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.

 

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Comments: 4
  • #1

    BILLY (Thursday, 12 April 2012 09:35)

    ‎''BILLY'S 50 LEARNED LESSONS''

    To celebrate growing older, I once wrote the 50 lessons life taught me.

    It is the most-requested column I've ever written. My odometer rolls over to 50 this week, so here's an update:

    1. Life isn't fair, but it's still good.

    2. When in doubt, just take the next small step.

    3. Life is too short to waste time hating anyone.

    4. Don't take yourself so seriously. No one else does.

    5. Pay off your credit cards every month.

    6. You don't have to win every argument. Agree to disagree.

    7. Cry with someone. It's more healing than crying alone.

    8. It's OK to get angry with God. He can take it.

    9. Save for retirement starting with your first paycheck.

    10. When it comes to chocolate, resistance is futile.

    11. Make peace with your past so it won't screw up the present.

    12. It's OK to let your children see you cry.

    13. Don't compare your life to others'. You have no idea what their journey is all about.

    14. If a relationship has to be a secret, you shouldn't be in it.

    15. Everything can change in the blink of an eye. But don't worry; God never blinks.

    16. Life is too short for long pity parties. Get busy living, or get busy dying.

    17. You can get through anything if you stay put in today.

    18. A writer writes. If you want to be a writer, write.

    19. It's never too late to have a happy childhood. But the second one is up to you and no one else.

    20. When it comes to going after what you love in life, don't take no for an answer.

    21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.

    22. Overprepare, then go with the flow.

    23. Be eccentric now. Don't wait for old age to wear purple.

    24. The most important sex organ is the brain.

    25. No one is in charge of your happiness except you.

    26. Frame every so-called disaster with these words: "In five years, will this matter?"

    27. Always choose life.

    28. Forgive everyone everything.

    29. What other people think of you is none of your business.

    30. Time heals almost everything. Give time time.

    31. However good or bad a situation is, it will change.

    32. Your job won't take care of you when you are sick. Your friends will. Stay in touch.

    33. Believe in miracles.

    34. God loves you because of who God is, not because of anything you did or didn't do.

    35. Whatever doesn't kill you really does make you stronger.

    36. Growing old beats the alternative - dying young.

    37. Your children get only one childhood. Make it memorable.

    38. Read the Psalms. They cover every human emotion.

    39. Get outside every day. Miracles are waiting everywhere.

    40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

    41. Don't audit life. Show up and make the most of it now.

    42. Get rid of anything that isn't useful, beautiful or joyful.

    43. All that truly matters in the end is that you loved.

    44. Envy is a waste of time. You already have all you need.

    45. The best is yet to come.

    46. No matter how you feel, get up, dress up and show up.

    47. Take a deep breath. It calms the mind.

    48. If you don't ask, you don't get.

    49. Yield.

    50. Life isn't tied with a bow, but it's still a gift.

    BILLY K
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  • #2

    winifredling (Friday, 13 April 2012 14:10)

    Hey Billy, thanks for sharing your lessons and Happy Birthday! 50 is a huge milestone and I hope you have a great celebration.
    I agree with many of your lessons. I particularly like #18: A writer writes. If you want to be a writer, write.

  • #3

    Billy (Saturday, 14 April 2012 11:06)

    ''WHEN WEWERE BORN,WE DIDN'T COME WITH A OWNER'S MANUAL,THESE GUIDELINES MAKES OUR LIFE A LITTLE BETTER''

    1.You will receive a body. You may like it or hate it, but it's the only thing you are sure to keep for the rest of your life.
    2.You will learn lessons. You are enrolled in a full-time informal school called "Life on Planet Earth." Every person or incident is the Universal Teacher.
    3.There are no mistakes, only lessons. Growth is a process of experimentation. "Failures" are as much a part of the process as "success."
    4.A lesson is repeated until learned. It is presented to you in various forms until you learn it -- then you can go on to the next lesson.
    5.If you don't learn easy lessons, they get harder. External problems are a precise reflection of your internal state. When you clear inner obstructions, your outside world changes. Pain is how the universe gets your attention.
    6.You will know you've learned a lesson when your actions change. Wisdom is practice. A little of something is better than a lot of nothing.
    7."There" is no better than "here." When your "there" becomes a "here" you will simply obtain another "there" that again looks better than "here."
    8.Others are only mirrors of you. You cannot love or hate something about another unless it reflects something you love or hate in yourself.
    9.Your life is up to you. Life provides the canvas; you do the painting. Take charge of your life --or someone else will.
    10.You always get what you want. Your subconscious rightfully determines what energies, experiences, and people you attract -- therefore, the only foolproof way to know what you want is to see what you have. There are no victims, only students.
    11.There is no right or wrong, but there are consequences. Moralizing doesn't help. Judgments only hold the patterns in place. Just do your best.
    12.Your answers lie inside you. Children need guidance from others; as we mature, we trust our hearts, where the Laws of Spirit are written. You know more than you have heard or read or been told. All you need to do is to look, listen, and trust.
    13.You will forget all this.
    14.You can remember any time you wish.

  • #4

    BILLY (Monday, 16 April 2012 18:41)

    ''LETTING GO,IT'S A BEGINNING OF A NEW LIFE''

    ''In the end these things matter most:
    How well did you love?
    How fully did you love?
    How deeply did you learn to let go? '' The Buddha.

    To let go isn't to forget, not to think about, or ignore. It doesn't
    leave feelings of anger, jealousy, or regret. Letting go isn't about
    winning or losing.

    It's not about pride and it's not about how you
    appear, and it's not obsessing or dwelling on the past.

    Letting go
    isn't blocking memories or thinking sad thoughts, and it doesn't leave
    emptiness, hurt, or sadness.

    It's not about giving in or giving up.
    Letting go isn't about loss and it's not about defeat.

    To let go is
    to cherish the memories, but to overcome and move on.

    It is having
    an open mind and confidence in the future.

    Letting go is learning
    and experiencing and growing.

    To let go is to be thankful for the
    experiences that made you laugh, made you cry, and made you grow.


    It's about all that you have, all that you had, and all that you will
    soon gain.

    Letting go is having the courage to accept change,
    and the strength to keep moving.

    Letting go is growing up. It is
    realizing that the heart can sometimes be the most potent remedy.


    To let go is to open a door, and to clear a path and set yourself free.

    BILLY JI