Letter to Mariel, May 31, 2009

Dear Mommy,

I went to the mall again today, trying to get some of the old ‘excitement ‘ back. But then even in the midst of a great sea of shopaholics, I still find myself so alone. I’m missing those times we would be there trying to hunt for ‘ great bargains’. Yes, you would have loved the Power Plant today, there’s the usual cakes and pastries exhibition and your beloved Marks and Spencer Sale (of course, I’m usually the one happily at the receiving end of this). I even watched a movie- Angels and Demons- alone. It was quite engaging till the end credits when I again realized that I  have much more time on my hands to fritter away this day. I’m really sorry too, especially to my dear friend Jan and ever-caring niece Mariel if I have to sound again to be a bit on the gloomier side. You see, I just can’t help it because I still think a whole lot about you all the time. (But you already know this too well)

It’s been about one year, eight months and ten days since you were called back to the Lord’s garden. And I just feel so lonely today. It’s the way things are, after the kind offers of sympathy, comforting calls and messages had to give way to life’s  more “pressing realities” for many of our dearest loved ones and friends. I know that it’s not that they don’t care anymore. It’s just that like most people, they just have to move on. (Oh, the moving on thing again). Well in my case. I’m pretty sure that I cannot ever if it will mean living my life without you. And I want you to know that you will always be part of  my life, my “reality”.

Because you will always be part of every little birthday party we celebrate for our Sammy. Will always be there when she gets that recognition from school. Will be there too watching all her musical performances. Will be there with me when I buy those new shoes or clothes for her. There  for her own lovely wedding some day.  And surely there every single day when we wake up or go to bed at night, it will always be– “We love you Mommy”. You will ALWAYS be with us.

I love you Mariel. Don’t worry about Sam because she will grow up to be like the wonderful and loving person that  you were/ are (I’ll make sure of that). And I know she misses you too very much. Good night

With all my love,

Bong

Through the Looking Glass

This week brought me back to where my journey had began. I tried so hard to avoid going to UST hospital this past year but I just couldn’t get out of this one simply because Sam needed to be admitted to the same hospital after having taken some “bad food” at a party and her pediatrician happens to come from the very place too. And much more, the only available room was on the same floor where Mariel and I had stayed a year ago. It was like diving to the trenches anew. Tough luck or providence? You be the judge.

For a time I was of course more preoccupied with Sam who was going through the lab tests and was running a high fever. But still the images and emotions of the recent past had kept hounding me, taunting me to confront my fears and regrets. It wasn’t long before I had finally found the guts to again walk the long, lonely corridor. To relive the days when time had stood still. To return to the valley of tears.

I must admit however that it was not as bad as I had imagined. In fact, I felt a certain kind of peace with my sadness, as I stood outside the door where Mariel and I had shared seven fateful days not so long ago, believing love will be enough to get us through. At that point, some nurses at the station recognized me and remembered Mariel. (I guess very few people really forget her once they somehow get to know her.) They said they remembered most the whiteness and porcelain-like texture of her skin. I’m not surprised though, because I had always known that Mariel had radiated such simplicity and childlike purity. That’s what most people usually grasp, that was the very feeling I had when I met her for the first time at the Gourmet Cafe. She was glowing and almost translucent. It was like old times again for some fleeting moments. And I neither felt afraid nor burdened because I was sure, Mariel was there holding my hand.

Good night Mommy. ‘ Love you.

Yes Virginia, it’s not Virus

I just want to set the record straight. Mariel’s illness was not caused by any virus or something like it . It’s not something she caught in our recent trip abroad or acquired thru something she did or did not do. It’s not SARS, Bird Flu, not even TB. Mariel was healthier than just about most of us until something probably triggered the chain of events in her system.

I’ve been told that Connective Tissue Disease is simply her OWN antibodies deciding to stage a mutiny. The very same antibodies which are present in ALL of us, suddenly deciding to attack the very same person it was meant to protect. In this case, the love of my life, Mariel.

It’s a cruel disease because it gave no real warning. Unfortunately, its also something Medical Science has not really found a true “cure” for at the moment. At best, Medicine can just try to mitigate or slow down its harmful symptoms. I beg doctors who may be reading this to please jump in and enlighten us all on this dark, treacherous disease.

Is there a doctor in the house? (part 2)

I loved Mariel so much. More rantings about Undifferentiated Connective Tissue wont bring her back. But, as much as it hurts retelling her illness, I must try to find out. So that others wont have to suffer. So others will stand a chance. Mariel would have google- searched till she gets an answer. She is thorough. Saving others will surely make her happy.

Is low hemoglobin count a relevant marker or precursor for her sickness? She had this come out of her blood chem results consistently the last few months before she went to the hospital. But as usual she was asked to take Iberet or Iron supplements and come back after 4 weeks. Just asking?

Is there a doctor in the house?

I lost my Mariel to Interstitial Lung Disease caused by Undifferentiated Connective Tissue Disease. Barely six weeks after we checked with a dermatologist to complain about some ordinary rashes and fever. ( We were even discharged earlier at another hospital for what they thought was merely a viral infection, after ruling out Dengue ).

C3 ANA test, Lupus panel, Malaria check, TB check, Typhoid check, X-rays, Punch biopsy, Hi-res CT scan all proved negative initially. Until one day, someone mentioned interstitial blah blah. Medrol, Plaquinil, Azythromycin, Pulse therapy, Rituximab, Deep Vein 2-D echo, ICU,Ventilator later didn’t seem to help. I know the doctors did the best they could, but is there really something more I could have done for Mariel? I was with Mariel 24/7 in the last 10 days at the hospital. I suffered too with every dip of the Oximeter, that painful alarm, the Spirometer torture machine and Mariel’s every brave attempt to fight off the disease. She kept strong faith in God through it all until He took her on Sept. 20, 2007. The only reason perhaps I could not bring myself to “hate” God for what happened to her was the fact that she suffered more than my whining self and never wavered. Thus, Mariel is my angel for saving my soul.

Undifferentiated Connective Tissue disease is a cruel, strange, kilometric, treacherous, despicable, double- barreled snob of a disease. I will fight it now for Mariel through my own dying breath.