As a child, I remember seeing pictures of angels, Jesus and the Virgin Mary. I remember being inside of amazing churches, and chapels. There was something so peaceful about sitting inside a quiet church as if God’s arms were wrapped around me. I felt totally and completely safe. As if there was ever something terrible to happen outside of the church while I was in it, I would be completely protected and saved by the arms of God.
I have given up on finding the right religion. There are so many denominations out there but nothing seemed to resemble what I would have thought to be the religion as close to how it was when Jesus was here. I have been born Roman Catholic but I did not attend Catholic church. My family attended Quaker Fellowship when we came to the United States. It was a very peaceful and quiet way to worship. They sit in a room for one hour in complete silence, not exactly a way to teach about what I needed to know. The people there did not teach me much. We read a few verses in Sunday school but that was it. My parents were very busy making this new life for us in the United States and as much as they loved God and Jesus, they were private with their prayers. They did always remind me to love Him. I have actually given up searching for The church and shrugged it off saying, “When I die, Jesus will teach me the Truth because it’s been so twisted over all these years.”
One day I met a monk who changed my life forever. Something about him pointed me to discovering Orthodoxy. I never imagined, this religion, Orthodoxy, which holds so true to when Christ was here would be the most difficult worship I would ever have to learn. And I wanted so much to learn it.
There is so much singing and chanting and praying. So many prayers, a gazillion songs, ways to bow, prostrate, venerate, light candles, walk, bow etc, etc.
My heart struggles in so many ways. How can I do this right and still be loved by God? How much I so truly want to do this right. He deserves the best. There is so much to learn. Some of these people have not even been in the church as long and they seem to know every prayer, every song. Here I have in my hand, a book that a dear friend of mine puts together every week. I have read the songs in the book countless times and I can’t seem to follow them. It’s a vowel matching game. When I hear a song, I hear the vowels. (See previous blog called “Music” ) It’s difficult to be in the moment because not only am I playing the vowel matching game but I am also looking for my two very young children all the time. It is one thing to be a hearing mother looking and disciplining her children. But it’s another to be a legally deaf and legally blind mother doing the same. I can’t open my ears to listen while I discipline. I must look in the book and hear some vowels then find where we are in the service.
The church really is full of children. It appears that 2/3 of the congregation are children. My children sometimes do not stand where they should so I am looking for them. Sometimes I think my son talked loud but it was another child so I might discipline incorrectly. Sometimes I mistaken another child for my own. If I need to take my children out for misbehaving, I need to scan where the other children are. I certainly do not want to step on them. It’s almost like walking through a mine field. I am trying hard to scan a free path while holding the hands of two wiggly ones. Kind of like looking for a path through a pair of binoculars.
The bows and prostrations can be confusing. Some bow and some don’t . Sometimes a woman bows and I think I need to as well but she is just disciplining her child to behave. Sometimes it’s a half prostration but I am ready to drop fully to the ground. Then halfway there, I realize it’s a half prostration so I pretend to pick up something, like an earring and “put” it back in my ear.
We kiss icons at the church when we venerate. Sometimes i don’t feel the distance between me and the icon so I whack my head in it, fearing I may be the next one to break the glass. Sometimes in the narthex they won’t turn the light on, and i can tell there is an new icon placed there because of what the frame feels like , or perhaps it’s just the blobs of large areas of colors I see, and I don’t know the saint or can’t identify the saint. So what follows is my proper venerating with the improper prayer of “Saint, whoever you are on this picture, pray for me. ” And there are the candles. It’s a miracle they do stay upright in that sand when lit. But oh how long and thin they are. I am nervous I might hit one by accident and burn the church down.
During Lent there are so many services and most of them are at night. They dim the lights and I cannot even see my service book well. The prints in the books are small, the chanting can be fast paced, or really slow, so I play the vowel matching game again. I do not bring my children to the evening services as I will never be able to see or find them. Standing in a very dark room trying to follow a service actually makes me well up. I want to cry. How can I show God how much I want to be with Him, to be in his Kingdom if I can’t learn in a dark room? I should go to these services but look at me. Oh God, look at me. I stand here foolishly, so lost, how am I going to do this? No, I can’t walk away from this. This IS what I have been searching for my whole life. I try and collect myself not to look so silly. I am a grown up so I need to try and have some self control. I wouldn’t want the attention towards me and cause any trouble. So I breathe, try and play the vowel matching game again and continue.
Yes, there are great challenges for me. So one would think, why not switch to a church where it’s easier. Yes, I could very well do that but I never felt in my heart that churches should be customized to personalities. Maybe it’s the most difficult way for me to worship. It’s okay. It’s worth it. I will make it through. My heart is guiding me along the way. I found the path Home.
“Oooo e aaaaa Ooooo ee iiieee Ooooee ioa wo aaa eeerriii oooo ooooo…..”
This is how I hear the lyrics to one of my songs at church “Holy God, Holy Mighty, Holy Immortal One….” The song is slow so it’s easy to follow the vowels. I do not hear the consonants. In some cases I can hear some consonants but not always. A wonderful friend at church is making every effort to give me the songs and whatever the liturgy will be that day. Bless her heart. I scramble with the faster paced songs putting together the sound of those vowels. Hurry, hurry, hurry, what did those combination of vowels sound like that seems to resemble what is on my paper? Some things I can catch and some, forget it! Sometimes I try to match the vowels with the sound for months with no success. Sometimes I can follow the lyrics and then. bam, I get lost. Scramble again, look at the paper and see what vowel combination I am going to be able to pick up if I hear it. Quickly, my eyes searching, my ears listening. I am trying hard to be in the moment of the song, or the prayer or the glorification of it all. Ok, there I go..we are here in the song now. Ok. now let me be able to absorb the moment before I have to play the matching game again.
I absolutely love, love, love music and I have always wanted to learn to sing. I always dreamed of having this amazing voice singing from my heart. Someday. If TL Forsberg can do it, I believe I can too. But just not yet. When I find the right teacher then i know for sure, it’s time.
Songs and music are one of my passions. I love talking about it for hours, lip syncing to it and dancing to it. For me to like a song, I have to like the sound of the song first. This includes the combination of the voice with the music. I love bass and drums but I don’t need them to enjoy music, just good sound. If the sound in a song is like a story it usually grabs me. Once I like a sound, I will look up the song and find the lyrics. Sometimes I am happy with my discovery. It’s so lovely to find a song with lyrics you can relate to. There are some amazing songwriters out there. What a gift they have. But you know, sometimes I am shocked and disappointed with some of the lyrics and sometimes it gets really funny. Like when I loved this particular song as a kid.
Back when I was younger, my sister would offer to tell me the name of a song for a penny. This was before the internet. No, this was not in the 1800’s . She just came up with this silly penny bribe. So, when she found out the name of a song, I would go and buy the record. One day I loved a particular song for three weeks. I would boogie and boogie to the beat every time it came up on the radio. When my sister finally found out the name of the song, she shook her head.
“So…what is it??” I exclaimed.
“Are you sure you want to know the name of the song?” my sister asked.
“Yes! Yes! Please tell me!” I begged.
“Well….it’s….a Burger King commercial.”
“What?!!” I thought, shocked, speechless.
Embarrassed. I was shaking my rump to burger, fries …..“Have it Your Way..” for three weeks. Goodness, next time I could fall in love with a song for Prudential. Now that I think back about this story, I get a good laugh. However, now with the computer age, I don’t make such a mistake.
With my iPod, I can really hear the music. I have to take my hearing aids off and wear headphones to get the best of the sound of music. I also have to use headphones on radios too. I could be at a concert, in a car, at a friend’s house with the best sound system ever but only with headphones do I hear the music the clearest and best. When I have a free moment to really wear headphones, I do. Especially on walks. I know, I know, so many people freak out when they know I wear headphones when I go for a walk. How can a legally deaf and legally blind person walk with headphones blaring on maximum volume? Back in my urban lifestyle days, I got so many stares due to my loud volume pouring out of my little headphones. I would just smile and keep on jamming. Aaah, music!! But yes, oh how wonderful it would be if I could be in the moment of the lyrics too which is the kind of thing that happens to hearing people. A song makes a memory for so many by lyrics but for me, it’s not the lyrics, it’s the sound unless of course, I made a lucky discovery. But what wonderful sound…as long as it’s not a Burger King commercial.
I have a big weakness, I love people. I truly, truly love and care about people. My heart has always had a huge place for so many. My life has filled me with some amazing people. I often also tend to care for people who would never think twice to talk to me or look my way.
I know that loosing my hearing makes for some great communication challenges. When I was in my 20’s, having my car helped me to meet others at agreed locations. I loved the freedom and independency I had driving my cars. Windows down, music turned up (with bass jacked up a bit, of course), I could go anywhere whenever I chose. What wonderful freedom. What a true blessing. Hop in the car and go! The first car I bought, his name was Sebastian (I know, I had to name my cars) was a great friend. I was able to meet people halfway to get together or to bring them food if they were sick, to meet and spend time with them or go and help them if they needed me. But now I have not only the inability to talk on the phone but also the inability to drive.
A friend posted on Facebook that her pastor spoke about friendship. He said, “If you need a friend, you need to be a friend,” Most would not give this statement much thought. But it’s so true. Friendships, just as much as relationships and marriages, take effort on both parties. It requires consistency and unconditional love and drive to make it work.
If you have a friend who is sick and needs a meal, you’d easily call her, make the meal, hop in the car and deliver it. Mission accomplished. Then you’d call your friend a few times to make sure they are okay, Everyone knows that a voice on the other end of the line is very personal and a sign that someone truly cares. An email is great but just not as personal as the sound of a caring voice or the presence of someone checking in. Something I really wish I could do.
Friendships are also formed a lot via the phone. And to have a car to meet them makes it easy too. For me, this is very difficult, therefore my efforts to be consistent is more challenging.
I am forever grateful if someone can make an effort to speak with me. Then I become full of hope that maybe I can develop a friendship with this particular person. I try and find a way into their hearts. Usually making them a cake or asking them to come over, or to send them an email, or two, or three. Not because I am trying to persuade them but because I really, truly care for them and want to get to know them. Oftentimes I am tap dancing so hard, so much, so foolishly, hoping, just hoping that someone can let me enter their heart. I cannot tell you how often I have emailed, sent cards, given gifts, tried to get together. I have known people who have never invited my family over for dinner yet I have. People who never bothered to send a card or to even write me to see how I am doing yet I did often. Not that I expect everyone to be like me. Nor do I expect everyone I meet to care for me. I know it’s not realistic. Nor is it realistic to bounce from person to person trying to connect with them once or twice and hope it will become a deep. meaningful friendship.
But sometimes I do wonder, do I walk funny? Was there hair in my cake? Do I snort when I laugh? Do my eyes look crossed? Did I write something offensive in my email? Am I really that different? Can a legally deaf and blind person be one of the closest, most loving people someone could be friends with? Do we have anything to offer others?
Since becoming legally deaf and legally blind, it makes for some great challenges to develop deep meaningful close friendships. And all the while, I never give up hope, like a silly little puppy, I am always wagging my tail, loving everyone who picks me up. with so much love to give. My arms are always reaching out for someone who can love me the way I love them. To laugh, to be totally silly, to cry with, to have coffee with, to sing out loud with even if I can’t sing. Someone who knows, yes, they can come to me because they can see, I am like everyone else. As my world is getting darker and quieter, my heart will always beat loud and see the light of hope for all those who I love and care for and are not afraid of being my friend.
Sitting in the chair in the doctor’s office at the Chicago Lighthouse For The Blind, I was trying to absorb what my future held (or didn’t) after receiving news that I was legally blind. It was a surreal news and just difficult to comprehend.
I only lived in Chicago for a year and then returned to Baltimore. Once I returned, there were many who were coming to me in droves trying to find a solution to my new change in life. I was now. not only profoundly deaf but legally blind. A family member had a seeing eye dog company at my front door upon returning home from work without my knowing. People were asking me to learn to read braille, go on disability, give my remaining independence up to fully trusting a non-living object, a cane, to guide me. A friend of my dad’s who worked with the deaf blind community urged me to go to a deaf blind camp to meet others like myself. I was urged to learn sign language now so that I will recognize them as tactile if and when my vision will be completely gone.
So I tried to give up and be what society wanted me to be. To wear the huge wrap around horrific sunglasses, to wear the ever so bland color combinations of “robin’s egg blue” shirts, khaki pants and orthopedic shoes the color of Silly Putty that looked like someone pushed clay around ones feet. Not that there is anything wrong with robin’s egg blue or khaki or orthopedic shoes but does it really need to be something blind had to wear? I felt I needed to give up the language I knew all my life, to give up my own self trust to a long metal stick. To give up all interest in color and style and to just be a living, breathing “thing”.
I did learn sign language and although I am not perfect at it, it helped bring me closer to those who used it as their first language. It also helped me to develop closer relationships and friendships with those who were deaf/blind and to help them by creating two amazing camps for deaf/blind people which still to this day continue. For that I am forever grateful.
I also tried the cane and could not trust it. It would bump into a crack and skip over a bump which it should have signaled to me, only to make me trip anyway. I used the cane for a few days and would watch the endless stares, “How could a blind person use a cane and read and stare at me in the eye?? What the ….?!!!” So of course, numerous times people would approach me and ask, mumbling as of course , I did not “look” deaf. Then of course the traditional reply would start, “Maam, I am hearing impaired also so you will have to move your lips a bit more and speak clearly but not loudly.” Oftentimes the stares spoke volumes, They did not know how to put the information together. “Why would a person need to speak clearly and move their lips more to a BLIND person??? What the…? “ It’s not that I cared what people thought of me, but society only sees things in black and white and not see the gray. What I mean by that is most people think a person can only be fully blind or not blind at all. But honestly, I felt that I still had enough vision to make it work for me but just a bit slower. I needed to learn how a certain road or sidewalk is, the traffic patterns of an area, the people’s patterns in a store or event. It’s really more so the moving things that one has to look out for. And if I put all my trust into a non-living object, it would mean weakening my own self trust, my strength in my eyes to scan and for my body to feel things around me. If I lost that cane, I also lost with it a lot of myself.
The braille I did not even begin to give thought to. For one, learning braille would be like learning any other language and not using it. Do you remember how to speak fluent French like you did in high school although you have never been to France before or know any living soul who knows French? When the time is near and I need to learn it, I will. I just don’t feel it’s time now.
So what I decided to do and I know it is not what society wants me to do, is to be me. To be who I really am. I don’t like to wear robin’s egg blue or “Silly Putty Shoes”. I don’t wish to wear sunglasses that are bigger than my head. Or to completely give up my own self trust to a cane just yet. And honestly, this route I have chosen is actually much more difficult than what society wants for me Society has always felt the need to fix every disability. Being disabled does not mean being unable to do something, it just means doing things a bit differently. But It’s time for society to wake up and realize that the world is indeed full of so many unique people. If we were all the same, it would be a very boring world and we’d have nothing to learn from each other. I am not trying to be different , I am only trying to be me. Not having to pretend makes me happier. Yes, I still walk slowly and bump into things at times. Strangers continue to question it and think I am some doped up drunk woman and wonder why I can’t walk a straight line (My dreams of becoming a tighrope walker are shot, Rats!) . Someday when my age catches up with me, everyone will understand without any explanation and everyone will be at peace. “She’s just an old lady who can’t see and hear. “ Just not yet, just not now.
Apples are apples are apples as deaf/blind are deaf/blind are deaf/blind. Not. I want to spare you the scientifics but I will add a few just for those who need it. I have been diagnosed to have Usher Syndrome Type 3. There are various types of Usher Syndrome. Usher’s Syndrome is a genetic condition consisting of retinatis pigmentosa and deafness combined. I am throwing in a link only because this will give a wealth of information to those who are curious.
Do I have Usher’? I have only dug a bit deeper last year and discovered that a penicillin I was given at the age of three could have been the reason for my deafness and blindness. There is no sound proof but a doctor in my birth country, Hungary, has learned that in the late 60’s many children have been overdosed with this antibiotic and have lost hearing and/or vision.
Yes, I can go on and on looking for the reason behind this limitation of mine. Will it make a difference in my life? Realistically , no. I have visited countless opticians, and doctors including some of the best at Johns Hopkins. It will bring me a peace of mind to know the facts maybe but life will continue.
Right now I have 5 percent peripheral vision left. And with my hearing aids, I can hear pretty well. I am however considered profoundly deaf by my audiologist because my loss is so severe, it puts me in the profoundly deaf bracket. She urges me to get Cochlear Implants but I am not convinced it would help due to what I have seen and heard. But let’s spare this story for another time.
Some “deaf/blind” can still talk on the phone and drive, some can’t do either (like me) , some are also physically disabled. There is a huge variety. Some speak using sign language, some tactile sign, some use speech and no signing. Some are culturally deaf, some like me are profoundly deaf but use speech, some are actually profoundly deaf and can hear better than me but refuse to wear hearing aids. We each have our limitations and we each find a way to make our life work for us to the best of our remaining abilities.
There is always hope for a cure or a solution but in the meantime, there is this life I want to live and live it I shall. Because in the end, it is not the years in your life but the life in your years that count.
Like a silly puppy, here I go. Never loosing hope, always believing there is hope for me to find the bond I have always dreamed of. This happens in any group setting and not just a girl’s night out.
So here I go, getting ready for a girl’s night out. Chin hair plucked, teeth polished all dressed and waiting for my ride. We arrive to the restaurant. It’s a going away party. There are nine of us. The girls made sure the lighting is good for me but in a group setting this matters little however I am grateful for their efforts. It is very sweet.
Once seated, I search the group, hoping to grab a lip. Someone’s lips I can try and lipread to find the subject of the conversation. I watch the formation of the lip trying to find a subject matter. Sometimes they don’t move their lips much or slow enough but I try. The girl I am focusing on stops speaking and someone else is talking now. I scan quickly to find who is speaking next. It goes on and on like watching an intense racquetball game. My eyes are getting tired…already. Next thing I know, everyone throws their heads back, hairs flowing, laughter fills the air. I have no idea what was being spoken about. The women look like they are having a great time, sharing a special moment together, a time when everyone understands what was said, when everyone can speak on top of one another’s sentences yet still understand each other. The moment is so electrifying, so unique, just that single moment, those sacred few seconds that I dare not interrupt and tap someone on the shoulder and ask, “What was so funny?” I let them have their moment, their time, their sacred few seconds.
I sit there, smile my Miss. America smile when they do and laugh when they do because that is the only behavior the moment allows. Yet I am sad, I become very lonely but somehow at the same time, so foolish and so hopeful that one of them will remember. One of them will take the time to acknowledge my circumstances, one of them will want me to be a part of the moment, even if it means interrupting with “What was so funny?” And as much as these situations happen to me most of the time in a group setting, I continue like a silly puppy, to wag my tail, to always be filled with hope, to be a part of conversations just like the girls who shared those sacred few seconds.
One summer, when I was four, I remember sitting under our big walnut tree. Mom approached me with a large sunflower head. It looked huge but then again, many things look huge when you are four years old. She knelt down and put the sunflower in my lap and showed me how to eat them. First you wiggle a seed until it becomes loose, take the seed and crack between your teeth and eat the contents, the fresh raw organic seeds on the sunflower.
The breeze was gentle, the sun, warm. I watched mom walk back to the house and I, I just fell asleep under the big walnut tree with the huge sunflower on my lap. When I awoke, it was as if the world stopped and slept with me. Everything paused when I slept and when I awoke the world resumed. The sky was the most beautiful blue, the breeze ever so gentle and the garden, like a garden of Eden. The world was amazing to me, even at the age of four. But at that age, it was just a year over that my life took a huge turn.
This was the beginning of my journey of growing up deaf blind. Of course at first this sounds rather strange to most. How can one be deaf blind if they don’t look deaf blind? How could one call themselves deaf blind if they don’t look deaf blind?
So starts the story of my journey here which I will share with you. My journey as a child, a woman, a mother, a wife. Some stories will be funny, some scary, some sad and some lonely.
I am not an amazing writer but it is here I hope to reach those who are not afraid to learn, to understand and to reach out to the few of us who are deaf blind. As I say, we are more alike than we are different. We all put our pants on , one leg at a time.