Sitting with Emotions

 In a blink of an eye, we're in the middle of April 2023. 

In the past few months:

- we hired an amazing helper that has very much become part of our family

- we managed to get SHA registered which is a HUGE win

- I've been trying to go back to work a little bit more now that I am not caregiving alone

- I'm reconnecting with some friends from the past while maintaining the close relationships I currently have, and also trying to let go of some friendships that have fizzled out 

- despite our best efforts of keeping mom active (physically and mentally) and exposing her to social interactions, mom seems to be deteriorating. 

- my own health has been topsy-turvy as I experience all kinds of symptoms on a daily basis that it has pretty much become my "new normal".

Suffice to say, it's been a rollercoaster ride of emotions. I find myself just focusing on a day to day basis. It's also forced me to be very intentional and very self-aware of my limitations and capabilities. Really counting my spoons. 

Expectations of Self

As I was listening and observing conversations during a committee meeting I was in, I realized how much I tend to push myself - and I hardly question my frequent disregard of my own needs. My body has been literally throwing signals left, right and center at me, but I have been choosing to ignore them, pushing myself as hard as possible - especially when my to-do list seems unending. My symptoms have been flaring up more often, and the pain is getting more intense. I often have this sharp pain where my muscle tear used to be. Literally, i feel like my back is breaking from the strain. 

I feel helpless with my own situation... while i notice that i'm doing other stuff to feel some sense of control. I've barely been earning an income, but i've been busy with my initiative. Don't get me wrong, I love what i'm doing.. but i recognize that this is not sustainable for the long run. But sometimes I ask myself - how much time do I have left? And with the way I'm doing things, I may just be quickening my death. 

I notice that I'm quick to put on a facade. That's just me, really. I've been avoiding telling people about how I'm really doing, at times just oversimplifying what's happening or just sidestepping the question about my wellbeing entirely. 

The cracks in my system is becoming more apparent. It's getting harder to cope. :( 

The Beauty and Complexity of Life

Got to watch this fascinating movie with Kat recently, titled "Everything Everywhere All at Once", starring our very own Michelle Yeoh who did an awesome job, I have to say. After the movie, it got me thinking about how life would have been different if I made different choices, or if my circumstances were altered, even just the slightest bit. 

Sometimes I teether between the reality of my deteriorating body and being hopeful that my determination to live will help me conquer this "battle". But then I'm grounded by news of the passing of people who have my condition. And it makes me appreciate how life is really so precious. I know that many will say that being 37, i'm still young - my mind agrees but my body, not so much. But to compare myself with, say, an 8 year old child who lost his life to this disease, I've have the opportunity to experience life more than him. Both the good and the bad experiences, of course..

It got me to think, what if I was diagnosed earlier or if my illness progressed much faster when I was a child? I believe I would have very drastically different life experiences if that were the case. My life would have headed to very different tangents. My friends that I cherish with my life, may not even be present as I may not have had met them. 

That said, this could go on to an endless spiral of unhelpful "what ifs". But I'm thankful for the life experiences I've had so far. It's not been an easy journey, but again... I wouldn't trade the connections I've made with people I care deeply for. Sure, there are some relationships that have faded, some experiences that were painful. But that's the reality of being human. 

I know I have the tendency to fall into bouts of low moods, and to see things from a bleak perspective, especially when times get really difficult. And i'm OK with that. I know that I need that space to grief. But I do worry that I may end up depressing others and contributing to their sense of helplessness. Something switched in me this week though. After listening to the song, "Almost Home", I really did get a second wind in some ways, when I wanted to try to persevere and press on albeit the exhaustion and literal physical pain i'm experiencing 24/7. But I hope that I can continue to be authentic with myself and others. To take in every experience as a God-given gift, and to continue to make memories and make meaning in life. 

Lord, please grant me strength and wisdom to live each day as my last - that I won't take my life for granted and that I will appreciate the little things.  

Conversations with Myself & God

I tend to be really hard on myself while being compassionate and more understanding towards other people who may be in similar predicaments as I am. 

These few months have been challenging. I have been wrestling with God and myself as I try to make sense of what's happening to me, particularly my physical health. And I see the impact it has on my mental and emotional health as well. Its times like these, that makes me glad that I'm a psychologist as my training has taught me to be reflective. 

To counter my unrealistic expectations of myself, I have recently started this practice of writing notes to myself - words of affirmation, and to normalize and empathize with myself the grief I have been feeling. I'm giving myself the safe space to grieve and mourn with myself, as I recognize my ability to function seems to be chipping away, and more things going wrong for my body, and not to mention the more frequent hospital trips - whether its the ER or my follow-up appointments. 

I was in a dark place yesterday, as I noticed that I'm not able to do as much as I would like to due to my constant exhaustion. Not gonna lie, but the days have been getting hard to get by. Time is zooming past but I feel stuck. And the pain is becoming more intense. At times, I sense that I'm losing the determination to fight, to stay alive, and to make meaning amidst all these difficulties. In the past, I would be riddled with guilt and shame but thanks to my self-talk, I was able to regulate my emotions a little better. Don't get me wrong, I do still feel the negative emotions, they just don't feel as overwhelming as they would be in the past. And I feel that God has been reaching out to me too. I was comforted yesterday and was brought to tears as I listened to Mercy Me's "Almost Home". I've shared it here before. But I just felt that the lyrics resonated so deeply within me.

Are you disappointed?
Are you desperate for help?
You know what it's like to be tired
And only a shell of yourself
Well, you start to believe
You don't have what it takes
'Cause it's all you can do
Just to move, much less finish the race
But don't forget what lies ahead

Almost home
Brother, it won't be long
Soon all your burdens will be gone
With all your strength
Sister, run wild, run free
Hold up your head, keep pressing on
We are almost home

Well, this road will be hard
But we win in the end
Simply because of Jesus in us
It's not if, but when
So take joy in the journey
Even when it feels long
Oh, find strength in each step
Knowing Heaven is cheering you on

I know that the cross has brought Heaven to us
Make no mistake, there's still more to come
When our flesh and our bone are no longer between
Where we are right now and where we're meant to be
When all that's been lost is made whole again
When these tears and this pain no longer exist
No more walking, we're running as fast as we can
Consider this our second wind

Almost home
Brother, it won't be long
Soon all your burdens will be gone
With all your strength
Sister, run wild, run free
Hold up your head, keep pressing on
We are almost home

I felt as if God acknowledged my struggle and wanted to grant me hope to persevere, and that He would be right beside me. He has blessed me with amazing friends who have been supportive of me in their own unique ways too. This helps tremendously. 

One thing I've noticed throughout this journey is that I have been learning to balance my thoughts, so that they aren't just flooded by negativity. But its also about recognizing the blessings I've received. I've also been giving space for myself to feel. To accept the emotions that course through my system, and to hold space for me to experience the many emotions I have, at any given time.   

My Values

I had a conversation recently with Jon, a childhood friend of mine. As kids, we played a lot together and as we grew older, we began having more heart to heart conversations. Recently, he touched base with me and we got to the topic of living according our values. 

Ever since I adopted the ACT approach, this was something I personally practiced. And as I reflected deeper, I realize I could boil down my values to one word.

CONNECTION

Being able to interact with people and God (and dogs!) in meaningful ways - whether through heartfelt conversations, quality time spent doing anything/nothing, helping/empowering others to reach their potential, advocating for the voiceless, comfortably spending time with myself, and commune deeply with God.

Admittedly, in the past, I was just really fixed in being a helper as that is what i'm passionate about.. and when my body started deteriorating, it really messed with my identity as a "useful/helpful" person. but after much wrestling with God and myself, I've accepted that I can still do what I'm passionate about.. just that it will look different that what i envisioned it to be 10-20 years ago..

That said, God in His grace and mercy, has allowed me to still have some semblance to what I dream to do with Safe Haven. It's more than I could have imagined it to be. The 10+ year wait was needed for me to remain focused that this is His ministry and not mine. 

When I think of connection, I think of the many dear friends that I have. Friends that I am blessed to have. Ones that I can go crazy with, and within a split second, we could provide the safe space for vulnerability to present itself. 

As I shared this with my friend, he affirmed me without hesitation, sharing that I'm a wonderful and great person, having always been a blessing to everyone and anyone around me. Such encouraging words that mean so much. 

Life has been difficult, recent times much more so. But then again, I see how God has been with me every step of the way as well. And i'm so grateful that even in my darkest moments - when I feel isolated, I'm not actually alone. I have friends who are banding around me, being my support system. And I have a God who hears my cries and frustrations. 

I Lie Awake

It is 4.28am in the morning and I am still awake. The physical pain I'm experiencing is keeping me from sleeping. I can feel the fatigue in my brain, and yet my body is unable to rest due to the discomfort. As I try to turn to the Bible for solace.. I am directed to two Bible verses. The first being Psalm 4:8.

Whenever I read this verse, I am transported back to the eve of my first brain surgery. This verse meant alot to me and it gave me tremendous peace as I prepared myself to go under the knife. And it also reminds me of Steve Green's voice, the snippet he shared before the kids sang this verse.
"Peace is a safe, calm feeling. God gives His children peace when they trust Him. No big fortress or a mighty army could keep us any safer. So, no matter where you are... or what problems you have, you can sleep peacefully because He, is watching over you"

Such assurances that enveloped me. As I listen to the song again now, i recognize that my heart is at peace... but my body is still suffering. And I realize that these two can go hand in hand and it doesn't have to be exclusive of each other. Peace doesn't mean that I am relieved of my physical pain. But what helps is knowing that God is still in control and that He is watching over me, despite the pain. 

The second verse was Romans 8:18 ~ "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us"

This verse helps me to refocus on what is important. I am by no means dismissing my discomfort and struggle. I definitely do still struggle to adapt to this New Me again. But what a joy it is to be able to look forward to the future, while remaining steadfast in my hope in my Abba Father. 

Lord, please grant me a good night's rest as I remind myself of Your everlasting love and providence. I pra too that you will sustain me as I make my way to the hospital for my lung checkup later in the day. I also pray that You will help ease the discomfort in the other parts of my body - from my gasping brain, the heaviness in my chest, my breathlessness, my tingling arm and leg, the dull ache in my abdomen, and the bleeding I am experiencing again - Lord, I just surrender all these broken and impaired parts to You. 

Fragility of Life

 I'm still very much in shock as I try to grasp with a death that occurred so swiftly. Uncle Loi has been such a great help to me and my family the past months, as I struggled to be the sole caregiver of my parents, and as I grappled with my health issues. Even though I've been accumulating more and more diagnoses, I'm still here and for the most part, I don't look sick (or I try to not look sick). Uncle Loi was diagnosed with 4th stage pancreatic cancer mid February - he didn't have any symptoms prior to his blood test cancer marker suggesting that he had cancer,, later it had spread to his lungs. And it went downhill from there. And today, we received news that he had gone home to be with the Lord in the early morning. All this happened within a month. 

I'm filled with grief - for a Christian brother/uncle who has been generous of his time with my family. On one hand, I'm glad that his suffering was not prolonged, but on the otherhand, I wonder why he was taken so quickly. I can only imagine the heartache of his family. This loss felt so abrupt.

What is God's Will in these matters of terminal illness? I know I will never comprehend God's big picture in its fullness. I wonder why I'm spared from death at this point in time when my so many parts of my body is just going haywire. To some extent, I recognize that I'm experiencing survivor's guilt. The same guilt I felt when aunty SY passed away. Again, someone who was praying hard for my recovery, and she passed on from cancer as well. "It could have been me" is something that pops up in my mind. 

Again, I don't know why these things happen but I pray that I won't take life for granted and that I can live it to the full while I can. This recent hospitalization, current bleeding, poor memory and word recall i'm experiencing has made me realize that i'm on a decline myself. I take much longer to recover from activities while my body feels heavy and drained all the time. How do I function in such cases? Do I try to push myself to engage? Or do I just rest? But how much rest is needed? Even with 3 weeks of rest, I am still feeling like i'm at square one. It doesn't help that I don't look sick and my pain threshold is high.