Out of the cave

Having spent 2015 attempting to clarify the question of my vocation and calling, I entered 2016 with a desire to Participate. Participation in the works of my local community and to be part of something greater than myself, whatever the form and shape of that “community”. Having not actively participated in any fixed community for the last few years put me in a very good position to reset the area and form of my participation. On the flip side though, I was left completely clueless and do not have a launching platform – I was at point zero. What was clear to me though, was that I do not want to be doing the same thing I was in my previous participation. As a close friend rightly pointed out to me, the me 10 years ago is a very different me in the present. So there I was, in a place of endless possibility yet lost without a trajectory. What did I do? As usual, I did something that was easy and does not require me to break a leg – I placed that desire on the altar as an offering to God. This may sound “oh-so-holy”, but more often than not, it has been used as a cop-out. Pray and let God sort it out for me, end of story, case close 🙂 (oh wait… NOT quite!)

A great part of my life is bound by the limitations and constrains as one living with chronic disease. As one who grew up and mature into adulthood with such baggage in my life, I have learnt early in life to embrace imperfections and accept that life is unfair. Having struggled with my illness for 21 years, and wrestling with God on a day-to-day basis, I have come to recognize that life itself is a gift from God. After all, I am alive with a physical body created in His image. The only way I can fulfil God’s purposes in my life as a human is to be alive in a physical form, at least one that is functioning. With that, I am responsible to nurture and take care of that body! As much as I appreciate the notion of positive Christian thinking and the often well-meant yet misquoted “I can do all thing through Christ who strengthens me”, the pragmatic me do recognize that pain is equally a gift to us. Pain as defined by the Oxford dictionary, is a highly unpleasant physical sensation caused by illness or injury. Pain is a built-in mechanism to protect. It is a signal to stop us from causing more injury or harm to ourselves and a signal to tell us something is not right; it is a signal to stop and relook at ourselves. We cannot ignore pain. There is a time for everything and most of all, we are called to align ourselves with God. More on pain another time.

So since about 2 years ago, the imagery and the message of my restoration and God returning to me ALL (including years!!) that I have lost in double portion had been repeatedly spoken over me. Big part of me is excited and even fantasize about the idea of being a teenager again! (God is able to do immeasurably more than all we ask or imagine right? HAHAHA). It has been 2 years since the word was first spoken but I do not see any fruit of its kind and am diagnostically nowhere near. On the contrary, just about 3 months ago, my body started to fall apart in a more serious manner. Daily routine of getting up and going to work requires a great deal of struggling. I am constantly fatigued and in pain, and every movement hurts. It was devastating to the core and my spirit was crushed. I had no answer. I cried out to God and asked Him “Why? If the same word has been spoken over me repeatedly for 2 years, why hasn’t it come to pass? Am I not doing enough?” I remember humbling myself and asked God another question “Does the problem lie within me?”

Despite being chronically ill, I am also one who had been blessed with a rather sharp intellect. With that lies also a smart alec that could surface anytime without warning. In the last 2 years or so, upon receiving the words of prophecy and thanks to my scientific training, vast network and my privileged access to medical advancement, I had started to do many things – fitness regime, rehabilitation programs, dietary supplements, latest medical literature, change in diet and even explored alternative therapies. I was preoccupied with all these things while burning a big hole in my pocket. I had taken things in my own hands. I had taken the word and try to engineer it according to my knowledge.  It is so true that your gifting can be a gift or a curse. I was rebuked! BIG TIME.

“For the one who sows to his own flesh will from the flesh reap corruption, but the one who sows to the Spirit will from the Spirit reap eternal life.” Galation 6:8 (NASB)

God is sovereign, compassionate and gracious, slow to anger, abounding in love and faithfulness. He loves and did not give up on me. He rebuked me and in His continual process of teaching me how to be fully human, he taught me a few lessons, and some lessons they were.

When God gives you a word, while you do not sit there and do nothing, do not be in a hurry to ‘take it and run’. God is in no hurry to get the “word” done and God does not need your help. He is more interested in how we respond to Him, the process of relationship and character building leading to the fruition of His word. The process is often more rewarding that the fruit itself. Spend time to hear God’s voice. Clarify and understand God’s heart before and during any action. Our interpretation of the word may be different from God’s intention and the way to approach the word may not necessarily be the way we think it should be. Seek God and let Him be the driver.

“Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” Matthew 11:29-30 (MSG)

For me, it is a lesson to re-position myself. From a place far from grace, God has called me to come back into His presence. A life-form, given the right nourishment and living condition will grow and bring forth fruit naturally. Fruits are byproducts of a well-nourished and thriving life. It was a call to focus on first things first – to live. So what is the source of Life? The answer is found in Jesus.

“I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.” John 15:5 (NASB)

Stuck in the process of clarifying my vocation and calling, upon hearing this, I can’t help but asked the question “What kind of fruits will my life produce?” If the focus is to Love Jesus, “How does the life of a Jesus loving me look like?” and “How am I to participate in the Body of Christ?” (Sounds familiar isn’t it?)

Events unfold and part of my musing includes the topic of “Disability and Euthanasia”, much inspired by the movie “Me Before You”. It was not the movie that sparked this thought in me. As someone with chronic illness experiencing the decaying of the mortal body, I am acutely aware of the possibility that one day I may be disabled (if not already) – may it never be! I really dislike the idea of me becoming a burden to the people around me and I often wonder if I will be able to find love, to find a life partner who among all other overrated desirable traits, has an additional attribute that says “Willing to Suffer”. Well that is a separate topic altogether. And so with that, euthanasia to me could solve the problem. If one day I do become incapable of contributing anything to the society, or is unable to do anything including taking care of my own day-to-day living, nobody should be inflicted with the burden of taking care of me. I think much of that comes from the modern-day worldview where we define our worth by the things we can do and our contribution to the world. I know it is wrong and I hate myself for thinking that… but I just can’t help it as one who will potentially cause others to be burdened. Maybe that is also why I try to be independent… too independent for my own good. A big part of my journey of pain and suffering is kept private. As much as it is a very lonely journey, I had made it worse by trying to do it on my own. The constant struggle between independence and vulnerability is real. I had tasted the good and bad of both and is fundamentally still adverse to the idea of putting my life at the forefront of men’s judgement. I like staying in my cave, alone.

In my 21-year quest to understand the suffering of the ‘righteous’, among others, one key element that gets me thinking each time is the role of suffering in a community and vice versa. Jesus is the Chief Sufferer of the Church. He died on the Cross for you and me so that we can be called the People of God. An excerpt from my favourite book The Wounded Healer reads:

“A Christian community is a healing community not because wounds are healed and pains are alleviated, but because wounds and pain become openings or occasions for a new vision. Mutual confession becomes a mutual deepening of hope, and sharing weakness becomes a reminder to one and all of the coming strength.”

It is all so nice. Such nice theology and such a wonderful idea. While I am fully aware and agree that pain and suffering provide an opportunity for Christian community to witness the works of God and a chance to imitate Christ in carrying the burden and joy of another, I struggle much with the application being the one who is suffering.  I know the famous saying of “Shared joy is doubled joy; shared sorrow is halved sorrow.” I have some first-hand experience but the inertia to not share is strong for this one. Call me ignorant or selfish but most of the time, sharing does not change anything. I still have to go through the pain and I still have to go through the treatments. I am mindful and weary that my long-suffering may cause compassion fatigue and disappointment in the people around me. I have enough struggles of my own and I may not be able to handle the emotions of the people who journey with me. On the other hand, I guess I am also fearful of men’s judgement. I do not want to be looked at differently, I am unwilling to be the subject of discussion and I want my privacy. It is safe.

God did not call us to live a safe life, but a life that conforms to His Sovereignty and one that displays His Glory. It will probably take me a lifetime to fully understand Love, God’s kind, but I was challenged. I was challenged to put what I have learnt in the intellect to practice. I was challenged to now act on what I proclaim to believe. Just like Job, God chastised me. He has called me into a place of full submission, worship and forgiveness. He has also called me into His Love, to taste and see Him. God’s love is too wonderful beyond comprehension. His Love sent Jesus to the Cross. His Love allowed Lazarus to die and then be resurrected, His Love allowed me to go through pain and suffering SO THAT I may be led to the full and endless experience of God – which I was created for. And in doing so, I am given the opportunity to display His Glory. Now that is hard to swallow right? Welcome to the club.

With all these things floating around my world, God lead me to Isaiah 55, vv 10-13 (NASB)

“For as the rain and the snow come down from heaven,
And do not return there without watering the earth
And making it bear and sprout,
And furnishing seed to the sower and bread to the eater;

So will My word be which goes forth from My mouth;
It will not return to Me empty,
Without accomplishing what I desire,
And without succeeding in the matter for which I sent it.

For you will go out with joy
And be led forth with peace;
The mountains and the hills will break forth into shouts of joy before you,
And all the trees of the field will clap their hands.

Instead of the thorn bush the cypress will come up,
And instead of the nettle the myrtle will come up,
And it will be a memorial to the Lord,
For an everlasting sign which will not be cut off.”

God’s word will not return to Him void, without accomplishing what He has desired and without succeeding in the matter for which He sent it. The same word which had been spoken over me over and over will not return to Him void. It is finished! Instead of the thorn bush, a cypress, known for its longevity, durability and fragrance will come forth. It will be a memorial to the Lord and an everlasting sign which will not be cut off.

I still have no idea on the manner in which His word will come to pass but my heart is satisfied in Him. The verses speak of a permanent and everlasting changed state. It speaks of an evergreen oak that will be a memorial to the Lord. May my life be that ‘memorial’ that when people see me, they see and be reminded of God and His Glory.

How does that work?

So I asked God earlier this year to sort of my “Participation”. I further asked the question regarding the kinds of fruits my life will produce and “How does the Jesus loving me look like?”

Be very prepared for surprises for God answers prayer in much unexpected ways. His ways are always higher than our ways. In the process of sharing my pains with another, I was invited to open up my life, specifically my journey of pain and suffering with the local community, as part of the Body of Christ (WHAT?!). The invitation was to document my prayers and reflections, in sharing, so that the community can follow, pray with me and witness the Glory of God through all these. With an open invitation like this and the Spirit working within me, I could not bring myself to say no. While all of me is screaming NO, I thought I will respond (with risk) this time, so as to not deny the work of the Spirit and to put faith in action. I was reminded that while I have been crucified with Christ, I have nothing to lose but everything to gain.  After all, I exist to bring Glory to Him. May I learn the unforced rhythms of grace.

“How am I to participate?” “How does a Jesus Loving me look like?” I asked… 🙂

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11 years

Today marks the 11th anniversary since the day I was given a new lease of life. 11 years ago, I underwent a total hip replacement (THR) surgery. I remember entering the operating theater full of joy knowing that with this provision, I will be able to be mobile again. I’ll be able to move around in a painless manner for once. It was an answered prayer – a new right hip.

11 years later, I find myself facing the prospect of another THR in the near future. The steroid induced avascular necrosis (AVN) of the hip, a side effect to the treatment I underwent 13 years ago for a lupus flare in the form of ulcer pyoderma gangrenosum had progressed. The x-ray at the orthopedics 3 months ago confirmed the Stage 4 AVN. The death sentence had been pronounced and the only treatment option is THR. I knew this all along but had been in denial. For the last 3 years at least, I had been doing whatever I can in order to prolong the lifespan of my left hip with a hope of a miracle before the pain reaches a level beyond my tolerance. However, the mortal body cannot escape the reality of sin and continues to decay.

So how am I different from 11 years ago? I can definitely feel the effect of aging but that is another blog post altogether hah! 11 years later, I am still me. Still battling the same disease but with a few more organs affected this time; still popping tens of pills everyday but had learnt to organise my pills more effectively with an AM-PM pill organiser; still am tired and in pain but had learnt to pause, rest and say no to things; still sustaining a damaged hip and limping in pain (yikes! I finally admit it, but still struggle to accept it) but this time on the other side; still surrounded by loving people and still making my mother very worried. Most importantly though, I am still hopeful despite everything but this time with a slightly clearer sense of what this life is about. I have a story to tell in Him

Life is in no way a bed of roses. Jesus promised that “Here on earth you will have many trials and sorrows”, but He did not stop there. “But take heart” He continued,”… because I have overcome the world.”

“For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. For the anxious longing of the creation waits eagerly for the revealing of the sons of God.” Rom 8:18-19

from an unwelcomed news to an open invitation

About 10 weeks ago, through a heart-to-heart conversation with a friend, I embarked on a journey of a more intentional journalling to help revive the “deadness” in my life. 10 weeks in… it has been rewarding. God speaks as much and as often as I had allowed and made space for Him.

The conversation was initiated in response to how I felt that my body was falling apart (more seriously) since April this year. I was in pain in so many levels due to Lupus and my Stage 4 avascular necrosis (AVN) of the hip. The routine of getting up in the morning and getting myself onto my routine is a daily struggle.  My movement is restricted in all levels and sometimes, it hurts even when I am not doing anything. I wrestled and struggled to reconcile my reality with the recurring Word spoken over me repeatedly over the last 2 years, that:

“… I (the Lord) will restore to you the years that the locust hath eaten, the cankerworm, and the caterpiller, and the palmerworm, my great army which I sent among you. And ye shall eat in plenty, and be satisfied, and praise the name of the Lord your God, that hath dealt wondrously with you: and my people shall never be ashamed. And ye shall know that I am in the midst of Israel, and that I am the Lord your God, and none else: and my people shall never be ashamed.” Joel 2:25-28.

“… the Lord will restore to you all that you’ve lost, double! Just like Job” (ref Job 42:10).

I am no where near in fully understanding how His word will come to pass. I have more questions than I have answers. And just as I was beginning to muster enough faith to walk this through courageously, I received another piece of heart shattering news on 19 July 2016, from the doctor. The reading of my 24-hr urine protein over the last 6 months had suggested a disease flare up, attacking my already affected kidneys. This wasn’t what I had expected. I had been working so hard taking care of myself in the last 5 years and my condition had been improving. I had managed to cut my drug intake by half since the last flare. While I had been experiencing a decrease in energy level and an overall increase in the level of discomfort, this ‘black and white’ judgement statement was hard to swallow.

I had refused an increased dosage of prednisolone, as it was the drug that had killed both my hip joints and one shoulder joint as one of the side effects to the drug treatment. I spent the last 5 years slowly decreasing my prednisolone intake to a low maintenance dosage, finally gotten rid of my steroid face, and I reject any possibility of the same drug further damaging my affected joints and other currently unaffected joints.  I think I must have intimidated the doctor when I reacted with “With my AVN you want me to take prednisolone??!!” haha! (i was attended by a junior medical officer (who did not read my medical history!!) as my long-time Rheumatologist was on long-term leave taking care of her ill mother). Well it is not the first time I challenged the doctors who attended to me. They really should read patient’s history properly before even suggesting any treatment. In any case, (probably because I was too intimidating with my very fierce neutral face and a subconscious stare that is known to kill), they adjusted the dosage of 2 other drugs instead in hope to control the disease activity. First time in 5 years 😦

With that, I am due back for another review in 4 weeks time. If test results are still bad, I will be ordered for another round of kidney biopsy to assess the damage and then find alternative treatment. Possibly the cancer drug cyclophosphamide which was the original drug they wanted to put me on 6 years ago during the onset of my lupus nephritis. I hope not. Hoping for a good test results when I return in 4 weeks time (16 Aug 2016). Hold hope with me.

As I was sharing the current episode with another close friend, I was invited to document my current  journey, as part of the Body of Christ. The invitation was to document my prayers and reflections, in sharing, so that the community around me can follow and pray with me. The decision to say yes to this invitation to open up in vulnerability was also in response to the working of the Spirit. Suffering and pain provide a chance for others to witness the workings of God and an opportunity for community to learn to carry the burden and joy of another. While I had been very private in my journey of suffering, I thought I should respond (with risk) this time, so as to not deny the work of the Spirit and compartmentalize yet another piece of knowledge into a nice piece of intellectual knowledge.

As I risk opening up my life, I know I will be judged by men. I ask not for your sympathy but your grace and compassion. I pray that through this, the Sovereignty of God be reflected and that His name be glorified. Come what may, may my suffering finds its purpose in God.

He has me. He has my heart.

“He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.” Ecc 3:11