Slings and arrows

This morning we had planned to go see a dear one in the hospital. We had booked with him yesterday evening to see him at 10:30 am today.

I woke up and as I was starting to get dressed, I began to hear clutter in my mind, things that repeat, and I knew that was bad. My husband asked me a question but I had trouble answering him. That, of course, is a huge warning sign so I lay down in bed.

A while later, I managed to call my husband upstairs and he lay down with me and rubbed my back because I was sad and frustrated. I felt terrible to have been in that situation again. I guess I keep dreaming that it will get better. It was then 10:15. I asked my husband to call and delay our visit. He did, just saying that something came up and we've had a delay but that we're still coming.

I was so sad to not be better. That was a hard morning but the worst was yet to come.

We made a run to the person's house to grab some things he had asked for and we got to the hospital. My husband dropped me and our eldest at the door.

We got upstairs and walked in overhearing him on the phone with another loved one. He interrupted the chat saying we were here. Then they both laughed that we are late and the person on the phone said she has to invite us an hour earlier to get us there in time. Due to the fact that he is hard of hearing, the phone was set very loud and so we overheard the whole thing ourselves.

Hahahahha! Isn't that hilarious?!?

No. It isn't. I cried in the hospital and immediately explained how insensitive it is. I told him, through tears, that I had a seizure at home and that's why we're late. He cried too and was clearly ashamed. But I don't care. They should know better.

It aches that even the ones I most trust are so numb to it all.

This is me and I might NEVER change. I guess times like this help remind me to be more selective about the invitations I accept. I will never stray from my family. The rest, well ... passive-aggression is unacceptable. Even the kids (my sons who are already very sensitive, kind, compassionate young people) were pretty sad too.

I post this in the hope that someone somewhere out there will see a similar pain and not feel so alone. As I explained to the kids, part of the important wisdom is knowing when to keep distance from those who hurt you.

I look normal so maybe I make an easy target for the slings and jokes and arrows. So be it.

I remain strong and in love with God. I am alive ... so the ignorance cannot undo me.

Be well.

Watercolour Memories

Forty years ago today my parents were getting ready to exchange their vows. Hair curled, stockings on; clean cut and shaven; flowers and confetti. Oh the joy of June 9, 1973!

As time moved along babies came, loved ones passed ... and thanks to their union, here I am.

If only life really was a fairy tale. If only the bride and groom could hold each other's hand and that day's joy forever. But of course, life is only a kaleidoscope of moments because time moves on. And if the moment of their wedding had frozen there, I would not be here, nor would my brother, or my three sons.

My father often mentions how joyful he was when he became a father. I guess, nearing 40, he was thinking he might not have children. So I am sure he would say "thank God for time moving on." Babies, summers at the lake, family vacations, city council and careers served well. Yes, time moved us past many wonderful watercolour memories.

But as with day and night, ebb and flow, all of life has a balance. Dreams and nightmares.

Montfort Hospital, Ottawa

So here I sit, in a hospital, waiting for my 80 year old father while a surgeon wages unexpected war on cancer in his colon... it's hard not to wish for a happier time - one when Mom was still here.

Eventually, if you fall asleep on damp salty pillows often enough, you stop wishing for things that cannot be.

It's all about the here and now. Right now. Just absorb this moment. For better or for worse. Reach out and squeeze the hand of someone you love and thank God for the many blessings that make life's challenges more manageable.

As Mom always reminded me:
"This, too, shall pass."

Aching injuries of a Stroke

When you find out someone near you has had a stroke, you're almost always surprised... totally blown away. It seems like they were so well. How could this happen? Yesterday they were fine, today they are not-so fine.

Imagine... As surprised as you are, they are even more surprised.

One of the weirdest things about having a strong hemorrhagic stroke is that you lose time (sometimes -like in my case to accommodate a brain surgery- you lose a lot of time) and when you wake up you are the last to know where you are, what happened, etc etc. In fact, people around you are often medical staff (i.e. strangers) and even your loved ones may have to explain to you where you are more than once. Yes, after a week or two your friends are coming to terms with it but if you are the patient, you won't yet have a grip on what's happened to your body, your career, your family... your whole life.

Of course I could spend this blog post telling you about scars and paralysis and other visible challenges. I could spend the blog telling you about cognitive disabilities... but while I have your attention I am going to tell you about something more insidious, more painful, and something no doctor can see or diagnose or even test. It's the decay of friendships.

Since my stroke, I have lost quite a few of my "best" friends. At first, there was a pretty fast moving parade of people into my hospital room. This was mostly when I was unconscious so it was only my husband who would find out from a nurse who would say "So and so was by last night to see Jennifer. You know them, right?" Most he did know but some were not intimate friends (and this was while I was in the ICU). So he shut down the guest list to family and close friends.

Then I was having several visitors in the day and then more at 9:30 and 10:00 at night. It would be convenient for them on their way home from somewhere so they would pop by. The nurses would keep a distance and (somewhat ironically) suggest to me after the guest left, that maybe it was a bit late to have company since I really should sleep ... as if I had a choice in the matter. :)

But they were right and the guest list got further ratcheted down.

From the ICU, you pretty much know the drill (and if not, the timeline is posted somewhere in here) and we went from first week of September to the second week of October and then I was moved from the Civic Hospital to the rehabilitation at the Elisabeth Bruyere Hospital. In that hospital they are very very very clear that you are on a pretty intense schedule so guests are best on the weekend (sometime I will talk about the incredible intensity of that program - in a good way). Result: we're down to seeing my husband and my Dad and brother. My sons would come on the weekends and eventually I was allowed to go home for weekends to see if moving home was possible and what amount of supervision I would need.

Over the course of this period something amazing happened. Some friends sent me messages of caring and support via the Elisabeth Bruyere contact Web site (which was awesome and I stuck them on my room wall). A couple of neighbours and a couple of friends brought some meals over for my husband and kids (frozen chili, spaghetti sauce, casserole), and some sent get well cards. I was in the hospital for almost 3 months. Thank God for those people.

But on the other end of the spectrum, some wanted to get together. Wanted to catch up on the phone. Wanted to have a weekend gathering. Well I did try to do phone calls from my hospital room. I insisted. My nurses would sigh knowing how that would work. I don't even think my husband knows this... but I would have to sit in my dark room and cover my free ear and my eyes and then do a call. Mostly my Dad or brother (sometimes a friend or my husband). When the call was done the nurses would come in and medically sedate me and rub my back. I would cry. Who could know this? No one... why? Because I smiled and chatted as if everything was fine even though deep inside my brain I was in pain and scared. Bottom line: I was stupid.

Before I went home, my Social Worker taught me how to say no (and I learned that very well) and it was important for me to be able to do that before I left. I haven't truly used the phone in any meaningful way in more than two years.

But now, after my stroke, the saddest injury is to our list of friends. Amazingly a few even "unfriended" me on Facebook. In retrospect there had been unanswered email on my part. Birthday cards I didn't get out. In their mind, that must have meant 'it's over.' [writing, at this point, I sat for a while staring at the cursor blinking... half of me wanting to bawl, the other half numb].

How to proceed with the post...? On one hand I can hear some of you saying: "Who cares? What an idiot! You're better off without them!" and of course I know you are right but it still hurts, especially because these are not 'acquaintances,' they were my true friends (btw, well-educated, faithful people... no "predictable" demographic, that's for sure). I could post about how to move on with a head held high...

And if you are struggling recovering from a stroke you might be thinking "oh well, someday I will be back to normal and then I will show them" or "When I am stronger I will reach out to them and tell them how it made me feel and hug them, forgive them and we'll move on better friends than ever." But really, this post isn't about predicting a floral, foggy future... it's about the gritty here and now.

So as for the here and now, my journey has had some very painfully lonely parts where the only ones I might have let close enough were nowhere to be found. But there have also been some true friends who were persistent and understanding and patient enough to wait until I could manage a visit in person. It does tell you a lot about people.

But I'll end this post by quoting one of my favourites: Eleanor Roosevelt. It was her wisdom that shared:

"Great people talk about ideas.
Average people talk about things.
Small people talk about other people."

So I hope you saw this post for what it was, not ranting lists of names but rather sharing private and painful real events and things that affected me as a stroke patient. Maybe I can really summarize it with an idea (yeah I guess I must be aspiring to be a 'great person').

You cannot know what is in the mind of someone you care for so assume the best and don't cut all ties and feel slighted. As tough as it is for you to miss them, maybe they are missing you even more.

Be well.