7, it hits home at these moments just how incapacitated I’ve become over the last month. Yesterday and today I’ve learned some particularly tough lessons about my limitations. Trying to do a few tasks on my own because there was no one else to do them, and failing miserably. I can only blame myself for not having had the patience to wait until someone was available to help me, because they always gladly do so.

Things will be changing in a few days after I meet with my case manager. More help is available, and the discussion continues about whether it’s time to move me to a care facility. The hope that I’ll stabilize lessens as each day passes despite my determination. My will appears to have little say in matters these days.

This is truly a miserable situation. Especially if I let my mind go back to discussions that were had when I was first diagnosed about how I hoped things would play out when my health got really bad; and the unconditional support and assurances I received at that time that I would not be going through this alone. It looks less likely as each day passes that I’ll be able to end my days in the comfort of my own bed. This thought saddens me greatly.

This week several people whose opinions matter to me have reminded me that I don’t always have to put on the brave face, that I have every right to have the occasional pity party for myself. Today I had to invite a stranger into that party and I don’t like it one bit.

All Tied Up…

If I thought that my independence was compromised when it was necessary to transition to a wheelchair when leaving my apartment, I was in for a big surprise when something even more limiting was introduced last week – a fifty foot tether.

With my increased difficulty in breathing, my nurse strongly suggested that it was time to start oxygen therapy. I wrangled with the idea over Christmas Day whether I should proceed or not; having signed a “Do Not Resuscitate” order a few months ago I didn’t know if going on oxygen fell contrary to my wishes to forego life supporting measures as my illness progresses.

A chat with a palliative specialist assured me that even in hospice oxygen therapy is used to make patients more comfortable, I would not be acting against my DNR. That chat being only part of a longer meeting at my place during which I finalized all the paperwork for my admittance to hospice for when I, my loved ones or my doctors decide that I’m ready.

Friday afternoon and evening was a whirlwind. Let me say that getting oxygen set up at the onset of a long weekend leading up to New Year’s Eve is no easy feat  - but thanks to the persistence and kindness of my nurse, a few friends and my family doctor (who was on vacation but insisted on doing what she could to help me out immediately), I had oxygen within hours. Plus a few new prescriptions to ease my respiration and to take the edge off of the unrelenting pain.

The oxygen is helping somewhat, I can sit up a bit longer than I’ve been able to in weeks. And conversations are interrupted less by the hacking coughing jags (my daughter’s catch phrase – said with love - since coming home for the holidays has been “Lungs. Keep them on the inside please Mom”).

Over the years I’ve been administered oxygen a few times when laying in a hospital bed, but trying to carry on simple tasks around the apartment with a hose up my nose is no easy task.

I learned a tough lesson the second day that one really must sit still for a bit after removing oxygen to allow the body to readjust. A lesson that I didn’t seem to grasp after the first catapult towards the floor either.

The constant whine of the oxygen concentrator is a rude reminder of my illness. The travel tanks (what kind of trouble can I get into on a three hour outing?) sitting in my living room don’t help (mind you, the loaner wheelchair resting there doesn’t help much either).

Not to mention all the rules that come with oxygen therapy. No candles, no going near a stove in use (a twist that will be interesting to work around given that I have a freezer full of meals that need cooking). A sign on the door stating that on the other side resides a fire hazard. And one cautionary note that surprised me is that I need to check that none of my facial products or lotions contain petroleum (out comes the magnifying glass to check out all the labels). Here I was thinking that the technician told me that they couldn’t be used because they could degrade the plastic tubes – it’s because they could ignite!

The fun doesn’t end there. The government will only supply the equipment for a short time, here goes another round with the insurance company to get coverage beyond that. I’m been warned that given my diagnosis of a such a rare disease that this process could be rather problematic. When hasn’t it been?

This morning I lost it. Ripped off the oxygen and had a good cry. Which I might add is really not a combination conducive to good respiration. In five short days I’ve become so frustrated with nasal prongs that fall out whenever I bend over, tripping over the hose when I tried to get out of bed, the sharp pain up my nose when the kitten yanks the hose in the opposite direction in a spirit of play.

Tired of having to plan out every move in the apartment, or even just in my bed.

The oxgyen went back on after my short-lived cry.

The kicker to all this is that I’m fighting so hard to stay as independent as possible in an apartment that I despise being in. The contradiction can’t help but slap me in the face. If you interpret this post as that I’m feeling sorry for myself today, you’re absolutely right.

A Christmas to Remember…

Perhaps I’m not terribly original in my choice, but my favourite movie for as long as I can remember has been “It’s a Wonderful Life.” “Life is Beautiful” runs a close second; such is the life of the almost full-time optimist. A title sincerely tested over the last few years, but I remain an optimist all the same.

Every time I watched “It’s a Wonderful Life”, my faith in humankind was lifted just a little bit higher – for at least a little while. It would depend on my circumstances at the time as to how long that feeling would last. There were also a few years in there where the premise of the movie was almost lost on me, including last year. Last December I still had cable and a PVR, and set it to record the movie a few days before Christmas.

For weeks the recorded program sat on the PVR, and eventually I just deleted it – I just couldn’t imagine that the movie would do anything other than make me feel even sadder than I was at the time about the situation happening to me and my daughter.

This year has been beset with challenges that I couldn’t have even imagined. The circumstances cause everyone to shake their heads in wonder, or more accurately in shock. It seemed impossible to believe that things could get worse, yet over the coming months they did.

Fast forward to a year later.

What’s transpired over the last week has been simply magical and breathtaking. The year in whole has been a study in extremes, but right now the good stuff overwhelms.

This year, without cable TV, I haven’t been able to catch “It’s a Wonderful Life”. And I don’t have to. The movie has come right to my front door. And into my mailbox. And over the phone.

Some of it came as financial aid as it did in George Bailey’s case. Friends and strangers put together their own version of a Christmas miracle to help fill our cupboards and fridge again, also ensuring that I am able to get months of the housekeeping assistance I desperately needed in my declining state of health – plus enough to allow me to treat my daughter to a touch more than the pair of slippers which was the only gift she’d asked for. A tremendously generous gift from a large group of people I’ve never even met, generous in both in dollars and the desire to be of help. The effort led by a friend who is one of the most genuinely caring people I’ve ever had the privilege to know.

I’m able to get a few new clothes, my friends have been very kind in not mentioning the fact that they’d see me in the same wardrobe items over and over again. I’d convinced myself that I was not too old to get away with the look of frayed jeans. I am.

Another lovely surprise this week, a stupendous virtual tour of New York City was hand delivered. Authentic right down to the samples of the Philosophy shampoo and conditioner that the hotel  that I virtually stayed at stocks in their guestrooms! This gift was put together by a friend of my daughter whom I’d met just once briefly; the assembly of this wonderful gift was months in the making. I just can’t put it down, every time I look at it I see something I hadn’t noticed before.

Other amazing treats have poured forth. Lots of delicious food (including more than my fair share of chocolate!), a wonderfully relaxing massage, an angel (a reminder of all the here-on-earth Clarences who are watching over me!) and most appreciated - gifts of precious time spent with me in person or on the phone, and through so many lovely emails.

A home visit from my estate lawyer on the afternoon of Christmas Eve (his wife even putting their holiday preparations aside to act as witness) so that I could go into the holidays secure in knowing that my wishes for looking out for my daughter’s future would be carried out.

Other professionals and volunteers who’ve moved heaven and earth over the last weeks to ensure that these weeks that I’m blessed to spend with my daughter over the holidays are as carefree as they possibly could be. And having the sensitivity to step back to leave us to some time alone too. Last night my daughter and I threw tradition out the window and had ourselves a Christmas Eve that we mutually declared to be our best ever, despite that fact that we hardly budged from the comfort of the bed.

Over the years I’d wondered if anyone could truly feel as special and appreciated as George Bailey did at the end of “It’s a Wonderful Life”. The answer for me is most decidedly yes.

Thank you my dear friends, we’re so very lucky to have you. It’s been a Christmas that couldn’t possibly be outdone if we’re to measure it by the warmth you’ve put in our hearts. You’ve given me the most beautiful gift imaginable by letting me know that you’re sticking by my side on this journey.

Winning. And Losing…

A few weeks back I wrote that when there’s a longer stretch between posts that my friends and readers offer their concern for my well-being. This time with reason sadly.

When I started writing this blog it was a way to share updates on my journey with ECD with friends. Everyone could read the same update, get that out of the way and then I could then spend my time speaking of more enjoyable matters with them.

I’ve been told that this blog has been a resource for other patients dealing with this illness; wondering how I’ve made out with the various experimental treatments I’ve tried over the last three years as they consider their own treatment options.

Along the way this blog turned into a story, sharing the medical details of my battle with ECD, telling anecdotes of my family life (funny events have a way of following me around, I’m glad to have added a smile to your faces once in awhile!), sharing quite openly about how I’ve been dealing with the illness and a rather trying set of personal circumstances.

As with any story, at some point it needs to draw to a close. Going forward I imagine that the posts will be fewer and further between. The truth is that my health has been declining quite rapidly over the last weeks, and although I like to think of myself as the eternal optimist I need to face some harsh realities. There just aren’t that many funny stories to share these days (but they’re not completely absent either!)

Some tough discussions have taken place over the last week, including one with my daughter that I wish with all my heart could have had a very different outlook. My best friend flew into town on short notice to help me take care of some stupendously difficult tasks that I would otherwise have had to tackle on my own.

So far this sounds like the losing part of the blog title.

When my daughter came home from school this past week it was blatantly obvious too her that some big changes had occurred in her absence. My heart was breaking as I told her how things appears to be playing out for me, and I told her that I hoped and prayed that she didn’t view it as me giving up.

What she said to me was a gift that I’ll take with me to the end. Through her tears she looked me in the eye and told me that as far as she was concerned, I’d won. That I’d been provided with a poor prognosis, and I was still here beyond our expectations.

Perhaps I’ll rally again as I have on previous occasions, but sadly things feel very different than when I’ve gone through other medical crises.

I’m surrounded by people who love me, care for me, and accept me for who I am (quirkiness and all!) and who are making this last part of the story as happy and peaceful as I might possibly hope it to be under the circumstances. But I am very, very tired in every sense of the word.

I’m not certain when I’ll stop writing here, and it’s of course entirely up to you whether you check back or not. Regardless, dear readers - I thank you for sharing this journey with me over the last three and half years.

The “Nothings” That Are Truly Something Special…

The bag was handed over to me today with “it’s nothing Sandy, really”. One of many gifts, favours, kindnesses that are extended to me on a regular basis. Today it was soup and dessert, a dinner I didn’t have to rummage for. Frankly the fridge and cupboards are quite empty (for a number of reasons that cause my heart to ache if I allow myself to think about them).

Tomorrow the hospice feeds me lunch, another meal in a week during which it’s just been too difficult to stand for anything length of time at the stove.

A whole lot of “nothings” that kind people offer to try to make up for the huge, gaping chasm that stands in the wake where I was left to deal with this on my own. So many with tears in their eyes, telling me that they wish they could take all the bad stuff away with the wave of a hand.The hugs that envelop me, trying to hold me away from the edge of what’s to come.

A phone call tonight from a new friend who asks if he can check in again in a few weeks. He is one of a circle (a word I use with intention) who dedicate themselves to others on a similar path to mine, people like me who muster a smile and a thank you when wished “get well soon”. There are others around me who understand; who tell me often what I mean to them – leaving loving thoughts for me to hold onto. Knowing that no one wants to leave this life feeling alone. Letting me know that my time here has mattered. Trying to make up for those who have chosen to turn away.

I’m clawing at the distant dream of relief from physical pain, knowing that there’s only one way to escape it.That I must steel myself against this pain while trying to deal with the logistical setbacks. Trying to work my way through the minefield of administrative nightmares that seem to pile up higher and higher each week. The phone calls and emails that I’m just too exhausted to tackle most of the time.

The outpouring of “nothings” is everything. I try to go to sleep every night thinking of the day’s “nothings” so that I can shut my eyes feeling not quite so alone in this. And I pray that when the end does come, that my heart and my head will be filled with gratitude for those who offered to me what they might have believed to be something quite insignificant, but wasn’t at all.

The Difference A Foot Makes…

The victory of getting a wheelchair was short lived. In concept, it was wonderful news that social services was making an exemption for me despite my palliative status (which disentitled me to no-cost, loaned assistive equipment), but unfortunately the type of wheelchair isn’t suitable for me.

It’s just too heavy for any of my volunteers to lift into a vehicle, and has been sitting now for weeks idle and taking up valuable space in the middle of my apartment. So back it goes. And the red tape with insurance begins once again (I really thought I had dodged that bullet when I decided to forego any further experimental treatments, but here I go again despite perhaps not having the energy required for the protracted interaction with the insurance company and other parties involved with the application).

There are some places I’ve visited over the last few months that make scooters or wheelchairs available to their customers and I have availed myself. This has allowed me to run occasional simple errands with friends and volunteers (or maybe not so simple sometimes – some stores offer better quality equipment than others, not to mention differing widths of aisles for manoeuvrability issues). I’m grateful when I get access to a mobility aid, otherwise the trip has to be either shortened considerably or forfeited altogether.

The most fascinating aspect of the transition to a “less able bodied” individual has not so much been about equipment as it has about peoples’ actions and attitudes.

Shrinking down about a foot in stature when I’m in a wheelchair changes how many strangers treat me. Although there are some very pleasant surprises (kudos to two stores that helped me last week, I can’t say where or I’ll spoil a small Christmas surprise for my daughter. The service was outstanding, no pun intended of course), but often I’m treated as invisible or seemingly unworthy of the same courtesy as the customer ahead of me in line.

If you’ve met me in person, you’ll know me to be quite friendly to everybody. I enjoy making eye contact and sharing a smile with strangers. If someone appears to be ill-tempered I try my best to imagine that they’ve got a tough challenge on their mind and try to be friendly even when they’re not.

Sitting in a scooter or wheelchair a foot lower than where I’d normally be has been a learning experience to say the least. If I thought it was bad when I was walking awkwardly on my own or with crutches, I was in for quite a surprise! Very seldom does anyone make eye contact, even when I’m paying for a purchase. I walk away (wheel away to be more precise) – later asking whomever I was with if it was my imagination. Was I being my usual self? Am I doing anything to make the cashier or salesperson uncomfortable? I’m assured that I’m acting no differently than in other interactions with strangers, but yes – they’ve also noticed the difference in how I’m treated and relay similar stories coming from others with physical disabilities.

I’ve point blank asked trusted friends how they feel when interacting with a stranger who’s physically challenged, if they find themselves treating the person differently. And in response I’ve received some very honest and appreciated feedback. Some of it was difficult to hear, but I wanted to know.

It sounds to me like it comes down to what our families taught us, and what sort of exposure we’ve had before with the “less able bodied”. I hear that some had been taught not to make eye contact for fear that the disabled person might interpret it as staring. Others have been taught to engage as if the mobility aid were invisible.

The latter is a far more enjoyable experience for me, and it just might be for the person who’s a foot or so taller than me at that moment too. I’ll continue to offer a smile to anyone who’ll accept one. Just look down about a foot to find it.