Dealing with Decline

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

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

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

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

Medical Alert ID (continued)

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

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

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

Medical ID

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

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

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

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

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

Fleeting Mind and Breath

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

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

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

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

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

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

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

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

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

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

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

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

Legacy

I finally managed to meet up with my bestfriend after nearly a year of us not having the opportunity to meet up. Although we don't get to chat often even via text, I know that we still care for each other deeply, and there was much to catch up on in regards to our personal life events. One thing that struck me in our conversations with other people, may not be deep as it requires a safe space and safety to be able to broach sensitive or difficult topics - such as the meaning/purpose of life, and how we view death.

As we spoke, I realized how blessed I am able to have a few close friendships that are willing to delve into these conversations. She had shared before that she had done a "legacy interview" with her parents, asking questions about their lives - questions that, let's be honest - typical Asian families wouldn't speak about. It was something I really admired her bravery for. I was surprised when she brought this up - asking if I would like to have this legacy conversation with her, for her to record it. 

First thought I had - what words of wisdom would I have? I don't think I've achieved much nor have I made much of an impact, and while I can be serious when I need to be, humor is my coping mechanism. "but that's you", my friend quipped. She hopes to record a view of us talking about death and how I've wanted to live my life. Sounds grim and morbid, and yet, meaningful at the same time. And it touches me that she would like to keep a memory of me with her in the time that I am to pass on (we'll never know when exactly... but there seems to be a mutual understanding that time is ticking for me).

That being said, it reminded me of a song I've been listening to, which I believe I've shared in one of my posts, and it still rings true to me - that I would not like a legacy that's focused on me. I hope that my life points to Someone greater - my Lord Jesus Christ who has saved me of my sins and has granted me joy amidst the pain and struggles. The One who hears my innermost fears and I know empathizes with my pain while granting me strength to go through it. 

May this theme continue to be apparent in my days.  

Only Jesus

Make it count, leave a mark, build a name for yourself
Dream your dreams, chase your heart, above all else
Make a name the world remembers
But all an empty world can sell is empty dreams
I got lost in the light when it was up to me
To make a name the world remembers
But Jesus is the only name to remember

And I, I don't want to leave a legacy
I don't care if they remember me
Only Jesus
And I, I've only got one life to live
I'll let every second point to Him
Only Jesus

All the kingdoms built, all the trophies won
Will crumble into dust when it's said and done
'Cause all that really mattered
Did I live the truth to the ones I love?
Was my life the proof that there is only One
Whose name will last forever?

And I, I don't want to leave a legacy
I don't care if they remember me
Only Jesus
And I, I've only got one life to live
I'll let every second point to Him
Only Jesus

Jesus is the only name
Jesus is the only name
Jesus is the only name to remember, oh
Jesus is the only name
Jesus is the only name
Jesus is the only name to remember

And I, I don't want to leave a legacy
I don't care if they remember me
Only Jesus
And I, I've only got one life to live
I'll let every second point to Him
Only Jesus

I don't want to leave a legacy
I don't care if they remember me
Only Jesus

Gaslighting

 Gaslighting. definition: psychological manipulation of a person unsually over an extended period of time that causes the victim to question the validity of their own thoughts, perception of reality, or memories and typically leads to confusion, loss of confidence and self-esteem, uncertainty of one's emotional or mental stability, and a dependency on the perpetrator (Merriam-Webster, n.d.)

Gaslighting is a term that has been making its round in recent years. It dawned on me while I had a conversation with a friend that this happens medically too. And it has happened to me since childhood, and I've only put a name to it now. 

Medical Gaslighting: definition: when a physician/other medical professional dismisses or trivializes a person's symptoms. They may mistakenly determine that pain or other symptoms are not real or simply a psychological (eg. stress/depression/anxiety). When this happens, it may take years, if ever, to receive a proper diagnosis. It can also cause an individual to doubt their own pain or sanity (Painscale, 2017).

So one may hear things like, "I can't find anything (ergo, you're imagining things)", "you may be a hypochondriac", "are you sure you are experiencing this?", etc. I've also had a doctor who retorted that I gave "textbook descriptions" of my symptoms. 

Sadly, because of these professionals who choose to doubt one's experience, it impacts the perception of others/family about said person. It doesn't help when the illness is invisible or the choice is made to not "act" sick. In my experience, I tend to "act well" because I deny my own pain. 

While I was hospitalized last month, I found myself doubting my difficulty to breathe and wondered if I was exaggerating ("do I really need to be in the hospital? Do I really need a bronchoscopy?"), and I realized how absurb those thoughts were, but only when the chest physician told me that my condition would have turned fatal if I chose to ignore it. A family member actually texted if she could return later instead of coming back as soon as possible to help at home (I've been sole caregiver of my parents for the last 2 years), asking, "is this urgent?"

So yes, I noticed the lack of empathy and urgency towards my state of deterioration from my family. And I realize this tends to lead me to question my own experience with pain and illness - am I blowing things out of proportion? Why are they not affected or showing concern that I've been hospitalized THREE times in year? Is it really a big deal?

Even now, I do still struggle with breathing at times. And I get questions from my family - "why are you sighing?" Err... because I can't breathe? Honestly, I'm not doing it to seek attention. I'd be more than happy to be healthy, instead of pushing myself to function. HONESTLY.

But I am aware now... gaslighting happens medically as well. For you out there who may need to read this, I hope you trust your own instincts and experience with your own body. It's easy for people to pass judgment and accusations when they aren't the ones who are going through it because they are basing it on their own experiences or ability to function, not ours as chronically ill individuals.         

  

PainScale (2017) What is Medical Gaslighting?https://www.painscale.com/article/what-is-medical-gaslighting

Merriam-Webster. (n.d.). Gaslighting. In Merriam-Webster.com dictionary. Retrieved January 23, 2022, from https://www.merriam-webster.com/dictionary/gaslighting