By: Ariel Fixler
Towards the end I felt a real different sense of what my life should be. I did not want to get involved in anything that resembled gossip, drama or overall NONSENSE.
I was able to initiate and create peace with everyone I had hoped (except one hold out and my father). For the latter, I sent videos showcasing my love and life lessons I gleaned from him on a weekly basis. My father and I were not at all at odds. There was nothing but genuine love between us at the end and always. I just wanted his final chapter to be filled with the same peace, comfort and support he bestowed upon me so generously and effortlessly. My friends all took turns during their final visits videotaping me and sending the videos to my mom. My mother showed them to him so he could see and hear me and ignite moments of cognizance and memories. If you would like to get a sense of what the 90-second messages looked and sounded like email my mom (UNDER CONTACT US).
Towards the end of my life, I started to embody and imbue a modified mantra of Patrick Henry at the Virginia Convention in 1775, “Give me the liberty to be forgiven or give me death and let me be forgotten”.
I started to see people and life very differently. I used to want to be WELL LIKED BY EVERYONE, even people I DIDN’T CARE FOR. The irony was I spent so much of my time taking on the innate desire of being well received, regarded and lauded (both personally, professionally and academically) that I started to lose sight of what mattered and who mattered. My worst fear is was that someone would not find me humorous or charming. That they wouldn’t see my humor and connecting people was my healing tactic. That they would see the mask I was hiding under. They would notice that I was in pain. That was a perspective I only gained as my illness progressed. It also changed as I realized the one person I had not made peace with was also obsessed with the same “likeness”. It all started to make sense that in order to accept that I wasn’t going to be able create peace with that person, I needed to first make peace with those self-aware notions in my own life. I can’t be mad at them if maybe I was just mad at myself.
When I first got diagnosed I welcomed everyone with open arms who visited. Even if I secretly resented the fact I was only hearing from them because I was sick. Letting people come by who pretty much did not really like me. People who were visibly uncomfortable while visiting. People I strayed away from saying (more than smiling and reciting the usual pleasantries at events) and people who made my formative and professional years HELL. I wasn’t sure if they pitied me. I also was unsure if they wanted to make peace or tell people they had visited me. One of them didn’t even want to engage with me and just brought board games. That tactic really confused me because to them I am sick my mind is simple and games were the only distraction? I don’t know why I let it all in. There was no contest or prize for the person with the most visitors. If there was why did I want to be in contact and be supported by everyone?
I let people come by I knew were using me for set ups, to hear about people they knew I was friends with, to catch a glimpse of a celebrity, see photos and videos I kept private or hinting if they could go on my social media accounts and eye-spy and eye-stalk.
I was the friend who would see your staging of a play in some dimly lit small space Off-Broadway. If you were a musician I would promote and attend every one of your performances. If you were in charge of an event or an event promoter, I would attend, promote it and find raffles. If you owned a small business I would make it my eatery or watering hole or have all my friends order from you. Do you want to be connected to people from Team in Training, Relay for Life, Race for the Cure or Parkinson’s foundation? I will connect and in turn I will provide you with the right, friends, trainers, resources and overall support. Did you need interviewees or subjects for your online shorts, an actress for your ad or film, a job or job interview, an introduction to someone who was the right business or personal connection? I was your go to.
Why did I want to be the GO TO? Why was I unsatisfied with being liked by a few, instead of known by many? I also felt the need and constant pressure not to be just one in the crowd, whether it was my fashion or my humor and composure. I thought maybe it normalized me. I always felt the need to go overboard when someone was feeling down or conversely celebrate someone’s triumphs, milestones and achievements. That could only leave me with disappointment regarding my own highs and lows in life.
I wanted to be known and stand out. I guess I saw a friend from my formative years who was always trying so hard. She used to be the subject of bullying and mocking. In my later years, I saw her constantly asking people for definitive plans and her awkwardness was evident and people would put her off just the same. I felt awful for her. She was a smart woman and she knew she was being put-off and it only made her try harder which was difficult to idly observe. She deserved better. I just didn’t want to be that person. Why did I try so hard at being liked, when I could have been fully concentrating on healing from the outside within? The mistake of the “like syndrome” was a mistake I only remedied with a learning curve.
I was also saddled with “the over sharing syndrome”. These were people who came and visited and would over-share like crazy. Letting you in on things in their life you never knew or should know. It will lift your spirit. Whether it was telling me details of their personal and love lives, professional and personal bullying, hidden secrets and personal traumas. Then I felt the need to over-share even though I stray away from doing that as the norm. I don’t want to know if you actively cheat on your husband/wife/fiancée, or that you snoop on your significant other and delete messages and read them all or that you are being emotionally and physically abused. If you don’t want to leave that person and end that relationship on your own what can I do? I don’t want to know the person who is your best friend is actually your nemesis, or that your future husband/wife is evil and it’s too late to turn back. Don’t be mad at me for giving you advice you do not want to hear.
As time went on, my friend Evan Hodes and I had a running joke about how “over it” we were with “over-sharing and “over-posters”. My friends Robin, Valerie and I had a nice thread going of sheer and simple over-sharers. I became disillusioned with people who felt the need to share every little detail of their life to normalize themselves. To post every little thing you do, document everything because if you don’t (it’s like it never happened). To constantly check in and tag people you are with, having opinions on every trending topic, post about every death of a public figure, the list goes on. It looked like everyone was trying to prove something to the world, as if to say “Look at me I am untouchable bitches”.
Towards the end, I had more clarity and self-awareness. I didn’t have to vocalize anything but my awareness of myself. I remember I did a massive social media purge, but I wasn’t one of those attention seeking/self-doubting assholes who post “If you are seeing this you made the cut”. One night after I sold my company and had to sell my Twitter account, I felt like I had lost a sense of control and power. I wanted to take the power back. I saw the new owners of my company engaging and posting these amazing posts and I saw they were interpreting things differently and in a new light. Their self-awareness of how to properly engage and encourage took them minutes. That kind of awareness took me much longer and I admired their courage.
On a sleepless holiday night, I conducted a cleansing purge on social media. I went from around 4500 friends on Facebook to around 1400 something. I started removing 1500 followers on Instagram and un-following just as many. It was something that I could do personally to feel a sense of control and empowerment. I didn’t want people to have access to me so to speak when we no longer spoke. I kept some people around here and there but mostly purged or created limited viewing capabilities for them. I did the same thing with limiting who and what I see on my respective feeds. It was my way of limiting the people I felt were limited. It was also helping to bring positivity in, while seeing small specs of wonderful and humor and sarcasm (which brought out the best in me and in them). Thank you Josh Jashinski for that.
I started to be more aware of the energy people brought in online and left offline. The drama people created by posting things that they were begging people say “Hope you are ok” or “OMG”. I strayed away from people who needed attention and validation and started to see there is joy in the mundane, the tender moments, the private moments shared by you and not viewed by many. I started to accept a life of keeping to myself and loving myself. I was ok with the fact my life started to resemble less of a scripted and documented BRAVO show and more of a PBS Documentary or a slow-moving, yet insightful, 60 Minutes segment.