Tears of inadequacy

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...

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..

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/

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 :)

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.

Blessed

After a much needed two-week holiday with my whole family in Melbourne, I have much to thank the Lord for. The beauty of creation was something that struck me when traveling about places. Also, the very fact that I was able to make the trip when 2 out of 3 surgeons had suggested I would be taking risks delaying my surgery.

On the last night of my holiday, it ended with a bang (literally) as we stayed on for the fireworks display at the Royal Melbourne Show. Wide-eyed, I chose to just stay in the moment and capture the experience with only my eyes, dazzled by the beautiful fireworks that were synchronized to music. A few tears rolled down as I whispered "thank you" to God for allowing me this holiday.

Mom today sang this hymn as she too remembered the wondrous scenery we had seen.. And I would like to share it. It reminds me that God's love is so much more than everything that He has created.

The Love of God is greater far
Than tongue or pen can ever tell
It goes beyond the highest star
And reaches to the lowest hell
The guilty pair, bowed down with care
God gave His Son to win
His erring child He reconciled
And pardoned from his sin

O love of God, how rich and pure
How measureless and strong
It shall forevermore endure
The saints' and angels' song

When years of time shall pass away
And earthly thrones and kingdoms fall
When men, who here refuse to pray
On rocks and hills and mountains call
God's love so sure, shall still endure
All measureless and strong
Redeeming grace to Adam's race
The saints' and angels' song

Could we with ink the ocean fill
And were the skies of parchment made
Were every stalk on earth a quill
And every man a scribe by trade
To write the love of God above
Would drain the ocean dry
Nor could the scroll contain the whole
Though stretched from sky to sky

Jehovah Jireh, my Provider

My heart rejoices today as my workplace has made the rare exception to approve my hospitalization leave while I am seeking treatment in Malaysia! It was deemed near impossible to receive this approval due to policies but the Lord has provided for my needs yet again!

Also, as a friend caught up with me in regards to me tying up loose ends (finding a tenant to replace me), I found out that her father is a real estate agent! Without a doubt, she is truly God-sent! Even in the midst of the stress, I am grateful for all these blessings that God has granted me.

I'm so thankful for all the love and support I've received from everyone, it has filled my heart with joy. I honestly feel so loved. It helps to know that people are rallying for me at this time... I am deeply touched.

Another song came to mind today as I reflected on the blessings that God has granted me even at this difficult time.. Truly I want to praise the Lord for His Love and Providence. I am so thankful to be His child. The Lord never fails to provide me with what I need...

LOVE YOU SO MUCH

Hear these praises from a grateful heart
Each time I think of You, the praises start
Love You so much, Jesus
Love You so much

Lord I love You, my soul sings
In Your presence, carried on Your wings
Love You so much, Jesus
Love You so much

How my soul longs for You
Longs to worship You forever
In Your power and majesty
Lift my hands, lift my heart
Lift my voice towards the heavens
For You are my sun and shield
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

While listening to this song, this Bible verse came to mind...

"Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer". Romans 12: 11-12

Thank you, Lord!

Hearts courageous

As days fall away, I realize my thoughts have very much been on my impending surgeries, and the fear of the unknown sometimes dominate.

Sometimes I wonder how I would be able to persevere through this major trial... 

Sometimes I grieve, feeling that I may not be able to do things I love - being adventurous, doing all kinds of adrenaline pumping activities...

Sometimes I feel afraid of losing my abilities. Something that I've taken for granted for years... 

Since returning to Singapore after my brain scan in Malaysia, I've been on the go. Sorting out my work issues, packing my belongings and trying to find a tenant to replace me, preparing myself to return to Malaysia for good... the list is long. More often than not, I feel overwhelmed by all these things that I have to do. At this point, I have 2 weeks left in Singapore and my to-do list has not exactly shrunk. Unfortunately, these stressors don't help with my disease. With every strange pain I feel, with every increasing frequency and intensity of my headaches/migraines, it makes me realize my weakness, my mortality. The helplessness sometimes creeps in.

I took a stroll today at a nearby reservoir... It wasn't too hot, the scenery was beautiful and there was a breeze throughout. To me, the breeze was a reminder of God's presence. I may not be able to see Him, but I know He is there. That's when my conversation with God began.

"Father, can I really do this? I'm so afraid..."

"I don't know what is going to happen. It feels like my life is going to change after October 11..."

"What am I going to do? Will my life be at a standstill..?" 

As I asked these questions... I saw the rippling waters and the beautiful greenery, felt the cooling breeze... and it made me realize that I was enjoying God's creation. He who created the world... also created me (fearfully and wonderfully). God makes no mistake, and allowing this trial in my life is no mistake.

While in the bus leaving the reservoir, I found a card made by Kharenee for my birthday this year. To be honest, I had forgotten about it (sorry Kharenee). Reading her message to me was like a breath of fresh air. It was an encouragement at a time when I've been feeling drained and insecure. She also reminded me of our Girls' Camp theme song several years back. I remembered reflecting with several girls back then during their morning devotion to personalize the lyrics, to really take the stand to cling on to God no matter what happens in life, and not allow ourselves to just sing for the sake of singing. 

Today, I shall make this song my own...

HEARTS COURAGEOUS

Give me ears to hear that still, small voice, 
And give me lips, forever willing to rejoice. 
And may my eyes be lit with wisdom, 
May I know the path that's true, 
And I'll march with a heart courageous after You. 

Chorus:
I'm marching on with a heart courageous, 
I'll follow anywhere You want me to. 
And should You lead me where the battle rages, 
Let me march with a heart courageous, after You. 

And when sorrow dims the light along my way, 
Help me to see each time of darkness through eyes of faith, 
A time for hope, a time for courage, 
Knowing You will lead me through. 
And I'll march with a heart courageous, after You.

Thank You, Lord for the reminder that You are always with me, no matter what the circumstance. Thank You for assuring and comforting me in the midst of my fear.

Let me march with a heart courageous, after You.