Considering how things had been going, my life has recently been filled with relatively, as well as much needed, good news. I’ve now been living on my own for a month- something that was absolutely unthinkable as recently as early this summer- in my latest adopted hometown of Somerville, NJ. While no substitute for the southern California weather and environment that I enjoyed for nearly 20 years, it’s a quaint town, with nearly everything I need in walking distance. (Given my condition, the enormous ShopRite is kind of terrifying, though. Luckily, there are enough takeout places to keep me from starving.) Even better, the building I live in, The Colbalt, has barely been in New Jersey longer than I have! It’s a friendly, somewhat vibrant place to live, but also quiet, with occasional social events for the residents. There’s even a nice club room with big screen TVs, a pool table, and WiFi- which, incidentally, is where I’m writing this post right now. The first week was very difficult, and it does get kind of isolating at times- which used to be just about my favorite state to be in pre-TBI, but now is a little dangerous. So I monitor that pretty carefully.
I’ve also been getting involved in non-profit volunteering (office work, database entry- stuff that’s low stress but plays to my strengths), while taking more of an active role in the brain injury community- I’ve always had strong thoughts and opinions about just about everything, so why not get more involved into this new world that I unwillingly but unmistakably got thrown into? Also, much to my surprise, I’ve found myself playing guitar every day for nearly two months. I swore I was never going to pick it up again, as every time I did for about the first year or so post-injury, it just made me sad and angry to do so. But I recognized my desperate need for a sustainable hobby, so I figured why not go with what I enjoyed doing before all this? It’s not the same as it used to be- almost nothing is these days- but it has proven to be fulfilling, once I got over my initial reminders of how things were before all of this. My pre-TBI record was 432 notes/per minute, I’m currently at 426.
And speaking of how things were, I want to go on record to say that none of this makes me feel any closer to being okay with what happened to me. I had a lot of goals and dreams that I was just starting to realize at age 40- presumably close to the halfway point- which were taken away from me, cruelly and without warning. Many, perhaps most people in their lives, experience SOME tragic event that alters their life at some point, and the older you’re around, the more likely you are to go through it. In fact, I had already done so myself in 2015, when my then-five year old niece suffered through a brain injury that turned out to be life-altering for herself, as well as those around her. (Blog link here.) But even for those who HAVE suffered- and I completely recognize that there are people far worse off than I am- few have had to start their lives over in almost every imaginable way, right at its pinnacle, forced to move to other side of the country, with no contingency plan whatsoever. Not only was I facing NEW challenges, but I was shocked- horrified, even- to face issues that I thought I’d left behind decades ago. In hindsight, I was fortunate enough to have a family that did their best to improvise, eventually leading to new people and places that could help me try to build something meaningful with my life. (I can’t say enough nice things about Mount Bethel Village, Opportunity Project, The Brain Injury Alliance of New Jersey, as well as all of the doctors, therapists, and new friends that have helped keep me going.) After sixteen months, I am starting to at least see the POSSIBILITY that it might be starting to come into place. But I’m also holding my breathe, as it all plays out in real time, right in front of me.
And then there’s my family. It’s hard to explain, but being a “different person” makes it hard for me to be around them, the way I used to be. But we are adjusting with “creative arrangements” to help make it easier for visitations. We just need to now extend it to my aforementioned niece, Ilana, and nephew, Evan, who were the most important part of my pre-TBI life, and for various reasons- most of which has to do with my emotional struggles- have been relegated to cameo roles. But they will be here for a visit at the end of this month, so hopefully we can use the visit to build on something more frequent and lasting.
So that’s about all I have for original content, but I did find a couple of links that share some rather painful experiences, from a couple of young women who suffer from chronic illness. While different from a brain injury, some of their frustrations are very familiar to me. I don’t wish this kind of fear, anger, and sadness on ANYONE, but it’s sort of comforting to know that there are others who go through the kind of situations that are seemingly impossible explain, to those who have never experienced it. I copied the passages that I felt related to me, and boldfaced the ones that REALLY related me..
“…All of these symptoms and many more are ones that can’t be seen in a photograph. Just because I did something fun or pleasurable doesn’t mean I’m well and I didn’t pay for that activity later. A photo posted on social media doesn’t tell the entire story. It only captured one second of that day. Looks can easily fool you when the person is facing challenges from invisible illnesses.
When I hear the line, “You’re doing a lot so you must be feeling better,” a strong wave of anger floods my body, and I just want to scream back, “But you have no idea!” I know the person means well by their comment, but it’s still very hurtful. It reminds me how alone I really am in this constant battle against my own body and reinforces how others really don’t understand the complexity of my situation and the depth of what I endure each day…”
“Each day, I find my mind going back to the same thing. I keep wondering why, after all of this time, I still am in mourning of my pre-sick self. Maybe I’m sad because I never got to say goodbye to who I used to be; I was so happy and had goals I wanted to achieve. Just a year or so before, I had challenged myself to run, and I came to find that running made me feel at my best and was a form of therapy for myself. As if in an instant, any happiness drained itself from my body and my running came to a halt. I also quit my job because I couldn’t handle the stress and pain my body was being put through and I had severe depression weighing me down and telling me I needed to choose myself or possibly not be here anymore.
Once I couldn’t work anymore, I felt so disappointed in myself and to this day, I want so badly to contribute to society. I want to not wake up each day thinking that my life lacks purpose. To say I had hopes and dreams is an understatement. I saw a future filled with traveling and finding my life’s purpose. Instead, I lost my happiness from depression and any ounce of pride I ever felt inside had left me. When your thoughts switch from thinking about one day buying a house with your significant other to just wanting to wake up one day and feel a little less pain, it makes you realize that you just really needed a warning that this was to come so you could have been more prepared.
With the help of a therapist, I have been through the cycle of grieving and accepting my chronic illnesses multiple times, but I don’t know that I’ll ever be completely OK with my situation. I’ve actually come to a point where I don’t even tell people anymore how I’m actually feeling when they ask because I feel like a broken record and a broken soul that can never be fixed. I have accepted that no matter how many times you try to tell others what you are feeling and experiencing, they may never truly understand. You may lose important people in your life as you have to say “no” to many outings, but those who honestly are sympathetic to your situation will stick around.”
I’ve been lucky enough to not lose anybody ’til this point- quite the contrary. Hopefully, I will never have to.