It's been more than a week since I shed tears due to the pain at my incision area. Today, tears flowed because someone I have a lot of respect for said that she wasn't keen for me to join a meeting during the weekend as she had "serious doubts that [i'm] fit to participate in the group process".
That sentence really stung. I tried to reflect amidst tears - why that bugged me so much. To be honest, even writing this post, my face is wet with tears...
I realize that statement felt like a dismissal, and it triggered my fears. The fear that after surgery, I would be considered weak. Unfit. Inadequate. I guess it's my fault too. I've always appeared strong. Or at least tried very hard to so people wouldn't worry. Not to mention I would feel better about myself too.
Sure, maybe this was said out of concern. But it still hit me hard. It felt like a slap on my face. And I wonder if this could be a lasting problem - people looking at me differently because I have this brain disease and that I won't be at par with my peers. It does make me feel very vulnerable.
Maybe it's my pride. Maybe it's my fear that I can't be the psychologist I want to be. Maybe I'm afraid that my life will be at a standstill. Maybe I'm trying so hard to beat this disease, to be brave and keep upbeat, to prove to myself I'm still ok. That sentence sparked off what I have been feeling but had tried to suppress. I'm supposedly at the prime of my life, but here I am... Under house arrest. Not allowed to drive for 6 weeks. I even need help to clean my head cause I can't see where my incision is due to my poor eyesight. And I will be out of action for the next six months, hopefully not any longer if there aren't any complications.
I realize... undergoing surgery isn't the most difficult part. Because I just laid there in the OT. I don't deny the awful physical pain I went through, having my skull cracked open and my scalp stitched up. But it's the consequences of surgery that I have to process, the emotional and psychological pain I have to battle. Being dependent on others for simple chores. The grief that there are some things that I have to erase from my bucket list just because my body won't be able to handle it anymore. The fear of potential seizure attacks or stroke. Having to change lifestyles.
"Serious doubts".
Sigh... That really hurts... Doesn't help that I feel so alone...
Lord, please comfort me...
Wednesday, 29 October 2014
Saturday, 18 October 2014
Well... Whad'ya know
In a blink of an eye, it's now a week since my first surgery. So much for counting down the days to my surgery. Haha..
Well... It's been quite a ride to get here. With the surgery being prolonged for 3 more hours as my first recipient vessel was considered too fragile by my surgeon. Hence, he redid the surgery, looking for another suitable vessel to graft.
I've been through much pain this week. It's definitely no fun having your skull cracked open, tubes inserted into your body, injected from time to time with painkillers that you had negative reactions to - causing you to feel lifeless, noxious, the list goes on.
But I've also seen the love my family, my bestfriend and other friends extended to me. Which has really kept me going..
Anyway, It's been a week. 7 days. I still struggle with the pain at the incision area at times. And just the wee hours of the morning today, I was woken up by the numbing and tingling pain on my right arm. Does this mean the blood circulation at my right brain has improved, and my affected left brain now is giving me problems? I don't know... But I pray the pain will go away..
Well... It's been quite a ride to get here. With the surgery being prolonged for 3 more hours as my first recipient vessel was considered too fragile by my surgeon. Hence, he redid the surgery, looking for another suitable vessel to graft.
I've been through much pain this week. It's definitely no fun having your skull cracked open, tubes inserted into your body, injected from time to time with painkillers that you had negative reactions to - causing you to feel lifeless, noxious, the list goes on.
But I've also seen the love my family, my bestfriend and other friends extended to me. Which has really kept me going..
Anyway, It's been a week. 7 days. I still struggle with the pain at the incision area at times. And just the wee hours of the morning today, I was woken up by the numbing and tingling pain on my right arm. Does this mean the blood circulation at my right brain has improved, and my affected left brain now is giving me problems? I don't know... But I pray the pain will go away..
Thursday, 9 October 2014
An Inspiration and Vision
Just to give a little back story, I had a discussion with my surgeon last week about the impending surgery and we both agreed that I will shave my head bald for it.
That's when the aha-moment came.
Yes, I am shaving my head bald for my own surgery, but I was inspired to do something good as I remove my hair in its entirety. After much reflection and discussion with several close friends, I realized that I wanted to do something more than just a one-off donation. I wanted to establish a FUND. (i'm ambitious, i know).
What fund?
I would like to set up a fund for marginalized people who are diagnosed with longterm illness so that they can seek psychological assistance, to learn to cope with their illness. I've also identified several mental health professionals who are keen to give discounted rates to these individuals as well.
Why?
This has been my personal journey. I've been diagnosed with TWO neurological conditions at two different times - one which is permanent in 2011 (Multifocal Lacunar Infarcts) and the other, rare and progressive, in 2014 (Moyamoya Disease). I remembered struggling at those times, trying to understand what the diagnoses meant and learning to accept how my diagnoses had been affecting me and how it will affect my future. Honestly, I'm still in the process of understanding and learning.
Apart from having a strong support system, what helped me was my faith as a Christian, and my vocation as a Clinical Psychologist (that includes having close friends who are in the mental health field). These were the times I was privileged to play both roles - as a mental health professional AND a patient.
I realize how important it is to have people to support me psychologically, emotionally, mentally, spiritually, physiologically. And with my background as a Clinical Psychologist, there were times when I was able to identify my emotions and my struggles due to my training. I understood and allowed myself to grieve for what I could possibly lose due to my disease. Believe me, it wasn't easy. Being a Clinical Psychologist did not mean that I suffered no pain or grief, but I was able to tap into my training to help me cope better.
Hence, with this personal experience, I would like to share this privilege that I've had.
Wait, please take note!
As I only had my aha-moment a week before surgery (i'm going into the operating theatre on Saturday, 11th), I was unable to formally set up any funds but I am in the midst of straightening it out. I have not even settled on the name of the fund yet, but I have several ideas. I hope to continue this preparation after my first surgery. I want to do this legitimately as my vision is for this fund to continue longterm as well.
I will continue to post updates in my blog in regards to the development of the fund. I will also be collaborating with another person who has helped me cope psychologically and emotionally - we plan to write more articles on how to cope and flourish in the midst of pain.
This is a post she had written based on her own journey with Moyamoya syndrome.
http://www.winifredling.com/2011/10/03/how-to-deal-with-your-diagnosis/
I will continue to post updates in my blog in regards to the development of the fund. I will also be collaborating with another person who has helped me cope psychologically and emotionally - we plan to write more articles on how to cope and flourish in the midst of pain.
This is a post she had written based on her own journey with Moyamoya syndrome.
http://www.winifredling.com/2011/10/03/how-to-deal-with-your-diagnosis/
Today is 10/10/14, it is also World Mental Health Day. I have just shaved my hair today in preparation for my surgery. My shaven head symbolizes my commitment to set up this fund, and I hope my "baldness", my personal journey and vision will also resonate with you and move you, my dear reader, to spread the word around and also to donate generously after the fund is set up, to provide psychological support to others who are also going through the difficult times of having a longterm illness.
Before
After :)
Thursday, 2 October 2014
ponderings
It's about a week left before I get myself admitted to hospital for my surgery. Time sure flies. Still, its strange, realizing that I'm seated in my own KL room, and I no longer reside in Singapore anymore. things just happened so quickly, I have not processed what's been going on.
one thing I observed, talking to friends about my upcoming surgery... is how people tend say, "you'll be ok/alright". It's very interesting because I feel sometimes that phrase was meant to comfort them. Sometimes I find myself comforting them that I will be alright because they seem to be affected. To be honest, it isn't much of a comfort for me, because nobody can actually tell if things will go smoothly during surgery. Not even my surgeon who will be working on my brain.
I also notice how people would shush me whenever I try to make arrangements or state that I may suffer a stroke during surgery. I know it doesn't sound pleasant, but it's a very real situation. Maybe it's me, I'd rather set realistic expectations that a stroke may or may not happen, than just falsely believe that everything will be perfect.
But something I want to remind myself is that through this journey, I really got to know who my real friends were. If not for this disease, I would probably not have realized how loved I am. I am touched by a dear dear friend who dumped her own holiday to travel to singapore to help me pack while i was getting ready to shift back to KL. I am touched by friends who have been praying for me, and telling me that I am in their thoughts. When I was keen to start a new project, I had friends who encouraged me and gave me ideas. I have people volunteering to be part of the project. I'm so amazed by God's providence. What the project is will be a new post. but right now, I just want to dwell in the moment of being thankful for the people around me, amidst my observations.
one thing I observed, talking to friends about my upcoming surgery... is how people tend say, "you'll be ok/alright". It's very interesting because I feel sometimes that phrase was meant to comfort them. Sometimes I find myself comforting them that I will be alright because they seem to be affected. To be honest, it isn't much of a comfort for me, because nobody can actually tell if things will go smoothly during surgery. Not even my surgeon who will be working on my brain.
I also notice how people would shush me whenever I try to make arrangements or state that I may suffer a stroke during surgery. I know it doesn't sound pleasant, but it's a very real situation. Maybe it's me, I'd rather set realistic expectations that a stroke may or may not happen, than just falsely believe that everything will be perfect.
But something I want to remind myself is that through this journey, I really got to know who my real friends were. If not for this disease, I would probably not have realized how loved I am. I am touched by a dear dear friend who dumped her own holiday to travel to singapore to help me pack while i was getting ready to shift back to KL. I am touched by friends who have been praying for me, and telling me that I am in their thoughts. When I was keen to start a new project, I had friends who encouraged me and gave me ideas. I have people volunteering to be part of the project. I'm so amazed by God's providence. What the project is will be a new post. but right now, I just want to dwell in the moment of being thankful for the people around me, amidst my observations.