Sick again

 So... I've fallen sick again. Just before CNY came, I caught a bug from my sis who was deaf to my instructions to mask despite me badgering her to - she lives with people who are vulnerable to illness and she doesn't seem to think how it could affect others. It's more than a week since I started coughing and I have not recovered. 

I've been feeling like crap thanks to the constant coughing which then impacted my weak lungs. I started wheezing and I needed to use my strong Symbicort (that contains steroids) which in turn messed with my menstrual cycle.. also , my sinus started getting blocked causing my face to hurt. I had coughed so much that there were blood in my spittle. Do to my constant coughing, I was barely sleeping causing me to be utterly exhausted, and giving me migraines. There was a point when my heart rate shot up to 117 and I experienced pins and needles in both my hands and fingers.

It made me realize that what's a "simple" cough for my sis turns detrimental for me. What starts from a simple cough really spirals to other issues for me due to my health conditions. I finally went to see the doctor after trying to allow my immune system to take care of it but to no avail. The doctor had to put me on the nebulizer because my lungs weren't clear and she even told me that I should have gone to the ER since I've had some difficulty breathing instead of depending on my inhalers. 

It makes me realize how much physical discomfort I tend to tolerate because it has become such a norm for me. Also, she asked if my current symptoms felt as bad as when I was diagnosed with asthma bronchitis in 2021. I found myself not being able to identify if it was as bad. but I decided to say no, because I remember feeling like death back then. Now, I just feel really uncomfortable but I didn't think I was dying. 

Anyway, I was given 5 different types of meds to control my asthma, to break down the mucous build up in my ENT, and for my cough and phlegm. I am not coughing as much as before but its still quite cumbersome. I just hope I feel better soon. I've had to cancel work, and I've just been feeling exhausted all the time. January has come and go just like that, and I know this year's resolution was for me to slow down... but I can't help but feel unproductive. God, please help me be gracious and gentle to myself. 

10th Anniversary of 1st Brain Surgery

 Today marks the 10th anniversary of my 1st brain surgery. This milestone feels rather surreal. How time has flown. That said, my chronic health issues persists since my disease is a progressive yet incurable one. Very recently, my symptoms emerged with a vengeance - severe debilitating migraines which caused nausea and vomitting, amongst other symptoms. A few days after, I was suddenly overcome with excruciating pain down my spine and legs, and after lying myself down, I could not move nor turn. And I had to be transported to HUKM's ER via ambulance. Thankfully I was able to walk after hours of monitoring and having been pumped with painkillers.

For the next few days, despair set in. To see a seemingly healthy looking person staring back at me in the mirror caused quite a mental disconnect with my actual condition, and the grief washed over me in waves. This time, anticipatory grief emerged, recognizing that this would probably be how paralysis feels like in the event of a major stroke.

I gave myself space to cry and lament to God. ZJ shared Psalms 28 and grieved with me. And I've been listening to MercyMe's "Almost Home" and Natalie Grant's "Praise You In This Storm" . Also, God worked in mysterious ways. As I was scrolling through my phone one day, a picture of a girl staring at herself in the mirror popped up (pic 4). And the girl in the mirror leans over to give herself a hug. Seeing that touched me to the core and it made me tear up. Having that space to acknowledge my frustrations to God and knowing that He listens to my pain gave me peace that I am not alone. I also had people praying for me - which I am thankful for. I recognize this is a cycle that I'll experience throughout my lifetime as I battle with my disease and it's ok to experience those difficult episodes. God will continue to hold me and comfort me during those moments.

For now, I'm still in recovery - having "torture" sessions with my physiotherapist as she tries to loosen and stretch my tightened muscles, while I try to get back to some normalcy (work, rest, meetings, etc).

Revisiting New Me and Old Self

Yesterday marked the 9th year anniversary of my 2nd brain surgery. It's amazing how time flies even though sometimes the daily challenges seems so long and drawn out. 

The topic of health, life, death and struggle came up today as I had lunch with a friend. And I shared with her my journey thus far - me wrestling with depression post-surgeries, the survivor guilt that I experience when other people I know pass away within a short(er) duration of their illnesses, and sometimes I just wonder what else is in store for me as I continue to add more health problems to my "collection". And yet here I still am, albeit looking a little more worse for wear at times. 

During this conversation, I recalled my blogpost where I spoke to myself in the 3rd person - Old Self and New Me. This time, when I reread the post, I realized that having to let go of Old Self doesn't hurt as much as it did back then. In some ways, I have come to acknowledge that I will grieve for the departure of Old Self - the energetic, athletic Old Self that had no pause button. As I reflect on Old Self - yes, there were things I liked about her, the fake-it-till-you-make-it confidence, how Old Self pretty much showed her strengths all the freaking-tiring time and rarely faltered. But these were very much facades - performances that I was taught from young to act a certain way due to the status of my family and certain misguided understanding of how being "more than conquerers" and "being victorious" was supposed to look like.

I know I gave New Me a hard time when she emerged out of necessity. But as I have come to know her more and more each year - I've begun to see her worth. In fact, I recognize that:
*New Me has given me space to be vulnerable,
*New Me helped me realize that I don't need to feel/act strong all the time,
*New Me taught me to be more assertive and have better boundaries because I would suffer whenever Old Self insisted to push me to function when I can't/shouldn't. 
*New Me helped me to connect better with myself, with God and with others. Hence, New Me has helped me be more authentic in my relational, emotional, psychological and spiritual walk. 
*New Me taught me to be gracious, patient and compassionate. 
*New Me made me realize that I truly cannot live without God, and all my strength comes from Him and not from me. 
*New Me pulled down a lot of the walls I put up and to be ok with asking for help. It also helps that God provided me the support that I needed in the form of loving friends, amidst others who may not be as understanding.
*New Me taught me to slow down, to learn to be, and not get too caught up with just doing
*New Me improved Old Self's innate ability to be reflective and sensitive to others to be more self-aware, hence taking action to meet my needs and not just for people around me. 
*New Me helped me to design a workshop on emotional regulation for teenage girls, derived from the lessons I've learnt from New Me's struggle. Something Old Self would not have had the maturity to process and share. 

I know New Me will continue to evolve in some ways as my chronic illness journey continues but it doesn't seem as bleak as before. What felt shameful in the past feels like a lesson I can share with others now. Interestingly, I came across this quote by Henri Nouwen recently and I resonated so much with it. 

This quote also reminds me of the angry question I posed to God in my earlier struggle with illness and limitations - "Why did God give me the heart to serve but not the body to go with it?" I believe I have the answer now. The answer is that God did give me body to match this heart to serve. I needed this broken body. This kintsugi-ed body was required to connect better with myself, others and with Him, to serve more genuinely with His Strength and Will, and me not taking any credit for it, because it is truly by God's Grace that things have been possible amidst and despite my limitations.
His power is made perfect in my frailty and weakness (2 Corinthians 12:19)

Old Self, I love you. You were there for nearly 30 years of my life so I know that although some parts of you have had to leave, the memory of you and some parts of you will always remain in me but I will long for you as a whole once a while. And that's OK. You had your usefulness back then. I know I will miss the part of you that can work full time and function for hours like an energizer bunny with little physical consequences and I appreciated the grit and stubbornness that you provided me back then but it wasn't very helpful anymore, not all the time anyway. So, Old Self, you're not fully gone. There are things that I'd like to retain from you, Old Self. Your problem-solving skills, determination, cheekiness and wit, your musical ear, and most of all, your heart for others. You're gungho but you'll need to collaborate with New Me so she doesn't suffer. So I don't suffer. I accept that you will pop your head in once a while, but we'll compromise. 

I am also learning to be less hard on myself, to be less hard on you, Old Self, when your unhelpful tendencies such as pride and perfectionism emerge, because change is hard but it is happening. slowly but surely. So New Me, please continue to bear with me. I love you too. And thank you for never giving up on me even though we've gone through really difficult moments. Please continue to help me to live meaningfully and intentionally. 

I know this seems weird as I was inspired to create this cover when I was attending a grief workshop back in 2020. But I think I truly understand the personal impact this song has for me now as I've had to work out my grief and loss with Old Self. So in a sense, this song was really dedicated to myself, not to anyone else. It was a way of me trying to come to terms with saying goodbye to Old Self. 

I can't seem to embed/attach an audio file to blogpost, so unfortunately I can't show my cover version of this song. so the lyrics will just have to do.

Take Care of Yourself

It's time for us to part
Yeah, it's best for us to part
Oh, but I love you
Ooh, I love you

Take care of yourself
I'll miss you

The nights are long alone
I sit alone and moan
Oh, 'cause I love you
Ooh, I love you

Take care of yourself
I'll miss you

And no more tears to cry
I'm out of goodbyes

It's time for us to part
Although it breaks my heart
Oh, 'cause I love you
Ooh, I love you

Take care of yourself
Take care of yourself
Take care of yourself

I love you

When Pain Doesn't Stop Coming

 I was admitted to the ER yet again on September 10, 2023, after attempting to deal with excruciating migraines for 4 straight days. It was incidentally discovered that I have a blocked sinus and the ENT specialist isn't able to identify the cause of the blockage - whether it's liquid, soft tissue or a tumor. And there is a big possibility that I may have to undergo surgery to diagnose the issue and treat it at the same time.

Truth be told, I shelved this discussion aside as it was just too much to deal with at that point in time. And to some extent, i'm still keeping this issue at an arm's length. I'm just so exhausted, and my migraines have not really left me as I'm still experiencing some residual migraine effects - fatigue, brain fog and eye pain. 

I felt rather defeated on Monday, when I went for my follow-up with the neuromedical team at HUKM. It seemed as though I was just another case presented in front of the doctor. There was little consideration to alleviate my struggle with pain, with the end suggestion being that I just go to the ER whenever my migraine strikes - that would just mean that I would be at the ER very often. 

Also, my request to be placed on welfare (OKU) was rejected by the specialist... due to my age. Even though I had explained that I am unable to work full-time and its a daily struggle to live "normally", the comment was that I am still young and should be able to find ways to support myself. 

That triggered my insecurities that I've been trying to work through - I would want nothing more than to be able to work as my peers do, but i'm limited due to my illness. The flippant remark about my age and the perceived ability to work more was deeply hurtful to me. Even having to acknowledge that I will require welfare assistance has been difficult. 

Sometimes, I just wish I could have a break from this. But I guess that's not realistic since chronic illness doesn't provide holidays from it. 

Triggers

 Breathlessness has been my enemy the past few months. Began in November 2022 and its just been present ever since. I feel insecure without my ventolin inhaler. Rightly so, as I started having coughing fits once out of the blue when my wheezing became a lot more intense and I didn't have the inhaler with me. 

My muscles and joints have been feeling weak and sore as well. Again, just living with pain constantly, though I try to not show the discomfort unless it's unbearable and I can't hide it anymore.

I got rather triggered last week when a friend responded that I "didn't look it", when I told her that my health has been sucky as usual but life goes on - which is true. It felt dismissive and invalidating. To which I just replied that I don't take pictures of me writhing in pain nor when I use my inhaler, and that my pain/discomfort tolerance is high. 

and it hit me - Why did I feel like I had to prove that I'm telling the truth? Do people expect to see evidence of me in pain (i.e. look like death)? I guess that's just people's preconceived notions of how illness should look like. 

For myself, it's recognizing my irritance but not letting me boil over. Giving myself time to feel frustrated but taking care not to hold on to it.  

Dealing with Decline

 I've noticed that my word recall and memory has been on a decline. My mind literally goes blank on a daily basis as I struggle to form sentences or find words, even more so when I am tired. During those times, my words will be slurred as well. It is more apparent when I am engaging verbal conversations as I will have to think on the spot. My more familiar doctors and friends have highlighted that they've recognized this occurence - the fragmented and choppy thoughts, coupled with my need to take deeper breaths while I speak due to my asthma flare-ups.

It would be a lie if I say this doesn't worry me. My work as a therapist relies on my ability to communicate with others, and that would involve verbal interactions. I require a wide range of vocabulary to aid with the therapeutic process, and hence, I need to multitask. This is something I struggle to do now. Multitasking. My brain has difficulty juggling different things at the same time. Even with one task, it's a battle. 

It saddens me but I have to find ways to compensate for this deterioration while grieving for yet another noticeable loss I'm experiencing. I've developed a habit of talking to myself, giving me space to feel my emotions but also to then consider what can I do moving on. It helps so that I do not get stuck in the (overwhelming) negativity, and I attempt to identify solutions. 

One of my biggest lessons is to be kind to myself and be compassionate towards me. I know how hard I can be on myself. This helps me from spiralling. 

Medical Alert ID (continued)

 I'm glad to share that I have managed to purchase a medical ID after months of searching. I realize that there is a rather poor awareness when it comes to health management in Malaysia. A medical ID tag seems rather unheard of whenever I tried exploring ways to get it made. And my bestfriend wondered whether our local paramedics would recognize the medical ID and what the terms stand for if I were to wear it. I'm choosing to give them the benefit of the doubt that they will. After all, I can only do my part to provide the info needed for them to treat me if I were incapacitated. 

That said, it's important to have a medical ID with us, especially if we are susceptible to symptoms that could cause us to not be able to communicate. I've finally found a company that does a pretty good job. In fact, I was quite impressed because it only took two days for my customized bracelet to be delivered to me. I had made my order on Monday and received it on Wednesday. So if you're interested, feel free to check this website out: http://www.lifeline-id.com/

This is NOT a sponsored message. I'm just hoping to provide a resource in case you are considering a medical ID. So far, Lazada's offerings have not been acceptable. 

Medical ID

I was hospitalized again late February because I was experiencing a myriad of symptoms, which led me to be monitored in the ICU. As always, whenever I am in the hospital, I need to provide a list of information to the nurses - drug allergies, current/previous health conditions, medication i'm on, etc. And when you have a long list of chronic illnesses, this is quite a tedious process. Anyway, I may have this condition called Vertebrobasilar Insufficiency, which means that there is a lack of blood flowing to my brain. 

My sis suggested that I type these out so that my family can have access to this info in case something were to happen to me (i.e. I collapse from a stroke). While I am in the midst of doing this and storing it in a cloud, I'm thinking that I will need a medical ID bracelet. 

Joke is, the bracelet does not have enough space for me to list out everything. After discussing with a doctor friend, I've narrowed it down to what's most important, with a note to look through my wallet for a complete list of medications i'm on, and that I do not want to be resuscitated if I fall into a coma. 

While discussing and contemplating this, I felt this sense of - "this is it". The end feels like it is drawing nearer - what with my body deteriorating, and I seem to be collecting new diagnoses and conditions every so often. And yet, to some extent, I'm feeling some sense of acceptance, that i'm ready for this. 

One thing that hit me is that I don't have an emergency contact. My parents won't be able to take action if anything were to happen to me. And my sisters may not be around. I think I felt sadder with this realization as compared to my preparation for medical emergencies. 

Fleeting Mind and Breath

I found myself shocked and, dare I say, fearful about two things today. I've typically been able to find a way to just deal with the consequences of my ill health. I've experienced quite a lot of frustration and anger... but honestly, not so much a sense of surprise or fear. 

My first big (to me) realization: Ever since my brain surgeries, I've noticed a decline in word recall, especially when I'm tired (read: exhausted). I find myself struggling with this issue even more ever since my recent hospitalization in December, and I wonder if it's due to the medications I'm taking. 

I had a conversation with a dear friend about dissociations today, with both of us believing that dissociations are one of the ways for us to cope with overwhelming events, and that it only becomes harmful/is an issue when it impairs our functioning. So far, I've been thinking that my "dissociations" are just my ability to compartmentalize and to distract myself from painful stimuli. However, I discovered that I had a few texts with another friend that I have no memory of, whatsoever. Granted, I had taken my sleeping pills by then but honestly, this freaked me out a little - due to the fact that my thoughts in those recorded moments appeared lucid but it feels like an out of body experience now that I look at it. While I've experienced the drowsiness from the meds many times, it was always obvious that I was "out of it", and I'd have typos galore or my sentences may not make much sense. But this time, reading my own messages felt strange and foreign. Am I literally beginning to lose my mind? I find myself struggling to form sentences many times and my working memory/short-term memory is poor, to a point that my sister jokes about my need for dementia meds. I'm only able to remember things when I mindfully repeat them over and over again, and when I note them down several times. Could it be due to my continued poor sleep, despite the consumption of sleeping pills?  

Second thought: I'm inhaling really deeply just to be able to breathe. I mean... I've said this to myself and to others without much feeling the past few weeks. But today, when I listened carefully to a video I had taken playfully of a friend, I heard myself panting. I could hear myself attempting to breathe. Again, I turned it into a joke - my coping mechanism is 100% on - that I sounded like a predator. But truth be told, it shocked me that my health has come to this. I don't know why. Is it finally dawning on me the state of my health? I'm very much a do-er, and frankly, I've not stopped since returning from my hospital hiatus. I've still been experiencing chest pains, tingling and aches in my arms, and I've been having migraine attacks.

On one hand, I recognize that I need rest but on the other hand I feel the sense of urgency and responsibility to spend time and to check in with loved ones, and to serve. Even writing this post, I've had to stop several times to retrieve words that just feel slightly beyond my cognitive reach at times, and I'm painfully aware of the heaviness in my chest and head. At this point, I'm not dissociating but the reality is hard to acknowledge as well. It's my grief journey that I have to contend with again. And it suddenly feels lonely, even though I do truly believe that God is with me.   

Lord, please grant me peace even as my body begins to fail... As i type this, a tune flashed in my mind. However, I had to take some time to google the song lyrics as I could only recall a few words. But thankfully I have found it, and it feels appropriate to end my current reflection wit this hymn.. I pray that even if my memory begins to fail, I will not forget the love and sacrifice Christ had made over 2000 years ago in order to reconcile me back to my Abba Father. I pray that I will always remember that Jesus is my Saviour and Lord...

According to Thy gracious word,
  In meek humility,
This will I do, my dying Lord,
  I will remember Thee.

Thy body, broken for my sake,
  My bread from heaven shall be;
Thy testamental cup I take,
  And thus remember Thee.

Gethsemane can I forget?
  Or there Thy conflict see,
Thine agony and bloody sweat,
  And not remember Thee?

When to the cross I turn mine eyes
  And rest on Calvary,
O Lamb of God, my sacrifice,
  I must remember Thee-

Remember Thee and all Thy pains
  And all Thy love to me;
Yea, while a breath, a pulse remains,
  I will remember Thee.

And when these failing lips grow dumb
  And mind and memory flee,
When Thou shalt in Thy kingdom come,
  Jesus, remember me.

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.

 

The Journey of Ups and Downs

 I've always pictured the journey of life to be a race. Also, maybe due to the language used in the Bible (2 Tim 4:7 ~ "I have fought the good fight, I have finished the race, I have kept the faith") and my association to what a race is - being a 100m sprinter during my school days, the immediate image that comes to mind when I think of a race is that the path is direct and straightforward. 

But after living more than 3 decades and collecting illnesses along the way, I've come to reshape my image of this race to be a trek that crosses through valleys, fords rivers, climbs mountains... you get the idea. And the pitstops... Again, as a sprinter in the past, we never had pitstops. I just needed this burst of energy at the start and pray that I'd reach the finish line the quickest. And I've never run a marathon in my life. Being an asthmatic, I never had the lung capacity and stamina to do it. I still remember being pushed to run 400m by my house leader even when I had resisted, stating my asthma but I was still made to do it. Halfway through the race, my lungs gave way and I had to stop. 

So... endurance hasn't been a strong suit of mine. 

But now as I bring this analogy to my journey with Moyamoya and my other chronic conditions... it feels like my endurance is tested time and time again. I acknowledge the pain - emotional, mental and physical, that I've experienced... but I do also recognize how this has sparked a deeper personal and professional growth. 

I realize that life in itself is not an easy journey... but sometimes, when I factor in my health... it just feels so much more difficult and it weighs me down. I feel like there are barriers in front of me - they could be physical barriers - things that I realize I cannot do anymore because it will bring harm to my body. But I've also been noticing my psychological barriers of late. I've been feeling weaker and more vulnerable, and that makes me more cognizant of my mortality. 

I feel like i'm teethering between my determination to stay alive to do what I want to do... and wanting to surrender to God and say, I'm ready to go Home... because I am. Honestly, I even wonder if I'm suicidal. But I know I'm not actively wanting to take my life. I'm just ready for death to take me if it were to happen. 

My depressive episodes have been creeping in more this year. I find myself withdrawing at times and just crying by myself whenever exhaustion overwhelms me. And this exhaustion isn't just physical exhaustion... it feels like it cuts right through my soul. And I try to distract myself with work and keeping busy... but maybe what I need is just space to be and to feel the pain I'm struggling with. What is this grief that I am experiencing? I don't really understand it. And I wonder if this is what I will be grappling with till the day God decides to bring me Home. 

Spent

I came into the year 2021 recognizing that it would be difficult. I just didn't know the battle I would be fighting and enduring. 

Spent.

This seems to be the word that pops in my mind when some of my friends checked on me today. It's been a whirlwind experience - trying to help myself recover from my muscle tear, while bearing sole responsibility to care for my parents. 

I received a call last Friday - my paternal aunt had a ruptured tumor in her pelvis AND she had contracted Covid. I did what I could to get information and to see how I could help, while juggling work and home responsibilities. My to-do list seemed endless. I developed a severe migraine over the weekend, which meant I could barely function. Then Tuesday came, and the shocking news came - my aunt had passed. And I spent that day trying to figure out how to support my surviving aunts who were supposed to be in quarantine but was forced to run around. 

I'm thankful a friend volunteered to make calls for me to get information as I had used up spoons I couldn't afford to use - depleting my energy and feeling the strain, the literal burden on my shoulders. And I'm thankful for two conversations I had that lifted my spirits - just reminiscing an old memory of the fun times we've had. 

But I think I'm feeling the effects of my depleted resources. I'm feeling spent, drained beyond all measure, while allowing myself to grieve. I'm still very much in the state of shock as my aunt's death was so sudden. I went for my physiotherapy today and my physio pointed out that my neck, shoulder and torn muscle area was swollen and tensed. And my physio warned that I need to be careful in order not to re-injure myself. It feels like my months of physio has become somewhat undone.

sigh.

 

A Month Past and Life as It is Now

My bestfriend reminded me that it has been exactly a month since I rushed myself to the hospital due to the excruciating pain due to the torn muscles I suffered. 

Just like that. Amonth has passed. 

In this one month, I've been challenged to slow myself down and give myself space to ponder. Coincidently, I had also finished the book that has kept me engaged and encouraged me to reflect on it's personal lessons for me.  Honestly, I do get a bit restless at times, but all in all, I have enjoyed this extended break.

Slowing down has been good because it has helped me be more aware of my own reactions and responses when presented with different things on a daily basis. It has helped me deepen my appreciation of the various encounters I experience too. I tend to walk really fast. In my younger, more athletic days, my preferred mode was to run from one place to another. haha. But I realize that I've been taking my time enjoying the scenery around me as I head to the hospital for my physiotherapy sessions (but still ensuring I am not late). And I chuckled, when I noticed people zooming past me as I ambled on.

As I am trying to ease back to work, I am aware that it is so easy to fall back to the trap of "getting busy" again. But maybe it's a trial and error thing. Most importantly, it is that awareness that could get me back on track - to not overload myself, if that so happens. Anyway, while the searing pain is more manageable now, I do need to pay attention to my body and be more sensitive to my pain threshold. As a person who lives with pain every day, it is hard to gauge when pain is becoming more of a problem. Again, trial and error perhaps? 

Healthy Response

I realize for the most part, we are inclined to problem-solve when people share certain issues to us. In order to be/feel helpful, we may think it necessary to give our opinions or counsel to assist. 

I notice this tendency whenever I share my struggles (not limited to my journey with ill-health and pain) and people seem eager to provide suggestions (read: unsolicited advice) or they will point out what I did wrong that made me struggle more. Sometimes, depending on my energy and/or intimacy to said people, I may either just shut off and not share anymore, or I will take the time to express how and why those comments were unhelpful and what would be a better way to respond. If people truly mean to be supportive, they will actually take this to heart. 

I know what has hurt me the most is when people decide for themselves that they know more about my medical condition than I do, and proceed to tell me what to do. Or they will have certain far-fetched perceptions about my condition and they have "alternative" strategies for me to engage in and everything will be resolved.  

One interaction that I find to be REALLY helpful is when this is asked:

"Would you like me to be on problem-solving mode or to just give you the space to rant and for me to listen... or both?"

This was initiated by a dear friend and I really appreciate it. She doesn't assume that she knows what I need and she gives me the choice as to how she will support me. I want to emphasize that she doesn't interrupt me while I'm talking to ask this question either. She waits till there is a pause. Sometimes she forgets to ask this question and may start to problem-solve but she will then realize it and would apologize for not asking. But her active listening skills are so on-point that I already feel heard by her.  

What are active listening skills?

• looking at the person you're talking to
  (if this interaction is done online/text messaging, focus on the message)
• being fully present as you listen, don't be distracted by preparing what you're going to say in response 
• be patient and not interrupt
• paraphrasing what has been said to ensure accurate understanding
• empathizing with the person's emotions and experience
• being honest with own capabilities.
  (This is most important. I appreciate it when people tell me honestly that they don't know what to say/do in response, but that they are here for me. I value this more than someone pretending to know what to do and ending up making things worse) 

These are really helpful skills that would help you be present for others. More often than not, what is most helpful aren't the advice you can give... but your willingness to be there for someone when they are in pain, and to give them the space to express that struggle, that means a lot more.