I am living in silence, but I am not silent

I was thinking about what my topic will be for my next column in MB.. Since my cochlear implant isn't working so well the last few weeks, it's like I'm deaf again. Haha. And then I decided, my topic will be: about me being deaf.

I was recalling what I felt before, when I learned that there is a possibility I might go deaf & when that happened. I just learned that I have increasing brain tumors (tumors, meaning more than one ;P) and now I'm going deaf.. But my reaction was: OK. That didn't change a thing. Just read my column today. Haha ;P

Anyway, I posted my question/s as my fb status and asked my friends for answer..

Armin Cruz: una siyempre ma confused

Erika Gisalan: everything happens for a reason..God has a reason...tho it's really depressing...kc for me i really love music...at masakit tlaga isipin na time will come di ko na maririnig magagandang music sa paligid ko...pero habang may buhay may pag asa...entrust everything to God...

Joanna Arevalo: Doc, pde ba mag hearing aid na lang ako???

Bernadette Jamie Eustaquio: ako, chance lng pala e...so may chance dn na hindi ako mabingi...dun nlng ako mgsstick!sa chance na d ako mabbingi... =)

Mellisa Baduria Al Joabi: syempre wow sense of hearing ko mawawala eh music-lover pa naman ako... upset chaka disappointed... pero on 2nd thought, for usre may purpose naman si god eh why... tama si bernadette - chance lang naman pala eh.. cup half full ika nga...

Jhoy Gongob: sa una.. malulungkot... ika nga nila...pag may nawala may darating... sauna tlga mahirap tanggapin.. pero you will notice in the end.. may mas important pa lng dadating kesa sa nawala...god bless!

Mary Ann L T: ei, nasabi na yan sa akin ni doktora hehehe...na sad talaga ako lalo na ng malaman ko ang price ng hearing aid na dapat ilagay sa akin, susme, almost 500k lahat lahat, kasama operation. Baja type. Malungkot ang feeling kcat, sa akin nga, isa lang tenga, mas lalo na siguro sa iba, like you, mas masakit pakinggan at tanggapin. Pero as time goes by, unti unti namang natatnggap ng tao eh lalo na pag may relationship kay God. Ang daling tanggapin at may peace of mind ka pa.

Lynlyn de los Angeles: Thanks for asking kcat. I am glad someone finally asked me that question. I felt really bad. What immediately came into my mind was losing my functions and consequently, my profession which is my bread and butter. I thought about my son and his future. Totoo yun, napakalungkot.But soon enough, I finally realized that GOD has always been faithful. And through all my trials, HE never left me. At ang totoo, beyond medical science, above all else NF2 in particular...there's GOD.

Cecile Hernandez Pesayco: Kcat, siguro matatakot, iiyak. Tapos mas matatakot at mag worry kung paano sasabihin sa family ko. Kasi mas masakit kung alam mo na may mga taong mahihirapan dahil sa magiging kapansanan ko.

Lhen Jaurigue: ako? iiyak ako ng iiyak.... pero cguro later on matatanggap ko din... db in everything that happend may reason...

Marian Nairam: I'd be so scared... it's harder kasi I know I'd technically be mute too... pwedeng hindi agad-agad pero pagdating ng panahon... But somehow siguro aasa pa din ako... na temporary lang yun-- or matutulungan pa ng hearing aid or ng operation, or baka may nablock lang na something sa kung anuman and a minor operation would help... hindi naman ako doktor para isipin agad na habampanahon na akong mabibingi diba... or anuman... you can never really tell diba? Saka feeling ko naman if ever that will happen to me... there'd be signs-- yung pahina ng pahina at palabo ng palabo ang dating ng sounds... so... somehow I'd be prepared... I'll start taking up lessons na bago pa man mangyari iyong tuluyan na akong walang maririnig... Pero iyon nga... takot naman talaga sa umpisa diba? Saka... nakakabaliw siguro :(... nakakabingi naman kasi talaga ang sobrang katahimikan diba... to the point na nakakabaliw na siya... :'(

Jesel (our house help): uuwi ako samin

Michelle Tuason: ayokong isipin, kinakabahan ako *runs away from me*

Next question:

Kayzeleen Banico: oh my gosh.. mababaliw ako!!... haha

Armin Cruz: ma de depressed syempre. lalo na musikero ako, mahilig ako sa musika. mahirap yung nakasanayan mo na tapos mawawala na sa isang iglap. mabuti pa yung wala ka nang narinig sa simulat simula pa

David Mallari: i'd be very scared....parang hearing nothing at all would be one of my greatest fears.

Rey Refran: If that were to happen to me it'd be like the world has collapsed on me therefore making me worse than the lonesome person that I am.

Jana Angela: Scared and depressed. :(

Joanna Arevalo: I will shout..pro i think that one i wouldnt hear also..weird feeling kya bka maiyak na lang ako.. :(

Kariz Joyce Banico: hmmm... lahat cguro ng feelings mara2madaman ku... takot? lungkot? hinagpis? bkit aku? nde ku alam... ang sakit nun ksi nde ku na mari2nig ang mga2ndang boses ng aking pamilya, kaibigam at iba pa...='(

Mellisa Baduria Al Joabi: for someone who is as talkative as me, syempre wow mapa-praning ako! binge nga lang sa air travel or sa gamot inis na eh what more as in wala kang marinig?

Mary Grace C. Antonio: hmmm..naku cguro bka bumalik n lng aq s pgkakatulog... nkakatakot xe pg gnun..pro cmpre ppltng tangapn..kht msakit at mhrap..

Eloisa Apple: Hihingi ako ng tulong kasi na-pi-pe ata yung kasama ko..nyek nyek. Seryoso, nakakatakot yun Tack :)

I even asked some of mu friends to post the question and ask it to their friends as well..

Grace Arellano Torio-Aure: Thank God, Praise God! Kasi nakakakita at nakakalakad pa ako. Mahirap but there's so much to be thankful for.

Bro Martin D. Francisco: Malulungkot ako na posible pala akong mabingi at medyo matatakot kaya mamahalin ko na ang pandinig ko. Next question naman ay sobrang takot at hihingi ng tulong sa iba. Me kasmang pagsisisi kung bakit hindi ko pinahalagahan ang aking pandinig. but later I have to accept it and think an alternative like hearing aid.

Arsenio Lera: ‎...sorry ,bro di ako naniniwala sa mga sinabi ng duktor,lalo na kung future ko ang pinaguusapan......ikalawang tanong:..sa 1 isang araw pa iyon na di natin kung kelan ,yon.........siguro pag tanda ko marahil mararamdaman ko ang hina ng pandinig, at paghahandaan ko yon at makagawa ng panlunas bago pa humina ang pandinig ko ..bigan.

‎Kim Mendoza: 1) xempre magugulat kasi i see no reason in the past or present na pwedeng magcontribute sa pagkabingi ko in the future. i would treasure my ability to hear while i still can, and possibly learn/ practice to comprehend verbal things while pretending to be deaf as my form of preparation. 2) of course, panic would be my initial reaction. i would ask people around if i'm really deaf na talaga and hindi siya panaginip. and malulungkot ng sobra kasi biglaan. kumbaga, walang preparation. at pati ang pagsasalita ko ay maapektuhan. at ngayon bingi na ako, hindi ko na maririnig ang boses ng mga mahal ko sa buhay. hindi na ako makakarinig ng musika :(

Sam Rayala: Scary...if I reach a point when I cannot hear music, the laughter of children, the rustle of leaves when the wind blows, the singing of birds in the morning, my soulmate's sweet nothings and purrings, the sound of the raindrops on our roof....

Pulang Silangan: praktikal akong tao..1:malungkot pero may 2nd opinion naman diba..pero kung talagang yun na eh..yun na. 2:life must go on..pandinig lang ang nawala sa akin pero ang paningin lalo na ang pag-iisip ay andyan pa naman so marami pa akong pwedeng gawin..diyun para ikatigik ng mundo ko

Aeb Aveo Galang: nAKU DI MUNA ako malulungkot, siempre hearing aid ang unang papasok sa isip, baka sakali, marami nang magagaling na doctor ngayon at Modern Medical technology ngayon, kaya baka sa kali he!he! o kaya habang nakakarinig ka pa, pakinggan mo na ng paking gan ang magagandang maririnig he!he!

Clariza Calingasan Fernandez: ‎1. takot, pangamba...siguro magtatanong ng maraming tanong...bakit? paano? anong mangyayari? Sari-saring pakiramdam pero isang katiyakan, hindi ako matutuwa. Kasi may asawa at mga anak ako na gusto kong marinig parati kahit pa nga madalas ay pasaway, sa akin ang boses nila ay musika. 2. takot pa rin....pero wala na akong ibang pwedeng gawin kundi ang tanggapin ang katotohanan dahil kung puro takot ang paiiralin ko, paano pa rin ang mga taong nasa paligid ko na khit di ko man marinig ay nararamdaman ko. Kung malulungkot ako, malulungkot din sila. Sa akin kumukuha ng lakas ang mga anak ko. Kung magpapakita ako ng kahinaan, baka kahinaan din ang tumatak sa mura nilang isipan.
Panalangin at pasasalamat na wala man ako pandinig ay pwede pa akong marinig. May mata pa naman ako pwede pang magbasa...:-)

Aeb Aveo Galang: Pero ang magandang gawin ngayon ay ang pakinggan at unawain ang mga mabubuting mga tagubilin ng diyos sa atin, sabi ibinigay ko na sa inyo ang lahat, depende na yan sa inyong pag gamit at pag iingat, gagamitin ninyong mga yan sa mabuti at pag iingatan, at kung sabi'y kailangan ko nang kunin uli yan, meron siyang dahilan, importAnte ay nnagamit natin sa mabuti yong mga iyon:)

Michelle Gabutin-Nilo: ask for a second opinion first. pag wala ng pag asa, get a hearing aid! hehehe!

Kape Ng Pitunlibosandaatpito: parang apat po yung tanong pero haloz pare'parehaz lang.. bweno, cung ako siguro #1.hindi na ako magugulat don.marahil wala naman ako mashadong madarama pero baka magkaroon ako ng kaunting pag'aalala lang.konti lang naman.. #2.magugulat ako jan pihado!bagong karanasan,at nakakagimbal na katahimikan.pero doon ko pa lang malalaman cung malulungkot ba ako,oh magiging masaya rin kaya? hindi hindi ko pa alam ngayon.. Sa palagay ko,marami pa rin naman maaaring gawin,maski mawalang ng pandinig. Di ko 'lam cung para sa'n ang tanong, pero salamat na rin po. :)

Joyce Ira Yarza: i will be scared :(

Talitha Yarza: ‎sasabihihn ko sana bakamaloka ako :P pero dahil may kilala akong di makarinig at pinagaaralan namin hmmm.. MALULUNGKOT NALANG PANANDALIAN :P

Lei SanPedro- Chin: If I'm not an audiologist, I'm gonna cry and be scared I don't know until when. But as an audiologist, I'll be a little bit disappointing of course but I'll research what has happened to me, and know the things needed to solve it no matter what... :)

Bibay Espedido: I'll feel useless. :|

Myra Geronimo Capistrano: sobrang rattle ako 4 sure 2lad nung ng vision problem ung right eye ko, afraid to max specially during d procedures n pnagdaanan ko but still sobrang nging prayful ako and after all the tears inisip ko p din na GOD will never forsake me, he has the reason & i have no ryt 2 questioned him.

Pj Ramos: maloloka..

Myla Carballo-Flores: takot at first then find ways to solve the condition.

Fauziah Marie: i actually don't know... i think elizabeth kubler-ross was right. i'd probably go through denial, anger, bargaining, depression and acceptance. consciously or unconsciously. one at a time or all at the same time . then, i'll grab one of the best audiologists by the hand and say "life goes on..."! :D

Madge Lopez Yarza: at first mahirap, magka otitis media ka lang mahirap na, lalo pa pag malakas tinnitus mo, para ka na ring bingi. but you MUST learn to accept it. or else forever na backpack yan.

Athan Lopez Tibayan: ok lang i have heard what i want to hear naman na eh :)

Vince Tan: MAGPAPAKONSULTA AKO SA'YO!
audiologist ka diba? HAHAHAHA!

Micheal ザマイェリ IV: I would go straight to doctors office :p but if there isn't anything to do about it, then the sooner you accept it the better.

David B: as you know... this for me would be the end of life... i am a pianist... i need my ears

I really felt their emotions in all the answers and I could relate to some.

Although I already had signs of deafness w/c we thought was due to my otitis media, everything that happened was all sudden.

I'm living in silence now (when I'm not wearing my cochlear implant or when it runs out of battery.. haha) But I am still grateful because I should be.

And I even more felt more grateful when I got to know Katrina, Anja & Katrien and a lot of other deaf kids.

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Katirna Rambongga & her family is one one of many dearest persons in my life. I started know her (and her family) when his dad, Kuya John sent me a PM in multiply. He asked me how I did it? How I was able to raise the super expensive amount and had the cochlear implant? Katrina was 2 years old then, she can't hear on both ears and was advised to have a cochlear implant. I asked him to contact my mom, recommended him to my Neuro otologist, Dr. Charlotte Chiong and help them in their fund raising by giving them my support & ideas. Katrina has cochlear implant now.

When Katrina was 1 year old, Ate Karen realized that she doesn't hear Katrina making a sound yet, except when crying. Everyone thought her developments are just delayed. Ate Karen was so engrossed that Katrina has a heart problem so she don't want to entertain thoughts that there's something wrong with Kat, so she went with the idea that Kat is just delayed. But she must face it. So they went to a Nuerodevelopmental Pediatrician. During one of the activity, they saw that Katrina can't hear the ringing of the bell. She is deaf.

Karen Rambongga: "That time, I cried na para akong sinakluban ng langit at lupa hagulgul ako af if someone died. Awang awa ako sa anak ko. How will she cope with the world?"

But like me, she never questioned God 'why?' and moved on to the next step. She consulted Kat's case with a couple of ENT doctors.

Katrina had her ASSR hearing test when Ate Karen saw a deaf child with the same case as Kat ; the child was wearing a hearing aid and is talking. Ate Karen felt hopeful!

They went to another ENT doctor who help them to be more hopeful and gave a lot of encouragement. And coincidently, he is Dr. Elmo Lago. My ENT. The one who also gave us hope and said: "Habang may tenga, may pag-asa"

Katrina wore a hearing aid, but it wasn't long until it didn't work for her anymore and suggested cochlear implant.

Then they met me, my mom, Dra. Chiong, Mrs. Mueller of Med-El and strangers who becamefriends who help them in their fund raising campaign (kathrinahears.multiply.com). Katrina had angels from all over the world who helped her.

Karen Rambongga: "Sobrang dami kong gustong pasalamatan, God used so many people to be His tool to help us. Trully, if you have faith in Him and believe, nothing is impossible!"

Right now Katrina can already hear, but not yet clearly yet. She already uttered her first word. She needs continuous speech therapy in order to fully speak.

Ate Karen manages a blog where she shares her endeavors, experiences and journey as a mom of a deaf child over at http://katrinahears.blogspot.com

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I knew Anja when I stumbled upon her Mom, Ate Mai's multiply site. She putted up her site to sell stuffs to raise funds for her daughter's needs. For Anja's schooling and medical funds..

Ate Mai already suspected that there's something wrong with Anjawhen was only few months old because she wasn't responding to any sound. Though there were times when it seemed like she was hearing something but they learned that it was due to what she was seeing because she is a very perspective baby. When she was 10months old, the hearing tests that Anja did showed that she is deaf.

But Anja being deaf is nothing compared to her previous medical history; she had a hole in her heart when she was a baby and had a clot in her brain.

Jemima Ramos: "Kaya yung pagka-deaf ni Anja, keri na namin"

Just recently, Ate Mai figured out what had caused Anja's deafness. It was due to the antibiotic she took for UTI when she was a month pregnant with Anja.

Right now, she is enjoying her childhood and living normally even in silence. She goes to school, to the mall (either shopping, playing at timezone or eating her favorite ice cream), she also watches t.v., loves to read picture books, doing puzzles & blocks, drawing, writing and of course playing. Just like any other child her age.

While walking along the hallway..

Girl to Anja: Hi! (waves)

Anja: Aai! (waves)

Girl: What's ur name? (while bending over slightly to look into Anja's eyes)

Anja: (smiles)

Girl: Ano name mo? (still bent over)

Anja: (waves again and then turns away)

Girl to her friend: Ayaw nya sabihin name nya.

Friend: Baka shy siya.

Yes, Anja is starting to talk now now. And she is madaldal!

**********

Charisse Kho felt sad and became depressed when she learned that her daughter, Katrien is deaf. Katrien was 2 years old then. Cha noticed that Katrien wasn't talking yet and she wouldn't respond every time she is being called out. Cha had german measles when she was pregnant with Kat. But Cha still feels lucky because deafness is the only complication from the german measles.

Cha: "Sometimes when she plays with other kids who don't understand her condition, they bully her. May hurt akong nararamdman."

Although Katrien is naive about it.

Cha: "I just do by best to protect her."

Cha is doing her best to make Katrien hear. She is raising funds by doing events for a cause, selling shirts & baller wristbands in order for Katrien to have a cochlear implant and hear the world.

Katrien takes up lessons which doesn't require hearing. She takes up art & swimming lesson. She is quite skilled & talented. She easily adapts and can compete with other hearing kids. Cha is so happy and proud with Katrien.

Cha: "I guess the frustration comes in when you try your best to help your kid become normal. I'm fine with her being deaf and i love her just as she is but with the society we have, we have to adjust."

Aside from swimming and arts classes, she also takes up dancing weekly, she can easily mimic the moves even though she does't hear the music. She loves to play with other kids and loves to hug and kiss her loves ones.

Cha: "She can do what she enjoys doing, except everything is quiet."

**********

I am deaf, but I am still grateful! I already heard a lot for more than 22 years. I got to enjoy all the sounds of the world. I got irritated on the noise too. I got to listen to my favorite songs. A lot of songs made me sing and dance. I enjoyed listening to what my friends say. I had fun in concerts while listening to live music. I loved listening to the radio. I experienced a lot of long & sleepless phone calls with my friends. I got scared of creepy noises too. And I got to hear the words: "I LOVE YOU" from the people who are dear to me.

Playing with other deaf kids during the Med-El Christmas Party in 2009

Deaf kids performing during Defeating Deafness Symposium (2010 Disability Week at UP-PGH)