Updated: Apr 28, 2020
YUP!!!! THIS PRETTY MUCH SUMS EVERYTHING UP!!!!!
Hey all you Cool Cats and Kittens! We have all been stuck "Social Distancing" for well over 38 days now, I am on day 80 due to disability, and what an interesting journey this has been!
I have learned so much about my health over the last 80 days, mental and physical. It is truly remarkable. I've been through A LOT of changes, becoming used to becoming truly dependent of my husband, Ken, and just learning to slow down. Understanding my self worth doesn't come from my career (definitely the hardest part, as my life REVOLVED around my job), and realizing it is really okay to be disabled. It is something I have tried to hide for so long.
I have spent so much energy just focusing on working so hard on fighting to get through each and everyday to be as close to my former self, that I had no energy at the end of the day to really enjoy my real life. It is okay to say I need help, that I can't do things, even if it is putting the dishes away, or folding laundry, some days, it is just too hard for my body to handle, and that is okay. I am not failing at anything. I am failing myself when I force myself to do things my body is unable to handle.
Now let us talk about what I have been up to. Doctors appointments. LOTS of doctors appointments. Just because the world is on lock down, doesn't mean you can't find new amazing doctors that can't help you figure out what the hell is going on with your brain/body. I really started to have a breakdown in communication with one of my doctors when they said "Yep, you're done! Time to get you set up on disability."and I felt like my voice wasn't being heard. Then somehow, another doctor was faxed my medical records, I have no idea how that happened, but OBVIOUSLY, everything that is meant to be will be, cause this guy is AMAZING!
He has put a team together, to figure out what is happening to my brain and body. The biggest thing that I have found out, is that I have a rare genetic auto-inflammatory disease that effects 1 in a million people. YUP! I'm officially ONE in a MILLION everybody! BUT I am realizing it is giving me so many answers to things I have been experiencing all of my life. In fact, it might be the answer to my hearing loss. Drawback, the only form of treatment for it is daily shots, so I am not looking forward to that starting, but you have to do what you have to do to begin having a better quality of life.
I am also really starting to understand the severity of my Traumatic Brain Injury. Not just the Physical limitations but the Emotional scars it has left on me. I know I was diagnosed with PTSD years ago, but it is not easy to address, when that majority of people don't understand treatment and care of individuals with PTSD as they think only soldiers who go to war get it. In fact so many support groups I have looked into in my area are usually PTSD for veterans or sexual abuse survivors, it isn't easy to find PTSD groups for individuals who have survived other types of traumatic events.
And I get it, some of you might read this and say to yourselves "Dude, you were in a car accident, get over it." That wasn't JUST a car accident. To me, an accident is a fender bender. This was NO fender bender. When you become conscious, can't feel the lower part of your body and have to witness the jaws of life to extract you from your vehicle, that stays with you. The sounds, the smells, the exact moment you remember the excruciating feeling of when the EMT's hit your knee cap to the bottom of the dashboard and you scream in pain, and all they can say is "She feels her legs!!!"
But as I ramble, I am grateful. Grateful I am here to ramble. Grateful things are finally getting figured out.
Grateful I have a husband that can handle the responsibility of being not only my husband but my caregiver. I know so many other people would have ran for the hills at this point and divorced my ass, but he has stayed. We are 35 years old, and he has so many other things he could be doing with his life, but he is with me, and we are purely happy; I can't express how grateful I am for that. I am grateful for my parents and my siblings who constantly keep me laughing. My true friends, near and far, who check in on me to let me know they are thinking of me cause 80 days on Couch Island has been really hard, and depressing.
And lastly, my art, I am beyond grateful for the art I am able to create again. I don't know where I would be, mentally, if I wasn't creating. I'm not a famous, well established artist in galleries around the globe with thousands upon thousands of Social Media followers, who is making a living off of my art. I am just a human being trying to get my pain out, someone just trying to get my truth out, using the canvas as a mirror to look back at myself.
I can't hid from what I create. There's no lying to myself when I am alone in my studio. I never know what is going to come out, but when it does, I know it is pure honesty and I respect it, even if I am not ready to see it.