Feed your mind #1

‘The Mighty’

“Having a disability or disease doesn’t have to be isolating.”

As medical students, we are often reminded to see the person before the disease. It’s a child with autism, not an autistic child, our instructor at Rainbow Centre would say.

Yet, sometimes I find myself forgetting and saying ‘bed XX is the COPD (Chronic Obstructive Pulmonary Disease)’, which horrifies me. It isn’t entirely our fault. The sheer intensity with which medical students are required to swallow conditions wholesale (and regurgitate them for our exams), means that we can spend far too long characterizing the sputum and skim past the social setup. Plus, it is more efficient to say ‘bed XX is the COPD’ than to say ‘the uncle in bed XX is the gentleman with COPD’. Both of these are not excuses. Since circumstance is such that it is easy for us to slip into bad habits, then we owe it to our patients to make an extra effort in reminding ourselves that they are, first and foremost, persons.

Which is why, websites such as The Mighty are so wonderful. The Mighty aims to build a community for people to ‘face disability, disease and mental illness together’ and is a platform for patients (and their families) to share their unique experiences in living with their medical conditions. Many of the stories are about strength and how their conditions add to (not detract from) who they are.  

This video made by a photographer in honour of her sister who had Downs Syndrome is one such example. In it, she invites families of children with Downs Syndrome to give advice to parents whose children have just been diagnosed. Watching it taught me that Downs Syndrome doesn’t just mean Simian creases, wide set-eyes and a sandal gap. It can also stand for a loving family, strong parents and children who are beautiful- not in spite of, but because of their condition.

To anyone who has ever wanted to know more about the person behind the disease, I would recommend ‘The Mighty’. 

Perspective #4

Mirrors

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My sister has an interesting concept about mirrors. She believes that everyone in our lives has the capacity to be one and that it is up to us to choose who to look in to.

Some mirrors are harsh and distorting. Like the fun house madness, you can hardly tell if the ‘monster’ you are gazing at is you at all. If you can see the trick and you know to take it lightly, then it can be a laugh. But if you sincerely believe that these reflections are accurate, then you can start to get a distorted image of yourself. You may begin to believe that yes, you really are quite stupid, or no, of course you can’t accomplish that. It starts to bring you down, and before you even realise it, their words are your world.

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Other looking glasses are too lenient. I’m talking about those in dressing rooms that nip and tuck all your ‘flaws’. These proverbial Photoshops of the reflection world are only too happy to sing your praises and to forgive you for all your sins. Soothing to look at, they can lull you into a false sense of security that you really are, always right. And if you are already perfect, then there is nothing to improve upon.

There is nothing fatal about these two alternatives. You will not die nourishing your soul on either. But you might begin to develop a skewed view of yourself, which is in itself, disabling. We are all autonomous beings. Eventually, we are going to have to make our own decisions and life choices. And if we cannot trust the feedback that is given to us by our closest advisors, then how are we to navigate the world? At best, you are blind. At worst, you are headed in the absolutely wrong direction.

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The ‘solution’ to these false mirrors is the true looking glass. It neither embellishes nor whittles down. Instead, it tells it like it is- which is what you need in a difficult situation. When you ask a true mirror what they think, they will tell you all the areas you have done well, but they will also point out assumptions, errors in thinking, lapses in judgement and the whole gamut of how you can improve upon the situation. They strive to be a true compass. They will tell you when you are lost and point you in the right direction, but kindly- without loss to ego or face. Importantly, they do not force. With the bearings they give you, you then make the choice of where you want to go next.

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The best part of the true mirror is that you know you can trust them. With the distorting and overly-lenient mirrors, there may come a time when there seems to be no point in sharing the deeper side of yourself with them, as you are unlikely to get a proper ‘reading’ anyway. With the true mirror, you are able to let your guard down and be vulnerable as you know they will neither trash you nor patronize you. It is a safe environment and thus conducive to growth.

So what do we do? Our loved ones come in all different shapes and sizes. Many of our parents, siblings, friends and lovers are far from true mirrors. In fact, it is hard to say if any of us can even be 100% clear.

What we can do is to take note of how we feel after speaking to the different people in our lives.  Take the time to reflect on the conversation and tune in to your emotional response. Do you feel more settled? Did their advice ring true? Or were you left feeling more disquieted and dissatisfied?

While we cannot change those around us, we can choose who we confide in. It might be worthwhile to deepen your relationship with your truest mirrors and re-examine those you have with the rest. Which is not to say don’t confide in them at all. Confiding is an act of sharing your soul and signals love, trust and acceptance. I love all the mirrors in my life and cannot imagine not sharing who I am with any of them. The important thing is to know how to reframe the input given by those who fall on the more extreme ends of the spectrum. Like the spirit level used by bricklayers, you can then make your own adjustments to ensure that the ‘truths’ you are building your self-understanding on are indeed level, and not askew.

It is a hard balance to strike, but one I feel is well-worth investing in. 

Everyday Inspirations #1

Interview with 2 long-term primary caregivers

I want to start off this ‘Everyday Inspirations’ series with 2 people who are very close to my heart- my aunties, Anna and Li Choo. They took care of my grandparents for a total of 12 years, when they themselves were in their 60s. Their decision to be the main caregivers to their parents meant the rest of their siblings did not have to uproot their lives and scramble to make care arrangements. Many of us know of caregivers or are caregivers ourselves- I hope that that this story will provide insights into the challenges and joys faced by them and give you some ideas on how to better support your loved one/ yourself!

Note: for ease of reading, red= Li Choo, blue= Anna

Q1) How many years did you take care of your mother and father?

Our mother was 10 years. Our father was one and a half years.

Q2) Tell me about their medical conditions

Our father had a stroke, end-stage kidney failure (on peritoneal dialysis) and diabetes. For our mother- high blood pressure, diabetes since she was 40 years old, vascular dementia, ischaemic heart disease, a fall that left her with a tracheostomy followed by a heart attack, then 2 more falls- fracturing her ribs and pelvis.

Q3) Describe a typical day caring for them

We used to have to get Papa up very early in the morning- 5 something- for dialysis before we went to work. And if he was very tired he would say ‘5 more minutes please’ and we would let him sleep for 10. After that he would get up, no complaints. We would go and work. Our brother would take the morning shift and do the second dialysis. At 3pm, we would come back and do the third dialysis. Then we would cook 2 meals (dinner, and lunch for the next day) before doing the last dialysis at around 10pm. In the later stages, we had to do dialysis 5 times a day because his urea was very high. In between we would settle medication counting and send him for red cell injections 1-2 times per week.

He was [traditional] so he didn’t want females to have to bathe him. Most of the time, it was our brother bathing. But then when my brother wasn’t there, Anna would bathe him.

For our mother, every 2-3 months we had to bring her to the hospital. It was very stressful. We would leave by 7am (so that she could have her blood test first thing in the morning) and come back at 12 noon. She would be very hungry from fasting (to draw blood) and we had to settle her food along the way. 4 people went- while some of us were settling the medications, the rest would keep her entertained.

The worst was when we had to bring her to the hospital in Malacca. I had to drive down to Malacca every day for two weeks! We would take shifts. Some would stay there, while we took the laundry back to wash and hang up. By the time we drove back it would be night. The next morning, we would go to work. Then, after work, drive down again.

Bathing her was ok because by that time, we were retired, so we had more time. But her legs were weak and we were afraid she would have another fall.

Q4) What were some of the daily challenges? How did you cope with them?

At first, our daddy had difficulty accepting his condition. He would see the many stacked boxes [of his medications] and ask ‘why do I have to use so much of these things?’ But my younger sister told him it was the same thing as needing many boxes of milk powder to keep his grandchildren alive. After that, he accepted it.

By the time we were caring for our mother, we were already over 60 years old, so it was tiring to keep having interrupted sleep.

Our mother was always in pain. I would tell her I was going to have a shower and she would say ‘pain, please don’t leave me alone’ (in Teochew). I explained to her that Anna was cooking and that I needed to bathe, so could she please sit and do her prayers for awhile? She told me she had forgotten her prayers! And I said, ‘just do what you can remember and when I come out, we can do the rest properly’. But of course, every time, before she got very far, she would doze off! (They both laugh)

"Now that we are older, we understand that she just wanted some attention. Because otherwise, all she had were the four walls in her room."

There were times when we were stressed and I would lose my temper. My voice would rise and Li Choo would say Anna Sim. Sometimes, you just need someone to remind you (to remain patient).

We also had a maid in the last year of my mother’s life.  At first, we didn’t want a maid, because you had to train them and worry about someone new in your house. But our siblings convinced us. They told us ‘you can’t continue like this- you will collapse’. So we got one. But mummy didn’t trust her! It took a month before she got used to her and allowed her to assist in anything.

Q5) What was the lowest point in caring for them? How did you get past it?

Oh! Putting her tracheostomy in- I cried! I could see my mother struggling so much and I thought to myself- how can I do this? If I am a little bit late, she might die. Luckily, she got better and no longer needed it. What a relief- that was really the most stressful time, when I had to learn how to do that.

Q6) What were some of the most rewarding parts about caring for them?

They were always appreciative of what we did for them. Every time we did dialysis for him, our daddy would say ‘thank you’. It really made all the hard work worth it.

And there were moments! One week before my father passed away, he was watching Pride and Prejudice, one of his favourite shows. And he was laughing at the old couple on the show, bickering. I could see his eyes twinkling! He was very lucid, till the very end.

Q7) Did you ever feel resentment about being the primary caregivers?

There was only one time. Our brother took a holiday with his family and when they came back they didn’t immediately come and see mummy. We were very stressed out about other things at the time, so we couldn’t understand how they could wait to see her. That was the only time we felt resentment. But we accepted it. After all, he has his own family to take care of, that’s just the way it is.

Q8) Did you ever discuss with your parents where they wanted to die?

Our father was very good, he had foresight. He told us from the beginning he wanted to die at home and be cremated and housed at the temple so it would be easier for us to visit. And when we asked our mother, she said ‘just follow your daddy lah!’

It’s very important. You have to discuss to find out what they want. It’s very difficult for the children if the old people say ‘don’t talk about death!’ They have to be realistic. Death is death. Nobody can run from it. You should write out your wishes.

Q9) After your mother and father passed away, what was the transition like?

It was quite easy because our siblings made us feel welcome. They told us to come over to see them and took us on trips.

Also, our father had settled a lot of things before he passed away- money, shares, land. It would have been very difficult for us to settle that on our own. And all the siblings had an understanding that everything would be shared equally.

"Sometimes, we miss them but we think to ourselves- they were in so much pain and suffering, would we rather they had stayed?" 

No one wants their loved ones to suffer. It is harder if they go suddenly, but if they were sick and you took care of them for years, then you would know they were suffering and it is easier to accept. Religion helps too- whatever you believe in, whether they are reborn or go to heaven or what.

Q10) Do you have any regrets?

When our mother was bedridden, it was the last few days of her life- maybe we could have spent more time with her. By that time, we were very tired, but we should have let the maid take on more house duties and focused on talking to her and keeping her company.

Some people are working and feel like they cannot give enough attention to their parents, but it cannot be helped.  You know if you are sincere. If you have tried your best, then that’s it. No one is to blame- you have to accept it.

Q11) What advice would you give to caregivers who are struggling?

The first thing is your attitude. Don’t take it as ‘why me, why me?’ See the positive side. It is an opportunity to learn to be more compassionate and generous, to practice patience, and to give back to your parents. If you think about it, our parents gave so many years bringing us up. To take care of them- it is only right.

Next, get support. Respite- it is very important. Not just for a few hours, but you need to really get away for a time, to recharge. For us, our younger sister would take us away on breaks while someone else took over. Nowadays, we hear that you can place your parents in a nursing home for a few days for respite care. Whatever it is, you need to find some way to get help.

Finally, finance. We were really fortunate- our siblings and their spouses were never calculative. Whoever saw the hospital bill first, tried to pay it. But if you don’t have this, then you must find some other means of help. A lot of worry comes from this, so if you can take that off your mind, then you will feel less stressed.

Thank you very much for sharing your story with us!

Perspective #3

Mornings.

Mornings are hard

for everyone.

It’s waking up and saying goodbye

to your bed,

your blankie,

Sponge-bobbed Patrick,

your bolster and

your dreams (yes, imaginary boyfriend, I’m talking about you).

It’s facing up to the alarm that just won’t

shut it

and

the dread of day.

Your worries pile onto your toothbrush,

angst you show in hurried strokes

1     2    1   2  1 2 121212121

ahhhhhhhPUI!

Breakfast is a lonely affair

of rummaging in the fridge for something that doesn’t repulse you

or wolfing down SOMEthing-quick!

Your feet are already out the door,

the papers unread,

you mind elsewhere.

No one turns

to watch your mother

dancing in the driveway

as you shriek off

--

Mornings don’t

have to be like this.

The early bird catches the worm?

Well, I’m determined to collect them all.

Snooze less.

Don’t undermine the decision made by

yesterday’s G.

6.30? I’m up I’m up.

Kiss goodbye to Fabio or Franco or

whatever his name was.

He wasn’t that great anyway.

And FOLD YOUR BLANKET.

Always.

Go into the toilet and greet your smiling face.

Not smiling?

Grimace then.

That’s right, reeally get into it- RAWR!!!

You are gorgeous.

Now do a little dance-

one that would make your mother proud.

Is anyone supposed to be able to see that?

That’s right- really shake your booty!

You feel lighter as you prance down the stairs;

No one can take you seriously today,

least of all yourself.

Startle everyone with pecks on the cheek-

given in jest

and merriment.

Dance out of your mother’s grasp

as she tries to tickle you

Hello.

I made my breakfast box yesterday

so that today

I eat like a King

(or Queen as the case may be)

My mother starts her day with the obituaries

and as is our ritual,

I shake my head and sigh.

We tut tut tut at the usual.

And now I am off,

not by force but by choice.

It is 5 to 7 and I am early.

I like being early.

I hum as I get into my car,

disturb my dog,

wave at my mum,

check that my sister is, indeed, in the next seat and

Turn

Ready to face the world.

For everyone out there who struggles to get out of bed in the morning, may you find your own 'happy routine' soon!

Sincerely yours,

G

Borrowed Wisdom #1

“Though sometimes it is necessary

to reteach a thing its loveliness,

to put a hand on its brow

of the flower

and retell it in words and in touch

it is lovely

until it flowers again from within”

-Saint Francis and the Sow

By Galway Kinnell

I’m sure we all know that friend who is lovely, who is respected by many and loved by all. Her heart is gold and her hands gentle, with acts of kindness. By any measure, she is doing well in life, at least, in all the ways that count. Most times, she is cheerful and sunny, bolstering the whole group up. Even in adversity, she smiles.

Yet what we do not see is the quiver of her lips and the doubts that linger behind bright eyes. This she shoes only in rare moments to those she has learnt to be vulnerable with. A trusted few.

For you see, though to all the world she appears carefree, brilliant and perfect, she is human. And as humans do, she questions.

There are days when she questions her thoughts, her actions, her choices, her life, herself. And on those days, nothing is good enough.

So dear friends, to all those lovely people in your life whom the world sometimes takes for granted- reach out. Put a hand to a head, heart, shoulder, and tell them in words and in touch- “You are lovely”. Tell them you love them.

For it is easy to forget one’s own worth in the mad crush that is daily living.

And sometimes, when you are that person whom the whole world has taken for granted (including yourself), pay yourself that kindness. Remind yourself that you are worthy of love.

May you find the strength to flower again from within, soon.

Sincerely yours,

G

Perspective #2

The Continuity of Life

Saying goodbye to yesterday

The other day, I watched as they tore down my childhood. Them- in their neon orange helmets and fluorescent yellow vests. The big dumpster truck careening over the edge of the sand pit.

We had gathered to watch the massacre. There was something almost hypnotic about the dance of the demolition head, carefully caressing monkey bar metal, the melody of the scrape of the slide. And then slowly, methodically, it began.

Years of turning the tic tac toe wheels fell in one swoop. The cheerful slide that always gave you a bum full of sand at the end, crumpled in half at the hands of the men. The monkey bars that I could never master-I would never get a chance to try again. And the platform where I went at night, to battle myself, to hide my worries from my family’s kind eyes- all gone in an instant.

It moved the ground within us. Yet, at the same time, everything was still. None of us spoke for a while, not me nor my assembled siblings. It was like we knew, even without speaking, that our childhood memories deserved a minute’s silence.

It is tough to watch them take away your childhood- to see them shred it into pieces, haul it into the truck and back slowly out of your life. After they were gone it was the strangest feeling. The memories were still there, all of them, but the physical structure that had housed them my whole life was no more.

It was a traumatizing afternoon. The rest of the day we spent, sitting at the dining table, talking over our shared past. We were glad to still have each other. And thankful for the one swing set they had left behind.

The fear of now.

The week before I turned 21, I remember being scared. It was the year of the birthdays. All my friends had been turning into adults for months and it was, at last, my turn. I had thought about this age since I was a kid. I remember being 12 and looking at my sisters in university and thinking they were the coolest people on earth. I remember trying to imagine myself their age and coming up with nothing. A big blank black hole of a person. I was me and I couldn’t imagine being any different- any more grown up. And here I was, going to become one- a grown up. But the thing was, I didn’t feel very different. In fact, I felt small, the smallest I’ve felt in my whole life. The idea of turning 21 terrified me. I didn’t have it all figured out- I didn’t know what I wanted to do in life, what was important to me, who I was-anything. That’s what I thought being an adult meant. And I wasn’t ready.

I kept this to myself and was unusually quiet the whole week leading up to my birthday. I felt like a fuse about to burst. And the worst thing was that I couldn’t stop it coming, the days ticked steadily by.

One night I decided to take a walk with my sister. I was anxious the whole time, trying to decide what to tell her. It seemed childish to have my fears. But I trusted her enough to not laugh at me. Besides, she was an adult, she would know what to do.

The truth shocked me.

My sister told me that it was a lie. That you never really ‘became an adult’. That even now at 26, she was still trying to figure life out. You never really arrived you see, you just kept trying. Turning 21 meant people would start giving you more responsibilities and expect you to handle them. But more importantly, it meant you needed to start seriously trying to be responsible for yourself. No more excuses that someone else would take care of it. No one would expect you to change overnight. Everyone would still be there to support you. But you owed it to yourself to try to begin to stand on your own two feet. Like the baby giraffe that has just been unceremoniously born. Though his knees buckle, he must push and push and try desperately to stand up. His mother nuzzles him and attempts to use her neck as a crutch. But ultimately it is the baby who must find it within himself to stand. If he can, he has so much potential ahead of him. One day, he will reach heights he cannot even dream of.

And it all begins with the first step, the first push, the first struggle. Fall, fall as many times as you need, but always get back up again.

I felt like I had been let into the secret society that night. I had a new powerful truth in my mind and it made me bold. I didn’t have to feel scared to turn 21 because nothing happened- because everything would still stay the same. Yet inside, I knew the way I saw the world had changed.

The promise of tomorrow

The day my sister told us she was pregnant was a screamer. The whole house erupted in cheers. There were weird sounds mixing in with incoherent congratulations. My aunty who was in a bathroom upstairs thought something crazy must have happened below. And she was right, because in a moment, our whole world had changed. We were welcoming a new life into our family. Prouder grandparents there couldn’t have been, and gleaming siblings beating the actual parents to taking their baby’s first ‘welcome to the world!’ video. It was really something special.

After the initial furore died down, we began- as all good would-be families do- to plan. We called the as-yet-unborn-babe ‘Sprog’. And Sprog would need everything. Enthusiastic aunties volunteered to baby-sit, uncles spoke of grand playroom lessons and the grandparents prepared to behave themselves and show a good example to the young ones. The old attic room that was my sisters would now become the playroom for all the future children, starting with hers. You couldn’t see it now, but a play mat here, a table there- we would have it ready in no time. The old board games needed to be brought down and dusted for use. The stories our parents once read to us would once again be cracked open at the spines, ready to enchant a new batch of pyjama-wearing scholars. And our toys- oh our wonderful mismatched toys!- would fall into tender grasping hands again. It was a wonderful future to behold and we set about our task with a happy purpose.

Even as I look out the window and feel a twinge that we cannot take them to the playground their parents played at, I can see the new hope just over the hill. They’ve built a new slide, monkey bars, watch tower-everything, to make up for the one they took away. It looks and smells different from the one we knew, but it has room to house the dreams of the next generation. And at the end of a long play day, when they are tired from the running, screaming and catching, we will take them to the old swing set that we all know and love. We will boost them up, draw them back and watch them swwwwwwwing as our parents did before us, squealing as they try to catch the sky.

Perspective #1

On Reading… (Genesis)

When I was a child, I didn’t like reading. I remember my siblings bribing me with stickers for finishing each new book. My sticker album was my pride and I revelled in every addition. There were shiny Digimon stickers that I didn’t particularly care for ’cept they appealed to the magpie in me, furry apple stickers that I delighted in running my fingers over and my favourite- the 101 Dalmatians. Each Dalmatian in this series was the size of a polypocket and my siblings capitalized on my awe at how big they were to further my vocabulary. Earning them felt like a true challenge, and with each paperback I blazed through, I felt more and more accomplished. The crowning jewel was the A5-sized ‘Queen’ of the Dalmatians. It was ostentatiously large (it couldn’t even fit into my sticker book), unassumingly under-embellished (the dog in question didn’t deign to decorate itself with any colourful outfit to set itself apart from the other 100), and I REALLY wanted it. To my 7 year old self, it would be the sticker to end all stickers. After this, I was done.

The obstacle I had to surmount for this ultimate reward was a worthy one. A thick volume called ‘Goodnight, Mr Tom’, its tiny words and narrow spacing were elements that had long daunted me. My brother had been trying to persuade me to read it for some time but I had resisted in stubbornness (and, if I’m being honest, fear). Now, I began my conquest in earnest. It was a difficult read- some of the themes in there were hard for my young mind to digest- but slowly, and surely, I made it through. The day that I finally earned the rights to that mammoth Dalmatian, I felt as though I had won the lottery (well, in manner of speaking. I doubt I even knew what a lottery was back then) and couldn’t stop smiling.

It wasn’t until years later that I realised how pivotal that moment was for me. Looking back, I think I owe my siblings much more than I often admit. In my quest to ‘collect them all’, I had unwittingly developed a taste for books. Perhaps it had started out as an intention to steal my siblings’ best prized stickers but, as I ploughed through more and more tomes, the struggle to decipher hard words got less and less and, almost without my notice, I began to actually enjoy what I was reading.

As I stared at my hard-earned bounty days later, I was surprised to find that the excitement had worn off. I no longer felt like I held the world within the flimsy spotted canine in my hands. But I was not left bereft- for, in the place of childish want, I now felt a sense of possibility. Those stories that I had read over the past months- Roald Dahl, Mallory Towers, Nancy Drew, Narnia and the like- they stayed with me. I could still see the smoke from the sordid plane crash that had threatened to tear Ned and Nancy apart, smell the grass of Miss Honey’s homey cottage and feel the shiver of The Witches’ toeless monstrosities. It was all real- and fresh. I had only to stumble upon the tag of a phrase, catch the whiff of a scent or listen to the refrains from my neighbour’s haunting piano practice, to be pulled back into these worlds. A magic door had opened and I had, at last, stumbled upon my very own Wardrobe.

And so, it began- my love affair with books. I joined the ranks of my siblings, setting up camp at our local library, each of us jostling for the extra-borrowing rights (because, clearly, 8 books per visit was not enough). And it has been a happy marriage thus far, notwithstanding the occasional dry spell and subsequent reinvigoration (but more on that in another post).

Sometimes, I wonder what would have happened if I had not happily bought into my siblings’ grand plan to make me a mercenary little sticker grubber. Would I have eventually found my way into this land? Or would I have continued on my stubborn, ignorant path? At the very least, I can attest that the person I am today is due in large part to the influences I have received from reading, digesting the ideas I find within and rehashing them for discussion in the real world.

And I am grateful to my oddball siblings, who were sly and wise enough- even in their tender years- to devise a plan that so brilliantly ensnared me in the world they so dearly loved, and had longed for me to see.

I will always treasure the memory of that oversized sticker, for it reminds me of a little girl who was so hopeful, her heart fluttering, as she stood gazing out at the endless worlds of possibility beyond.