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my story

a little thing I wrote about being homeless with a serious medical condition

By Matt Barrett

August 21, 1993 - third draft

I am looking out of tinted windows as the fog drifts back to the ocean. It moves the way I got out of bed this morning slow and lazy. Even after a half hour by train to get here, I still feel a little sleepy.

A hand on my shoulder brings me back to reality, where I am and why. The nurse looks at me with a smile on her face, "Matthew, it's time to go. We are ready for you now." She stands there in those awful green scrubs and hairnet, waiting for me to follow her.

I start to get out of the chair as she leads me to the operating suite they call it a suite. I call it the cutting room. I've been in this room before.

The door is open and I can see the table and the little cart with the green drape over it. Scalpels, syringes, bandages, and bottles lie underneath though I can't see them now. I know because I've been here before for surgery.

Louise, that's the nurse's name, stands next to the table waiting for me to lie down. "The doctor will be in shortly, but he wanted me to get some more pictures and prep you first," she says in a friendly but firm tone.

"Is he making a photo album of me?" as I start to lie down on the table while she gets the camera and pens. "Doesn't he have enough already?" I quip sarcastically.

"Now let's see which ones are we doing today? There are so many I forget which area we are working on." Louise comments as she flips through my massive chart sitting on the counter. She starts to draw dots around the areas as she remarks, "Oh, yes, the eyebrow and the temple, nasty one that one is." her British accent becoming more evident.

"Are you comfortable now?" as she focuses the camera on my temple.

"About as comfortable as I can be," just as I get blinded by the flash.

Dr. Geiss walks into the room followed by a young lady I've seen before but never met. "This is Dr. Lisa and she will be assisting me toddy." as he looks at the pictures Louise just took.

"Hello, Matthew. It's a pleasure to finally meet you."

"The feeling is mutual, Doctor"

"Doctor Geiss has told me a little bit about your case, but I still have a few questions if you don't mind."
"Fire away, I'll try to answer as best I can."
"He knows this condition better than I do, Lisa. Don't let him fool you." Dr. Geiss interjects.
"Oh I see, Well' versed is he? Well then Matthew, have many family members had Basal Cell Nevus Syndrome besides you?"
"My grandmother, father, and older brother have; no, I do not have any nor do I plan to," I say quickly.
I see Doctor Geiss remove the drape from the cart and reach for a syringe of Lidocaine. He hands it to Lisa and reaches for another one. "Well, it's time to get started on you, just lay back and relax, he says as he places a drape across my chest and the left side of my face.

"You know the routine, a little stick and then a burning sensation," John (that's Dr. Geiss) comments as he prepares the syringe.

The needle pierces the skin and the Lidocaine burns as it enters into my temple area. John works quickly to numb the area while Lisa does the same thing to my eyebrow. Tears start to well in my eyes from the pain but they never flow. Louise notices me tense up in my arms and legs. "Breathe relax, Matthew," as she holds my arm.

"Let us know if you feel anything and we will give you more numbing medicine," Dr. Geiss says in a firm but gentle tone.

Still feeling the burning sensation, I grunt, "OK, Doc" as I squeeze my waistband a little tighter.

John put the syringe back onto the cart and picks up a scalpel. "I think that should do it. Let me know if you can feel this, Matt."

The stainless steel razor sharp edge cuts the skin easily as John applies more pressure. Starting to make the necessary cuts to excise the lesion in my temple. Lisa begins to do the same on my eyebrow and now the real work begins. This is the start of a long day, I can tell.

John is being very careful about how much and how deep he cuts. My temple area is going to be the most difficult to excise because of the size and area in which the lesion sits. I still remember our discussion about this problem a few weeks back.

John came into the room with my chart and said, "We have a problem, Matt. We need to talk about it."

"What's wrong this time?"

"That lesion in your temple could cause serious problems. It's possibly going to or we may have to damage your facial nerve when we remove it."

By the look on my face he could tell that I didn't understand what he meant.

He continued, "If your facial nerve is cut or damaged it will make the muscles in that area of your face sag and relax. This is, of course, a worst-case scenario. If it does happen I will try to reconstruct: and lift
the area so that it won't look so bad."

At first I wanted to cancel the surgery, but on second thought I decided that the situation would only get worse, riot better. "Let's do it anyway. I trust you."

I was brought back out of the recollection when Lisa hit a soft spot. "Ouch! That hurt," I grunted.

"I'm sorry, Matt. I'll numb it up some more," she said.

They both finished cutting out the samples and cauterize the bleeding areas shortly after this and told Louise to bandage me up.
"We'll see you in about an hour, Matt," John said as he walked out of the room with Lisa.

Louise bandaged up the areas, which made me feel like a mummy with all, that gauze wrapped around my head.

I got slowly up from the table and Louise led me back to the waiting room.

"I'll come and get you when we're ready. Just try and relax, okay?" Louise said as she helped me to a chair.

I begin to think as I sit there and wait for her to return. This Mohs surgery has its three stages, the first of which we just completed with the excisions. The second is being done now in the lab, as a pathologist makes slides out of the specimens for the microscope. The doctors then check at the slides and mark on a diagram if the edges still show cancerous material. This is the third step. If they find bad edges, then we have to start the process over until the areas are clear.

This can take hours to complete, which make this surgery an all day affair.

I've been through this enough that you would think that I would be used to it by now. The truth is that no one can ever get used to being cut up and put back together like I have for the last 26 years. I like to think that I am used to it, but I'm not arid I probably never will. Surgery is never easy, especially when you are watching your own face getting cut apart a piece at a time and then being pieced back together as best as the doctors can.

Louise is back and it is time to go in to see the doctors. She holds my arm as she guides me back to the operating suite.

"Has the Lidocaine worn off yet?" her British accent clear as a bell.

"Not yet, though I think it's starting to in the eyebrow," I reply.

"Well, I think we have more work to do on the temple, but the eyebrow only needs a few places," she says as I lay down.

John and Lisa come in with papers in hand. I know this means we start the process all over again, like we have so many times before and will again.

"The temple is worse than we thought," John states almost apologetically.

"But the eyebrow is almost clear," Lisa adds to soften the blow.

John numbs up my temple again as Lisa does the same to small areas in the eyebrow. It gets confusing having two people working on my face at one time. I'm trying to relax and breathe while they work on me, but I also have to pay attention, in case they hit something that I can feel getting cut.

Twice John hits areas that are not numb and I grunt and tell him. Lisa is just cauterizing a few last bleeders when John says, "The nerve has been damaged and it's going to cause problems." This statement hits me like a ton of bricks. I knew it could happen but had been praying that it wouldn't occur. I now realize some of the fears I had earlier in the week
"We'll see you in about an hour, Matt," John said as he walked out of the room with Lisa.

Louise bandaged up the areas, which made me feel like a mummy with all, that gauze wrapped around my head.

I got slowly up from the table and Louise led me back to the waiting room.

"I'll come and get you when we're ready. Just try and relax, okay?" Louise said as she helped me to a chair.

Louise reminds me that it will be about an hour and suggests that I go get some lunch. Tears are running down my face as I say, "OK, I'll do that."

The elevator ride seems forever as my mind goes back forty-eight hours in time. I am sitting on my bed in the shelter thinking about what is to come and its effect on others and myself. I wonder how badly will I be scarred up this time around or will I be disfigured even more than I am? How will the other clients here at the shelter react when I arrive bandaged up after the surgery? Suddenly the elevator doors open a little boy is staring up at me and whispers, "Mommy, what happened to him?" "He had an accident" is her quick reply as they get on with me. The little boy keeps looking at me and it reminds me of when I was about his age. My mother walking me into the doctor's office and telling me that it was going to be all right. The doctor walking in and checking me over, then reaching for the thermos. I didn't know what was in it then, but now I know that it was liquid nitrogen. The coldest substance known to man was placed on my tender young skin to try and freeze and kill the growths back then. Yes, it hurt and yes, I cried, and it never got any better or less painful from then on, including today.

The elevator doors opened again and the two of them left. I watched them until the doors closed and thought, "My God, that seems such a long time ago, when it was only a few years back."

Finally I get to the cafeteria and grab a quick bite to eat before heading back upstairs. I don't really remember what I ate that time. I guess my mind wasn't really on the food.

The ride back up was fairly quiet but still seemed to take forever. I wondered if other people were staring at me like the young boy had or was I just being paranoid. I arrived on the floor just as another patient was leaving to go home. "I hope everything goes well for you," she said. She reminded me of my grandmother older than me, but always concerned about me.

Louise was waiting for me as I came around the corner. "There you are. I was just about to have you paged," she said and stood at my side. John and Lisa walked in with determined looks on their faces. This told me we weren't done yet. I wondered how much more of this would it take. The time was one o'clock and I'd been here since seven—thirty this morning.

"The good news is that your eyebrow is clear," Lisa said. "The bad news is we have a lot more work to do on your temple," John said emphatically. Hated when he said that; it made me want to scream, "Why can't this ever be simple and uncomplicated?"

Lisa numbed up my eyebrow to start putting it back together. "I think an H-shaped incision will work," John said while he looked over my temple area and the diagram. Lisa agreed and started to make the necessary cuts and flaps to save as much of the hair and structure of the eyebrow as possible.

Lisa asked Louise to get some 5.0 vicro and 4.0 silk for the sutures for my eyebrow. Louise handed Lisa the packages and then returned to my side and help me relax and stay calm. Lisa opened the packet and started stitching the inside of the defect closed with the 5.0 vicro.
John had started to numb up and cut on my temple by now and was going pretty deep. I could tell. He kept asking me how I was doing arid to tell him if I felt anything. I assured him that I would and started to think back again to days before this all started.

Episcopal Sanctuary, my home for the last few weeks, is a homeless shelter in San Francisco, CA. Yes, surprise; I am a homeless person who has a serious illness. I can't begin to go into all of the problems that this has caused for me but here are a few.

Homelessness in itself is something that most people fear or don't like to think about. I have been homeless for 10 years now and it has taught me a lot about others and myself. I learned early on in becoming homeless~ that I had to survive in a situation I was unfamiliar with1 at best. I think that what helped me the most with this was my illness, as strange as that sounds.

Hereditary cancer is a life—long illness that has no cure or chance for remission. I learned this fact while I was very young and vowed that the cancer would never beat me. Survival and strength were the two biggest things I learned and gained from dealing with cancer in my childhood. Little did I know that these two traits I would rely on even more heavily as I matured into an adult? I learned to survive through all of the operations and procedures went through as a child. Strength came from surviving and by learning and understanding more about my illness. I also learned that people could be cruel and unkind when dealing with something that they don't understand.

A few examples of this would be like these situations from my youth.

I boarded the bus filled with people. A small group of teenagers sat in the middle of the bus as I started towards the back. I overheard one of the boys whisper to a friend, "How could they allow a freak like him on the bus." These few words tore at my heart and made me both angry and sad. I was angry because someone had judged me without getting to know me. I was sad because I wondered if that's how people really saw me as a freak.

The elevator doors opened and I started to leave when I was stopped by a child's scream and crying, "Mommy, a monster! Help!" The child screamed as she ducked behind her mother's legs. "You beast! How dare you scare my child like that! You insensitive brute!"
I quickly slipped past before she could swing her purse at me again. Frustration and agony overwhelmed me as I ran out of the hospital crying aloud.

I learned from these and other experiences like them over the years that followed. People may have problems with the way that I look but that is their problem, not mine. I didn't realize this for quite a while but once I did, I learned that I wasn't as gruesome or awful as I had thought.