Hello Darkness My Old Friend

Hello again! It’s been a while since my last blog post and so much has happened. Now that things are settling down since the move to Washington, I need a creative outlet that doesn’t cause immense amount of pain, and hopefully in the process bring some positivity to my life and maybe to others.  Honestly, I just need something productive that distracts my brain from this fucking pain, and not add to it. I’ve written other blog posts from prior years, but this one will be a little different; the topics of the blog will change but the underlying message will stay the same, make a positive change.  If you are not very familiar with my story, allow me to fill you in. P.S. if you already know my story feel free to skip the next 2 paragraphs, my feelings won't be hurt. 

I’ve got a pretty shitty disease. Oh, here’s a forewarning, I may cuss in this blog, if you haven’t already noticed. I’ll try and tone it down a bit but this is who I am, and I’m not ashamed of it. I’ve gone through so much crap in my life; I don’t have the energy to worry if some of my language offends thee. So here’s an advanced apology if I write something that you don’t like to read. Back to my shitty disease, I’ve been having tumors grow throughout my body for quite a few years. They started growing in my left shoulder first; I had originally thought they were a by-product from a motorcycle accident I was in when I was 19. But after 3 shoulder surgeries, I found a neurosurgeon who wanted to find the root cause of these tumors. I had a genetic test done, and low and behold I have a rare genetic disease. I was diagnosed with schwannomatosis in 2016. I thought it was a made up name, I mean come on…just looking at the word let alone hearing it, is ridiculous. I even, for a moment, thought the doctor was playing around, but no…it is a real disease.

Schwannomatosis is part of the Neurofibromatosis family, the 3^rd and most painful branch. What that means is, I have a gene that tells my body to grow tumors in my nerves throughout my body. These nerve tumors cause excruciating pain. The best way I can describe the pain is it feels like shooting lightning that sears, stabs and carves its way through my limbs and body. For example, I have a tumor in my right forearm, and the pain will shoot into my hand, and into my fingers. Making any normal daily task very painful. Shit, just sitting or standing hurts. This disease is progressive and it’s crazy to think how much it has progressed. I have multiple tumors in my left shoulder, my forearm, right lower back, left knee, and now we believe one is growing in my right shoulder. To be honest the last few years have been exhausting. My father was killed in a horrific car crash, I had brain surgery, diagnosed with schwannomatosis and brain cancer, another tumor removal surgery in the left shoulder, and moved across country. It’s been a whirlwind of emotions and lessons, to say the least.

There’s no handbook or manuscript on how to deal with life, especially once diagnosed with a shitty and debilitating disease, or after a loved one dies. So I am trying to figure out this new life that I’ve been dealt. I’m not able to do a lot of the stuff I use to do. Like working, rock climbing, painting, dog training, and most exercises. I try to keep my body from being stagnant though. I do gentle yoga, or as I call it, old people yoga. It’s a bizarre dance between trying to keep my body and mind healthy, and listening to my body when it’s experiencing pain. Allowing myself to do what my body needs has been a difficult task. There are times when the pain is so bad, I can’t go anywhere or do anything besides sitting on the couch with a heating pad. I watch happy movies or shows to help distract my mind from the pain. If I sit in the pain and wallow in it, I find myself hating my body and who I am. So I’ve had to find a balance with not being stagnant, to not over doing things and just let my body relax; I have a hard time allowing myself to do nothing. This is the first time in my life I’ve had to do this. I use to be very independent and now need a lot of help; I started working when I was 16 and now I can’t. That’s a hard truth to accept when you’re 30. 

There are times when I meet new people and they’ll ask what I do for a living. I now just tell them the truth, but I use to experiment with different responses. I would feel a sort of shame from not being able to work. On the outside, I look like a normal woman. My pain and disease lies deep within my body. I didn’t want to tell people I couldn’t work, and feel their judgmental eyes scanning me for a good reason why I can’t contribute to society like a normal person. Sometimes I would tell people I’m currently looking, even though I wasn’t. It was easier to deal with a response from that than from, “I don’t work because I have a disease that debilitates me from working.” After a while I decided its not worth the energy to lie about something I don't have control over. I've accepted my reality, to some extent. I still have moments of guilt, anger, you know all the lovely accoutrement. Now some people become curious about my disease and ask me questions. While others just dismiss me as a moocher, or honestly don’t care what my response is. That part of not caring what response I give is so odd to me. Why ask a question if you’re not going to give the decency to listen to the response? Are they really just asking, “What do you do for a living,” as an obligation? Has it become a social norm that you ask people what their jobs are? But like I said, it’s been a journey of self-reflection. I’m trying to not let other’s judgments affect me, but I am human. This disease has definitely made me less judgmental myself though. It’s taught me humility and my compassion for others has grown immensely. Does anyone else ball at sweet scenes from a damn commercial? I just tear up at freaking anything that’s remotely sweet. Don’t even get me started on anything that involves an animal.

Anyways, I can now relate to a spectrum of people who I couldn’t before. I know my disease is not the worst out there and my heart breaks for those that are dealing with way worse. I’ve also learned to not compare myself to someone else’s life. Everyone is on their own path and journey; No one’s path is the same. We’re all experiencing something different and are learning our own lessons life has to give. We can’t judge or base our story off of someone else. If we did, life would become way more difficult. I don’t know about you, but I don’t need my life do be more fucking difficult.

I think one of the hardest things I’m learning is to let go of who I use to be, or rather how my body use to be. This may sound odd but I’ve had to basically mourn my past self. Not being able to do things you’ve grown to love is very hard to let go. Knowing I can’t do those things anymore blows and I have to move on. If I don’t, I get stuck in the woe is me, “I use to be a scuba diver. I use to have such a beautiful, strong body. I use to be so fun and active. Shit I use to be able to open bottles without pain.” You can’t go down that path or you’ll get stuck down that dark rabbit hole, and it is a dark one. That’s where your darker thoughts lay, in the deep graveyard of your past self. It’s good to acknowledge those memories and feelings but to not stay in them. It can be a dangerous path if you chose to stay down there. You become bitter, angry at the world and yourself, and those horrible thoughts of you feeling like a burden to those around you. Even the thought of death feels like a good idea down there. So I work hard to let go and move on with my life. Because that’s such a horrible place to be when the thought of being dead is easier than being alive. Sometimes the pain can be so excruciating that I plea to God to help me, or to just kill me. I wonder, “how the fuck am I going to live the rest of my life in this amount of pain?” It’s scary and seems like a bleak future. So I take it one day at a time.  I feel like I’m doing an alright job but like I said earlier, I’m fucking human. We’ve all had those moments and feelings. But I don’t like what I feel when I’m there in that dark abyss. It’s not who I am, I’m a happy and loving person. Staying in those thoughts/feelings isn’t being true to myself. And lets be honest, who wants to live like that. I'm lucky I have my husband to reach out and pull me from those black waters. Thats the key to getting out, reaching out to the ones you love. Love is an amazing tool to help shed light on the dark corners of one's mind. Don't be afraid to ask for help. The people who love you will undoubtedly be there in a heart beat to help. Let love in, let love win!

I do miss my artwork the most though. I actually get to say I was an artist; I sold in an actual gallery and had my own little line of shoes I painted for people. I even sold a pair of shoes in Australia, I’m world known bitches lol! But I have a creative mind and I’m experimenting with creative outlets, hence this blog. I also wrote a children’s book and just sent out my submission letter to literary agents and publishers. I’m able to type with a few fingers, so it does take a while for me to complete something but that’s ok, I’ve got time. So wrapping up this rambling introduction, my goal is to inspire more people to be more compassionate, understanding, happy, and true to themselves. Life is fickle and can be a mean mistress. But she can also bring so much joy and love; you just have to be willing and open to it. Remember to be kind to one another; you don’t know who is struggling with their own demons and pain. Until next time! Feel free to post any comments or questions. I'll get back to you as fast as I can. Love, Hal