Life and challenges after major stroke

A common reaction that I receive when I tell new friends that I have suffered multiple strokes is one of surprise. Indeed, outwardly I look pretty "normal" and while I am very grateful for a great recovery, this becomes a private burden that I have to bear because inwardly it is crystal clear that I suffer from several deficits which greatly impact my life. 


I feel that it is necessary for me to paint a more balanced and honest picture of my healing in addition to the positivity that I have extolled umpteen times. Yes, these were instrumental in keeping me going but I also like to speak to the darkness that was equally important.


It has taken me this long to address it because it is hard to revisit those painful moments. However, I like to take the first step forward to tell you another part of my story.

My original handwritting before the major stroke.
My original handwritting before the major stroke.

I kept a journal while undergoing my treatment and this was an entry I made on September 17, 2007, the morning of my second brain bypass. The bible verses provided me comfort and strength to face the unknown. Little did I know my life was going to change drastically.


Awoke in the ICU after the operation, I was relieved to have survive a delicate surgery.  However I noticed that something was wrong with my right visual field because even though I knew someone was standing there I could not see her unless I turned my head.


This condition is known as Homonymous Hemianopia. I call it "a world where there is no right turn" because as far as I am concern, when I am looking straight the right visual field doesn't exist for me. Consequently I ended up knocking myself into things, wall and people frequently especially in the early days. It was very painful, literally and metaphorically.


Needless to say, given that I won't be able to see a huge truck right next to me on the road (as explained by an Opthamologist), I am not permitted to drive. This proves to be a huge loss especially when we relocated to the United States where being able to drive is critical and I have always enjoyed driving. I addition, my ability in gauging depth is compromised as well since I lose my stereo vision. Being in a new place is often unnerving because I am also slow in processing the visual information.

In this picture, I like to illustrate what it's like for me when I commute on trains. Can you see the couple on my right? When I was seated and looking ahead, I could see them in the reflection but not in my visual field even though I could hear and feel their presence.


This presents challenges as you can imagine. Once I was accused by a driver in the carpark for being inconsiderate because I had opened my car door and hit his door gently. In the first place I couldn't even see his car because it was parked on my right! I was taken aback when he rejected my apology and called me rude. It hurt and tears flowed despite my protest. I wanted to scream "I didn't see your car or you" but who would believe me since I appear perfectly normal.


I feel the same tinge of sadness whenever I bump or knock into someone. People often assume that I am just an inconsiderate and rude person who does not bother to give way. Being misunderstood sucks. Nevertheless, the upside of this experience allows me to have compassion and not jump to conclusion and judge too quickly because sometimes you truly do not know what is the truth.


My handwritting few days after the stroke
My handwritting few days after the stroke

This was my handwriting post stroke, in the early days. I didn't know that I had loss my ability to write/read/type because these are not things you do immediately after you regain consciousness. I was shocked to see that I struggled to write and I couldn't really spell too.


Fortunately, I was informed that with practice and time I could reclaim most of the cognitive abilities. And I did within 2 months, the result of my persistence and perseverance.


The reason why I wrote the bed number was because I also lose my working memory. Up till today I find it hard to remember facts and numbers even though I have no trouble remembering stories that I have read or heard. It does interfere in my conversations with others when I keep punctuate my answers with "I can't remember or I don't know the name." It must have seemed puzzling to others that a young person like me has such terrible memory.


Some people found it baffling that it bothered me that my handwritting or signature is no longer the same. Shouldn't I be grateful that I survived? I should look at the big picture right?


Well, here is the reason why it matters; it is a tangible reminder that I am not the same person and it feels like I am not "normal". Thus, it is imperative that I grieve for the loss. It doesn't negate the fact that I am grateful for my current life and what I have achieved.


This is what I have learned. The way we deal with our loss shapes our capacity to be present to life more than anything else. Too often we shut down and move on as quickly as we can manage. We protect ourselves from loss by distancing ourselves from life. But it doesn't work that way. Grieving is important because it enables us to go forward after the loss and healing emerges from it.


If you're suffering from a loss in any form right now, I urge you to take the time to grieve and practice self-compassion. Yes, it is a messy and unsettling process but its reward is abundant as it enables you to inhabit life fully.


Thank you for reading. Feel free to share this post with someone who might need it.