Tuesday, February 7, 2023

Long-time Friends, two Brothers, share same Kind Heart, same Fate

I was sixteen when I met Jason and Adam. Brother's, two years apart in age. Jason sixteen like me,  Adam two years younger, just fourteen at the time. They lived a city or so over and didn't go to my highschool.  A friend I had been hanging out with at the time met them and their friends at the mall and began dating one of the two brother's friends.  

I had an on and off boyfriend at the time, from 8th grade until about a year after we graduated highschool, but since we were so young, etc,  we often broke up and dated others in between these breakups,- which sometimes lasted a couple months or more. I had been hanging out with my friends, and Jason, & Adam's friends a lot by that point and they were all good guys and a lot of fun. We started going to this pool hall/ arcade room on Friday night's that had a jukebox and was a nice place for teenagers to have fun. I'd often have them over with their friends and mine. Since my parents remodeled our basement we turned it into the party place of the house, with a pool table, ping pong table, air hocky and big stereo. I remember playing pool with Adam a lot and neither of us were very good at it but we had fun playing it while listening to music. I found out Jason had a crush on me. It eventually became an off period for my boyfriend and I, and I ended up going to an Aerosmith concert with several of my friends, Jason, Adam and several of their friends. Jason and I sat next to each other at the concert and got kind of cozy. I decided to invite him to my winter formal school dance which was approaching. He went with me. I remember exactly my dress that night and what he wore too. Could be because I still have my photographs from that night. My friend also took one of their friends as her date. I ended up getting a couple extra tickets for some reason and we brought Adam too, who went everywhere with Jason- so it didn't seem right not to bring him. 

This was 11th grade and for some reason, when looking back at those teenage years, I can honestly say without a doubt, this was definitely the most special school dance I had ever gone too. What made it significant, memorable and special? A beautiful song by Journey came on while I was slow dancing with Jason. He looked at me with sparkling eyes on the dance floor and said, "You're the prettiest girl here." I didn't respond but I didn't believe he was being sincere at first either. I looked around at all the other girls and there pretty dresses. Then I looked back at Jason. I realized his eyes never left mine despite my lack of response and me looking around at all the other girls. His sincerity was beyond obvious. 

Needless to say, Jason and I ended up just being friends in the end. But that was great, actually because  we stayed not just friends, but very good friends. The next year Adam and Jason attended my graduation party. They were the only friends from their group of guy friends who did. I have pictures of us on that day. Happy, fun, silly, young pics.  

For some reason these two guys just stuck around in my life,- like we were always just meant to stay friends for some reason. So, moving on into early adulthood, my good friend ended up dating Adam for a very short time but that didn't work out, and neither of us stay in touch with her anymore. Jason had a pretty serious girlfriend which did work out long term. She was really nice and would hang out with us too. My other friends and I would go up to this country line dancing bar that also had a rap bar on the other side, and there they were, on the rap side jammin away. I ran up to Jason once who I saw dancing alone to some pop music and started fast dancing with him randomly while perfectly lipping the song and he laughed so hard and said "Oh my god you seriously know all the words to this!" We both laughed so hard we had to walk off the dance floor. They seemed to have drifted away from their old friend group from highschool and liked hanging out with me, and vise versa. One of them would usually call towards the weekend and ask what's going on this weekend,- what are we doing? Everyone I associated with liked them,- they were always welcome and always the life of the party. And never seperate - where there was one brother you'd always see the other. 

We rang in the New Year, 2000 at my friend's New Years Eve party. It was a really fun night. I have pictures of all of us from that night, smiling and holding up our drinks cheering. One taken of us all,- a caught in the moment kind of picture, taken by someone there. We were unaware the pic was being taken, and every one in it was smiling. Jason must have gotten a copy because many years later I saw it in his old room. That new years eve was the last time I ever saw Jason and Adam together. 

I sent them an invite to my wedding and was really surprised neither of them showed. I hadn't heard from either in a little awhile which was also kind of surprising. I had kept meaning to call them but had gotten a little busy with wedding plans. 

Cell phones were just beginning to come out and I remember I had Adam's for some reason and not Jason's. So finally I did reach out, by text. He replied that Jason had gotten something called Huntington's disease. I asked what that that was. All he said was that it's something fatal and that Jason was  starting to have trouble walking and was falling down a lot and that they didn't know what to do. I attempted to call Adam but he did not answer the phone. By text he said no phone calls because he's too stressed dealing with all this. I asked him if I could have Jason's cell phone number then or if he could give him mine and he didn't reply. For about the next six months or so, I texted Adam periodically to ask how Jason was and to let them know their whole family is in my prayers. I expressed how much I cared, always valued their friendship, had and would always consider them close friends to me.  Still, no response so I figured by that point he had passed my message on to Jason and that Jason did not want to talk either. I resigned myself to the obvious fact that privacy was wished for both my friends during an unbelievably horrible illness. Reluctantly, I went into my contact list and removed Adam's phone number. I decided our friendships were now a memory and a good one. I stayed with Jason through thought and prayers that God wouldn't let him suffer. Sometimes I'd listen to the music we all used to listen to together as teenagers then and having fun. I felt at times that I could catch Jason in thought when listening to that music and praying. Sometimes, I would listen to that Journey song I danced with him to all those years ago when he gave me the best compliment of my life and wondered why I never thanked him for saying the nicest thing anyone in the world had ever said to me. I never forgot my old, best buddies. 

Many years later, in 2020, I got a text from Adam. Apparently he didn't delete me from his contact list. Two words, "Jason died." I knew right away who it was. I said "Adam,- would you like me to call you, so we don't have to talk about something like this via text" It was kinda late at night. He immediatly called me. 

Okay, so he had needed way more years of privicy, than I could even count - but I had researched Huntington's disease thoroughly by that point so I can't say I didn't understand why. And I do believe that friends are friends forever despite any passage of time.  

We got together a few times in 2020. I ended up not just helping him through (well, as much as one can in this type of situation) but sharing some of his grief with him as I knew Jason after spending years with them and had missed him too. We reminisced about the 'good ole days' a lot and seemed very much a like as adults. I did ask him once if he passed my number on to Jason those years ago as I asked, or told him I said hi and was thinking of him. He said he's really sorry but he did not do either. He said Jason likely would have wanted to see me but that he didn't  want me to see or remember his brother that way, so felt it best to disconnect from friends for awhile.  

Adam and I have since reconnected as better, more supportive friends as adults than we ever were when we were younger. Both considering ourselves as a bit of social phobs who suffer from depression and anxiety. We have been texting the last couple years kind of venting our complaints about life and just being each other's friend. We've both expressed how grateful we are that we reconnected after all those years.  After 2020 Adam never wanted to get together in person which was fine, we texted a couple times a week about pretty much everything that was going on and have stayed really good friends. I accepted that he had gotten more anti-social since we met up a couple years ago, for his own reasons. 

Then this past August he texted me the nightmare that changed absolutely everything:

"I think I have Huntington's disease."

I didn't believe him, as he had been texting me coherently  all the time, helping me when I was in  predicaments, caring for an ill, elderly relative by himself and we had so much in common. The only thing different was that we were so close but he had avoided actually getting together since 2020. Apparently I now knew why.  To his initial text I didn't want to believe it. I told him he was probably just having a panic attack or something. He asked me to come over and see if I thought he might look like he had it. When he answered the door he was rigid. His neck was over to one side. I hugged him and he was all skin and bone. I said, "Oh my God is this what's been happening to you?" With tears in his eyes he shook his head yes and told me his older brother, the only one of the three children who apparently did not get Huntington's disease, was moving over there soon to start helping him. He said that brother was the one who told him he had this  and that he wasn't sure he believed him so he wanted to get a second opinion as to whether he looked symptomatic. He looked unrecognizable. 

I was pretty involved with his care plan at first, got him quick to a doctor's who referred him straight to a neurologist. The neurologist gave him medication that really does seem to be helping the symptoms. He has declined a little bit since that day in August. Sometimes he'll revert into sort of an anti-social shell and won't be as talkative as he was before he knew he had this, but I think that's part of the disease progression. 

We still text every few days regularly. I often worry about when/if the time comes that the textes stop coming through from him and hope it's not anytime soon.  He lives at home and is safe and on a routine. 

My friend invites me over more frequently since this diagnoses, and we enjoy each other's company usually staying in the moment and not talking to much about Huntington's disease, unless he wants to. He has allowed me to be there for him, as I wasn't permitted to for Jason. Last week we watched two comedy movies in a row and had some good laughs. It's still odd at times, being around him without Jason being right there. 

Like his brother, Adam has got the same kind heart and genuine sincere words he says that I've never heard anyone say to me before. Each time I ask how he's doing  I get the same reply, -"I'm always happy- when I'm talking to you."  

Huntington's Disease is an inherited condition in which nerve cells in the brain break down over time.
It typically starts in a person's prime working years, most often in their 30s or 40s.

Huntington's disease usually results in progressive movement (chorea)  thinking (cognitive) and psychiatric symptoms.

Drugs, physical therapy, and talk therapy can help manage some symptoms but cannot stop the progression of the disease. As of now there is no cure.

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