Let me share the highlights of our story with you:
The version with more of my personal aspects can be found here– but these paragraphs are from chapters in the book we are writing “Living the Vow”:
We met in elementary school as kids and our parents were friends. I am one year older than Jared.
I moved and we lost contact.
We reconnected at around 15-16 and I had RSD but was rehabbing and continuing along the track of becoming a pre-professional dancer- with NO desire for a boyfriend. Jared’s dad had just gotten out of a horrible divorce, with Jared’s now ex-stepmother, who verbally abused him during their marriage. He was a promising high school athlete, but didn’t have many close friends. Now here’s what’s crazy, the moment I was reintroduced to him, God told me he (Jared) was going to be my future husband. I was totally freaked out and decided that there was no way that was true because I didn’t want a relationship- I wanted a career. End of story… or so I thought.
A few months into our newly rekindled friendship, I fell while dancing and knew that any shot of a career I had was gone. Jared was actually one of the people that loaded me into the car to go to the hospital. While recovering, I had a lot of time on my hands; I still went to every rehearsal and class, but my 3-4 hours of training time outside of the studio a day were now open. Our dads started working together again and we saw a lot of one another. My heart started opening a bit more to him, but he was not attracted to me.
A few months later, I had no one to go to my school formal with me. I was very clear but asked him if we could go as friends. He surprised me with a gorgeous corsage. Long after we got together he told me that “when I saw you come out in that red dress, there was no doubt in my mind that there was an attraction and you were meant to be more than just my friend.”
In the following weeks, he started to show more of an interest in my disease, treatments, and how to take care of me. At this point, he had rejected my feelings a couple months prior and to be honest- I had my sights set on another guy. But God had other plans for us.
As Jared started learning more, he understood the reason why I never hugged him or shown any physical effort to our friendship alone- and that was because I couldn’t. I couldn’t have anyone touch me. The RSD symptoms were too strong. My coach had been all but begging me to start touch desensitization therapy, and I was neglectful to start or even hear her out. She got Jared and my parents involved and I said I would “think about it” which we all knows meant I wasn’t going to do it.
On my 17th birthday, Jared got the nerve up to ask me to be his girlfriend- knowing full and well that I wanted to date to marry, not just date around. During his speech, he expressed to me that God told him that he was meant to be my husband and love me and take care of me. He knew that we may never have any physical contact, but he fully understood that. He knew that dating me meant dating this disease and all the ugly that comes with it- but he knew he was meant to be my person.
Flash forward to a year later and I had conquered touch! My mom said that she never thought she would be so happy to see me curled up on the couch with a boyfriend or seeing any PDA- but it meant I could be touched. It was a great year: I graduated, was back dancing (not on track for a career but just for myself), was able to have fun and do normal couple dates with Jared, and Jared even did a promise ring “proposal” so that I knew that he was still committed and that I was going to be his wife someday. It was amazing.
Now this is where the story changes pace. It was my freshman year of college and the RSD was rearing its ugly head, and I did something I was very against- taking medication. There is no specific medication for RSD, but there are some that have helped. A couple years back, I had pretty much exhausted the list except for one. At that time I was done trying meds. I hated all the side effects so I hadn’t tried that one. In an effort to keep up with my university classes and full time job teaching dance… I called my doctor and wanted to try the medication.
About 1.5 months into the medication time line, I started having some pretty bad symptoms- severe depression, nausea, GI issues, and suicidal thoughts. The symptoms were too spread out for me to realize they were all connected. I hadn’t reached the full dose and wanted to wait it out a little longer to see if we could get to the full dose (once I realized they were connected) and see if it would help. Note during this time period I also re-injured my achilles tendon and had micro-tears up and down the tendon, which is where I thought the depression was coming from.
One night in the very beginning of November 2014, I went over to Jared’s house and ironically we watched The Vow. We were just watching tv as a distraction technique to void off the pain. That night I complained of severe chest pain, headaches, blurry vision, and suicidal thoughts. The next afternoon I was taken into CHB. In the ER, they evaluated and tried to give me morphine to stop the pain and it didn’t even help one bit. We couldn’t get the pain or symptoms under control so they admitted me. My pain doc, who is the head of my medical team, came by the next day and said that I needed to get off it ASAP, and he was worried about the effects if I weaned off it so they were going to take me off cold turkey. That is not something you should do with this med, but he (along with the rest of my AMAZING team) felt that the repercussions would be worse if they didn’t take me off it asap. The first 17 hours were fine being off of it, and then that’s when my father kept pointing out to my team that I wasn’t acting right and wasn’t doing well.
At around 3 am on the first Thursday in November, I felt my IV go cold- which was not possible because they hadn’t added anything to my drip in hours and it was the same bag. I became alert noticing this and quickly started violently shaking and sweating. My team came in and I was screaming and crying in pain. I felt like my arm was being cut off and my whole body was exploding. I kept telling my dad that “this was not how God shows His love” over and over and over again. I remember looking at my dad and telling him how much I loved him and what I wanted him to say to everyone else-especially to Jared. I truly started seeing my life flash before my eyes. All I could think about was what life would look like without me: Jared with another woman happily married, Caitie and Stephen graduating, my parents doing well. Everything looked okay without me and I was ready to go. Then everything went black.
The next day I was shocked to be awake and hated that I was awake and alive. I was ready to be done suffering- anyone that saw me that day can tell you there was very little color in my eyes. I felt like a different person. Like “Cassie” had died and I was just living in her body. More importantly I didn’t love Jared anymore. I looked at the ring and when my mom drove in that morning from NY- hours before Jared was set to arrive at the hospital I told her to give Jared the ring back, and that I didn’t want him to come. She argued with me and made me keep the ring on and said “we were not making any more life changing decisions that day.” She also told my dad and the staff that “I was not myself and that I was not her kid” she didn’t say that because I wasn’t her kid but she saw that I changed and was broken. When Jared arrived, I didn’t utter a word to him. I don’t even know if I knew what to do with him. There was so much silence.
Through those next few weeks, I finally tried pushing Jared away explaining that the girl he loved and knew died, and was not coming back. I was adamant that I did not deserve love and was worthless and that I wanted him out of my life.
Then after much deliberation we became “just friends.” Remember that scene in The Fault In Our Stars, where Augustus and Hazel are on the plane and someone asks if they are a couple and she says, “oh no we’re just friends” and he jumps in and says, “well she is, I’m not.” It was that sort of a thing.
Jared still came over, still took care of me, and took time hanging out with me so my parents could get a break (remember I didn’t want to be alive so they had me on suicide watch.) And per the agreement we made, I kept the ring on to show that we “were going to just take things slow and be friends.” To be honest, I don’t know why I agreed to keep the ring on, but I would like to believe it was because deep down in my now cold heart- I still loved him.
Then it happened. One night we fell asleep on the couch watching a movie- as friends- and I woke up feeling like my body was burning from the inside out. I shoved him off the couch and started screaming and ripping blankets off. I was crying and shaking all over. My skin was turning red and I was boiling hot to touch. My parents tried everything they knew and also knew that this was an RSD attack. They had 911 ready to call but were trying to wait this out and see if it would pass. During this time, Jared stayed watching me struggle knowing that there was nothing he could do to help. My mom eventually told him to walk with her to take the dog out. She wanted to give him a break from being in the house hearing me scream. On their walk she told him, that she was more than willing to drive him home. She expressed that she knew where we were at emotionally in our relationship and that as a friend he doesn’t need to go through this (at the time Jared didn’t have the money to get his license even though he was obviously of age.) After my mom said all she needed to say, he stunned her by saying, “I know that I don’t have to be here, but I am in it for the long haul- whatever that takes.”
Early the next morning I was taken to the hospital and sent straight to the ICU. We tried two infusions that didn’t do much but left me unable to care for myself. The infusions took so much out of me that I was going to need full time care for everything from eating, drinking, going to the bathroom, and even sitting up. They discharged me on New Year’s Eve and guess who was waiting for me at home… Jared. He got my favorite dish and tried to make the most of New Year’s Eve. I was so upset and ashamed that I needed help and was still in so much pain, I started crying. I couldn’t stop crying and literally cried all the way into the new year.
One month later I had a surgery for my wrist, that went horrifically and due to all the pain meds and what not, I was still in the wheelchair.
Then in April 2015, just when you think it can’t get worse… I started randomly fainting. All the time. We kept going to the ER after many injuries, and finally after the 3rd major injury (I fainted and I fell off my shower chair onto the tile floor) my mom wouldn’t leave the ER until they admitted me to find out what was going on. This is when the unimaginable happened.
I was in a pain flare while there, and passed out (lost consciousness) 40 times in an hour, and after that hour I couldn’t remember anything. Like anything. I didn’t know my name, where I was, or who anyone else with me were- and they could tell me but I only had a 30 minute memory. During this time there were lots of tests done, but no one could figure out what caused it. My parents turned off their phones and didn’t tell anyone because they didn’t know what to do. Jared was left in the dark for the most part. About 6 days later, during a routine IV flush the nurse put it in too fast and my IV went cold. Now if you remember, that was the first thing that happened to me before I almost died, and ever since it has been a PTSD trigger. According to my mom who was there at the time, I started freaking out that I was dying and I curled up into ball and covered my eyes. Suddenly my mom started realizing I had a memory and started asking me questions, and asked me to open my eyes when I had calmed down. She asked me who she was and all these facts about her and my family came flying out of my mouth and we were were sobbing with joy.
After calling my family, she started seeing how much I knew and a lot was missing. Lots of key things. One of those being Jared. He was one of the 10 people outside of my immediate family that I sort-of remembered. Without knowing he had no idea, I called him to tell him I remembered him- he literally dropped the phone. I mean who can blame him, he has had no update on my health and has been left in the dark, and here I am telling him I remember him. After he picked up the phone, my mom asked for the phone and talked with him for quite some time outside the room. I couldn’t understand why but she was trying to help him understand that I remembered being his friend- but not being in a relationship with him.
The first time we saw each other was as awkward as it sounds. No one knew what to say. Obviously I found out that we had been in a committed relationship and I saw the ring and pictures- but it was so surreal. Now lots of things in my life were like this but this was different. How could I have loved so deeply and not remember any of it?
Jared kept trying and I kept pushing away because I didn’t like that he knew more about me than I knew about myself. I hated that he would bring me over “my favorite” foods or movies, etc. because again I didn’t like knowing that he knew more about me than I knew about myself. Granted I did like everything he showed me or gave me, because I was still me whether I remembered or not. I gave him back the ring and said I was done. I wanted to start a new life and that I didn’t want anything to do with him. So we were back at square one……. and we agreed to be friends.
Along with my family, he learned that I needed to find out what I liked and didn’t like. He spent time taking me places, trying new things, and doing new things that neither of us had any prior memories of. He came to rehab, helped take care of me, and even started coming to appointments with me. He wouldn’t give up.
Months later we started dating again, my health was declining with the newer diagnosis of EDS and dealing with all that EDS entails, but we were dating. I was falling back in love.
Later that year (late 2015) I started school again and starting forming a company. I worked out a research project with my college and started hiring staff for the summer. I knew I wanted to become my own legal company but was starting small. Jared was in school for business and was helping me out. We both were enjoying dating even though he didn’t know for sure he wanted to be apart of what I was creating, he made sure to let me know that He loved me and still felt called to take care of me.
At the end of December 2015, I asked him for the ring back.
On July 25, 2016 our company papers came in showing that we were the proud legal co-owners of OST… and we became engaged. Now we didn’t get engaged with a ring but with company papers (it’s a lot of money to set up a company and I wanted that more than a ring.)
On December 27, 2017 Jared proposed with a ring! It was beautiful and he got it on video which was the one thing I wanted in case I were to go through amnesia again. We are in the midst of planning a wedding for this Spring!
Now here we are in September 2018, we are MARRIED and I am still pretty “sick,” and the joint dislocations are heavy. We are weighing the options of a life changing surgery, learning the ropes of hypoglycemia, how to treat the dysautonomia flares and finding that as far as treatment goes my medical teams hands are tied with few options left. A lot has happened since the end of December 2015.
Right now we are figuring out next steps for regular infusions and enjoying married life! Nevertheless we are continuously adjusting to the health issues, building up Off Season Training, and now writing a book on our story.
So that’s our story, or really just the beginning of it.
I am sure you feel like you have the whole story, but there is so much more that has happened. I can’t wait to share it with you! Be sure to watch for our book when it comes out (Lord-willing probably sometime late 2019, we are still writing it on our own), Living the Vow.