HLHS

It is better to have loved and lost, then to have never loved at all.

Sixteen years ago today, my best friend went through the with decision to end her life. She had been struggling with accepting her declining health. The fear of losing the ability to walk, ride a bike and swim was overwhelming her. The depression that coincides with the disease was extinguishing the light inside of her that I had witnessed and enjoyed for decades. When she was gone, my world became dark. The beauty in the world that we used to enjoy was gone.

I met Christy Thomas in 1984 in Mrs. Humphrey’s room at Nathaniel Morton School. I was in the 7th grade and so far, the year was pretty traumatic for me. We had just moved from Lincoln Street to a neighborhood by the Jordan Hospital and I felt like no one had asked me if I was interested in moving because I would have shouted NO. I started that year lonely and feeling lost. In 6th grade, meeting all of these new kids from different schools around town overwhelmed me. In 7th grade I had to meet more, and that task was no less daunting. I had turned 11 that September and just got my period so I felt even more out of sorts. I didn’t have many friends and tried a little too hard to make them, which always backfired.

7th grade was the start of being separated into groups based on abilities. I was on the red team, which was college prep level. I was in classes with some very bright kids, but didn’t feel as though I belonged there which added to my growing anxiety. One September day, Mrs. Humphrey came into class with a mysterious jar wrapped in a brown paper bag. She had hit a raccoon and asked to have the brain removed so we could see what it looked like. She triumphantly opened the bag and in a dramatic fashion, held it up for all of us to see. The Madonna clones at the table next to be made retching noises while the other girl who sat at my table began to laugh. The clones complained how disgusting it was to have animal parts on her desk.  Mrs. Humphrey looked at them and said “Well, this isn’t that bad” and held up what appeared to be a spine from her top desk drawer. The clones made more noise and we just giggled harder.

“Hi, my name is Elissa” I held my hand out to the girl. “I’m Christy.” she replied, smiling back at me. Christy had dark, short hair like I did (which instantly branded us as lesbians because everyone had long hair in the 80s), and similar skin and eye coloring. Immediately I knew we were going to be great friends and was happy. Later in the class we had to be partners on an assignment that involved cutting out a picture of a car and pasting it onto a stick. Christy took it one step further, cut open the window and stuck a picture of Gumby in it. “Gumby rules!” she pushed the car into my field of vision each time I tried to finish the assignment. Useless. We laughed almost every day after that.

Meeting Christy was the highlight of my 7th grade year because she gave me a reason to look forward to going to school. I wasn’t alone anymore, and I made a vow to her and to myself, that I would never let her feel alone as long as we were friends. I was so grateful for our friendship, and each day brought more laughs then the next. She thought I was a talented writer, and supported me so you can imagine how devastated I was when it ended the following year after the car accident.

One hot summer day in August, we were supposed to be shopping for a dress for my Bat Mitzvah and instead, my mom stopped at Paperama in Weymouth for some reason. After having ice cream and purchasing some beautiful hanging plants, we began our trip home. At the intersection of 53 and 18, we were hit on the drivers side by a 16 year old girl who ran the stop sign. I was knocked unconscious immediately and woke up to see a woman put her hands through the window in an attempt to comfort me. I heard my mom crying and looked for her. Her head was at an awful angle on her shoulders. My grandmother was also in the front seat and I heard her say “Jackie…”  I turned to my right and saw Christy standing in the middle of the road with a shocked expression on her face. “Elissa!” she yelled, “Are you okay?” I don’t remember saying anything because I was so disoriented. What the hell happened? Didn’t we just have ice cream minutes before? Why was my mom’s head off her shoulders? And how did that lady get her hands through a glass window that I knew was shut.

My mom’s neck had been broken that day. My grandmother suffered broken ribs, and I had a concussion. Christy had fallen on top of me and took all of the glass. She had stitches. Her mom came and got her at the emergency room. I watched as the medical staff prepared my mom to be flown to Boston. It was not the way a beautiful Saturday afternoon should end.

Our friendship changed after that. Christy was very traumatized and her reaction was to pull away from me. Problem is, when people pull away from me, I tend to try to hold on harder. I barely saw her until my high school graduation day. The summer between my freshman and sophomore year at college I went back to work at Friendly’s. Christy had just started there and we picked up where we left off. It was awesome. We had an incredible summer and many adventures. She taught me about different artistic styles, told me obscure facts about the earth that I never would have guessed, and showed me places in Manomet I never knew existed. I learned so much and when I went back to school, I invited her to come up numerous times.

Christy never made it to Castleton. For one, her car looked like it had bullet holes and probably wouldn’t have made the trip. Secondly, she had already made her way to the Florida Keys and found herself in some trouble. When she told me the story, I had a hard time listening because she sounded like nothing made sense. It was probably her illness but it was hard to listen to. She stopped talking to me and I went on with my life. I became sober that following spring, and ran into her again in Plymouth. She was concerned that I was following a cult of AA people, but reminded me that I needed to stay there because she couldn’t handle me drinking again.

I saw her again New Years Eve 1995. She read my tarot cards and told me that in the 10th month I would have the whole world in my hands. She said that it would be the hardest thing I would ever do, but so worth it. That October, I gave birth to my first daughter, Elizabeth. I didn’t hear from Christy again until the following summer. She heard Elizabeth making noise and was so happy I had a baby. I told her she predicted me having the whole world, and I did.

When Elizabeth was about to turn three, Christy called me in the middle of the night in tears. I was living on Lincoln street with Elizabeth at the time. She didn’t have anywhere to go and needed to stay somewhere. I told her I would be there in 5 minutes. I packed up my toddler, put her in the car seat, and flew to Manomet where I found Christy at the post office. She lived with me for about 6 months until a few weeks before her death in March.

Christy and I had our good times, and we also had some bad ones. She became very depressed and her disease was getting worse. She had told me about her illness when I saw her again in 1999. She told me she had what her father suffered from. My heart sank, because I had met him once and he couldn’t speak, sit up, or feed himself. She used to watch a documentary 20/20 had made about her family, and there was a scene where the doctor told her parents that she wouldn’t have the disease. She watched this over and over again, with tears coming down her face but not wanting to talk about it.

Before I asked her to move out I called her mom to ask if Christy could stay there, because I wanted to make sure she had a place she could go. Her mom was surprised by my question and said that of course she could stay with her. I gave Christy the news that she had to move out. It was ugly. A few days later she called me at work, begging me to let her come back. I firmly said no and was really angry with her. Later, I received a phone call from her sister Wendy asking me if I had heard from Christy. She was supposed to have gone to her moms but was no where to be found.  The next day I found a note on my coffee table from Christy. Her boots left mud all over the house and I was upset that she had come into the house while I wasn’t home. What I didn’t want to see was that she was saying goodbye to us, to our space. I threw the note away in anger.

On March 29th my friend Kelly called me at work late in the afternoon. She asked me what Christy’s last name was.
“Please tell me it isn’t Thomas.”
“It is, why? Kelly…why are you asking me? What is happening??”
The silence on the phone caused a pain to grow in my chest. It was becoming difficult to breathe. My co-workers around me looked up in alarm as my voice gave away my growing sense of panic. My eyes were wide and I looked at my manager, not knowing what was about to happen.“I don’t want to tell you this right now.” Kelly answered, the pain in her voice was adding to the pain in my chest.

“Kelly, please…” “Elissa, they found Christy Thomas in the water. They are pulling her body out because she jumped off of a bridge in Rhode Island. She is gone.”

“She’s gone? Christy is gone?” Was that me saying those words? I closed my eyes and immediately the tears came.

My manager’s hand flew to her mouth, her expression was complete disbelief. I was walked to a conference room where I called the family. I cried. I sank to my knees as I tried to channel some kind of Higher Power to help me. I called Kelly back. She offered to pick me up and take me to a meeting because I didn’t think I could drive. My supervisor walked me to South Station, and babbled about every person he knew that had died, not knowing what to say to me. I stood in the space between train cars, staring at the afternoon sunlight on the way back to Kingston. I couldn’t believe that I would never speak to Christy again. I would never be able to say that I was sorry.

I spoke to her sister and found out that Christy had been alone, living out of her car at the McDonald’s in Bourne. She called her mom after a day or two, and her stepfather went to pick her up. Her mom brought her to the ER because she told her she was going to kill herself. After spending the entire day in the ER, they discharged her. The next day, she asked her mom if she could borrow the car to go to the store. She seemed to be feeling better and assured her mother that she was all right. Christy drove off and was never seen alive by her family again.

She drove back and forth to make sure she found the highest point of the bridge. She parked the car, and walked over to the railing. A gentleman who was in the car behind her realized what she was about to do and quickly got out to help her. He reached her as she climbed over the railing. He asked her what she was doing. She looked at him, and responded point blank “I am jumping.” He reached over and tried to grab her. His fingers reached her pants, her green pants that she wore so many times. The pants that ultimately ripped as she leaned forward, straining to make that final dive.

I found this out when I went to the family’s house later. I learned that she had been alone and afraid. I thought back to that day in 7th grade when I made my promise to her out of my gratitude for her friendship. I remembered the note she had left for me and the mud on the table and floor. I instantly regretted throwing it away and frantically went through the trash trying to find her last words to me. The sobs that emanated from my chest as I ran around the house were so raw and endless. She was gone. It was too late to tell this amazing human being how grateful I was to have had her in my life. The last conversation we had was filled with anger and I couldn’t fix it.

As painful as this experience was for me, the silver lining is realizing that I may have lost my closest friend, but I had so many who were willing to lift me up when I couldn’t stand. Unfortunately, I relapsed shortly after her death and got sober again 3 months later. What was once precarious sobriety became solid, and I took my life much more seriously than ever before. I realized how important it is for a person to hear that they are loved while they are on this earth. I took this knowledge to heart and when my grandparents passed in 2009, I was able to thank them the way I wanted to thank her. The way that she should have been thanked.

Christy Lyn, it’s been 16 years since you swam away. I have complete faith that you did what you had to do, and as painful as it is not to have you here, it would have been more painful to watch your beautiful light slowly die out. I consider myself lucky to have been one of the select few you chose to spend your precious life with. Thank you for deciding to be my friend. I hope you got as much out of our friendship as I did, and that your soul has returned to the beautiful light from where it came from. Blessed be.12313946_10208615346690111_8104520982718383734_n

HLHS

A not-so-friendly reminder with a side of reality

Last week was a great reminder about how life can change from one second to the next. Wednesday afternoon I received a phone call from my ex husband Chris, whispering to me that he had a severe headache and that his sister was coming to take him to the ER at Mass General. The headache turned out to be a migraine, probably aggravated by stress and brought by genetics. After getting some fluids and a prescription, I drove him back to Plymouth thinking about ways I could relieve his stress level. His father recently passed away and I knew that he was (and still is) struggling with the immense loss. How can I help? What can I do? I can take care of the kids and make sure George stays away from skunks. He felt a little better on Thursday but by dinner time the flashes were coming back. He called me again only this time I sent my parents over to be with him until I could get there and put the kids to bed. He needed rest and for the stress to be reduced dramatically in order to get better.

The complete opposite happened because a few days later I would receive another phone call, only this one was about Izzie. The school nurse was concerned about Izzie. She didn’t seem herself, complained to her teacher about being cold, and laid down a lot in the classroom. Nurse J usually does spot checks on her with her pocket pulse oximeter. The numbers came up with a heart rate of 52 and O2 level of 78. Both are completely out of character for Izzie. She warmed up her hands and tried again. This time the numbers were better but still not great. She wanted to know if she should call 911 for an ambulance.

I didn’t know what the right answer was. Should we get an ambulance? Or should we just lessen the drama and drive her to the hospital ourselves? I felt pressured to call the ambulance but went along with Chris who felt that we should see her before making that call. I call the pediatrician and was put on hold. After the three longest minutes passed I hung up and off we went to get her.

As soon as she saw us, she perked up and hopped over. She didn’t appear sick at all. Well, her coloring was a tad off and she seemed to be a bit tired looking but still presented well. We packed up the car and headed to Boston. I spoke with her cardiologist who wanted us to bring her in. She told me she would call ahead and suggested that we call an ambulance. We said she seemed stable enough to drive her. At Chris’s we had taken her O2 and it was more stable so she was ok with us driving. We got onto the expressway and as we moved closer to the city, I began to regret the decision not to call. Traffic. What if something happened while we were stuck? The stress on Ruggles was overwhelming.

 

Nest time, call an ambulance. Duly noted.

We were fortunate that nothing happened but you can’t always count on that statistic. There was traffic getting into the hospital. I jumped out, grabbed Izzie and ran to the ER. They were expecting us and called upstairs. We were brought into a room and Izzie seemed to be ok with being at the hospital. Until I asked her if I could help her into a tiger johnnie. Hell no. She cried and yelled at me the entire time but I changed her. After she stopped sniffling she began counting the tigers. We waited for someone to see us. Chris found the room and our latest BCH visit began.

I rehashed the story multiple times. Everyone who was in a one mile radius listened to her heart, checked her ears and asked her to stick her tongue out. It was agreed that IV fluids and observation were the way to go. The nurses came in to place the IV. Chris had stepped out to get something to drink for us. I held Izzie while the nurses prepared the kit. As soon as the alcohol swab hit her skin, Izzie knew what was up and began to writhe in my arms, screaming “NO! NO! Mommy NO!” In spite of my breathing deeply and my arms holding her, the tears began to fall from my eyes and she cried out to me to make them stop.

 

This is why I get a certain expression when you begin telling me how awful your child’s shots were. Capiche?

I held her strong and did my best to hold it together in spite of those tears that escaped. Chris came back as she had finally calmed down. He had wanted to be there for the IV placement because he knows how hard it is on me. It’s ok. It’s not my first IV and it won’t be my last. I shrugged and grabbed my drink. Izzie grabbed his drink. We went back to waiting another hour.

A group of doctors/nurses/attendings came in and the cardiology fellow told me that Izzie’s blood showed that she was dehydrated and fighting an infection. She said that the fluids should help and weren’t we fortunate to have teachers in Izzie’s life who noticed such a subtle change because the blood test was the only indicator of the diagnosis. The head cardiologist in the bunch expressed his thoughts on us staying for observation, just to be safe. Fine with us.

Chris and I sat there completely stunned by the whole event while Izzie watched videos on Disney Junior. We had a whole year of ‘normal’ living. Ok, so she pukes a little. She still was going to preschool, just finished ice skating and was acting like a normal three year old kid who had a virus. Except she’s not. She is a hypoplast, who depends on her blood being thin enough to pump efficiently to her body. Hydration is key to her health more than the average child’s. Throughout this whole week and the one earlier, we encouraged her to drink a variety of beverages and bribed with popsicles. It still wasn’t enough. She vomited every day from the cough she had due to being congested. Another chocolate milk? Sure! Just keep drinking, please? After all of the begging, pleading and bribing, we still ended up in the emergency room of the hospital. It hurt both of us, a painful reminder that she is always going to need a little extra care.

Earlier in the day my mother offered to take Addie so we could just go to the hospital. Addie had a great time being with her nana. She was very happy, but we were very worried since she knew Chris had been in the emergency room days earlier and now her sister was there. I messaged my family and told them we were being admitted. After the IV fluids were done, Izzie got her second and third wind, and decided now would be a great time to run in the emergency room. We stood in the orange tiles. Hopped to the blue ones, and then skipped to the green ones. We chased after her with her O2 probe being dragged behind her like a tail. It was a riot. As I watched her scamper down the hallway I realized that she was pretty sick and has been this whole time. Seeing her being herself showed us how much she hadn’t been herself and for how long.

We passed the time by taking turns getting food, getting toiletry supplies for the night and an obligatory BCH sweatshirt since…well…I just had to have a new one. The news came that a room would be ready within the hour. Two hours later we went upstairs to one of the new suites on 8 East. Chris and gave each other knuckles. A single! Score!

Izzie didn’t slow down once we reached 8 East and proceeded to laugh at the nurse when she tried to hold us in PRECAUTIONS. She consented to wearing a mask so she could find the baby that was crying somewhere. Once again we went in a circle and ran into the attending who had been looking for us. Chris was listening to the lecture on what living on 8 East is like. We both smiled. This must be a new nurse. After another round of the story of how we got there, it was time for vitals and bed. Chris went home after helping me set up the bed. So far it was the most relaxing BCH visit yet and for everyone’s sake I wanted it to stay that way.