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This isn’t the blog post that I started writing earlier this evening. My intentions led me to write a difficult post that wasn’t at all light-hearted. It was relevant and timely, but altogether not in keeping with the mood that the refreshing, ever so slight breeze wafting through my open window has brought me.

Perhaps it’s just the change in wind direction that has me feeling a bit cheerier tonight, often the wind carries the heavy aroma of garlic from a nearby restaurant. At times enticing, however on days like today when my stomach is feeling especially off from my meds it can be quite unpleasant. Props for the change to breezes from the southwest this evening!

Skipping the heavy post tonight, instead a commercial break brought to you by the season Spring (is it really at long last here? My outside sources are telling me so!)

Images that you see here are ones that I’d photographed in the days when I could walk, run, drive and when deemed necessary crawl on my elbows and belly with my camera to get the shot I wanted. Looking at them doesn’t make me feel the least bit sad or remorseful tonight, I’m taking comfort in the knowledge that I captured these images with intention and appreciation for the beauty I could see through my viewfinder at that time.

Although a good part of my gallery collection featured floral images, I’m far from being an expert botanist. If I’ve accidentally included flowers that display their magic in the summer or fall, please consider them a preview!

Dressing for the Occasion…

My daughter and I are both night owls. I used to be a solid eight hour per night sleeper, but that pattern has long since disappeared. I blame the almost year long bout with steroids a few years ago for permanently messing up my internal clock.

My daughter on the other hand does get her eight hours, it just so happens that she starts her sleep a whole lot later than I ever did. In the morning when she’s still out for the count, I can quietly catch up on whatever interests me on my iPad. Glancing over at her as she sleeps puts a smile on my face, and makes me feel far less alone.

At this moment she’s online window shopping for dresses, showing me her favourites. Which to me is quite comical given that I would practically have to bribe her to wear a dress when she was young, and now she declares that given the option she’d prefer to wear nothing but.

It’s quite an awakening to realize that I have no idea what the latest trends are. I don’t watch television, don’t get any magazines and not doing any online clothes shopping these days. My wardrobe mission these days is clean clothes that are comfortable to wear in bed. It would be easy to stay in pajamas all day, yet to me that would be a sign that I’ve given up.

We have had a good giggle tonight about how unaware I’ve become of how women are dressing these days. She’s educated me on the finer points of ombre hair, the return of wide leg pants, hair bows and horizontal stripes (flashbacks of my eighties wardrobe!)

As the weather improves, a few friends have expressed offers to take me out for walks. They walk, they push, I sit and enjoy the ride. Sounds like a pretty sweet deal for me.

I suppose it doesn’t really matter whether what I’m wearing is in style if we go out. Seated, I’m undoubtedly going to look a bit rumpled anyway. Experience has taught me that in a wheelchair most people are either looking away, or see just the chair and oxygen tubes. I wonder if anyone would even notice if I wore something completely inappropriate? I have half a mind to slip on a pair of stilettos when I’m out next to let people wonder how I would even get in and out of a wheelchair wearing them.

You might remember from a previous post that I’d given away all my work clothes, along with them went special occasion attire that would have been worn to openings of my photo exhibits, parties and other places that dictated the donning of something a cut about the casual.

When sorting my things out for donation with my best friend a few weeks ago, she gently reminded me that I’ll need to hold back one special occasion outfit. It’s not black (and I hope anyone in attendance on that occasion isn’t wearing black either), and as a final touch – I held back the highest pair of heels I own from the donation pile.

I may be disabled, but when I say goodbye I want to look as if I danced my way out the door. In my head, I will have.

A New Vocabulary…

My daughter arrived home on Sunday, we’ve had a wonderful time catching up. It’s amazing how quickly we’ve fallen back in pace with each other.

But boy, she sure brought a lot of stuff from school! Finding a place for everything is an exercise in planning, motivation and execution. We could use a touch more of the motivation part, but for now we’re trying to balance enjoying our time together with the chores. Well, her chores. I’m not a lot of help, a backseat unpacker shall we say?

Looking at this as a long term arrangement requires far more than just the desire to spend this time together. We need to be flexible, understanding, compassionate (towards each each other as well as to ourselves) and patient.

In addition to looking after me, my daughter will need to take care of herself and what’s important to her. It will be at my insistence that she gets out (beyond the part-time job she returns to tomorrow) to visit her friends, go on outings, or maybe just sit on a park bench to give herself time alone with her thoughts.

We need to take cues from each other, both verbal and non-verbal.

Did you ever play the game of drawing something on a piece of paper, guided only by the physical description of the item  coming from someone who isn’t allowed to use gestures or say the name of what it is or what it’s used for? We’ve had this sort of comical exchange several times already over the last few days. The most common scenario; she in one room, me in the other  as I try to explain where an item is stored as best as I can remember its location in the apartment.

Although we’re very close and communicate quite well, it’s amazing how four semesters at school for her, and a steep decline in independence for me has brought about the need for some new vocabulary between us.

What thankfully hasn’t changed is what a hand stretched out towards me across the bed means. Mom, I need a hand hug. And my darling, a hand hug is what you shall have as we do our best to get through this together.

There Will Be Days Like This…

It’s often happened that soon after I’ve written a blog post something will happen to hit the point home in some sort of ironic twist.

Yesterday was a case in point. In a “one day I might find this funny, but it could take awhile'” kind of way.

You might remember from previous posts that my daughter was due to arrive home this weekend from university, she’s not returning in September so that she can instead take care of me.

My gratitude towards her is overwhelming. I could go on, but I’ll save that for another post. I’m not missing any opportunities to tell her directly.

My wish was to make her feel as welcome as possible, for her to feel that this is truly her home. Until now she’s been at this apartment for the occasional holiday but hasn’t yet lived here without the expectation of being on her way again.

To make the apartment feel welcoming, my wish was to make space for her clothes and personal items, find a way to give her a small amount of privacy in sharing a one bedroom place, and to have her not feel the true weight of what caring for me entails right off the bat. Part of that was to have a clean apartment waiting, and as of Friday afternoon that was the case thanks to the lovely woman who cleans it for me every ten days.

Within hours the plan started crumbling. Anything that could drop, break, spill, get tipped over, overflow, clog did exactly that. I didn’t have any visitors coming, and for the most part I wasn’t able to rectify much of it myself.

By yesterday midday I had spilled a bag of kitty litter on the carpet (used of course, quite fitting with the way my weekend was proceeding) after the cat had a fight with his litter box (and won, it would seem), the bathtub had clogged,  there was a sticky flood on the bathroom floor with shards of glass mixed in (let’s not even go there with as to how that came about), dishes were piled up on the kitchen counter, and the cat had tipped over his food and it was strewn across the kitchen floor.

There was very little cleaning up that I could do, imagine trying to keep the oxygen tubing out of the way as well as attempting to not use my injured right hand. Not to mention that I can’t get down to floor level on my own, and the pain that is brought on by any moving about.

A phone call went out to my daughter who was packing up her apartment at school, with my sincerest apologies for welcoming her in a few hours with a disaster zone. I was beside myself, this was quite far from how I’d envisioned welcoming her.

The truth is that if she hadn’t been coming home to stay this weekend,  it would now be time to have a serious chat with my support team about how to move forward.

The crushing reality is that I can’t be on my own for extended times anymore, as I have been for sometimes days on end since moving into this apartment. By way of physical weakness and disability I can’t always get myself fed, dressed and stay hydrated. Fetching a glass of water is at times impossible, opening up a sealed bottle of water usually a task beyond my capabilities too.

The forethought that went into each day became exhausting. Had I asked the last person that was here to fetch me enough drinking water (or pre-open bottles for me)? Move wet laundry to the dryer? Fill the humidifier? (a necessity on oxygen therapy) Take out the garbage so that it didn’t start to reek in the passing of a few days with no visitors?

Asking is already hard enough in the first place for me, realizing after they’d left that I’d left out an important request worse.

My daughter has with her return given me gifts that I can never repay. Above all, time with my favourite person. Next, more time in my own home before facing the possible necessity to go elsewhere. Next, fewer physical challenges/more time resting (and accordingly possibly less pain).

I sense that I was being delivered a lesson yesterday, being that despite my objections to my daughter leaving school it has to be this way for now and I need to accept her assistance graciously. In many ways, it’s harder to accept help from her than it is from friends and volunteers. She’s supposed to be off making a life for herself, it should be me looking after her instead of the other way around.

On the other hand, if I could have only one person by my side as I each day become more vulnerable it is she. I trust her with my life. With the end of my life.

The Order of Things…

This has been a challenging week, primarily due to my diminishing physical abilities. Something as simple as trying to budge a bar of soap that had adhered itself firmly to the shower shelf when it dried had me upset with myself.

The hand that was free to attempt the soap’s removal caused additional frustrations. I banged it pretty hard on the grab bar (isn’t that irony) a couple of weeks ago in trying to break an impending fall in the bathroom, it would appear that I might have broken a bone or two in the process. Thank goodness for voice dictation software, otherwise nobody would have had emails returned by me this week. My one handed typing technique is coming along nicely too.

A day of mishaps led me to feeling frustrated and a little beaten down tonight. When my best friend called this evening I was ready to answer the phone with a shriek, holding a fistful of hair. But with a hurt hand, I couldn’t even get that right.

We speak every day, but tonight was a longer call of over two hours. The first part of the call, she listened as I whined. I don’t do that often, but there was a long and torturous (for her) whine stuck inside of me that needed to escape. There are a handful of people in this world upon whom I can inflict a rare pity party for myself, she’s always the first volunteer in line and she gently urged to me to get it out of my system this evening.

That complaining being mostly emptied out of me (I still have a good cry deep down inside that needs to get out sometime) we could get on to the cheering up part of the call.

We traded stories of misadventure that had happened when we were small. Bangs, scrapes, cuts, split lips. We were laughing uproariously – the injuries didn’t seem nearly as hilarious at the time!

A couple of incidents that I shared after our exchange of war stories correlate quite well to my frustrations of this week.

My mother has many times told me the story of how when I used to fall into puddles, instead of using my hands to lift myself up I’d cry for someone to come get me. The idea that getting a bit dirtier meant I’d be saving myself sooner was beyond my comprehension.

When I was in kindergarten, I one afternoon came home and broke into tears as soon as I saw my mother. It took a great deal of convincing on her part to share why I didn’t want to go school the next day. For the record, I LOVED school. As far as I’m concerned, I’m still in school and always will be, I never tire of learning.

The look of alarm on my mother’s face suggested that she wondered if something quite sinister might have happened that day. In reality, my teacher had gleefully announced at the end of class that the next day we’d be doing finger painting. The mere thought of dipping my hands into the coloured slime was fodder for nightmares. I’m sure that I was excused from doing it, but remember being pretty ticked off with myself as an adult when my daughter and I finger painted together. How could I have wanted to avoid such a wondrous mess?

This week’s frustrations have mostly been about my inability to keep up with the high standards of tidiness that I set for myself. If there’s a mess, getting it cleaned up these days is usually a task not completed according to my exacting standards due to my mobility and weakness issues or it doesn’t get done at all until somebody arrives to do it for me. More than a handful of friends and family would recognize an unattended mess as being something that could drive me around the bend. And it has this week.

When all else was crashing around me growing up, at least I could control the state of physical space around me. It’s been one of my coping mechanisms since I can remember. When I moved out at a very young age, I was teased mercilessly by my friends about how my wardrobe was sorted by colour. White at one end, black at the other with a carefully coordinated rainbow in between. The spices in the kitchen were sorted alphabetically, every receipt and slip of paper had its place.

I can assure you that as I got older I loosened up a lot, having a child left me no alternative than to be less precise about the order of things so that I could enjoy quality time with her.

Still a neat freak to some degree, disorder will often grind my gears. Not so much because of the mess itself these days, but more so due to my fact that I can’t return things to order on my own any more.

A process of letting go of what I could once do but can no longer, and grasping as firmly as I can onto what is still possible. What a mess.

There was one pleasant connection for me. For all the times I was quite a sissy about getting dirty, I must have been equally adventurous in order to have gotten so many childhood injuries (we’ll ignore the part about about being a complete klutz). Bikes to be ridden with abandon, hills to be tumbled down, horses’ backs to have fallen from, jump ropes to have tripped over, eyes to have been blackened after trying to turn a guest bed into a trampoline.

In life you don’t get dirtied, and you don’t get hurt if you just sit on the sidelines. Although physically I’m not on the field, in spirit I’m still in the game. An albeit messier one.

Forgetting Pain…

Muscle memory. Sometimes I’m glad for it, other times not so much.

Although at no point anymore am I free of physical pain entirely, the intensity of it varies according to a few factors.

Time of day can make a big difference. Pain grows as the day wears on having been on my feet or sitting up. At this time, I’m still able to get to the bathroom on my own so at least a couple of times a day I travel a short distance within the apartment. At night, I’m hoping that my bladder is less demanding. A reminder of needing to get up one last time to go to the bathroom before bed is one I dread.

By the same token, mornings are sometimes a beast. Especially when I’ve done something completely idiotic the night before (as in last night) in trying to retrieve an item that the cat swiped under the fridge. Never, never again will I get down onto the kitchen floor. Doing it while alone was even more asinine. Allow yourself to imagine the visuals, it causes me pain just to think about it much less describe it. I made it even worse by trying to sit on the balcony for a few short minutes last night to enjoy the mild temperatures. Both well intentioned but stupid actions given my current state of disability.

Pain medication alleviates the discomfort to a small degree, for a few short hours at a time. It’s however often not worth the side effects that kick in afterwards.

Distraction can play an important role, not nearly enough of the right kind of it around here. This situation changes in two days when my daughter arrives home from school – there’s nobody I’d rather have helping to keep my mind off of the pain. And such a lovely distraction she is on top of it. I’ve got lots of her adventures to catch up on from the last few months.

At times, like this morning due to last night’s antics, the pain went to epic levels. I had to leave my bed to allow the PSW to change the sheets and for several hours I had not a clue as to how I was going to get myself back to the bedroom from the couch.

At times when the pain is not at epic levels, I quite simply forget how bad it can get. I chide myself for having put my body under of the strain of the pain meds, certain that I could have done without. I truly forget how unbearable it can often be.

As my best friend says, if women were unable to forget the pain of childbirth the world would be full of only children.

I might have mentioned that I’ve been taking on-line courses, of late in the area of neuroscience. I’m fascinated by how the brain works, especially intrigued by the admission of neuroscientists that there is so much not yet known or confirmed about the workings of the human brain.

Quite a blessing to able to forget severe physical pain. One I’m grateful for every time another round hits me, otherwise I suspect that I’d live in deep fear of the next onset. I don’t.

Emotional pain I find to be quite a different story. I don’t live in a world of sadness, but if I choose to think about a painful emotional event the memory can still feel raw and searing. Over time the pain has diminished somewhat, but can be brought back if I allow it.

I happen to think that as much as the emotional pain hurts when I think back to it, it helps me in my drive to better myself as a person. Perhaps we can be more sensitive to others’ emotional pain if we’ve experienced, and remember similar emotions ourselves. I can sharply remember feelings of sadness, humiliation, embarrassment, shame, disappointment among others. They can all come back if I call upon them.

But on the flipside, I can also remember joy with similar clarity when recollecting. It’s happened numerous times over my lifetime that I’ve been doing some lone, mindless task thinking a pleasant thought,  and someone has asked me what was on my mind. I’d had a silly grin on my face and the other person wished to be let in on the secret.

It’s still somewhat easy to do. I’d like to think it’s a wonderful gift I’ve been given, to be able to bring forth a joyful memory when I need it the most. The contrast to unpleasant memories make the joyful ones all that more precious.

May I Get to Know You?

378 hits and it’s just past 7 p.m.

I’m honoured that so many of you are reading my blog, I’m truly overwhelmed. The numbers of daily visitors over the last few weeks has grown tremendously. My blog stats tell me that about 5-10% are spammers (no, I’m not going to market Rolex watches on my blog for anyone!), but the rest are visitors who came here by choice. Thank you.

This blog was initiated almost four years ago as a way to keep friends up to date on treatments, results (or lack thereof), and general goings-on in our household as they related to my illness. Repeating the same information over and over again in emails and phone calls was taxing for me, and it seemed to be a great solution combining a wish to keep caring friends informed with my love for writing.

It’s grown to be something else. It’s still a vehicle to keep friends up to date, but it’s also become therapeutic for me as my illness progresses – and a way to help relieve the boredom that can set in after spending long hours on my own.

What I miss is the other end of the conversation. Although there are many friends and acquaintances who let me know that they follow my posts, it’s a one sided deal for the most part.

I see my visitor count and I wonder what brings each of you here. What is resonating with you? Are you also facing serious illness? Do we know each other but perhaps haven’t been in contact for awhile (and may I have the privilege of privately catching up with what’s happening in your life?) Is there a subject surrounding serious illness that you’ve been hoping that I’ll raise?

What brought you here today?

Although comments can be posted anonymously here on the blog, I’ve learned that the majority of you prefer to communicate with me in a private email. (sessa1@live.ca) . Either way, I appreciate hearing from you. I really do.

Reminders of life still going on outside of these apartments walls is more welcome and appreciated than I could express in written word.

Thank you to my dear friend D. who offered her encouragement this afternoon to ask “why”. Why not?