What's for Breakfast?

Note: Names and other identifiers have been changed

Once the door is open, a line of people come piling in, as though they have been standing out there all night. Who knows, some of them may have been. All the food is laid out, and my fellow volunteers and I are ready for the long day ahead. We have already been here a while, but now the coffee urns are filled and the hard boiled eggs are out. These are the essentials. Bagels and cereal are lined in rows across the long food table. We serve breakfast buffet-style in the basement of an old church.

There are a number of tables set up in rows where people gather. The walls are plastered with inspirational quotes, food stamp information, and lists of local services and AA meetings. The people who created this space somehow turned a dark, cold church basement into a place that was relatively cool in the summer, and warm in the winter, even when resources in this run-down mill town are difficult to come by. That is what so many people here.

Just down the street, a few houses up, is where those two boys were shot not too long ago. A few buildings on the block are abandoned and some buildings were burnt down by arson last year. These are tough times, and the people in this neighborhood are really feeling the heat.

A tall man dressed in a large winter coat catches my eye. He has not been to the center for a while, but I remember him. I know him because he is always wearing that big blue jacket, even now when it is the middle of July, and the temperature is up in the 80s. “Good Morning, Robert!” I call from across the room. “How are you today?” I quickly regret the simple question I had just asked him, because I knew what may be coming next. “Well…” he replies slowly, “I am having problems with my bowels.” I knew what I had gotten myself into; I was just being polite. “Will you pray for me that my bowels will get better?” “Yes Robert, I am sorry to hear that.” I reply with a smile. I quickly change the subject. “Come on in and get something to eat.”

Now that the chaos seems to have subsided for a moment, and everyone is sitting down with their breakfast, I look around at all the faces for others that I recognize. Zoe and Sarah are sitting at a table consuming large quantities of the coveted hard boiled eggs. They had a commitment ceremony in this room a week ago. Zoe’s attire bears a strong resemblance to that of a teenage boy, twenty years her junior. She wears a baseball cap backwards on her shaved head. Her jeans are so low, that she waddles to the breakfast table and her boxer shorts hang out under her baggy shirt. Her partner Sarah is completely the opposite. She wears girly tops that are two sizes too tight.

Carol is sitting by herself in the corner. She is also dressed inappropriately for the season. As she drinks her coffee, she is speaking loudly to the crowd, even though clearly nobody is listening. “I am a 50 year old woman” she calls out in her high raspy voice. “I am not having sex” she calls repeatedly. “Reading makes you smart”, “I am not having sex” she laughs. What she is saying is clearly important and makes sense to her, but the rest of us do not understand. Most people do not even try to understand. She is always alone at a table in the corner. She does not like to have people in her space. I have learned that from experience. She is constantly talking even though no one is listening. I occasionally sit down with her. Most people do not have the patience. We keep an eye on her though; she likes to stuff things into her empty purse.

As the morning progresses, crowds seem to move in and out in waves. People come in from all walks of life, particularly in this rough economy. I see a mother and her three small children. I have never seen them before. As they come into the room, her little boy looks up to her with curious eyes and asks “Why are we here Mommy?” I can see the sense of guilt rush across her face. In a weak voice she replies quietly “We are here because we ain’t got no food at home.”

People come in often looking for basic things like toilet paper and laundry detergent. We have a small stash in the back. I will never get over the reactions when I am able to hand someone a role of toilet paper or a bar of soap, and they are so happy they are almost in tears. Other times I come out of the stock room empty-handed, and I feel so helpless I can barely stand it. I have to maintain a positive attitude and a listening ear, no matter how gut-wrenching a story I may be faced with.

As I hand a mother a grocery bag with a weeks worth of diapers for her newborn baby, I see Carol sneaking eggs, sugar packets, and anything she can get her hands on. I have to confront her. The strong scent of urine overwhelms me as I get closer. How can I stop someone who is struggling so much? Why can’t I let people take as much as they need?

“Excuse me Carol,” I say softly, “The food is supposed to stay here.” She stares down her nose at me. She is tall and thin. As she looks down in my direction, in a “who are you to tell me what to do” kind of way, she proceeds to take food from the table and stuff it in her bag. Her long face has quickly morphed from laughter to a menacing grin. I ask her if she would like to stay and eat, but she has stopped listening all-together. People can get pretty tough around the edges when they are so hard up. When I ask her one more time to stop taking the food, I tell her it is time for her to leave, and walk with her towards the door. She is now standing in the doorway cackling at me. She clearly has several inches on me, and who knows what kinds of objects she has in that long coat. Just then Walter, a tall middle-aged man who works in the computer room came charging down the hallway towards us. He had clearly heard some commotion. He pushed me aside and forcefully escorted Carol out the door.

I have learned a lot working here. It is hard to maintain a balanced composure when I realize what some of these people have to face. My experience here has often left me with a sense of ethical conflict. I can not always give people what they need. I have learned that there are many ways that people deal with these tough situations. I see people at their lowest points as they lose their housing, can’t feed their families, have lost loved ones, and some who just can’t take it and have committed suicide. This center can be a dark place where it all hangs out, or a joyous place where someone just found a job after living on the street, or had a commitment ceremony in a church basement. It all depends on the day, and what life serves up for breakfast.

A Lesson Learned

This screw has a prominent spot above my desk. When I come across an obstacle in school, my home life, depression or a tragedy, I turn to this screw for comfort. Why you ask. This screw represents overcoming obstacles. Taking an unexpected or unplanned path to reach your goal. I have come across these kinds of hurdles a lot lately, but the story of the screw (and the cork) help me to gain perspective and figure out what I need to do to accomplish a given goal, rather than panicking about how I am going to get there.

We were in Vermont for the weekend, and like we do on many of these trips, we had certain people we wanted to see. One person, who always makes this list, is my friend Corrie. Corrie and I went to church and high school together, and traveled with the venture scouts. Growing up, we were always playing music, making each other laugh or going on trips around the country and beyond. One night while in Montpelier, Amy and I went to visit Corrie. She was housesitting. Like any good house guest, we brought over a bottle of wine and some cheese to enjoy as we spent the evening catching up. As we went to open the wine, we realized that it was not a screw top, and a cork screw was required. Because we were in someone else’s home, we did not have the capacity to just open a drawer and whip one out like Racheal Ray or The Barefoot Contessa. We searched high and low for a corkscrew with no avail. We finally gave up on the search, but desperate to break into the bottle, we began trying other avenues. Corrie widened the hunt and began opening cabinets and closets. We ended up with a toolbox. I couldn’t tell you everything we tried that night, but in true Wilcox-Webb style, we were not going to give up. We ended up with a screwdriver and a screw. Together, Corrie, Amy and I took turns. One would hold the bottom of the bottle, another would hold the top, while the third person applied muscle, wrist power and sheer determination to maneuver the screwdriver. All this while laughing our asses off.

Struggling to breathe from laughter, and with tired arms, our determination and persistence finally paid off…about half an hour later. We were finally able to enjoy the fruits of our labor, and we had a new hilarious story to add to our memory banks of times together. The biggest thing I learned that night? You can achieve anything as long as you have a little persistence, patience and the ability to laugh at yourself. The path may not go the way you expected, but no matter the hurdle, the goal is always achievable.

Contradicting Christmas

Today we hit the mall for our annual stocking shopping and to finish up other last minute gifts. Not surprisingly, it was a mad house! Children yelling, music blaring, and bells ringing only make up a fraction of the auditory smorgasbord. All of this, I was expecting. I had also psyched myself up for crows, long lines, and the occasional tall guy walking into my 4’10” self. What shocked me, were the details within these crowds that I observed while standing in long lines or following in the parade of people crawling, running, rolling skipping etc. into each store. People were yelling, laughing behind others’ backs, leaving small children in the wake as they dashed for the desired big ticket items. Of course I understand that Christmas has become highly materialistic and commercialized, but to abuse and compete with others to purchase as much as possible seems to be contradicting the meaning of Christmas. I even ended up walking in front of two young men who were admittedly enjoying running into other people and stopping them in their tracks. I just wonder, if I wasn't so focused on the fact that I have to spend Christmas without my daddy, if I was not so set on being able to survive Christmas, let alone enjoy it, would I have noticed all this inhumane behavior? Would I be oblivious, or would I be a part of it? This holiday season I have my time and energy examining myself, my family, and how we will all keep moving forward not just through the crows or the checkout line, but through this holiday, and all the days and holidays to come.

Dad's take on education. (Brian Webb 1948-2014)

Sopping wet in the rain, my dad ducked into the nearest building to wait for the storm to subside. He opened the door and entered the American Embassy. While he was waiting, he spotted an advertisement on the bulletin board which told about the music program at Indiana University. My dad was 22 when he left his homeland of New Zealand in 1971 to continue his study in music in Indiana. He arrived in the United States on a student visa, and planned to return to New Zealand once he completed his studies in choral conducting. Forty-two years later, he has become an American citizen, built a successful career, and raised a family in the United States, all because he wanted to get out of the rain.

Brian Webb was born in Auckland, New Zealand in 1948.  He was raised in a suburban neighborhood and lived with his parents, one sister and Toby, the family dog. His father was a teacher who later went on to become principal and superintendent. His mother, also a teacher, was a Greek and Latin scholar. Though they were both born in New Zealand, his father was of Irish descent and his mother of British.

The most important thing Brian learned from his parents was the value of hard work, and the importance of getting along with others no matter the situation or environment one is in. A significant cultural and religious influence was his family’s involvement in the Anglican Church. His greatest take-away from this experience was the rich music heritage. This is where his life-long passion for music began.

Brian attended urban schools which averaged about 400 students. On his first day of school, “Standard 1”, he remembers asking children to play with him on the playground. The boys said no, but Brian stayed and played with them anyway. To this day he still remembers the student’s names. He described his classmates as Caucasian, coming from middle-class Protestant families. He recalls very few disabilities or cultural differences among students. He remembered the curriculum and the text books to be very similar to what one would find in the United States. Students were assessed by administered tests and quizzes and would receive a letter grade or a comment ranging from poor to excellent. He described his teachers as “generally very good”. There was a “mixture” of teachers who were genuinely interested in their students and those who were not. He experienced a wide range of teachers in his schooling. He also commented that “Today, in this country many of them would not have been able to keep their jobs for as long as they did then because of their [lack of] devotion to their students.” His favorite teachers were ones who “pushed him to look at learning in different ways”. He spoke of one teacher in particular who motivated his interest in history by having him learn about recent history in New Zealand. After the project with that teacher, history became one of his favorite subjects.  A proud moment for Brian in his schooling was winning the “class prize”.

Brian was a well-rounded student. He began piano and violin at a very young age. His music activities in school included choir and playing in the orchestra. He also played on the rugby and cricket teams. One of his biggest accomplishments in high school was making the “first eleven” (similar to varsity) cricket team. Brian later went on to coach women’s rugby at the college level as part of his teaching in the United States.

Brian’s formal education included a PhD in choral conducting from Indiana University. He did his undergraduate work in at the University of Auckland.  The most important lesson he learned outside the classroom is the importance of positive interactions with other people in any situation. He attributes this lesson to his experience in conducting.  Brian thinks that the role of education is to assist individuals in becoming better and more productive citizens.

Brian’s dream of a career in music started at a very young age. He knew he wanted to be a conductor at 6 years old. By the time he was 15, he also wanted to be a high school music teacher. He studied the violin and piano then eventually took on the organ.  After completing his undergraduate work at The University of Auckland, and his PhD at Indiana University, Brian was given the opportunity to take a job in Vermont, teaching at Norwich University. The man stepping down from the position also conducted the Vermont Philharmonic Orchestra as well as being Organist and Choir Master in an Episcopal church in Montpelier. After he figured out that Vermont was indeed a state, and not a city, Brian gladly accepted all three positions. He also conducted a local community chorus, where he would meet his future wife Nancy.

After years of being a professor of music, Brian’s institution cut the Philosophy, Religion and Fine Arts Departments and laid off a number of faculty members connected with these programs. At this point, Brian had to decide whether he wanted to continue his career in music education by seeking another music faculty position elsewhere, or if he was going to join with fellow employees and seek legal action to remain with the same institution. Though a career in music education is what Brian had worked for, and music was his true passion, he now had a young family to support and a good environment for his children to continue in school. Brian ultimately decided to continue with his fellow faculty, and the university was forced to offer them new positions. Brian’s position was in administration in the Bachelor of Arts program.

Brian was most recently Associate Dean of MA/BA at Union Institute and University, in addition to organist and choir master at Christ Episcopal Church in Montpelier, Vermont. Doing the best that he can for students, and the University, was the most important aspect of his job.  Being a musician has taught him a lot about adult responsibilities.   He stated, “You have no choice but to conduct activities, no matter what the circumstances”.  Schooling gave him the basis for his work in music, and conducting activities gave him an excellent basis for his administration work in higher education.

This was an interview piece I did with my dad a couple of years ago. Since he passed away this fall, I have been reflecting on his values in education as I finish up my own college career and look forward to teaching in the near future. I am heartbroken that dad will not be her to see me accomplish my goals, but I am grateful for this piece of writing, and refer to it often. I thought it would be nice to include some of dad here.

My Craniofacial Reconstruction Journey

 

Sitting in a large conference room, we are surrounded by what feels like two dozen men and women in crisp, white coats that stand out against the dark paneling on the walls. It is standing room only as more and more of them pile in. There are three chairs in the center of one wall for Mom, Dad and me. Everyone else is crowded around us. They all want a view of the unusual specimen. They all want a view of me. Dr Mulikin is right in front of me, a bit too close for comfort. He has me remove my sneakers and socks and is examining my feet. I don’t really understand why. Isn’t it my face that needs to be fixed? It tickles as he examines each of my toes. He asks me to count them in Korean. He loves that I can count in Korean and has me do it every time. I’m just happy that I only have ten toes, because I don’t know how to count any higher.

  As he continues to examine me, he turns to the people behind him explaining and pointing out things in some kind of medical jargon. The only words I can make out are “see this?” and “see how her face is blah blah blah.” I just want to get out of there. I look over to Mom. Her eyes are half closed, but she is trying to look like she knows what they are talking about. It has been a long day of appointments and tests. I can’t imagine that entertaining an eight-year-old, who has spent the day being poked and prodded, is any walk in the park either. To my left,  Dad is wide-eyed on the edge of his seat. I’m not sure if it is his daughter being studied as some kind of rare animal, or Doctor Padwa’s short, tight skirt under her impressive looking lab coat that is pleasing him more.

****

 As years pass, my parents and I continue to make our annual pilgrimage to Boston Children’s Hospital. Once we stepped out of the parking garage and proceeded towards the hospital entrance, we were greeted with the same not-so-gentle city smells that force their way into our nostrils. Heavy exhaust, stale cigarette smoke and the scent of the rushing storm drain. It always seemed to be raining. We pushed our way through the revolving glass door and made our way to registration.

Here we received the itinerary for the day: the orthodontist, the radiologist, the audiologist, and the neurologist. I am sure that there were plenty of other “ists” that we visited over the years, but there were too many to remember. At the end of the list, Doctor Padwa and Doctor Mulikin were always present, followed by the dreaded “Craniofacial Clinic,” when everyone from the course of the day would come together to “ooh” and “ah” over my disfiguration, one that only one in every 15,000 children are lucky enough to deal with.

****

I was born with Pfieffer Syndrome, a rare genetic disorder that keeps the bones from growing properly. The sutures in my skull that wouldn’t normally be sealed until I reached my early twenties, closed long before my tenth birthday, causing my face to develop abnormally. My lower jaw now sits far beyond my top teeth, making it impossible to eat anything harder than pasta or steamed vegetables. Steak and apples are out of the question. I did not know it yet, but there was a series of monumental procedures in my future that would reconstruct my face and allow it to function “normally.” Doctors were going to peel off my face like a banana peel, cut apart the bones, and mount a titanium “halo” to my face for a couple months while the bones grew back together.

 After years of planning, years of measuring, poking, pulling teeth and drawing blood, the day has finally arrived. I was now 13. Today I would get a new face.  I remember waking up in the hotel room that morning on August 1st, 2002. It was just before 5:30am. When  Mom woke me up, Dad was already packing a bag. M*A*S*H was playing in the background. It was going to be a long day for my parents. My surgery was scheduled to last about 12 hours.

 Doctors Mulikin and Padwa found me in Pre Op. Gone were their pristine white coats. Doctor Padwa’s finely sculpted hair was now covered with a surgeon’s cap. They stood by the side of the bed and asked my parents if they had any questions. “I have a question,” I chimed in. “Are you sure we have to do this?” My parents’ eyes quickly darted in my direction. The doctors just smiled. Dr. Padwa picked up my black belt from the side of my bed. I had brought it as one of my “comfort objects.” “Wow!” she exclaimed. “If you can earn your black belt, you can get through this.”.She stopped to think for a moment. “Can I wear it?” she asked. “What?” “Can I wear it in the OR?” she repeated. She had me show her how to tie it around her tiny waist. Everything got kind of foggy after that. They forced this orange liquid that tasted like lighter fluid down my throat. It burned on the way down.

****

 

 When I close my eyes I see the spots from the lights that were just blasting into my pupils. There are no clear images, just foggy swirls as the anxiety is just about at the breaking point. Every few seconds I get flashes of the anesthesia mask. I proceed to punch at it with martial arts fists, only to miss and swat at the air. They are standing over me now. I keep fighting. It is hopeless as my strength is dropping faster and faster. I lose control completely and lie there. I’ve been defeated. My body is limp and all the tension is released like air from a balloon. I hear something. Ten, nine, eight the voice never did get to whatever number comes next.

****

 

I wake up feeling like my body is covered with a pile of bricks. I can open my eyes only enough to see that damn blinding light. I have no sensation in my extremities, and I am unable to talk or breathe. There is a man’s voice to my left, and a woman’s voice to my right. They have no idea that I have woken up as they are trying to replace my breathing tube, and I am unaware that my nightmare has just begun.

  Within a matter of moments, my eyes must have closed again. I woke up for a second time. This time, my eyes do not open at all. I panic. I have no idea where I am or why my eyes won’t open. All I can hear are some beeping sounds, and “Full House” playing somewhere nearby. I try to scream for my mom, but my voice is not working very well, and I can only make a small squeak that sounds like one of my brother’s hamsters. I sense that there is someone in the room. I let out another squeak. “You are in the hospital,” someone is whispering to me. “Your parents have gone out for the evening.” There is someone else in the room now as I thrash my torso around on the bed. The man spoke. “Just relax.” It was then I learned that my eyes had been sutured shut.

****

 

Four days had passed in darkness. I was beginning to identify the nurses by their voices, and the time of day by whatever was playing on the television on the other side of the room. I had started to feel the weight of this foreign mass that had just been drilled into my skull as it curved out around my forehead and down in front of my nose like some sort of robot getup you would see on bad sci-fi movie.

 I had made some strides though. I was now able to sit up in a big chair that was only a few inches from the bed, the one that folded into a cot and had become my mom’s sleeping, sitting, reading, comforting and keeping-it-all-together place. It was about lunch time. Time for more meds, and another attempt at drinking that fortified milkshake mixture through a long plastic syringe which I could barely fit between the teeth in my swollen mouth..

 As I brought the syringe to my lips, I felt a funny sensation in my left eye. It was as though a block of ice was slowly cracking and breaking away from a glacier. Gradually, my eyelid released itself and light came flooding in. Immediately after I adjusted to the light, I saw my mom standing over me. In that moment, I felt like I regressed in age about ten years. “Mommy!” I squealed, “I can see you!” As though she did not believe me, she leaned in closer to examine my eye. I saw the giraffes prancing across the wallpaper border. I saw the day nurse who looked nothing like what I had been picturing. She had long hair that was died a very unnatural red, and twice as many wrinkles than I had pictured. Finally, my eye settled on the large metal frame for the first time. After studying my face for a moment, a familiar grin stretched across mom’s clearly exhausted face. She sent a nurse to find my dad who was out in the hall giving the daily update to whoever was on the other end of the phone line.

Out half-an-inch from the tip of my nose, I saw it. There was now a vertical titanium rod right down the center of my field of vision. At the base of the rod, long wires and metal pieces extended into my mouth and were screwed up into my gums. My face and eyes were so puffy that I had to look up and over the apples of my cheeks to see that there was anything in front of me.

There was a drainage tube protruding from the side of my head that emptied into a small plastic reservoir. The rest of my body was entangled in so many tubes and wires that I could not so much as lift a finger without running the risk of setting off one of those ear piercing beeping machines which would send doctors running through the doorway as if they were participating in Boston Children’s Hospital edition of Running with the Bulls.

The days in the hospital seemed to all blend together. It was like I had suddenly returned to my first year of life, and every little accomplishment was celebrated. The first time I was able to sit up for more than a few minutes at a time, the day that I was able to stand. Then there was the day that I was able to walk, all the while balancing my new heavy metal exoskeleton that seemed like it weighed about ten pounds.

The first time I saw myself in the mirror is a moment that will be forever tattooed in the recesses of my brain. I was finally strong enough to get up and use the restroom. Mom followed close behind me as I pushed my I.V. pole through the wide wheelchair-sized doorway. As I finished, and made my way toward the sink, she stepped in front of me, purposely blocking the mirror. “I want to see.” “Are you sure?” she asked in a final attempt to protect me. “Yes, I’m ready.” I could tell by mom’s reluctance to move that I needed to brace myself. She slowly stepped aside, stood behind me, and placed her hands gingerly on my shoulders. There I was in all my swollen glory. I gasped. The flesh of my face was as purple as the frame that was now mounted to it. I could feel my knees lose their rigidity. The face in the mirror had absolutely no resemblance to the one that I had always known. Seconds seemed like an eternity, but something kept me from turning away. I moved my arms and watched the mirror, just to make sure that it was really me staring me in the face.      

As the numbness and shock began to fade, anger and fear began rushing through my body. Suddenly the innocence and dependence that I had felt being coddled and waited on hand and foot turned to a ball of overwhelming fear and rage which settled in the pit of my stomach. I had been happy with my face before. I did not know any different. Why were these people trying to change me?

****

 

 By the time I finally returned to Vermont and passed through the kitchen door, the swirling emotions of rage, loss and defeat had taken over. I took a bottle of hand soap from the bathroom sink, and using my finger as a writing implement, I wrote “Helen is Ugly!” across every mirror and glass surface I passed. The orange-scented ooze dripped down the surface, stretching my traced letters, and making the words appear all the more terrifying.

 It was only a short time before I exhausted myself and was not able to continue my rampage. I slumped down on the couch in the living room. To the right of the couch, my cello stood in the corner. It was glistening under a sconce and appeared to be the brightest object in the room as the sun was setting on this incredibly emotional and stressful day, the day of my homecoming. Something about the cello drew me in. If only for a moment, I forgot about the anger and hatred that I had now been feeling for days in between the cranking sessions, when my mom used a small arsenal of tools to crank the screws, slowly pulling apart the bones in my head.

 With whatever energy I had left, I slowly pushed myself off the couch into some sort of hunched over standing position and made the few steps toward the cello. The chair and the music stand were right where I had left them two weeks ago. I grabbed a hold of the cello, pulled out the end pin and slowly dragged my bow across the strings. Did I still remember how to use this thing? A book of my favorite Celtic tunes was open in front of me and I began to play.

 It was like nothing had happened. It was just me and my instrument. My fingers floated up and down the cello as if I had not missed a day of practice. For a moment I felt no pain, no anger. I was free and I was myself again. I played Celtic tunes until my fingers turned cold and it was time to eat whatever Mom had liquefied for me in the blender by way of syringe.

Meeting Olivia

I was born with Pfeiffer Syndrome, a rare condition which affects only 1 in every hundred thousand births. I had 13 surgeries in my first 14 years of life, the biggest one being the reconstruction of my face when I was in 8th grade. I had lived my entire life not ever meeting anyone else who shared the same condition. Someone else who had their bones cut apart and screwed back together. Someone else who sat on the side of the bed while their mother cranked the bones of their skull apart, trying to offer comforting words through her own tears of pain and fear. I had found a community on Facebook a number of years ago and chatted with people occasionally, but nothing had really come of it.

Sometimes, even on an ordinary day, moments happen that change your perspective. It was a typical Friday night: four of us sprawled out on the couch with sodas and pizza watching TV. We all seemed to be reaching the food coma state of the evening where everyone is staring blankly at their electronic device of choice while the large screen of the television glows and murmurs in the background. It was the end of the semester and no one had much energy or brainpower left.

Scrolling through my Facebook feed was nothing new. I could do it in my sleep; in fact I may have been, given the state of things at that particular moment. The screen scrolls up; I’m not really reading, just skimming, as if on some sort of college student half-asleep Friday night autopilot. Then something finally catches my attention: the Sanborns are on their way to Maine! I make a quick comment out of curiosity which would end up changing my life forever. The Sanborns were one of the first people I connected with who understood. They have two young daughters. Olivia is in the 5^th grade. She loves animals, ballroom dancing and softball. And she has Pfeiffer Syndrome.

 Where in Maine? I ask. Within a few minutes I have a response. Wells. What I wanted to say was “Wow, come visit; I would love to meet you!”, but I did not want to sound crazy. They probably had plans anyway. I set my excitement aside, and simply hit the like button. Another comment appeared: “Where are you again?”…“Old Orchard Beach”. Long pause.

Ah! She finally replies, “Is that like an hour away?”…“About 30 minutes” I reply. At this point I was picturing Laurel at the other end, considering a meet-up to be a possibility, but still I did not want to get too excited. Then finally after what seemed like forever, the moment I had been waiting for appears on the screen: “We are eating at Mike’s Clam Shack tomorrow night if you want to join us.” “Yes” I reply, without as much as a thought. We work out some of the details. It was then that she expresses great enthusiasm, and I know that the overwhelming excitement was mutual.

I close out of Facebook and look around the room again. No one had moved. It felt like a lifetime since I had surveyed the half-eaten pizza and the friends mesmerized by their phones and their tablets, and the hum of the large screen TV that no one seemed to be interested in. Nothing had changed. But to me, the room seems brighter, more vibrant, less “exhausted college student” and more “adult who had amazing opportunity in life”. It is incredible how quickly things can turn around simply by changing perspective.

That morning, I saw each of the Sanborns’ activities as their posts appeared on my news feed. They took several pictures at each stop as the time of our meet-up drew closer. As my excitement continued to build, so did my nerves. How was I going to act? What questions did I want to ask? Did I want to ask questions? What if I do something stupid? I was driving myself crazy. What if they don’t like me? What if they have trouble with my weight, or the fact that I’m gay? Would I bring Amy with me? She is my wife after all! How could I hide something, or someone, which defines so much of who I am? It was strange how these thoughts seemed to overwhelm the main connection, the main reason for the meeting in the first place. I share something with them that for my entire life has made me feel alone in this world. We already shared a common bond that made all the other stuff, all the other shit that everyone worries about when meeting people and fitting in, seem trivial.

Finally the moment had arrived. I took in one last deep breath and straightened my hair in the visor mirror as Amy and I pulled into the dusty parking lot. She looked at me and smiled. “This is going to be good” she said, picking up my hand and squeezing it tight. I could see that she too was nervous. She knew what this meant for me. She walked behind me up the long stone pathway. Olivia and her sister Amelia were watching for us through the window. Before I was close enough to open the door, they grinned at us through the fingerprint-covered glass. I grinned back, and my fear melted away.

Once inside, the sisters greeted us each with big hugs. It was as if I had known these girls forever. They lead us to the table where their parents were waiting. More hugs. The vibe was less like an awkward first meeting and more like a family reunion. As we all squeezed into the booth, all I could do was smile.

Our next meeting would be in Vermont, when I had to go home after suddenly losing my father. I found solace in another meal with them. I kept forgetting we had only met once before. We laughed together and talked. Olivia had the amazing ability to make me laugh and forget for a moment the real reason we had traveled the 211 miles on a weekday. They told me that they wanted to attend the service. I was overwhelmed by their desire to support me in a way that was so personal and profound. They never had the opportunity to know him, and yet our connection was so strong that they made the service a priority.

The next morning my family and I pulled up in front of the church. We were greeted by the priest and the funeral director. I saw my brother, his girlfriend on his arm, talking to people as they entered the chapel. Amy was already playing the organ and the music carried out through the wide open doors down State Street. After instructions from the funeral director, I took my mother’s hand. We lined up as if in procession; behind us the rest of the family followed suit, and we started up the steps and down the aisle.

It was overwhelming. I blocked out the sound of the music and the colors of the glass which bounced off the walls. I blocked out the 400 faces that were all turned in our direction. The aisle seemed to go on forever, and at the end of it was my father in a small granite box, and his choirmaster robe draped over the altar like some reference to Jesus or something. It was all too much! As we made the long walk toward the front of the church, I saw someone out of the corner of my eye. It was Olivia smiling at me! I couldn’t help but smile back at her. I wasn’t so scared anymore after that.

Sometimes, even on an ordinary day, moments happen that change your perspective.  The day I met Olivia and her family at Mike’s Clam Shack on an ordinary Saturday, I went from being the only person I knew with Pfeiffer to a part of something greater. Never before had I been able to explain the condition in “we’s”; I always used a very isolating “I”. It was an instant bond between two people, two families, which has changed my perspective forever.

What's behind "The Closet Doors"?

For many of us, our closets hold so much of what represents our lives. Not only is the closet referred to as a well-known metaphor for someone who has “come out” in the LGBT community; closets hold our clothes for work and play, our décor we pull out for special occasions, souvenirs from years past, and often, our dirty laundry. My small apartment on the coast of Maine has only one, quite small closet that I share with my wife. This hole in the wall is jam packed with our personal belongings and often overflowing. Holiday decorations, clothes from our wedding, childhood mementoes and cat carriers, not to mention our everyday clothing overwhelm the tiny space behind the two mirrored sliding doors. Mirrored! Not only is this closet a metaphorical reflection of who we are, but every morning, is a literal reflection of our lives whether we like what we see or not.

Looking through these items in my closet, one could easily see that I am a gay, overweight butch who has lived her life with craniofacial differences. I am an advocate for both the LGBT and individuals with disabilities communities. I am a 26 year old living on the coast of Maine who just lost her father and is proud of both her Vermont and New Zealand heritage. I am a student teacher. I am an Episcopalian. And I also have a lot of dirty laundry! If someone took the time to dig through everything in my closet, they would find these different pieces that make up who I am.