Friday, 7 November 2014

Grief

It is 2.30am and here I am writing another post.

I know it is ironic since my last entry was about rest, but felt like I needed to get this off my chest (and mind).

I think my grieving is settling in. I missed two good friends' wedding/engagement dinners last week. I was pretty discouraged for not being able to participate in other events as well. I feel left out. Not being able to share special events with loved ones or just being involved with things I love... it's pretty hard for me.

To top it off, I just had a chat with a dear friend who had asked if I could be her bridesmaid for her wedding next year which will be held in New Zealand. I was crushed. I don't know if I can even make it to her wedding since my next surgery will probably be scheduled sometime in January. Her wedding is in March. That isn't a lot of time for me to recuperate or to be fit to fly. Plus, i'm already giving myself the benefit that I won't suffer a stroke after my 2nd surgery. Actually.. my friend's engagement that I missed, I would most likely miss her wedding too, since it would be less than a month after my surgery.

I feel... limited. Honestly, I have a battle in my head. My brain is telling me that I should be thankful I survived my first surgery with little complications. But on the other hand, my heart is hurting. Strangely enough, after writing that my heart was hurting, I felt stabs on my head from my incision wound. Looks like both head and heart is in pain.

I guess why this hurts so much is that I am unable to share special experiences. Sometimes it doesn't help that my parents tell me to get back to "normal". I know these just seem to be one off things but I do grieve that I am sort of incapacitated at the moment. I think that's what's difficult. I look healthy, I seem to look like I can do whatever I used to do... but... I can't. To know I can't just be as carefree, sucks.

Sigh... Lord, You know my grieving heart. Please comfort me...

Rest

Surprisingly... rest isn't easy to do.

I think my family would contest this... saying that I'm resting too much now. Sure, I may not seem to be doing a lot... but somehow I feel "unrested". I realize my thoughts are always on how I can be "normal" again.

Interestingly enough, this topic of rest has come up several times in conversations with different friends. Friends who know me to be the workaholic/constantly-on-the-go. They suggest that maybe this Time has been presented to me so that I can recuperate, rejuvenate and reflect. Something like taking a (forced, mind you) sabbatical.

I always thought that "rest" is a passive action. But it has become clear to me now that I have to make an active decision to rest. Honestly, I associate rest with sleep... and that was pretty much it. In fact, when my accountability partner, Ee Ling, asked me how I was going to rest, I couldn't give her an answer.

Conclusion: I don't know how to rest! *gasp*

That to me was pretty telling about myself. I've been going on and on like some energizer bunny that I have no clue how to recharge.

A friend of mine shared with me that she had a dry work season for 3 months, but she used that time to reflect and to create awareness about herself. So it really is doable.

But I think what really struck me was why it is so difficult for me to actively rest. I think more often than not, I find my worth through things that I do. Ee Ling, spoke to me about the law God had given to the Jews in regards to observing the Sabbath year and Jubilee.

Leviticus 25 New International Version (NIV)

The Sabbath Year

25 The Lord said to Moses at Mount Sinai, “Speak to the Israelites and say to them: ‘When you enter the land I am going to give you, the land itself must observe a sabbath to the Lord. For six years sow your fields, and for six years prune your vineyards and gather their crops. But in the seventh year the land is to have a year of sabbath rest, a sabbath to the Lord. Do not sow your fields or prune your vineyards. Do not reap what grows of itself or harvest the grapes of your untended vines. The land is to have a year of rest. Whatever the land yields during the sabbath year will be food for you—for yourself, your male and female servants, and the hired worker and temporary resident who live among you, as well as for your livestock and the wild animals in your land. Whatever the land produces may be eaten.

The Year of Jubilee

“‘Count off seven sabbath years—seven times seven years—so that the seven sabbath years amount to a period of forty-nine years. Then have the trumpet sounded everywhere on the tenth day of the seventh month; on the Day of Atonement sound the trumpet throughout your land. 10 Consecrate the fiftieth year and proclaim liberty throughout the land to all its inhabitants. It shall be a jubilee for you; each of you is to return to your family property and to your own clan. 11 The fiftieth year shall be a jubilee for you; do not sow and do not reap what grows of itself or harvest the untended vines.12 For it is a jubilee and is to be holy for you; eat only what is taken directly from the fields.
13 “‘In this Year of Jubilee everyone is to return to their own property.
14 “‘If you sell land to any of your own people or buy land from them, do not take advantage of each other. 15 You are to buy from your own people on the basis of the number of years since the Jubilee. And they are to sell to you on the basis of the number of years left for harvesting crops. 16 When the years are many, you are to increase the price, and when the years are few, you are to decrease the price, because what is really being sold to you is the number of crops. 17 Do not take advantage of each other, but fear your God. I am the Lord your God.
18 “‘Follow my decrees and be careful to obey my laws, and you will live safely in the land.19 Then the land will yield its fruit, and you will eat your fill and live there in safety. 20 You may ask, “What will we eat in the seventh year if we do not plant or harvest our crops?”21 I will send you such a blessing in the sixth year that the land will yield enough for three years. 22 While you plant during the eighth year, you will eat from the old crop and will continue to eat from it until the harvest of the ninth year comes in.
23 “‘The land must not be sold permanently, because the land is mine and you reside in my land as foreigners and strangers. 24 Throughout the land that you hold as a possession, you must provide for the redemption of the land.
25 “‘If one of your fellow Israelites becomes poor and sells some of their property, their nearest relative is to come and redeem what they have sold. 26 If, however, there is no one to redeem it for them but later on they prosper and acquire sufficient means to redeem it themselves, 27 they are to determine the value for the years since they sold it and refund the balance to the one to whom they sold it; they can then go back to their own property. 28 But if they do not acquire the means to repay, what was sold will remain in the possession of the buyer until the Year of Jubilee. It will be returned in the Jubilee, and they can then go back to their property.
29 “‘Anyone who sells a house in a walled city retains the right of redemption a full year after its sale. During that time the seller may redeem it. 30 If it is not redeemed before a full year has passed, the house in the walled city shall belong permanently to the buyer and the buyer’s descendants. It is not to be returned in the Jubilee. 31 But houses in villages without walls around them are to be considered as belonging to the open country. They can be redeemed, and they are to be returned in the Jubilee.
32 “‘The Levites always have the right to redeem their houses in the Levitical towns, which they possess. 33 So the property of the Levites is redeemable—that is, a house sold in any town they hold—and is to be returned in the Jubilee, because the houses in the towns of the Levites are their property among the Israelites. 34 But the pastureland belonging to their towns must not be sold; it is their permanent possession.
35 “‘If any of your fellow Israelites become poor and are unable to support themselves among you, help them as you would a foreigner and stranger, so they can continue to live among you. 36 Do not take interest or any profit from them, but fear your God, so that they may continue to live among you. 37 You must not lend them money at interest or sell them food at a profit. 38 I am the Lord your God, who brought you out of Egypt to give you the land of Canaan and to be your God.
39 “‘If any of your fellow Israelites become poor and sell themselves to you, do not make them work as slaves. 40 They are to be treated as hired workers or temporary residents among you; they are to work for you until the Year of Jubilee. 41 Then they and their children are to be released, and they will go back to their own clans and to the propertyof their ancestors. 42 Because the Israelites are my servants, whom I brought out of Egypt, they must not be sold as slaves. 43 Do not rule over them ruthlessly, but fear your God.
44 “‘Your male and female slaves are to come from the nations around you; from them you may buy slaves. 45 You may also buy some of the temporary residents living among you and members of their clans born in your country, and they will become your property. 46 You can bequeath them to your children as inherited property and can make them slaves for life, but you must not rule over your fellow Israelites ruthlessly.
47 “‘If a foreigner residing among you becomes rich and any of your fellow Israelites become poor and sell themselves to the foreigner or to a member of the foreigner’s clan,48 they retain the right of redemption after they have sold themselves. One of their relatives may redeem them: 49 An uncle or a cousin or any blood relative in their clan may redeem them. Or if they prosper, they may redeem themselves. 50 They and their buyer are to count the time from the year they sold themselves up to the Year of Jubilee. The price for their release is to be based on the rate paid to a hired worker for that number of years. 51 If many years remain, they must pay for their redemption a larger share of the price paid for them. 52 If only a few years remain until the Year of Jubilee, they are to compute that and pay for their redemption accordingly. 53 They are to be treated as workers hired from year to year; you must see to it that those to whom they owe service do not rule over them ruthlessly.
54 “‘Even if someone is not redeemed in any of these ways, they and their children are to be released in the Year of Jubilee, 55 for the Israelites belong to me as servants. They are my servants, whom I brought out of Egypt. I am the Lord your God.
Ee Ling pointed out that on those Sabbath years and the year of Jubilee, God gave the Jews the assurance (verses 18-22) that He would provide for them if they were to follow His commands. Sometimes it's difficult to let go of work because I fear I won't be able to take care of myself, but this reminds me that God will always provide sufficiently for me. In this chapter, God had used the phrase, "I am the LORD your God" several times. That gave me comfort, knowing that God is a personal God who would not forsake His people.

While reading the first few verses which spoke about toiling for 6 years, but the 7th year to be offered to the Lord as a Sabbath year, it struck me. I started my working life in late 2007... and this year is 2014. It's been 7 years. I have to say, I had chills run down my spine with that realization. Is God trying to tell me to pause and to focus on resting in Him? I think this is definitely something I need to meditate upon... because honestly, I still don't know what it means to "rest in Him".

While writing this post, this song began playing and I find it so appropriate with this struggle that I have - to find rest in Him and to trust Him wholly to meet my needs... and to lift my burdens to my precious God, in prayer...

SELAH - BE STILL MY SOUL/WHAT A FRIEND WE HAVE

Be still, my soul: The Lord is on your side.

Bear patiently the cross of grief or pain;
Leave to thy God to order and provide;
In every change He faithful will remain
Be still, my soul: Thy best, Thy heavenly friend
Through stormy ways leads to a joyful end.
Be still, my soul:
The waves and winds still know (still know)
His voice who ruled them
While He dwelt below
Oh, what peace we often forfeit, oh, what needless pain we bear,
All because we do not carry everything to God in prayer.
Be still my soul.

Wednesday, 29 October 2014

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...

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..

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/

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.

Tuesday, 23 September 2014

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