brain injury, loss, memories, optimism, parenting, stroke, vulnerable, writing

Just when you thought it couldn’t get worse

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It does…

I don’t know what to say. I’m sitting in a lovely house and a lovely place, and I’m still told that it was just one of those things.

Yes, I’ve had another stroke. A bleed. My brain started to bleed and it wound up with me trying to crawl up the stairs. It’s hard to fathom.

On March 7th of this year I turned 50.

It’s a wonderful landmark and also one that makes me stop and wonder. I wonder how I’ve passed through so many years. Back when all of this started… when I was 36.

This story unfolded on April 11th.

I was on the computer. I remember thinking “Gee, how hard is it to click where I mean to click.” I was fighting where I was clicking. It’s hard to describe this to you – imagine trying to click but not succeeding. I mean we do it all the time. Then I realized “Uh oh, I better get upstairs and try to lie down. I might be having a stroke.”

Now I know what you’re thinking. Surely this girl isn’t going to go upstairs and lie down — she knows what’s happening. Well I knew what was happening but in that moment your limbs feel like concrete and your ability to make decisions is severely impaired.

I was trying to make my way upstairs and I tripped on the barrier which keeps the dogs down. Again. And again. I could NOT get my right leg up over the dog wall. By now I wasn’t moving and I put my hands down and then I lifted my leg. It hurt because my leg wasn’t cooperating and the matching arm was also not participating. I finally got over the barricade. And now that I’d managed, I thought “OK. There we go. Now just get into bed.”

It’s ridiculous. I feel like it’s a joke how slow I was going.

I would have asked for someone to come help me but my husband was working and the boys were in Ottawa. I was alone. No one else around. In my mind, I felt like I just had to rest. Everything would be fine and I would recover.

This wasn’t quite like other experiences. It was tricky. I knew that. But I was still stubborn. As soon as I got into bed, I rested. And before I knew what was what, I had a wake-up shake. It was my husband.

I wanted to say I was fine just a little groggy but the words were not there. I felt lost. I felt exhausted. I told him I was just tired. I went back to sleep.

The next morning I woke up and I was trying to get going. I was sitting on the edge of the bed and my husband was there and I asked him if he was going to work. He said “Yes. But I just want to make sure you can drink the water.” i made a dramatic sigh and I tried to sip the water. I missed. “Fuck”. I sat up a little and I tried again. I missed again. “Shit.” I tried to clean up my face and I said “Are you happy?” He left the room.

In this time I rested and tried to think of what to do. The routine has me head down to the computer and spend time with a friend online. I’ll call that friend. I opened my phone which was much harder to do than usual – I video called – that was never done. I tried to think of a way to hang up but I couldn’t. I heard the friend on the other end pick it up and after a while they hung up. In the next step I don’t know if I called or if they called but I said “I’m having a stroke.”

That friend likely saved my life. They talked to me for a little while and then they hung up making me promise to go to the hospital.

I went down to the kitchen and my husband and I sat at the table. I remember the conversation clearly with him are we going to go?

Yes.

It’s now the next day, April 12, so any immediacy is over. By all rights I should be dead.

We spent the morning in the Smiths Falls Hospital where a CT scan revealed a brain bleed. From then we were just waiting for transport to Brockville Hospital. I slept. Kirk tried to as well.

By the nighttime, Kirk was sent home. He had called the boys again, I spoke to them to try to reassure them. And Kirk went home for a sleep. I was eventually taken to the Hospital in Brockville. End April 12. It’s now April 13, a Saturday. It’s never particularly productive to be in hospital over the weekend but I figured I was better off there than back at home.

Eventually the boys were home from their trip and I was settled in the Brockville Hospital where they came to see me. I’m sure they didn’t know what to expect. It was probably a horrific thing to have survived my first stroke as children – with three months away from home – and then to come back and not know what was waiting for them. It was likely a huge relief when they saw me up and talking to them (albeit slower than I usually do).

I managed a call to tell my friend I was okay. They were pretty freaked out and had a lot of questions – more than I could answer. I still imagine hearing me say “I’m having a stroke.” That phrase was all I could say. I think that is what I said, it’s what I meant to say. They made a few jokes to lighten the mood now that I was in the Hospital.

But I had one question: Why?

I had gone 13.5 years without another – I felt quite good. And now it was April 2024 and I was back in the hospital and I didn’t feel so good.

Now, with the benefit of retrospect, I can look back and say I had a lot of pressure. My mother died a year and a bit before my first stroke. This time my father was ill and declining. Dementia and Alzheimer’s had him in their grips. I was his primary caregiver. And now I couldn’t drive.

It was lucky he wasn’t able to conceive of time. He thought I’d just been there. And when I went back to see him (a month later), he still thought I’d just been. I never told him I had a stroke. It would have done no good; he was dying.

That was a hard few months. I gave my brother the reigns for Dad’s care until early June when I was able to take it back. I’m glad things worked out that way… because by July 15th he was gone.

brain injury, faith, frustration, june, patience, recover, recovery

Patience: A Virtue Worth Cultivating

In all likelihood, you, like me, have areas in your life that frustrate you or things to do that remain undone. I have a long list in that category.

When I worked full time at my career, I kept on top of my day’s work and very rarely had any unresolved things. Perhaps purging a filing cabinet, or seeing if I could get a new desk chair would be a medium long wait, but things got tackled and resolved very quickly. The nature of my work meant that most things that come across my desk have to get done right away except for planning large scale public events, which took longer and required more collaboration with many stakeholders.

Since my stroke and my resulting increased amount of daytime at our home, I’ve had to realize that my desired work pace is not very realistic.

First of all, I have new limitations. I struggle often with fatigue and now have to work in nap time to let my brain pause somewhere in the middle of the day. I also don’t have total control on the schedules of my husband and kids. The day I might choose for a project may wind up being a day that they were each planning different things to do or places to go.

I think this has been one of the top five challenges of my stroke and recovery. I am not sure if it’s more accurately a loss of productivity, a loss of control or if it’s a lack of patience. Either way, it’s such a challenge. I have to constantly remind myself of how fortunate I am and I have to also remind myself of the importance of the happiness of my loved ones.

In order to gain some objectivity, I really should take a look at the more fullsome picture of my career’s successful productivity. I have to acknowledge several key differences:

  1. I was paid for my skill and ability which made me all the more vigilant of what I did and how expedient I was.
  2. If I bullied my body and pressed myself through meals or through breaks or through day and night, my body could keep up (I now know that my stroke was related to this ridiculous pace but still, for 15 years it worked).
  3. I didn’t have to do everything at work. Someone else cleaned, took care of security, arranged printer toner replacements, ordered and distributed supplies, paid the utilities, monitored the media coverage, coordinated training and development, paid for the office space, kept the technology working, and I could go on and on. A functional work environment is a team where everyone has a clear definition of what they have to maintain … and they are paid for that part.
  4. My physical space was small. The cubicle and office I had was very small and I intentionally kept clutter to a minimum (having only an indoor plant and two photos). Clutter and visual distraction never worked well with my brain and I guess that’s the same today. In fact, that has worsened, so visual distraction needs to be kept under control for the sake of my productivity.
  5. My most fruitful hours were spent at the office. I didn’t expect myself to work all day and all night (although, yes, occasionally that was required). But I didn’t look over my work to do list at all hours of the day. When I left work, 90% of me left… a small portion of my brain always stayed alert for my Blackberry and other work stuff, but I considered my day done until my eyes opened the next day.

Clearly, those factors are significant. I am often at home for several days and I also eat and sleep and relax here, in my “work place.”  Here, I see those to do items over and over, in every room of the house. I think that is a big part of my sleep challenges. In addition, working on things alone without as many other parts done by a team is discouraging. My own slow and unpredictable pace is distractable, exhausts easily, and some days that were planned to be productive wind up being impossible because I lose two days to recover from a loud or exhausting event the day before.

It’s very difficult to see to do items move from one week to the next week over and over. It’s upsetting and humbling.

I wrote that last line and it made me sit and think for a minute. I am a person of faith. I am Catholic. I have been studying the diary of Saint Faustina and last week we were again focused on how important humility is.

I think humility and patience are twins. One cannot be patient if they are not humble and clearly you can’t be humble when you’re not patient. I thought I was fairly humble but obviously, with my struggle for patience, I am not.

I guess it’s time to work on my patience as an act of also working on my humility. Maybe this blog is the way I have been awakened to one of my own (many) shortcomings. Maybe that is why I felt very strongly that I needed to get back to my blog. It’s a bit awkward and embarrassing to come across one’s own shortcomings in such a public way but pride under a useless veil of privacy is of no help to anyone. I don’t know why we are so in love with making ourselves seem perfect to everyone – no one is perfect. No one.

So here I stand with a mission that I need to focus on my humility and patience. I strongly feel that I was called to write because someone someday will be helped when they read it even if the help is just kinship. Maybe that person is you. If so, nice to meet you – it’s especially nice to meet people who are as publicly  imperfect as me.

So with that important and wonderful revelation, I guess today’s blogging is done but the work of the rest of my life has just been named. I look forward to exploring it… but in the meantime I want to disclose that I worry there is a line between being patient – calmly waiting for something to be done – and being lethargic and apathetic. I suppose, as I walk along this journey, I will have to keep alert for those latter two possibilities because I don’t want them to comfortably ride on the coattails of otherwise beautiful gifts like patience and humility. Maybe you can help me keep an eye out for them too.

In the coming weeks, at some point I will begin to share with you the long list of things to get done and you can watch (and hopefully, cheer) for the accomplishments I/we achieve as time marches on.

I just have to remember to be good to my heart and my sense of self and I have to be even better to the hearts of those I love around me. Until then…

Be well,
Jen

hope, inspiration, june, optimism, writing

Morning’s Power

Every day comes with its own challenges and celebrations. Usually I wake up feeling ‘behind’ as if I already need to work extra hard to catch up. On days like that, waking up often starts me off with a feeling of dread or overwhelm.

If someone were to ask me how I feel when I wake up, I would in all honesty say that I feel happy and blessed with the arrival of every new day. In theory, that’s always true. I know that I am fortunate to have another day and that my day is highly unlikely to require me to haul drinking water from a village well, or cope with snipers after a curfew, or wonder how far I can stretch some rice to feed my family.

If we are not starving and are not afraid for our safety, it gives us time to make up new “emergencies” that are really not important at all.

Already, in the blessing of having been born in Canada in a middle class family and in a safe neighborhood, I’ve won the proverbial lottery. If you’re connected to the internet and have enough ‘free’ time to read this post, you’ve probably won the same lottery too.

I guess, before anything else clutters our mind, we should start by remembering that. Thinking with a global mindset usually defuses a lot of the otherwise upsetting challenges we are facing. It shakes some common sense into us about the fret over a cluttered room or the preoccupation over the ins and outs of daily chores and work/family balance and the number on our bathroom scale.

I watched a person on YouTube who has created a pretty successful brand for herself online. The work she does in that forum keeps her very busy and sometimes stressed. She popped into my mind as I was writing this post because she went to Africa about 6 or 8 months ago on a mission to empower girls and women. I think she went to Kenya. I am thinking about this because for a time after that trip, her mindset was profoundly changed. She took more time to consider the things that she let stress her out and when she would raise an issue, she immediately reminded herself of the far more oppressive problems facing the people she had met on her trip, she would say “first world problem” as a way of chastising herself and reminding us all of how blessed we are.

I really enjoyed seeing that transformation. In the months after my stroke while I was living in a couple of hospitals, my mind had a new way of seeing the world. I realized that there were thousands of people like me, in the hospital. I also realized that the things that used to preoccupy me really weren’t the things that matter the most in life. It doesn’t matter if I managed to repaint my front door as much as I might let it dominate my thoughts. It doesn’t matter if I managed to see a friend for a coffee this week or not because the true friends won’t use it against me and we will be able to pick up where we left off without any worry about drama.

Anything that can’t survive real life doesn’t deserve to be part of my life anyway. A friendship that takes a ton of effort to maintain and hold drama at bay is not a friendship worth the investment. A circle of friends who make you feel ashamed of having them over for a meeting or coffee because you’ve fallen behind on some housework are not the people you need to surround yourself with. And the chores that keep getting postponed to the next day because more important things take up your time don’t merit the self-imposed berating that you punish yourself with.

Our perspective gets screwed up when we already have the basics of what we need. If we are not starving and are not afraid for our safety it gives us time to make up new “emergencies” that are really not important at all.

I think it’s useful, now and then, to check what’s eating at us and look at how important it is in the grand scheme of things.

I use a bullet journal method of organizing myself which allows me to keep running lists of things I need to take care of or whatever pops into my mind. It’s amazing how granular my preoccupations can become. I can get so picky and so deep into the weeds of life that I forget that the important thing in life is to just keep swimming (as Dory would say).

I woke up today at 5 am and I took the early morning minutes to first start off by saying thank you to God for the opportunity of this day. I then decided to focus on the fact that today is going to be a good day. I decided that I really wanted to get my Monday blog post done and then I might tackle a few more list tasks but that today would be a good day whether I got one or twenty jobs done.

With that mental conversation, my approach to the day totally changed into a victory even from the start line. It made me realize how much “failure” or “success” happens between our ears and it also made me realize the power of how you start your day. Mornings are powerful… even if your morning starts after noon. Take hold of the first few minutes of your day and wrap your arms around them and give them a big kiss. Treat the morning the way you want the day to treat you – with joy and happiness and optimism. Win the race even before your first step.

Be well,

Jen