I recently learnt that healing is circular instead of linear; that was quite astounding for me. There’s great encouragement and wisdom in that school of thought. I found myself experiencing setbacks in the midst of progress periodically. Those moments can be discouraging but when seen through the lens of a circular healing journey, it’s quiet empowering. Setbacks just meant it’s time to take a pit stop and evaluate. It becomes a circle of learning more of myself and the condition. With every circle of learning, I also come to appreciate myself and the whole journey more deeply.
In an older post, I elaborated the importance of celebration. Living celebration through my healing journey from Myasthenia Gravis (MG) has been a great experience of affirmation. We started celebrating from the moment we’ve got a confirmed diagnosis as we finally knew what we are up against. When I was discharged, we celebrated with a good meal. I remember vividly how nervous was I when I finally started driving again. Thanks to the lockdown, the option at that time was me driving out to collect donations of expressed breast milk (EBM) for my child. We were blessed to have generous donors who helped us through those early months of fully breastfeeding our child. I knew my limit very well at that time, so there were great planning involved – with full gears of sunglasses and hat plus praying really hard for an overcast morning. I came back within an hour with new supply for the baby and feeling victorious. We celebrated that big time as it was real progress and such a great milestone.
Then came the time when I started on the steroid dose reduction, it was a happy day and great celebration. After a few months and was almost off steroid, I started having regression. It was quite discouraging but I did not allow that to stop me. Pushing through with a good mindset and a strong network. I was still experiencing a fair bit of symptoms back in Dec 2020 but we decided that my birthday is a good day to celebrate. Every initial disappointment after the doctor’s visit was being treated as an opportunity to find a better remedy for me.
Having friends that introduced various natural remedies to me is a true blessing. I am glad people are open and they know me well enough to be confident that I take responsibility for my decision whether to try the remedies they introduced or not. The values that I believe in and live by has also been a navigating post for me. I cannot imagine missing out on good remedies just because of being a scary blamer that absolutely nobody dare to recommend anything. Being daring to try stuffs (some of which did not work) is certainly something worth celebrating.
Celebrating progress keeps us going and it makes the journey pleasant. Dear friends, I encourage you to be creative in your celebration keeping in mind that this is not just a reward system. Celebrating yourself is directly celebrating the One who made you. Think about it, who gave you the grace to see goodness in the midst of darkness? Who enable you to work through your issues? Who is the happiest when you are happy? My answer to those questions: none other than God. I wish you a great time honoring your Creator by celebrating you.
A very important but seldom talked about element when it comes to bodily healing is mental health. We are a whole being, therefore mental health is vital for any healing journey. It was clear to me one of the biggest aggravator of Myasthenia Gravis (MG) in me was chronic unmanaged stress. Hence managing stress and regulating my emotions became a primary goal. I learnt to let go of a lot of unnecessary worries, grudges and heaps of things not in my control. I began to set better priorities and strengthen my boundaries all the while learning to live with MG as well as learning to mother.
What helped me to stay on the course was an overall healthy mindset. I am determined to beat MG and thrive in my life. I know well the reality may be difficult at times, not denying it in a bit. It was tempting to get into a pity party when symptoms hit hard. In all honesty, symptoms are discouraging and hard to live with. I felt like I want to get over and done with it fast whenever it hit me. However, there’s a hard reality that my body needed the time and conducive environment to heal. So, bouncing between “yes, I got this” to “I just want to give up” were common occurance especially in the beginning. I am so blessed to be surrounded by people who support me in this journey, constantly reminding me who I truly am.
Those reminders were fuel for me. Every time I felt beaten, I face the giant instead of running away from it. I allow myself to acknowledge how I felt and also decide not to stay in that low state for too long. How do I rise above the feeling of defeat? – that has been a question I asked myself over and over again. Friends, this is where it is so important to have someone (or a few people) you trust that you can share your life with. I have a few people that I share deeply with; just being able to talk to someone who love you for who you are, is healing. It would be extra awesome if the one you share with is able to just listen and ask you meaningful question. Effective questioning practiced by coaches has power to unlock certain perspectives that would otherwise be blind to us.
In our fast paced world, so many of us lack the time to even be present to ourselves. Some of us due to childhood trauma may not even know how to regulate our emotions. When I was on the peak of taking steroid as a means of MG disease control, my emotions were so messed up. I cried for small matters and it was hard to even regulate my emotions properly. Thank God my husband was really understanding and supported me through those tough times. This is where having some tools in hand would be helpful. When we feel a certain uneasy emotion, it is important to take a pause. A simple way that I practice is to first name the emotion, then ask Jesus how would I like Him to minister to me at that moment?. These kind of pauses helped me to calm down. With a calm mind, then I can tackle the source of those uneasy emotions. From then praise will rise. In the same way, I think it is also good to take a pause when good emotion arises – just taking time to thank God for the blessings and share that moment with Him. I am pretty sure God loves celebrating with us.
Whatever journey we are on, the path would sometimes be smooth and sometimes there are potholes on the road. Whether it be a nicely paved road or some bits where we are met with holes, always remember to look up – I bet the view is beautiful. Dear friends, I wish you a great adventure in your journey. If you find it particularly hard at this moment of your journey, reach out to someone – a family member, a true friend, a coach or a counsellor. Please share your life in all sincerity because it is normal to want to be known by someone. Indeed it is very good for our mental and overall health if we are able to allow ourselves to be truly seen and heard. I leave you with this quote and pray that you are blessed in your journey.
One common outcome I observed from coaching is the client’s shift from chaos to ownership of their actions. This eventually lead to a happier life as they embody a lifestyle that empowers them to self responsibility. They no longer see the surroundings as disadvantaging them, rather they are empowered to take the responsibility for the actions towards their wellbeing. In other word, self ownership is a major step towards meaning in life. When it comes to my healing journey, self ownership plays an important role for me – it shifts my perspective and energy towards the important and necessary. When I first got the diagnosis of Myasthenia Gravis (MG), the question I asked myself was: “what needs to happen to give me the best chance to beat this?”.
That question was the beginning of a creative journey of exploring my options. I left the hospital with prescription medicines, some advice on managing the symptoms with the prescriptions and nothing else. Lifestyle change, diet and management of stress was never mentioned. Thank God I have people who were experienced in managing other autoimmune with diet who immediately suggested that I research on the right diet. From our observation, autoimmune seems to be triggered by chronic stress, environmental change and sudden diet change. So, that became the first point of research.
There were so many articles and so little information about healing MG naturally. So a lot of decision were made based on the little knowledge we can garner. The first step was making a change in diet. My best decision was to cut down on sugar and carb. About 9 months afterwards I was so grateful I made that change. Turned out one of the side of effect of steroid is insulin insensitivity. My blood sugar was on a rising trend though still within limit. When we saw the trend, my doctor then asked me to cut down on sugar and carb. Imagine if I did not make that move earlier on! It also help as sugar worsen the symptoms for me, so it’s easier to say no.
Apart from diet I also explore the option of natural remedies that would support the healing process. MG is so rare that I never hear testimonies of any products that helped. I came across products that helped other autoimmune diseases and was very keen to try. Everybody asked me to consult my neurologist before trying anything out which is a safe move and I thank God my doctor is a very open minded and respectful person. When I brought the idea of trying the herbs out, his response was so encouraging. He told me he has no experience and the only way to find out is to try it out. If it doesn’t work, just stop it. I shared this experience with a friend of mine who is healing from another autoimmune disorder, his response was: “good on you, your doctor is very open minded and supportive”.
That is the right patient and doctor relationship. I recently came across so many instances where the opposite was true. It is utterly unacceptable that some doctors telling the patient to either listen to him/her or go home and die when the patient raised some concern. This is where we need to draw the line as patients. Something important to bear in mind is that your physician is responsible to help you co-manage your disease and you are responsible for your own well being and health. Get this, your attending physician is your hired hand, they work for you not the other way round. They are hired to provide professional opinions but it is still up to you to accept it or not. That’s why when things doesn’t feel intuitively right, it’s wise to seek second opinion. After all, informed consent of procedures and prescription drugs is the right of every patient.
Hence it is very important to NOT place your doctor as your ultimate health authority. They are also human and they like us can also make mistakes. Remember that God is your highest authority, with that set right you’ll discover great freedom in within you to listen to your body and you’ll also find creative ways to honor your God given body that has an amazing ability to heal with the right condition.
Some of us may have heard stories of people given the diagnosis of cancer and was given a “death sentence” by their physician who say that they only have a short period to live and the person really die at the predicted date. We know that death and life are in the power of the tongue (Proverbs 18: 21), hence that makes it even more important to know God is your authority. I was told I have a malfunctioned immune system at the beginning of the diagnosis but my immediate reaction was: “No, that’s not the truth and I refuse to believe that”. I said a prayer breaking those words and bless my body instead. I proclaimed to me that my immune system needed time to heal. This gave me great inner strength especially on difficult days that I could not even hold my eyes open for 10 seconds. Through the difficulties I still believe my body is amazing and has powerful ability to heal itself.
Another important responsibility of a person on the healing journey is to ALWAYS do your research and keep learning about the condition. Absolutely no one on this earth knows everything, even so called experts do not know it all. You are supposed to be the one who knows your body best. Unfortunately for some of us (myself included), we can be quite disconnected. When our body show us a symptom, our modern attitude would likely look for ways to suppress the symptoms like popping paracetamol whenever there’s a headache without even stopping to think if our body is trying to tell us something. Taking the symptoms seriously can help us to navigate our healing journey. Whenever the symptoms improved or worsen, I asked the question: what has been done differently? I go into all investigative mode just to make things a little fun for myself. That would give me a good way forward on what to continue or what to avoid.
Continuous education and openness to try different things has led me to a season of great progress in healing. I learnt to be patient with myself as most natural healing remedies take time and there bound to be some progress and some regress. That has been my experience with Terahertz treated water. I was initially drawn due to a lecture that pointed out our healthy cells vibrational resonance that is similar to the treated water, hence that would slowly promote healing with effective hydration. I tried it because it made sense to me and I took full responsibility in doing so and praise be to God I’ve been responding well to most of the remedies I tried.
It is really empowering to be more in tune with my own body especially when I can tell what works and what don’t. I did not choose to be sick but I chose to get the most out of my season of healing and celebrating every step of the way. Every medication weaned off is a great cause to celebrate. Every improvement on my eyelids strength when I drive is a great occasion to offer highest praise to God. I refuse to own the disease but I am owning every bit of my healing journey.
Dearest friends, have you stopped to think how in tune are you with your body? Do you agree that bodily health gives us the freedom to live out our calling more fully? Be encouraged therefore to take ownership of what you do with your body. Take time to read labels of food ingredients and discern well what you allow into your body, medication included. I pray for a great healing journey as well as a blessed journey of self discovery. Most importantly trust your God given body because your Creator designs well. May you be blessed.
June is the month dedicated to the awareness of Myasthenia Gravis (MG) and it has become really close to my heart being on my journey of healing from Myasthenia Gravis. Yes I know the general consensus said that the condition has no cure but I choose to trust in my body’s ability to heal. MG thrivers are sometimes called snowflake warriors for the fact that every case is unique. That pose a challenge of its own as there is no certainty or a good pattern as reference. I have taken the path of looking at my unique condition as an opportunity to experience fullness of life in ways I would not have explored otherwise.
When I was given the diagnosis in Feb 2020, my world was an utter chaos. There were so many things that I needed to consider and to take care of, all at the same time giving myself the best chance to beat this. Not only my world was chaotic, the world around me turned into a real chaos with the lockdown and restrictions started to affect our lives shortly after I was discharged from the hospital. The looming fear at that point of time was intense and I can feel it in the atmosphere. If anything you need to know about autoimmunity, extreme stress is very bad for any autoimmune condition. Mine was triggered by a prolonged period of unmanaged stress plus sudden change of environment. It is also known that people who are immunosuppressed like myself are categorized as being high risk of viral infection. So it was natural of me of being fearful.
I was just beginning to navigate life with a chronic condition and then this virus chaos came about. Fear was all over the place and I was not spared from it. Fear causes stress that worsen my condition and it’s very easy to see how bad it affect me. So I made a conscious decision since being out of the hospital to manage my stress well. This fear business took a toll on me as almost everyone around me were fear filled about the virus. I reached the tipping point real quickly and decided that fear is no way of living. It was sucking life out of me and I did not like it. In my desperation for life literally, I called upon the name of Jesus and asked Him; what should I do? How do I live?
“Let your faith be bigger than your fear!”
That was all I heard and that was enough to propel me forward. The first strategy of winning a battle is to know the enemy and that’s where I started – naming my fear. It was not hard to name them as the first and biggest one that came out was the fear of death. I feared death after escaping death not too long ago. I feared that an infection may kill me because at that point of time I was swallowing 20 tablets daily; a majority of which were immunosuppressive drugs. That would made me really vulnerable. Nailing this fear to the cross and charging forward in life with faith was my experience of saving grace. I have confidence and courage that I will live and thrive. Proper precaution taken, the rest is trust and choosing to live in joy. After all, my health is my responsibility, I personally think it is unfair to put my health risk as a burden for the rest of the society. Praise be to God for His protection; all through this year of healing I have regained strength and is rarely sick.
Putting fear in perspective is an important element in moving forward. The way to do that is to seek the truth about the specific situation. We know that the truth will set us free although it is likely to be uncomfortable. Let’s look at some comparison: if you catch a cold, you know that the chance of you recovering and healing is more than 99%. With that knowledge, fear is by logic small in comparison. The inconvenience of being unable to function optimally for a few days that may bother you more than the fear of death. In my situation with MG, nothing was certain. When I was administered with the rescue medication, there was no guarantee that it will work on me, we hope I respond which I did (with no side effects). Same with the maintenance medication, we can only hope I respond, which I also did until we adjusted the dose. When I asked if a remission is possible, the answer I got was “I can’t tell you for sure because MG is so variable. Some patients get into remission and it came back again, some get into permanent remission and some never get into remission”.
With such variability and uncertainty, it was very easy to despair and let fear grip over my life. But I knew this very clearly, fear perpetuate stress and stress worsen the symptoms. Given the situation, although saddened, I made the choice to live in hope. If some people get into a permanent remission, I shall be one of them. The choice I made to live in the fullness of hope and life carved my way forward. I took actions that would give me the best chance to get to the remission. A massive change in lifestyle was required – diet, habits, routine etc. It was a sharp learning curve to be in tuned with my body again. I realized how brainwashed I was! And that was uncomfortable! One great thing coming out of this healing journey is the deepening of my empathy towards myself as well as to others especially those who could not see a way forward in a fear saturated world.
Being able to face my fears with the truth and knowledge in hand and then move forward in faith has been a great blessing. I live in freedom precisely because I never allow the disease to define who I am. I admit it is not the easiest of journey and fear does creep in from time to time. I allow my self to process the fear and then to formulate the way forward with my Saviour. All this is possible thanks to my years as a coach and also those years in ministering to people as well as support from my inner circle.
Fear is a constant companion whether we like it or not. Some are necessary like in the case of meeting a tiger, you better let your fear propel you run for your life. I would say most fear we face today are opportunities if we allow them to. Dear friends, if you are having difficulty in navigating fear and are feeling stuck, do feel free to reach out to me. I run my own coaching practice and I can also recommend other coaches or counsellors to you. Know that it is my prayer for you to be well. Fear does not have the final say and it is possible to live victoriously. May you be blessed!
It was a bright and beautiful morning but the symptoms of muscle weakness has been worsening. We were planning to go back to my General Practitioner and then head out for our delayed Valentine’s lunch afterwards. As we arrived at my GP’s clinic, we decided that I would go in to check if she could see me (it was first come first serve with a limited number basis pre covid era). Unfortunately she could not see me, so I walked out to wait for my husband to drive by. When I saw him, I took a step down to the road and fell flat on my face. My husband saw someone fell but was shocked to find out it was me. I could barely lift myself up. That incident propel us to go to the hospital that very day.
For a year now, we are very grateful that the protection of God was upon me and still is holding us tightly. Just days before the incident, I saw my chiropractor for a different issue and told her what happened. She checked me and found that my muscles were fine. She also told me if things worsen, go to a neurologist because that would likely be nerve problem. Looking for a hospital with a neurologist was made easy thanks to a dear friend of mine who worked in that hospital. After checking in to the hospital, a brain MRI scan was ordered immediately to rule out stroke. No stroke but Myasthenia Gravis (MG) was given as a preliminary diagnosis. My neurologist needed to confirm the diagnosis through a nerve test and that was only available on weekdays (it was a Saturday when we checked in). We decided that we will go home and get back to the hospital on the following Monday for outpatient consultation.
My condition worsened to the point that it was difficult to breathe and that got us to decide to admit me the very next day. The difficulty in breathing freaked everyone out. My neurologist initially thought he could treat me as outpatient but when he saw me the following Monday in the ward, he ordered the nerve test to be done immediately and rescue medication to be administered right after the test. The nerve test result baffled my neurologist so was the ultra high autoantibodies level. MG is so variable that he could not predict what would happen to me, his only hope was that I respond well to treatment and hopefully I can get into a remission.
Ever since my diagnosis, I have learnt a lot about MG. The variability and uniqueness of each patient’s condition are just simply mind blowing. The more I learnt the more I am in awe and grateful for the goodness of God. I was literally days away from a myasthenic crisis. If I had been a few days late and got into a crisis, I would have needed intensive care and intubation would be necessary because MG also affect voluntary muscles including those for breathing. Those thoughts brought tears of gratitude and just filled my heart with praise of God. He is really good to me. My autoantibodies level was 200 times above the minimum trace level, an 8cm thymoma was present and the nerve test was horribly failing. Who could have saved me from the worst if not God?
From the beginning of my journey of healing I’ve sensed the Lord assurance of His presence and love. He meant this for His glory and for my good. Living with MG has brought me to a place of even higher praises where I learnt about surrendering in victory. I name this a process of spiritual healing that affects my physical healing. One of the greatest victory is my ability to let go of my burdens. A dear friend of mine lovingly reminded me to let the One who loves me most carry those burdens I was carrying. From the beginning, I’ve recognized stress as a harmful trigger to my symptoms, what I did not recognize was how much stress I put myself through. Motherhood was new, I did not realize the years of living in the lies of the world has dampened my ability to connect to my natural maternal instinct. The rejection of genuine womanhood in my surrounding has chipped away my own natural womanly instinct. It was stressful when most of the voices around me were literally telling me what I’ve done wrong as a mother. I began to shut everything down and was determined to reconnect to my heart again on top of all the stress of new motherhood. Not only that, I was also malnourished but I just did not realize it back then. When my body could not take it anymore, it broke down to bring me to a place of clarity again. I regretted my lack of care towards my own body and I apologize to my body, made a promise that I am going to take care of me seriously.
We took so many actions to give me the best chance to beat MG in many aspect like changing diet and lifestyle. Even our prayer life changed for the better. For this post, I’d like to focus on the blessings of prayer. I initiated a 54 Days Rosary Novena for my healing on 19 March 2020, the Feast of St. Joseph. I was daring enough to ask for a forever remission to happen on 19 March 2021. My prayer journey with the support of numerous people has blessed me tremendously.
I’ve improved so much and am now on the last leg of steroid dose adjustment (I am still on high dose of immunosuppresant). The most stubborn symptom that remain is ptosis. Throughout the year of good days and bad days, I’ve remained positive and hopeful thanks to the grace from prayer. Then finally in mid Jan, I started experiencing more symptoms free days (I’ll share more about it in the next post), my boldness to hope for a full remission also increase.
Meanwhile the current climate of what’s happening in the world is pretty chaotic. We see a greater need to pray even more fervently. By Divine Providence I stumbled upon a video talking about consecration to St. Joseph by Fr. Donald Calloway. I’ve wanted to do it last year but MG was just overwhelming (plus another major drama of my brother’s hospitalisation), so when reminded about, we made a decision to do it this year. I wanted to consecrate on 19 March 2021 and my first action was getting the book early Jan but it was on restocking list that may take up to 5 weeks to arrive. We bought it in faith hoping that it’ll arrive on time.
Praise be to God, we got the book on time and when I realise the significance of the date to begin the consecration journey, I was awestruck. It begins today, 15 Feb – the anniversary of that fateful day I fell flat on the road. Wow!!! The love of God through our Spiritual Father, St. Joseph moved my heart to praise Him. I felt so loved and it’s like St. Joseph is assuring me of his prayer. How awesome is that!!!
I am feeling hopeful! Photo Credit: Karen Soh
Dearest friends, I pray that you are blessed by my story. I believe our personal story is a unique and exciting one when we see it from the perspective of the One who love us most. May the coming Holy Season of Lent brings grace upon grace in your life and may your story be one that bless the people around you.
Many of us would agree that the year 2020 has been a real mixed bag on high speed. Everyone is affected in one way or another. It has been really heartbreaking to see people losing their livelihood and my biggest personal heartache is the lost of communal worship. It’s really complicated and the complication somehow pushed me to a book on my shelf – Consoling the Heart of Jesus by Fr. Michael Gaitley.
I was desperate and how blessed am I, due to that desperation. Given my daily rhythm with an active toddler, I did the retreat very slowly. One small chunk daily with the time I squeezed in during my daughter’s nap. The grace I received has been so abundant and I am just living in gratitude daily.
My daily connection with Jesus has been really rich ever since my DIY retreat. As the title suggests, consoling the heart of Christ becomes my daily “work”. I just come to the suffering Christ as I am in all my being – the mixed bag of my virtues and vices; offering him my little bit of presence as His friend. This in turn raised me up to praise His goodness.
So this particular December day was a tough one. My symptoms worsened and things were just not how I planned it. I was frustrated! Somehow grace comes flowing while I was nursing my child. I was sort of forced to stop with everything and just pray. And then there I went again, complaining instead of consoling but somehow grace overshadowed me. I decided to just be still and gaze upon the wounded and suffering Jesus. As I gazed on, I saw a pattern in me that needed redemption.
The pattern of my complain was an accusative one – my accusation that God did not answer my prayer. It has been a struggle of mine for a long time. Instead of judging me, Jesus brought me to the reality of His “neediness” – wounded, scarred and in need of a friend. I was quite struck by that image. That in turn brought me back to Feb 2020 when I was first diagnosed with Myasthenia Gravis (MG). After being discharged from the hospital, I created a fund raising page with an intention to create awareness mainly because prior to my diagnosis, I have never heard of MG. I gave a face to MG and at that point of time, it was also very important to raise enough money and to raise more awareness about this autoimmunity. I wasn’t thinking much back then or rather I did not have much capacity to think at that time.
During that grace filled time of prayer, Christ showed me what kind of face was I wearing back when I was first diagnosed – a needy face and probably quite sorrowful too. I was in need and I did not hesitate to reach out for help. I see the generous face of Christ in the people who supported me financially and through prayer. Little did I know back then, I was also a face of Christ – the needy and poor face of Christ. It was like scales came off my eyes and I felt humbled.
My mighty able self does not like to be needy, always prefer to give than to receive. Bu here’s a reality: there will be no giver if no one is willing to receive. Jesus humbled me to my knees and I realized that I have never wanted or like being a sorrowful and needy face. I also do not enjoy being needed, which is such a big lesson after the birth of my child. Now I am given the grace to embrace being needed and being needy with healthy limits.
Being the needy sorrowful face of Christ is also a beautiful face of Christ, a face to be desired. Sharing this reflection with a dear sister of mine led me to realise something deeper. Have you ever wonder why we have an affinity towards helping the poor? In the past helping the poor gives me a mood boost, always leaving feeling better after an outreach to a poor village. But deeper than that, our conversation left an even more profound reason – the poor face of Christ is the touchable and reachable face of Christ. I acknowledge that our preachers and community leaders are also faces of Christ but sometimes they are not reachable or touchable. I remember a sharing from a friend about his community leaders who are an amazing couple but being the leaders, my friend felt at that time, it was so hard to even talk to them. He literally felt they were high up there, too good to touch although that was not be the case. This revelation left us both so deeply encouraged. I am so grateful for the this beautiful lesson the Sorrowful Face of Christ taught me.
Dear friends, oftentime we are called to be both the Loving and Giver Face of Christ as well as the Needy and Sorrowful Face of Christ. Both are to be desired! Whichever we are called to at any season, I pray that we are given grace to carry that face lovingly. May you enjoy being the ambassador of Christ.
July is a month packed with important celebrations – from celebrating lives of loved ones to remembering a very important starting point.
The story began with a promise of resurrection at Easter of 2017 after spending 3 years in “death”. My season of death began when my father passed in 2014. Everything I knew and was good at was literally stripped away from me. In obedience to my loving God, I gave my yes to every step He led me to and that included tonnes of discomfort being broken so that He could rebuild me from a redeemed place.
So when I heard the promise of resurrection, I jumped in joy and God in His loving kindness confirmed that promise with tangible signs. Good Friday of 2017 was one of the most painful experience of allowing my all to be buried with Christ. As I rose with Christ at the vigil, I experienced something really wonderful and beautiful. It’s like Christ when He rose – wounds were visible in a glorified body. That’s the best I could word it. I experienced a sense of renewed joy with all my wounds visible; my sense of confidence was renewed and I felt I was ready for more.
That was also the year of decision as my formation programme was coming to a close. The sense of invitation to stay in New Zealand had been lingering for a long time and I had also been resisting it for as long as the invitation began. I knew fully well at that point I have not reached the state of holy indifference and I want to be in that state to make my decision. Hence from Easter onwards, I was occupied with God’s dreams for me and possibilities ahead. I felt it’s time to spread my temporarily clipped wings.
In the excitement of going deeper in my calling, the thought of state of life vocation did cross my mind. That thought somehow led me to remember a friend of mine who met her husband in her 40s. I made a conclusion that if that were to be my case, it’s a long time away. Since I’ve waited long enough by then and the wait ahead is going to be a long time, why not enjoy my present to the max and live my calling to the fullest?
With that mindset and attitude, is there any wonder that I was oblivious when the man who would become my husband reconnected with me? It was early July and I later found out the reason he reconnected with me through our Young Adult Prayer Meeting was in response to an answer he heard from prayer – Irene (he was asking God: where is she?). There began our friendship and I was still oblivious until my community members started pointing it out to me – some very directly and some too subtly that I did not get the cue.
My new awareness did not change me much but the events that followed led my now husband to ask me out at end of July. I responded with a yes with the intention of getting to know him better and if I don’t like him at the first date, I can say no the next time round. Turned out I liked him and that led to many yes to follow.
The First of Many
The first month of us seeing each other was packed with special events like my first Marian Consecration Journey and my silent retreat for the close of my formation programme. I was just enjoying our dates and getting to know this amazing man better. Then a serious “now what?” question popped up in prayer after our 3rd date when I realized he shared my principle. It’s a very important element for me. People who know me well enough often describe me as a strong woman. I am indeed quite a strong woman both in character and in my conviction. Sometimes too strong in my opinion that my facial expression spoke before my mouth.
Falling in love with Jesus and deepening my faith journey has led me to be convicted with the teaching of Christ. One of them being authentic Christian marriage according to St. Paul (Eph 5: 21 – 33), hence it was crucial for me to marry a man who shares my principle because I want to honour him as the head of the family and be able to submit to him as my equal.
As the time came for my silent retreat, I entered that grace filled 8 days with a deep sense of love from God. I was ready to work it all out but my Lord and my God turned that into a loving experience of rest and restoration. Through that 8 days, I missed Hans (and he missed me too) and when the retreat ended, we made arrangement to celebrate together. The celebration led to the defining question about us which marks another beginning – the start of the pursuit of each other’s heart exclusively.
I remember distinctly sharing my story with a dear brother priest of mine and his comment was that it sounded like a fairy tale but this is real. Indeed it’s a beautiful story that I have allowed God to write. The bigger part of our individual stories were filled with great struggles and pain. Prior to meeting Hans, I spent vast amount of my time discerning and embracing my state of life vocation. After embracing the invitation to marriage, purification in the most painful way was a big part of my story. All these happened during my season of death and the biggest gift of my resurrection would be the gift of my husband.
Hans is certainly worth the wait although he wished we met each other 10 years earlier. Well, that’s how it’s written and we choose everyday to celebrate each other and to encourage each other in the path of holiness.
Dearest friends, if you are in your season of waiting, be encouraged to wait actively. Seek the Father’s heart and allow yourself to be loved completely. Your joys and agonies of the season are seen by our loving Father. None of us know how will our stories progress but one thing for sure is that God is faithful through it all. He writes your perfect story, are you willing to let him hold the pen?
My world was in a daze back in February when I fell flat on my face on the road before being diagnosed with Myasthenia Gravis (MG): an autoimmune disorder that attacks the neuromuscular juncture causing muscle weakness; including voluntary muscles used for breathing. The first thing I was asked from every person I talked to was: “Were you carrying your baby when you fell?”. Thank God I was not carrying my baby. It all started a little less than a month prior to that fateful mid February day, when I noticed difficulty in chewing my food. I thought it was the effect of me feasting away during Chinese New Year.
The symptoms got worse that I started making my food softer and did some research on what could be happening to me. MG came out as the top possibility. Reading more about it made me dread it and kept hoping that it’s not MG. My GP was hoping of the same but somehow my symptoms worsen to the extent that I could not lift myself up from sleeping position, chewing became increasingly difficult that often followed by slurry speech, lifting my arms for short while took a toll on me, smiling was a task and I was constantly exhausted.
Upon arrival at the hospital, the neurologist ordered a brain MRI scan to rule out stroke. MG was given as a preliminary diagnosis that was to be confirmed the following Monday (I went in on a Saturday), when the nerve testing centre is in operation. We decided to go home for the night and planned to be seen as outpatient on Monday. However, I started having difficulty in breathing. It was a scary evening, the what ifs were all over the place.
Sharing with community of friends who prayed for me certainly helped me through that evening. I received the grace to accept the diagnosis and to enter into treatment regime. Upon seeing me as inpatient, my neurologist quickly ordered the necessary tests to be done and had me started on IV immunoglobulin (IVIG) rescue therapy while also start me on my longer term treatment. I was blessed to have tolerated the treatment well. After the first dose of IVIg, I could tie my hair and that felt so good. A Chest CT scan also revealed the existence of a thymoma which means surgery is needed to remove it but that can only be done once I am stable enough.
My biggest worry was my daughter. How am I going to mother? How am I going to provide for her anymore? I enjoyed our breastfeeding journey and does that mean I need to stop altogether? God was so gracious to speak to me at that time by inspiring me to seek breastmilk donation. I am grateful we have a very good network of breastfeeding advocates. Through the group and through friends who helped out, I managed to source out enough donated breastmilk that nourished my baby. Till today she is still enjoying the benefit of human breastmilk thanks to the generous giving of our local Mama Tribe. My own breastmilk supply has suffered a great decline due to the treatment. Even if it is limited, I am still grateful my child still get something from Mama.
We recognized that strength is the major challenge for MG patient, hence we were quick to get practical help. My mother arrived the day I was admitted to the hospital which was such great help for us. She helped me with the baby and daily household stuffs when my symptoms was at the worst. We also arranged for cleaning company to clean the house. My mother’s stay for almost a month helped me to balance a new lifestyle. I was able to get the rest I needed and to get around organizing stuffs that would aid daily living.
At the peak of the treatment to suppress the autoantibodies and to replenish my strength, I was swallowing 20 tablets daily with the help of 5 alarms to remind me of the timing. On top of that, I also started taking specific health supplement tablets to aid with my body function as well as to counter side effects of treatment. The first month since the diagnosis was really blurry. I could only hold enough strength to play with my daughter. I was afraid to carry her in case my strength fail and she slipped off my arms. My emotion was all over the place partly due to the side effects of the medication. Normalcy were hard to imagine.
Days passed and then months, I started to feel much better. Looking back at the timing, I can testify to the goodness and mercy of God. After my mum left, I got help from my niece and sister for a short while. I’ve also got a friend to help out with cooking on some days. At that point I started to take back the cooking role at home. God in His mercy showed me His unique way of empowering me forward.
Due to the lockdown, we were short of an extra pair of hands after my sister went back to her home and also was locked away from hiring help for cleaning. By that point, my symptoms has started to stabilize to the point that I was confident to carry my baby with the help of a carrier. But I still occasionally feel overwhelmed and limited. So I asked God what was the best view to see my situation? God was quick to answer: “think possible and do what’s possible!”
It was a great place to begin. What’s possible were different on day to day basis. Some days possibility looked like a clean house and warm meals, some days it’s the grace to be grateful that the day went well with little done in the house. There were times possibility meant just being able to pray and connect to my Source through the demands of motherhood. The invitation was to enter to a place of trust and rest; and I happily accepted that invitation.
One of the first breakthrough was me driving alone to pick up my baby’s breastmilk donation. Heaps of preparation ahead of time and I was so pleased that I made it. Driving can be difficult as the bright sun tends to tire me and often resulted in ptosis (droopy eyelid). That fateful morning was bright as and I responded with praise because if God allowed it, then He must be planning to show me His glory.
Thinking possible and doing what’s possible has also helped me to recognized my own preference. I realized piles of chores can overwhelm me, so I start to manage household chores in bite size. Meals became simpler and priority to spend time as a family became our top agenda daily. As my baby grow, her needs also evolve and I am invited to follow her growth with an open mind. The abounding grace I receive through prayer has helped me to have enough time and strength to learn about supporting my child’s development. One of the most fun thing we have decided to apply is Baby Led Weaning method of introducing solids. I had so much fun watching my baby enjoying her food and growing in her fine motor skills. Through all these, the joy of the Lord is my strength!
What brought me through from the peak of my flare up (with the autoantibodies level 200 times above the positive trace) to where I am now; is this scripture;
do not fear, for I am with you, do not be afraid, for I am your God; I will strengthen you, I will help you, I will uphold you with my victorious right hand.
Isaiah 41: 10
A dear friend of mine reminded me to let the One who loves me hold everything up for me. That encouragement has helped me in my process of surrendering and that eventually led me to my rest in trust of the Lord. There’re still heaps to figure out and many are graces that I need. I pray that sharing my story with you will give you a sense of awareness about MG and that you are also encouraged to live in your victory through your circumstances.
Chaotic would be my word to describe how my prayer life looks like after the birth of my daughter. There’s hardly any structure and I am missing the consistency I used to enjoy, not to mention it is almost impossible to pray my favourite prayer – the rosary. As I reflect carefully on the word I used to describe my prayer life, other words started to emerge: raw, honest, desperate, HUMAN. Imperfectly human!!!
Although energetic by nature, I still like my life to have some kind of order. My daughter’s arrival brought great joy has also thrown me out of balance. It took me a little more than half a year to find my prayer bearing when I moved back to Malaysia; I really hope it doesn’t take too long this time round. My desire for control is pretty apparent but who doesn’t like having their lives under control?
I am basically pinned to my breastfeeding couch that face the little altar in my house. Great place to pray! I spent most of my day crying out to God for the lack of control in my life. The floor is dirty and I could not clean it; the toilet needs cleaning; the kitchen needs organization; meals needed to be prepared; the laundry needs hanging and folding and the list goes on. My honest helplessness of not knowing what to do and also my occasional meltdown from overwhelming emotions has somewhat become my prayer.
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Just recently my husband asked me to pray for his work and I was almost playful when I prayed in tongue. That playfulness reminded me I have a treasure in this gift of tongue. St. Paul’s letter to the Romans (Rom 8: 26-27) kept ringing in my head that the Spirit helps us to pray. The day I spent edifying my soul by praying in tongue was not the easiest day. Baby was extra fussy and extra clingy, not to mention wrists injury felt worst than ever. A stark difference I noticed on that day was my extraordinary calmness. My spirit cried out in sincerity and it helped me through the day. I can only thank God for His grace upon me.
Another treasure that I was reminded of was the examination of conscience. I realized I could do that while feeding my baby especially when woken up in the middle of the night. The examen has helped me to be more aware of God’s presence in my day – more aware of my own frailty especially when frustration gets better of me. This is where the design of God is just simply awesome. One night I was woken up by my baby needing a nappy change and she moved a lot while being changed. My injured wrists were not taking it too well. In my frustration, I told my baby to stop and frowned at her. She in turn gave me the sweetest smile. My heart melt into a smile on my face. That is definitely another occasion of abundant grace of God.
Dear friends, my prayer for you is that you will appreciate the grace of your season. May you always see the beauty of God’s abundance in your life.
Finally holding my child in my arms was a feeling that is beyond words. Our little one decided to come early and turned our world around. The idea of sleep deprivation and not knowing what to do became a day to day normal. It was truly not easy given the fact that hormones were also erratic and making my mind unclear. Tears of joy and then tears of defeat all come at once. Self doubt, spiritual warfare, lack of confidence, feeling at loss; you name it.
I thought I knew what it’s like or at least I thought I could imagine it well enough. Turned out that my imagination was not as concrete as the real experience. Never in my wildest imagination would I have seen conflicting idea of parenting would occur with my own mother. The reality of sacrificing for the sake of my child helped me to get a glimpse of what it was like for my mother to care for me as a little child totally dependent on her. I have the privilege of my mother helping me during the first few weeks postpartum; that was a great blessing as well as an opportunity for conflict to arise.
Some days were so difficult that made me say things I regretted immediately and some days were just too overwhelming that I could only cry. As I calmed down, I asked myself what was more prevalent? Gratitude for my mother’s presence or the occasional conflicts? I was overall more grateful for her presence. My husband wisely pointed out that I took most of what my mother taught me. There were just a few things that I stood my ground and not taking her way. Those were the stuffs that kept being magnified by the enemy; making me feel like a horrible ungrateful daughter.
The more I communicate with my mother, the more I see my own poverty. One instance was her suggestion to help my child sleep better. Due to lack of space in my home, I did not take her suggestion. After she left my place, there’s only me and my husband with our child. Between the two of us, I am the main caretaker and I quickly realized how valuable were the extra pair of hand. My child is not the best when it comes to sleeping, hence the idea of getting sleeping aid came into our conversation. I admitted to my husband that my mom made some suggestion but in my pride; I refused to acknowledge it.
After the conversation with my husband, I asked myself, what was happening to my heart when I refused to acknowledge that my mother was right about the sleeping aid. The words “I told you so” were sounding loud and clear. My whole being cringed to those words but how could I respond better? It was by the grace of God that I can come to a place of forgiveness, rest and acceptance. My mother was just trying her very best to be of service.
A few days after that, I told her about our decision to get sleeping aid and she was supportive; without telling me “I told you so”. That was one amazing work of grace! Threading through motherhood has taught me how much I do not know and how much I am dependent upon the mercy and grace of God. Learning from my experience with my mother I wonder if I would step on my daughter’s toes when it is her turn to be a mother? God willing, I guess I will find out when the time comes. Meanwhile, it is now time to be present in the moment.
The unsolicited parenting advice from other people is also a rather annoying thing we have to deal with. Everyone seems to be better in parenting my child than me and my husband. For this, we decided to not invest too much emotion in it. People has all the freedom to say whatever they want and I can choose to be polite and just take what is useful and chuck away what’s not. After all, my husband and I are responsible for our child not other people.
Now that my child is physically in my care, I can really say parenting is hard work. I come to appreciate every sacrifices my parents made for me. This new role of mine also opened up my heart to embrace the struggles of work from home mom. I used to think it’s the easier path until I became the main character in this story. Being so used have full control of my time, I am learning everyday to prioritize my child who is genuinely in need of me and whose survival depended on me. I want to give the best chance in life for my child and I want her (and her subsequent siblings hopefully) to grow up with our values. Hence, I am well aware that my husband and I are choosing the narrow path in such a time as this where single income household is almost impossible.
Our child has also inspired us to start a new venture with the aim to encourage parents in our parenting journey. We know now how hard it could be, so why not have some fun by seeing the lighter side of parenthood. Do check out Bountiful Potential for more info. Tell us what do you think about it and how can we serve you better.
We wish every parent grace upon grace as you raise children who are full of potential into great adults. May your journey be filled with joy.
Fully Alive 