So who’s afraid of dying?

Guillain-Barré has still no definitive cause but has been linked to vaccinations for flu and even COVID-19. It was because of my history with Guillain-Barré that I needed to wait, at the advise of immunologist Dr. Marisia Recto, for the Pfizer vaccine to be available. Ingredients used in, say, Sinovac could trigger Guillain-Barré in someone who already had it in the past.

It is not known to be in the genes. But I am not the only one to notice the rise of all kinds of autoimmune diseases lately and I am sure this has to do with the ever-increasing toxicity of our dying planet.

I was already in a private room when Dr. David Bautista, an EENT and cousin of my classmate Loren Legarda, came to see me. One look at my drooping eyes and he immediately thought of myasthenia gravis, or myasthenia for short.

People of my generation and older know this as the disease that hounded Aristotle Onassis, the second husband of Jackie Kennedy (John F. Kennedy’s widow). People the age of my kids probably don’t know who these people are.

Because of Dr. Bautista’s suspicions, the eminent neurologist Dr. Martesio Perez and his daughter Cymbeline got on my case. Many tests were performed to rule out the other autoimmune diseases but myasthenia in particular. 

In the end, it was determined that it was, indeed, Guillain-Barré which was in its way fortunate because this was the only autoimmune disease at the time known to have a cure. Others, like myasthenia or multiple sclerosis, had no cure and grew progressively worse, the body attacking itself and becoming its own worst enemy.

At this point, my husband was really worried and praying that it could have afflicted him instead — our two kids then were barely toddlers, and he didn’t how he could raise them by himself.

On the lighter side, my sister Letlet and I found it highly amusing when Dr. Perez came to visit during my brief hospital stay because he had this test where I had to look straight at him while he asked, arms akimbo and one hand twitching, “Which is moving, the left or the right?”

He would repeat this with one hand above his head and the other hand below, again one of them twitching. “Which hand is moving?” It looked so odd and yet somehow so familiar that Letlet and I would crack up afterward.

So now that the diagnosis was clear, treatment was simple yet not so simple. It consisted of mega doses of the ultra-expensive IVIG or intravenous immunoglobulin, which must be extracted from the blood of scores of healthy people. A pack of this today costs around P90,000.

Dosage depends on weight. Being a slim girl, my dose required was the amount needed to “buy a small car,” in the words of Dr. Perez. I have heard that for men the dose needed could reach a million pesos.

Before I could plead with my husband to sell our red car, my late mother-in-law stepped in and shouldered the payment. The effect was immediate.

Just the day before, two or so days into my hospital stay, an unkind or tactless nurse had come into my room and remarked that my drooping eyelids were getting much worse. I was now being fed completely through a tube in my nose yet somehow my quads were so strong I could still walk to the bathroom.

The moment the IVIG was inserted into my IV line I began to feel a light tingling in my fingertips. In 24 hours my condition reversed 100 percent and I was discharged. 

I bid goodbye to the unkind nurse at the station on my way out and her jaw dropped when she saw me, eyes normal and walking on my own.

The prohibitive cost of IVIG is, in my guess, what makes it prohibitive as a cure for anything else but a potentially fatal autoimmune disease.

You see, Guillain-Barré will run its course but if it hits your lungs before it does, that is what will kill you. My ninang Fenina’s mechanic had Guillain-Barré but by the time they knew what it was, it was too late which was too bad because she was both capable and willing to shoulder the cost of treatment.

Not to alarm anyone but I realize it was good to write about this since worldwide cases of Guillain-Barré are on the rise even though still rare — one in 200,000 back in the day. At the time I wrote about my experience for another paper, egged on by my classmate, the late Pamsy Tioseco, a lot of people read the story including the famous neurologist Dr. Joven Cuanang (equally famous for his Pinto Art Gallery.) I know it was helpful. Early intervention is both key and critical.

So now let me go back to my current near-death story.

Last week started with an itchy throat and the next day it was a dry cough that compounded a headache. I went for a dengue test, a COVID test, a CBC which showed normal range for platelets. My mom noticed my thick voice on the phone and said the last time her voice sounded like that it turned out to be pneumonia. So I went to the ER of St. Luke’s QC for a chest X-ray. 

All this time my temperature never went above 37.7 though I felt warm inside and my husband claimed I had high fever at night while I was asleep. But as he didn’t take my temperature we don’t really know.

When the results came out, the ER staff said that the results showed no sign of pneumonia, a few signs compatible with my age and that it was a cold. They could have probably elucidated more clearly but the ER was packed that day and there were many pressing cases all around me. They sent me home with a meds prescription that I ignored because I already had my own preferred cold medicines at home.

I did still have a cough with thick phlegm and had a slightly hard time breathing because of it, but using that contraption you clip on your finger to measure oxygen I was registering 98 percent.

My husband was not convinced it was not more serious so I looked at my X-ray results again and my blood froze.

I saw the words “…and/or possible fibrosis.”

My late uncle, architect Pablo “Jun” Antonio, passed away almost a year ago from a five-year bout with progressive fibrosis. Visions of having two to five years left to live danced in my head. It was a Friday by this time and no pulmonologists were available. If you Google “fibrosis” you will really be terrified.

I called my best friend Veronica before telling my family and gave myself a day to process the facts. I didn’t want to tell my family at first but Veronica explained how unfair that is to them. So I then called all of them and told them of the findings, starting with my husband and then my kids. The warm embraces and quiet tears from my two girls and my son’s teary-eyed face were immensely comforting and I knew then just how much I was loved.

We had an ongoing exhibit and booth at the National Arts and Crafts Fair at SM Megamall and I had missed the first three days already. My husband, daughter Hannah and sister Letlet filled in for me. 

But that Saturday I stopped using the oxygen machine we had, finding it more irritating than useful. I was breathing just fine and kept busy puttering around the house when the second quiet thunderclap hit me.

What if the ER staff was right all along and this was nothing but a cold? I shifted gears mentally—again.

The day before I had been thinking how glad I was that my things were organized, especially my office where in case something happened to me, my family had access to the thousands of recipes I’d taught at Tiny Kitchen over 25 years. 

Archives of my lolo Pablo, lola Marina, mom Malu Veloso, Vicky & Letlet Veloso plus every scrap of paper, drawing, artworks framed and not framed, awards—anything and everything that belonged to my kids—were all there.

Why do I keep even all the old notebooks and clothes of my kids instead of giving them away?

Because it gives me such sheer joy to even look at these things. I will keep them all till the day I really die.

I resolved to teach my three kids all my recipes even if they already know how to cook and prefer to leave the cooking chores to me. My children were all part of the first Philippine Junior Masterchef adventure, after all.

But now, realizing I might not be dying just yet, on the last day of the National Arts and Crafts Fair, I showed up bright and early with my daughter Hannah. We opened the booth and ran it till the whole family showed up including my mom and sister. We hobnobbed with my classmate Loren Legarda all day, ran into another childhood classmate Maribel Legarda of PETA, saw Chit Juan, Anson Yu, DTI’s Rhea Oreta Matute and so many others with whom me and my family go back decades and generations.

Dying was far from my mind.

Monday, the next day, I ran over to St Lukes BGC to see pulmonologist Dr. Noel Kasilag whose brother in internal medicine had been classmates with Dr. Ali Bengzon, my best friend Veronica’s kid brother.

He explained that the two tiny scars (which is what fibrosis is, scarring) were old and probably from some viral infection in the past. 

If it were the non-fatal pulmonary fibrosis due to COVID I should have lots of scars all over my lungs. But my lungs were clear, even despite a 17-year smoking habit that I gave up 30 years ago.

I had resolved, when I thought I was dying, to continue my life as I had already been living it with minimal changes.

I was almost amazed at myself for not being afraid of dying—again.

When I had Guillain-Barré I had called Pastor Joel Magpantay to anoint me with oil and pray because James, the brother of Jesus, said, “Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well.” (James 5:14-15)

At that time I was already receiving the IVIG treatment and Joel prayed from Psalms 91, “Because he loves me, says the Lord, I will rescue him; I will protect him, for he acknowledges my name.

“He will call upon me, and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation.”

Salvation.

This is the key to why twice in my life I was brought to the fore and proven that I was not afraid to die. It’s because I knew where I was going if I did die.

Do you?

If you don’t, the Bible very simply states that those who put their faith in the Lord and call Him Lord, asking forgiveness for their sins, shall be saved. Romans 10:9-10 says, “That if you confess with your mouth ‘Jesus is Lord’ and believe in your heart that God raised him from the dead, you will be saved.

“For it is with your heart that you believe and are justified, and it is with your mouth that you confess and are saved.”

Don’t worry if you don’t understand any of this or aren’t sure if your heart truly believes. Mine didn’t, or so I thought it didn’t when I made this prayer. 

But the effect was immediate and my life changed ever since, including losing the fear of dying. Just pray the words above as sincerely or as nervously as you can and let God do the rest.

Then go out and live your life as if you only had two years or less left to live.

Let me leave you with a recipe for the season to cheer you up. It’s good to know this because Starbucks stops serving its delicious pumpkin spice latte when they run out of supplies.

Pumpkin Spice Latte 

Brew a pitcher of coffee, any kind. Boil a simple syrup of equal amounts of water and brown sugar. Make your own pumpkin spice blend by combining about a teaspoon of cinnamon, a half teaspoon of nutmeg, and an eighth teaspoon of allspice. You could add a bit of ground ginger of you have any.

I blend the spices with a bit more brown sugar to make them easy to blend into the simple syrup which should be off the heat. Combine the coffee with this spice-infused syrup plus the milk of your choice. Adding cream is quite nice because it softens the edges of the spices.

Cheers and happy holidays!