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.