Category Archives: brain injury

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.

bed feetSince 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.

losing a friendBut 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.

Lazy Hazy Days

First of all I apologize for it having taken me so long to write. Summer is a busy time every year for families with young children and indeed my summer is no exception.

The boys have been enjoying the warm weather and have had a couple stints at day camps. We have also had some birthday parties to attend and have enjoyed time near the water away from the city.

But not all of the summer has been dreamy. I started this blog to keep you up to speed about the journey of a woman recovering from a massive brain hemmorrhage and surgery. My health is a work in progress. I have been able to continue to challenge myself and see people and experience more and more visual and audio stimulus. I still feel fearful and overwhelmed in busy environments and my system still responds with tears and if I am overwhelmed my mind seems to try to make me sleep.

On Sunday, July 24, I had just finished a weekend with a busy social calendar. On the Friday we had my brother and his fiancée to dinner and Saturday we drove out of town to attend our niece and nephew’s birthday party (a modest family event on both occasions but still alot for me). On Sunday we drove home and that night I was on the computer and noticed that I was finding it more difficult to read.

I tried to work through it and hope that I could recover the ability to read but instead it got more difficult to read and then I was not able to type… I made eye contact with my husband across the house. After this I have no memory until I ‘woke up’ with about 6 uniformed men around me asking me questions and talking in hushed voices with my husband.

I am told that my husband heard a crash in the room where my ‘office’ is and he came in and found me slumped off my chair and having a seizure. He stayed with me until the seizure stopped and then called 911. When the emergency responders arrived I am told they asked me questions like what my name is and I answered with statements like ‘I have red pajamas.’

I was taken by ambulance to the Civic Hospital where I had spent a couple months last Fall. They took me quite quickly into the Emergency Room and they did blood work and a CT scan.

What can I say? I guess my brain is not quite fixed.

This is the first seizure since the actual stroke last September so I was not expecting to live through this again. That said, I did have a TIA experience in February as well.

The Wednesday before the seizure I had had a MRI in preparation for an October appointment with my Neurologist. I believe that I had mentioned to you that the clot on the left drainage vein from my brain was still there in the March MRI. Well, the MRI on Wednesday was to check again – although my Neurologist did not expect further natural change since the clot would (should?) have already left if it was going to correct itself.

Because of my trip to the Emergency Room with my seizure, they told me about the results of my Wednesday MRI. The clot remains. Not good news but obviously I can live with it (smiles weakly).

They performed a CT scan to see if there was new bleeding in my brain as a cause for my seizure and there was not. That IS good news so hooray!

My blood work revealed that I had an extremely low level of Phosphate. They did say that it can cause seizures when it is as low as my Phosphate level was… and they asked if I had been eating because lack of food can cause the Phosphate to plummet. I had had a weekend with a very varied and fullsome diet so that was not the reason. Anyway, they put me on 4 hrs of IV Phosphate as well as requiring me to take some Rx Phosphate tablets that dissolve in water.

My husband was asked to take Monday off of work to stay with me so that I would not be left alone. He and I had both been up all night so the rest during the day on Monday was appreciated.

I had been feeling ‘unwell’ that weekend which I attributed to my busy schedule. What might be no big deal for most people was very tough for me. Even driving to the lake on Sat and home on Sun was alot for me because there is a lot of visual and audio stimuli on that trip.

Anyway, I wanted to take this opportunity to tell you about the new development in my health. It hasn’t all be bad news by the way… I have been planning and preparing for my brother’s Wedding Day!!! He and his lovely fiancee are getting married – this Saturday, August 6.

I can’t wait for the day to come – our family could use the reason to get together and party.

Will give you more frequent updates as time goes by this week. Thanks for your patience and warm wishes.

Be well,

Jen

Wounds that heal

In case I forget how far I have come…

This is from when i was well enough to have asked for my BlackBerry and to have remembered how to use it…

These were in October 2010. The bleeding stopped about a week ago (April 2011).

IMG00048 IMG00051

I still have massive scars in my hair – sometimes I wish they weren’t so well hidden. I wish they were across my face so that people couldn’t forget that I am recovering from a brain hemorrhage and a very immense brain surgery. But I know that it’s a blessing not to be left with that too (but imagine having high expectations of a person in a wheelchair… we might change our expectations then I think).
Since then I have had one experience they call a TIA (Transient Ischemic Attack) which is likely a clot passing and briefly stopping in a vein/artery in the brain. It lasted about an hour with only a couple of the famous five warning signs (I had trouble speaking and understanding). It was scary but it passed – this was late Feb.
I have tried not to talk about it and not to dwell on it but it’s part of who I am so I am sharing that with you.
If you are wondering about why I never call you – please don’t forget that I am disabled (particularly with regard to sound and with visual stimulation).
I guess the choices are to love me anyway and be quiet or to be insulted and leave.
Either way I understand and I will still love you.
Be well,
Jen
P.S. This entry was called “wounds that heal” because there are some that never entirely heal.