Legacy

I finally managed to meet up with my bestfriend after nearly a year of us not having the opportunity to meet up. Although we don't get to chat often even via text, I know that we still care for each other deeply, and there was much to catch up on in regards to our personal life events. One thing that struck me in our conversations with other people, may not be deep as it requires a safe space and safety to be able to broach sensitive or difficult topics - such as the meaning/purpose of life, and how we view death.

As we spoke, I realized how blessed I am able to have a few close friendships that are willing to delve into these conversations. She had shared before that she had done a "legacy interview" with her parents, asking questions about their lives - questions that, let's be honest - typical Asian families wouldn't speak about. It was something I really admired her bravery for. I was surprised when she brought this up - asking if I would like to have this legacy conversation with her, for her to record it. 

First thought I had - what words of wisdom would I have? I don't think I've achieved much nor have I made much of an impact, and while I can be serious when I need to be, humor is my coping mechanism. "but that's you", my friend quipped. She hopes to record a view of us talking about death and how I've wanted to live my life. Sounds grim and morbid, and yet, meaningful at the same time. And it touches me that she would like to keep a memory of me with her in the time that I am to pass on (we'll never know when exactly... but there seems to be a mutual understanding that time is ticking for me).

That being said, it reminded me of a song I've been listening to, which I believe I've shared in one of my posts, and it still rings true to me - that I would not like a legacy that's focused on me. I hope that my life points to Someone greater - my Lord Jesus Christ who has saved me of my sins and has granted me joy amidst the pain and struggles. The One who hears my innermost fears and I know empathizes with my pain while granting me strength to go through it. 

May this theme continue to be apparent in my days.  

Only Jesus

Make it count, leave a mark, build a name for yourself
Dream your dreams, chase your heart, above all else
Make a name the world remembers
But all an empty world can sell is empty dreams
I got lost in the light when it was up to me
To make a name the world remembers
But Jesus is the only name to remember

And I, I don't want to leave a legacy
I don't care if they remember me
Only Jesus
And I, I've only got one life to live
I'll let every second point to Him
Only Jesus

All the kingdoms built, all the trophies won
Will crumble into dust when it's said and done
'Cause all that really mattered
Did I live the truth to the ones I love?
Was my life the proof that there is only One
Whose name will last forever?

And I, I don't want to leave a legacy
I don't care if they remember me
Only Jesus
And I, I've only got one life to live
I'll let every second point to Him
Only Jesus

Jesus is the only name
Jesus is the only name
Jesus is the only name to remember, oh
Jesus is the only name
Jesus is the only name
Jesus is the only name to remember

And I, I don't want to leave a legacy
I don't care if they remember me
Only Jesus
And I, I've only got one life to live
I'll let every second point to Him
Only Jesus

I don't want to leave a legacy
I don't care if they remember me
Only Jesus

Gaslighting

 Gaslighting. definition: psychological manipulation of a person unsually over an extended period of time that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one's emotional or mental stability, and a dependency on the perpetrator (Merriam-Webster, n.d.)

Gaslighting is a term that has been making its round in recent years. It dawned on me while I had a conversation with a friend that this happens medically too. And it has happened to me since childhood, and I've only put a name to it now. 

Medical Gaslighting: definition: when a physician/other medical professional dismisses or trivializes a person's symptoms. They may mistakenly determine that pain or other symptoms are not real or simply a psychological (eg. stress/depression/anxiety). When this happens, it may take years, if ever, to receive a proper diagnosis. It can also cause an individual to doubt their own pain or sanity (Painscale, 2017).

So one may hear things like, "I can't find anything (ergo, you're imagining things)", "you may be a hypochondriac", "are you sure you are experiencing this?", etc. I've also had a doctor who retorted that I gave "textbook descriptions" of my symptoms. 

Sadly, because of these professionals who choose to doubt one's experience, it impacts the perception of others/family about said person. It doesn't help when the illness is invisible or the choice is made to not "act" sick. In my experience, I tend to "act well" because I deny my own pain. 

While I was hospitalized last month, I found myself doubting my difficulty to breathe and wondered if I was exaggerating ("do I really need to be in the hospital? Do I really need a bronchoscopy?"), and I realized how absurb those thoughts were, but only when the chest physician told me that my condition would have turned fatal if I chose to ignore it. A family member actually texted if she could return later instead of coming back as soon as possible to help at home (I've been sole caregiver of my parents for the last 2 years), asking, "is this urgent?"

So yes, I noticed the lack of empathy and urgency towards my state of deterioration from my family. And I realize this tends to lead me to question my own experience with pain and illness - am I blowing things out of proportion? Why are they not affected or showing concern that I've been hospitalized THREE times in year? Is it really a big deal?

Even now, I do still struggle with breathing at times. And I get questions from my family - "why are you sighing?" Err... because I can't breathe? Honestly, I'm not doing it to seek attention. I'd be more than happy to be healthy, instead of pushing myself to function. HONESTLY.

But I am aware now... gaslighting happens medically as well. For you out there who may need to read this, I hope you trust your own instincts and experience with your own body. It's easy for people to pass judgment and accusations when they aren't the ones who are going through it because they are basing it on their own experiences or ability to function, not ours as chronically ill individuals.         

  

PainScale (2017) What is Medical Gaslighting?https://www.painscale.com/article/what-is-medical-gaslighting

Merriam-Webster. (n.d.). Gaslighting. In Merriam-Webster.com dictionary. Retrieved January 23, 2022, from https://www.merriam-webster.com/dictionary/gaslighting

Goodbye 2021

Just like that... I find myself staring at the calendar and realizing its the 31st of December of 2021. This year has been a blur. Time has zoomed past and it felt like I was just trying to catch up most of the time. I remember as I was reflecting at the end of 2020, the Lord had prepared me - that my health would deteriorate but that He would be with me throughout. He still reaches me in places and mediums that would touch me the most - being in my car, listening to music. I was reminded of His many promises through the Malaysian Blessing song - He will bless me and keep me, and give me peace amidst the tumult I experience and that He is surrounding me. 

The verse of today is Psalms 73:26 ~ "My flesh and my heart may fail, but God is the strength of my heart and my portion forever". How apt is this verse. God's reminder for me last year was that He would be with me, no matter what. And this year end's reflection is yet again a reminder that He is my strength AND my portion, forever. 

I wanted to give context to this verse, and hence I looked up the whole Psalm. But I'd like to highlight Psalms 73:23-26

Yet I am always with you;
    you hold me by my right hand.
24 You guide me with your counsel,
    and afterward you will take me into glory.
25 Whom have I in heaven but you?
    And earth has nothing I desire besides you.
26 My flesh and my heart may fail,
    but God is the strength of my heart
    and my portion forever.

I stumbled upon this Benson commentary that touched my heart.

My flesh and my heart faileth — I find, by sad experience, my own weakness and inability to encounter such temptations, and bear, with becoming patience and resignation, such troubles, as I frequently meet with; yea, I find myself a frail, dying creature, that shall shortly return to the dust. Both my flesh and heart, my body and soul may, and, unless supported by God, will soon fail. But God is the strength of my heart — I have found him so; I do find him so, and hope I ever shall. As if he had said, Though I have no strength in myself, I have it in God, my never- failing refuge, to whom I will trust as long as I live. Hebrew, צור לבבי, tsur lebabi, the rock of my heart, a firm foundation, which will bear my weight, and not sink under it. In the distress supposed, he had put the case of a double failure, a failure of both the flesh and heart; but in the relief, he fixes on a single support; he leaves out the flesh, and the consideration of it; it is enough that God is the strength of his heart. He speaks as one careless of the body; let that fail, it must, there is no remedy; but he is concerned about his soul, to be strengthened in the inner man. And my portion for ever — He will not only support me while I am here, but will make me happy when I go hence, happy to all eternity. The saints choose God for their portion; he is their portion; and it is their happiness that he will be their portion for ever; a portion that will last as long as the immortal soul. Reader, consider this, and make choice of this portion without delay.

Rock of my heart

I really find that God reaches out to me when I find the time to be still and know He is God and is with me. Again, the picture of me being in the stream comes up when I think of Him being the Rock of my heart. He is my never-failing refuge, a firm foundation that will bear my weight, and not sink under it. 

Such words give much comfort to my ever-restless and tired soul. Truly, amidst the trials I've faced, God has shown that He is a Good and Gracious King and provides what I need to face these difficult times. He doesn't promise an easy life, but that He will be with me, granting me stability, throughout my ordeals. 

As I was reflecting on the year, the song "You're Still God" by Philippa Hanna came up in my mind. And yet again, another appropriate reminder that no matter happens, He is still God and He reigns. And my task is to fix my eyes on Him (Hebrews 12:2) and to trust that He is orchestrating things out for the glory of His Kingdom, and I am part of that plan. And all His plans will work together for good (Romans 8:28) and are meant to give me hope and a future (Jeremiah 29:11). 

You're Still God

When all foundations have been shaken

When I'm left standing in the dark

And all I feel is my heart breaking

You still reign and You're still God

And when it feels all hope has faded

The heavy questions hit so hard

And though my soul may feel forsaken

You still reign and You're still God

Though I can't see what's before me

I know that I can trust Your Heart

And this one truth will be my story

You still reign and You're still God

I will declare that You are with me

Though voices whisper that You're not

You'll never leave me nor forsake me

'Cause You still reign and You're still God

Though I can't see what's before me

I know that I can trust Your Heart

And this one truth will be my story

That You still reign and You're still God

Though I can't see what's before me

I know that I can trust Your Heart

And this one truth will be my story

That You still reign and You're still God

I know You reign and You're still God

And when my enemies surround me

I'll trust the victory of Your Cross

And fix my eyes upon You, Jesus

For You are God and I am not

You are Good and You are Faithful

As You have been from the start

You work in all things for Your Glory

'Cause You still reign and You're still God

And though I can't see what's before me

I know that I can trust Your heart

And this one truth will be my story, yes it will

That You still reign and You're still God

Yes, this one truth will be my story

You still reign and You're still God

Gasping for Air

 Interestingly... just a day after writing the post about finding footing, I had to be hospitalized as my difficulty in breathing became unbearable. Tobe honest, during the eve of me being admitted to the hospital, I felt my resolve to fight for my life slipping away. I literally surrendered my life to God, that if He were to take me - I was ready. But after a few hours of disturbed sleep, I woke up and relented that it was not time yet for me to return Home. but two friends had contacted me, both suggesting that I needed to go to the hospital. 

Long story short, I did go to the hospital and it triggered a series of events - which required my sisters to take action since I was incapacitated. after much testing, I was diagnosed to have a set of lungs that were only functioning at 64% capacity (a healthy person's lungs is at least 80% and above). The bronchoscopy indicated that my lungs were highly inflammed and weak, and my airways were occluded due to the thick phlegm and mucus in my lungs. 

"You have asthma bronchitis and hyperventilation syndrome. This is not psychological. It is an actual medical condition and will require longterm management"

"It's good that you came in now, because this could turn fatal"

These were words that were uttered by the chest physician. Was I numb to yet another diagnosis? I think I was still trying to process that I was in the hospital for the 3rd time this year. and a conversation I had with Ann, that my vitals tend to show that things are fine but when we dig deeper, we tend to uncover that something is wrong with my body. And again, that hypothesis rang true. 

While in the hospital, Jo reminded me of my reflection - that I was reminded to find footing in God, but she wondered if it was God's gracious plan to prepare me for this hospitalization and diagnosis - and not so much about having to deal with my parents/family.

Who knows... but definitely without God being my anchor... I would be really bitter with how things are. As I type this recollection, the song, "Oceans (Where Feet May Fail)" comes to mind. Specifically this particular verse:

Your grace abounds in deepest waters
Your sovereign hand
Will be my guide
Where feet may fail and fear surrounds me
You've never failed and You won't start now

It's been a trying year, Lord. A year that has taught me much about leaning hard on Him. It is no surprise that Matthew 11:28-30 has been coming again and again as a reminder for me to run to Him with my burdens.

28 “Come to me, all you who are weary and burdened, and I will give you rest. 29 Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. 30 For my yoke is easy and my burden is light.”

Lord, as I gasped for air, please remind me that my breath comes from You and that I will heed Your Word and be directed by Your path.

Finding Footing

 

I've been feeling overwhelmed, feeling like I'm bearing the weight of my family on my shoulders. And it made me realize that my family's disengagement and lack of involvement towards my parents health is contributing to me absorbing all the anxiety and responsibilities. 

Again, the Lord provided a space for me escape, although this time I was dragged into the drama quite abit due to the many calls I was receiving. But i'm also really thankful for a friend who was closeby, providing the comfort I needed through physical touch (my love language) and prayers. I felt bad because I had to deal with so many issues but both J and M were very gracious. 

While I was in the river, what drew my attention most were the raging waters - the forcefulness of it and the potential danger of being swept away. But navigating myself to and through those waters, and finding strong footholds for me to plant myself firmly against the beating of the waters reminded me of how I needed to find my footing in God. I've been beat up all over, to the point that I am spent - the sense of tak larat lagi. yet, when I was able to position myself safely, there was no fear of danger. 

That said, I feel like my body is giving out. It is taking extra effort to even breathe. I find myself having to use my inhaler more to ease my breathing. My chestpains are back with a vengence. Every muscle in my body seems to be aching. And I wonder if my pain threshold has lowered or my pain intensity has increased. My migraines are also overtaking me and yet, I am trying to push myself way beyond my capabilities to function because I'm the sole caregiver. I'm angry. Angry at the self-centredness and passiveness of my family. I realize I'm just trying to hold out until I get Safe Haven running or at least have it's foundations in place, then I will really be able to go. I honestly don't think I have much left in me. Lord, help me find my footing in You and that You will grant me the strength to carry out the work You have entrusted me with. Please provide me with the strength that is needed till I return Home. 

Priorities

 For the last two years, especially with the pandemic and lockdowns, I've had to be the sole caregiver of my parents, especially with all my sisters being in different countries. 

I find this role, to be extremely taxing - to be a caregiver, when I myself, have a truckload of health issues that I need to attend to. My health seems to have deteriorated further due to the stress of being responsible for pretty much everything in the household. I find myself wanting to prioritise my needs but it is SO hard. and it makes me so angry when my parents don't even try to cooperate or help. 

Early October, I displayed symptoms that seem to suggest a TIA - disorientation, weakness in my left arm and leg and a stabbing migraine at my head. and ever since then, I've noticed that my left hand is weaker than before and I get out of breath quite easily. 

I'm just so exhausted and drained. and whenever I ask for help from my sisters, I still end up doing most of the problem-solving. and it pisses me off. what's the point.

sigh, i really just needed to get this out of my system because I feel my anxiety, depression and rage is getting to me and it feels really overwhelming. I'm struggling to function. 

Sobering Reminder

 Today, I celebrate my 7th anniversary of the day I had my first neurosurgery for Moyamoya. It's a time of thanksgiving and gratitude that I've survived up till now.

And then I see a post on FB from Tara, a fellow Moyamoya warrior, a friend I've made through our shared experience with this disease. An 8 year old from Australia with Moyamoya had suffered a hemorrhagic stroke on Friday, and he had passed away today.

An 8 year old. That would mean he was just a year old when I underwent my first surgery. It just makes me recognize how blessed I am to have survived for so long, without any significant strokes thus far. It's also a sobering fact that this disease is progressive and is nondiscriminatory. Our lives could just be snuffed out, just like that. Truly, it is this realization that mortality is very real to us, Moyamoya survivors. We can't take life for granted. While I celebrate a potential new lease in life today, a family is mourning a loss of life. 

I don't know who this kid is, nor have I ever spoken to his family... but I really feel for them. Lord, please grant them comfort in the midst of this painful loss.