Remembering Loly

My most vivid memories are the most recent, where during every visit, you'd always tell me to lay down for a nap even if it was the middle of the day - and you had your favorite noontime show on television playing loudly in the background.  Or that time when I was going on a trip with my friends and went to visit you before I left - you asked what I was doing there, since you knew I was supposed to be out of the country, I reminded you that I wasn't due to leave for a few days yet. You smiled absently and asked me again, to take a nap. 
I smiled and lay down on the single bed beside yours, and watched television with you as you drifted off to sleep. It was barely an hour past noon.
You complained of an annoying ringing sound in your ear, and disliked the lump that formed on the side of your neck, more concerned that it made you look less than beautiful - you remained radiant as always - because when I look back on those days, I can only remember the look of concern that reflected my own - and I didn't have the heart to confront you with the reality of the situation (then again, not one of us among those who love you did).  We played along and never confirmed the diagnosis - Cancer.
Up until the last day before you slipped into the fog of  forgetfulness, you kept worrying that maybe you were sick - not really understanding, I think - just how ill you were. I felt the omission a breach of trust, but I could not bear to be the one to confirm your worst fears.  I held my tongue. I think, somehow, you knew - but have chosen to hold to the fretting part, never really getting to the acknowledging that you were not well.
I remember when I was much younger, and I was left at your house while mom & dad were at work - you allowed me to use actual plates while i concocted various "dishes" comprised of shrubs those little coconut peas that grew on the small palm tree in the yard.  You even bought me a clay cooking set from the nearby market, and gave me some actual rice to cook - even if the water kept seeping into the tiny pot.  You made me feel competent, and allowed me to believe that I could do ANYTHING I set my mind to - when the rice failed to cook properly, you said we'd try it again another time, despite my protests.
When I had some silly story to tell, you would always smile broadly at me and all I remember are your eyes lighting up with your asking "S'ya nga?" like I'm the smartest kid ever born and I'd just as generously smile back and nod my head like it was the greatest story, EVER. 
My first taste of coffee was from a portion of pandesal that you dipped in your cup, when I asked what it was you were drinking for merienda. I was probably 6 years old.  My knowing that the "perfect" glass of lemonade was 10 pieces of Calamansi and ten teaspoons of sugar to a tall glass set my taste-buds to sweet is the only way to go.
When mom refused to buy me a pogo-stick, which she said I didn't know how to use, and would be dangerous to play with, I started to sulk. When you found out about this, we both snuck off and you bought me the pogo-stick yourself. You were confident that I'd learn to use & play with it safely. You made me feel invincible.  You made me feel brave. You made me feel like I could do anything I set my mind on.
When I was at the hospital and had a craving for your soup - you had never-ending batches of it made to be brought to me daily - to a point that the people at your house were sick of the aroma of the broth boiling on the stove.
When you fell ill, I was much older, and knew there was precious little I could do to stave off Cancer - even then, in your brief moments of lucidity, you would ask after me and how I was faring with having Lupus, forgetting that you were in a medically more precarious condition than I was.

Now that you're gone, and I'm still here, dealing with having the aches and pains of a person many years older than my actual age - I remember you, believing that I am able to deal with whatever comes my way.  I fake my way through some days because I'm not sure how capable I really am of not letting my dis-ease get the better of me.  But on most days, I remind myself that you're watching over me - over all of us who love you still - and take courage in that thought.  I can do this.
Three years on the 18th of July 2011.
I still miss you every single day.

a favorite photo with Loly
(circa 1994?)

Dealing With It - a repost from a note I made on Facebook. Timely reminder.

early morning sky in Bagasbas, Daet, Camarines Norte, May 2010

by Babs Montalban on Sunday, September 5, 2010 at 2:25pm

Life does not have end when you are diagnosed with an illness. At least in most cases, not right away.

There will certainly be changes - often major, especially if the malady happens to be either seriously life threatening, require immediate medical treatment/hospital confinement or something you’ll have to live with for the rest of your days.

We aren’t talking here about the common cold, the irritating cough, or the flu  (which, incidentally, when you have makes you  *feel* like you are nearly at death’s door.)

I’m  talking about   the more – “serious” medical conditions that we hear about once in a while or know someone who has it, has been diagnosed with it – and it’s usually extremely life threatening, life changing and in many cases – fatal.  Dis-ease, as I’d like to call it, can be a tricky business to deal with.

If what ails you involves pain – then it would be a gift to have an extra store of patience and positivity because It’s difficult to be friendly, patient or “nice all the time” if you are “in pain all the time.  It isn’t easy – but it is do-able, I suppose it just takes practice. A LOT of practice. That or a really effective pain pill. (try to avoid this to lessen stress on your liver)

There are the usual suspects– the ones that strike a chord of fear and elicit extreme sadness when heard as an official diagnosis:  Cancer, HIV-AIDS, Diabetes, Emphysema.  There are the less commonly heard of by some – and are often not understood as much, such as – Systemic Lupus Erythematosus (SLE) or Lupus for short,  Fibromyalgia, Endometriosis, Dermatomyositis, Trigeminal Neuralgia (Trigeminal what???) and of course, there remains a very long, long list of things that could be not quite right with one’s state of health  - ranging from a chronic migraine or a cough that won’t go away (which could be symptoms of a more serious condition. Not to be alarmist, but if you experience any “less than healthy symptoms” for more than a week, please, please consult a doctor just to rule out anything that could still be addressed and treated, if not - cured.  Included in the list of dis-eases are the psychological ones – depression, bi-polar syndrome, and the like, as well as conditions such as Autism, AD-HD (Attention Deficit-Hyperactive Disorder, Cerebral Palsy and on and on.

Yes, prevention is better than cure, so a healthy lifestyle is always good to maintain.  Mea culpa here, because I’m not saying MY lifestyle choices in the past (and even in the present) are the best they can be.  But to those of you who are currently in – “the Pink of health” please remember to be thankful and not take it for granted.

Allow me to get back to the point of all this rambling.

Life does not have to end just because the doctor says you have something that  has no known cure, is chronic – which means you’ll have it for a long time or for the rest of your days - or worse – fatal.

It is especially during this time when you are called to step up to the plate and do whatever you can to maximize your remaining potentials.  And believe me – there are many still.  Even if at the very least, it is to get treatment.

Sure. Grieve, but don’t wallow in self pity or start worrying about “those who you will be leaving behind” Yes, these are all things to consider – but please don’t let it paralyze you into a state of total dysfunction.  It doesn’t seem acceptable to just take the diagnosis and say - ok, that’s it – GAME OVER.

The game isn’t over for as long as you are still breathing.

It is a time to hope and have a sense of belief (if some would prefer – faith?) that things will be okay.  That even if you feel like throwing a fit, cursing the heavens and The Powers That Be that - THIS IS NOT FAIR! LIFE IS NOT FAIR! Let’s face it - you must play the hand that you are dealt.  If you are extra fortunate, you won’t have problems financially dealing with treatments, if you aren’t so lucky – then maybe there will always be those who have hearts (and pockets) big enough to give you the help you need.  It won’t hurt to ask and oftentimes, any little bit helps.

It is a time to look around and realize how lucky you are to have people around you who will care, who will not shun you out of fear or not fully understanding your medical condition.  It is a time to start living, and I mean REALLY, living.

As someone who has been coping with Lupus Cerebritis  - this means the part of my body affected by the Lupus is my brain, as opposed to other parts such as the kidney, the liver, the lungs, the skin or the heart– I've considered myself quite fortunate.  Sure, it sucks, and there are days I wished that I didn't make it to the hospital in time prior to diagnosis, but hey! I’m still here! There has to be a reason for that.

It took a while for it to register when the diagnosis was given to me in 2004.  It took an even shorter time for it to sink in that, The Universe must love me because the doctor said: “Given the state you were in, had you been brought to the hospital a day later, you would have had an aneurysm and died. My brain froze and said – WHOA! Can you say that again? And WHAT is it that I have?  My mind both blank yet racing  - I ask – am I contagious?  NO. so I heave a sigh of relief.  It wasn’t till much later, as I had to stay in the hospital and got to know more about what my type of Lupus was about that I began to realize  - okay, this isn’t very funny.  This isn’t funny at all.

So I was depressed for a while – like for a whole year “a while” But strangely enough – one way I’ve learned to cope with having Lupus is to keep my sense of humor.  I’m not always very successful, and often make myself the butt of less than funny jokes, but hey! To each his or her own, right?I

I have been very blessed (and loved by The Universe) to be surrounded and gifted with so many individuals who  understand, try to understand, ask  if they don’t understand, or simply try to just be there for me despite everything.  I have both Lupus Cerebritis and am Bi-Polar as a result of this.  I also have   (at the ripe old age of 39) Rheumatoid Arthritis and Fibromyalgia. Fuuuuun.  Sometimes I wonder why I couldn’t have just won the mega-sweepstakes lottery instead?! (then I realize, I never really buy the tickets for those things, haha)

I am on medication to prevent clots in my brain, medication for pain management, medication for mood stabilization – which I’ve been pretty diligent about. I refuse to let my having Lupus stop me from experiencing life.  By the way – I LOVE taking public transportation!  (although I still manage to and actually drive)

I admit, this isn’t the best party I’ve ever attended by far. But! The Party Continues!  Sure, it’s difficult to get up in the morning, ok, so I can barely open a bottle of soda or twist open a door knob, fine that I can’t ever hope to get a proper tan and sunbathe (people with Lupus must avoid being under direct sunlight because the UV rays may and will trigger what is called a “flare” – in minor cases this involves an increase in pain, a fever or at the worst case a trip – and a few days – at the hospital. WooHoo! No thank you.

But there remain bigger things.  There are people who have it worse than me. 

I’m not boasting. I am being thankful.

I am glad I am still able to get around (although sometimes with the aid of a cane but on most days, you can’t really tell there is anything wrong with me. (note: THANK YOU FOR THE INVENTION OF PAIN MEDICATION!!!)

There is still so much that needs to be done – so much more that needs to be learned, so many more people to meet, lives to touch, things to improve, things to enjoy. The little miracles pass by without being noticed because I’m worried about so many other things that, at the end of the day, might not even matter that much.

There are those who have no homes to call their own, no security of tenure, of not knowing where their next meal is coming from, or if they will ever know a time when they don’t have to go to sleep on an empty stomach, kids who want to, but cannot go to school due to poor support from the government or general poverty; so many who have disappeared without a trace just because they were asking for what is truly theirs, or at least, what they are entitled to.

There isn’t escaping the ugliness around us, but I think we can find ways (no matter how small) to do what we can to make the world we live in a better place.

Help those who you think you can.

Find ways to reach out to those who might be too shy, say hello when someone says “Hi” even if you don’t know them. *(not recommended when experienced in a dark, empty street or alley though)

Look around and beyond ourselves for a moment and take the time to look into other people’s eyes.

Check in on a friend once in a while out of the “ever busy schedule without thinking  24 hours in a day is just not enough!”  We all get the same amount of time.  It is what we do with that time that matters.

Smile more.

Laugh more.

If you love someone, or like them, let them know in whatever way you can manage to. While you still can.

It’s a waste of precious time not to, because by the time you remember to do something about anything, it might be too late.

Get to know yourself better and figure out what really matters to you and see about doing something towards that end.

If you know of someone who has some medical condition, it’s perfectly fine to ask them about it on most occasions, and in others – there is always the internet. 

Point is. 

Educate yourself and get to know more about the people in your life.  About - the state of the nation in which you live.  At the very least – be aware of what’s going on around you.

With all that everyone needs to deal with constantly such as the mundane tasks of paying bills or getting to work, or finding a job.

Never forget you are lucky to be ALIVE.

I have to remind myself that a lot, so I have the inventors of Post-It to thank.. haha.

Yes, life doesn’t feel fair sometimes, but it isn’t terribly bad all the time.

Deal with it.

Because you can.

Believe it.

Mabuhay!!!

P.S.

I am writing this a a Thank You to all who continue to remain positive, and never fail to support causes that matter, people that can't help themselves but remain hopeful, people who love without condition and with full (if not very well attempted) understanding, and those who keep in mind to take the time to truly - LIVE.  My love and respect to you all. Maraming, Maraming Salamat Po!