While my energy levels are decent, I thought it was time that I tried to update everyone on what’s going on. Originally, I had planned to write a piece to wrap up my 2018 and announce what my resolutions were for last year and which ones I had managed to accomplish - however life had some other things in store, I guess. I also want to apologize beforehand that this may not be the most organized blog post I have written, as frankly, I don’t care to spend energy on that.
As many of you reading this already know, I was scheduled to fly to Chicago in March to dedicate 3 weeks to photoshoots. I was actually super pumped about this because I was supposed to go to a two day mentorship program in Northern Ireland with my absolute favorite videographer probably ever, @StoryofEve. He is so damn talented and I was thrilled to be able to learn from him, and also to be able to see my friend Chiara and her husband, and my friend Emma who was flying in with her boyfriend from England. I was really looking forward to building my skillset and to begin offering videos as part of my services. A few days before I was set to leave, however, I became sick like, right away. It was one of the most scary times of my life. I was sure that…this was my time. I really can’t explain it and when I talk about it, it makes me anxious. All I can say is that I was beginning to make a list of people I needed to apologize to and people I needed to tell I love and appreciate and so on, figuring out how to make sure my husband would be ok, thinking about what would happen to our animals and so on.
After 4 doctors at 4 different locations, I was diagnosed with Dysautonomia (the umbrella term that POTS falls under), which is much faster than some people. Previously, I kept being told that what I had was anxiety - but I am all too familiar with anxiety and I knew that this wasn’t it. What this means is that my Autonomic Nervous System doesn’t function properly. Many of the things that a normal person doesn’t have to think about, my body has a bit of a hard time dealing with. Like regulating my heart rate, blood pressure, and other things that I’m too scared to type right now. There is no cure for this…which is a thought that regularly creeps into my mind and scares me. It keeps me up at night sometimes. Though I have been doing better about not ruminating on this fact, it’s hard. There is treatment, however, and right now I am focused on finding one that I respond well to. I am clinging onto hope that I will one day have more good days than bad days.
I have likely had this for awhile and it explains why when I used to tell people that not drinking enough water would make my “anxiety” skyrocket, that people didn’t really get that, and it’s because it wasn’t anxiety after all. It also explains why I have never been able to stand hot weather, it makes me physically ill - though that part has been getting worse over the years. If I am at a beach or pool - I am either in the shade or in the water. For whatever reason, it just decided it wanted to get worse now. And I strongly suspect this is due to holding onto unresolved sexual trauma for too long. My nerves are shot. Even more reason to continue to urge people to please seek therapeutic help to deal with their shit because your energy is worth protecting, your body is worth caring for. While not everyone may have what I have or develop it, one of the things I’ve learned from this experience is that it affects everyone’s body in some way or another. Stress can actually harm you. Please be kind to yourself.
Now, I want to also talk about 2018. I had a whole list of resolutions that I don’t feel like typing out all the way but I will mention that I read even more books (about 25) than I wanted - good books. Towards the end I had started the habit of making our bed every morning (I stopped maybe temporarily since I choose not to spend my limited energy on that). I accomplished a lot of things I said I wanted to accomplish and I was proud of this. I also was officially and professionally diagnosed with OCD (another diagnosis that once I had, a whole lot of other things made sense), and I also quit smoking/vaping (officially one year ago last week). I was excited to do even more in 2019. I was excited to explore more and go on more hikes and make more friends and put myself out there more. Now it seems like I will be spending 2019 learning how to accept that I am someone with a chronic illness and yet, also developing healthier habits.
I realized through all of this how little so many things matter, How much energy I was giving to people or situations that didn’t matter or weren’t worth it. If I had a job I hated - I would have quit that shit. I was confronted head on with how short life is. The phrase “would you rather be right or happy” came to mind a lot. I realize now just how much I want to be happy. To feel freedom again. Even to just trust myself to go to the grocery store alone without fear that something might happen on the way or inside. I realized that I don’t tell the people I care about just how much I love them enough. I really, really love my friends. I am so far from a majority of them and yet they have been so supportive that I can feel it. When my symptoms are flaring extra bad at night, I have people I can talk to. Or when it was particularly bad, I had a friend here who held me on the bathroom floor for hours (her poor back - I’m sorry Hamsaana). And my husband who I begged to not go to his 6 a.m. class this morning because my symptoms were bad enough I was scared something would happen when he was out of the house. I realized that meditation is so important - SO important. The greatest gift my past self could’ve given present me was keeping a daily meditation/spiritual practice because it may have been just a tad easier to confront my paralyzing fear of dying. I realized that taking photos with all of your friends is important. I realized that taking more walks outside to breath fresh air is important. I realized that forgiveness is perhaps the most important.
While there may be no cure, it certainly doesn’t mean that I will stop caring. Now I am focused on feeding my body the nutrition it needs - especially since I have a hard time eating these days so I need to make sure that whatever it is I am able to eat is packed with nutrients (apparently homemade bone broth is where it’s at), and getting sleep (which has been hard because my symptoms tend to get worse at night for some reason). I look forward to working myself up to being able to walk for 15 minutes straight, and then 30 minutes, and then an hour, and then go on a bike or elliptical and work myself up the same way. I journal every day now using the Future Self Journaling Guide because it helps me stay focused on the good things and where I am headed versus the things that make me scared. I meditate every day from 1 to 10 minutes. I thank God or the Universe, even when I don’t feel like it. I tell people I love them. And as much as I would love to be that super inspiring chronically ill person, I’m just not. I won’t hide my pain and my fear because it is very real. And I recognize that I need support and I can’t go through this alone.
What does this mean for my photography career?
Well, right now it means that I won’t be coming in March. If I do, it’s because I was able to make an appointment with a specialist. Right now I am focused on finding some stability in my new “normal”. I am focused on treating myself from all angles, a holistic approach. I see many other people with similar conditions to me that were able to find some sense of stability at some point (though I’ve also seen and heard of those who didn’t..) and so I am confident that by treating my body and mind well, that I will get to that place. I am actually hoping that I will find that sense of stability by April. I am NOT ready to give up my dream. I have let fear win for far too long and while it will still be there - I won’t let it prevent me from doing what I need to do to feel ok again. Today I am focused on shifting my thinking from “why has my body failed me” to “how can I better serve my body?”
So that is my update. This is where I am at. On a few hours of sleep because I had a pretty bad flare up last night and somehow still managing to stare at the screen after all this time without getting a migraine, of which I’ve had every day but twice. I should also mention that I had a CT scan to rule out any masses in my brain but I haven’t had the energy to pick the results up yet so I will hopefully be able to do that today.
If you’re reading this and you’re someone who wants to tie any loose ends, regardless of where we’ve been, I am open to hearing from anyone. Life is too short to be angry. Even if I still have anger for many things in my life, I am choosing to learn how to let go and forgive. And my hope is that others will give me the same opportunity, and “they” know who they are. Nothing should be left unsaid, and we shouldn’t need to learn that from someone’s passing. I love all of you, please know that.