On November 26th I wrote about Finding Hope. That writing was part of my Wellness Recovery Action Plan (WRAP) that my Peer Support Specialist is helping me put together. The “hope” portion was only the first part. There are four other concepts to this writing that I needed to figure out what their meaning was to me. These remaining concepts were easier for me to write about than writing about “hope”, but my writing didn’t turn out like I thought it would. Instead of separating these last four concepts out, I ended up combining them all in a long narrative.
It has taken me years to write my story. A bit here and a bit there. So much struggle. So much pain. When I was first diagnosed with PTSD, it was recommended to me to get my story out to help with my healing process, but I just couldn’t. This is why it has been so difficult for me to conglomerate every thing that has happened to me. I made an attempt in June of 2015 to combine everything up to that point when I wrote The Volcano is Awake. I cried writing it. It reads choppy, but it seems every time I try to write my story that happens. I am still trying to heal. Healing takes time and how that healing plays out is different for everyone. My ability to write to the point at which I have is quite an achievement for me, because for so long I couldn’t even do that much.
In this second part of putting my WRAP together, I was faced with determining what personal responsibility, self-advocacy, education, and support meant to me. As I stated before, I was not expecting my writing of these concepts to turn out like it did. I am not sure what that means, per say, but I think it demonstrates where my processing of things are, where my focus is, and where I am in my struggle to heal.
So, here it goes. Some of this writing is repetitive information from past blogs, some of it is not. This is me putting my story out explaining my ongoing journey to wellness.
I am stretched quite thin and have been for some time. My responsibility to others, particularly my family and students has led me to neglect my own self-care. The one thing that I promised myself when I was 18 years old was that I would run as often as I could and I have kept that promise through two difficult pregnancies and countless injuries. I have always lived an active healthy life style, even when I was a child I was active. I have strived to keep my body strong and healthy and it has served me well.
I was born with a congenital condition that has been slowly destroying all my connective tissues. My body cannot produce enough collagen to bind my cells together properly. The only way to be diagnosed with this condition currently is by keeping track of years of injury, and just not any injury. I am talking about joint injury, bleeding and bruising problems, and organ prolapse. I have a long list of injuries and surgeries that a person my age with long history of living a healthy lifestyle wouldn’t expect to have.
During my high school years, just prior to my first surgery, I was told by my doctor that if I let myself get out of shape I would lose my ability to walk. My joints were already that lose and dislocating. At 27 years old, after the birth of my second child, I was told that the only thing holding my body together anymore were my bones and muscles. At 38 years old, I was told that only my muscles were holding my body together anymore. I am currently 41 years old and my bones are now essentially floating in my body. It doesn’t take much for them to move out of place and cause considerable pain. It also doesn’t take much to injure myself. Just doing everyday things can cause me to end up with an injury that lays me up for days or weeks. I have to be very conscious of how I move my body. I have to keep my upper body always aligned with my lower body and that is not an easy thing to do.
I have been in physical therapy eight times since I was 14 years old. I have been told to stop running for years, but I refuse. My physical therapist doesn’t even try to tell me to stop running anymore. He says now that, yes, running is hurting me, but it is also keeping my body strong, which is needed to hold it together.
Running is also good for my mental well-being. There are days when I go running in the woods and scream at the trees. I cry. I shout. I let everything out. By the end of my run I feel tired, but purged of all that stress in my head that was tearing me apart.
I also write. Writing has become my “voice”. Through the encouragement of another teacher who saw an ability that I didn’t realize I had, who was also a mother of an autistic son and a blogger herself, I found my “voice” for the first time in my life. I was 36 years old at the time I received my Autism diagnosis, which was after both of my children were diagnosed. I was never taught how to be an advocate or to even how to advocate for myself, but as a parent and a teacher, I figured it out on my own. Finding my “voice” only empowered me further.
I now write two blogs, I have a Twitter account, and I run three public Facebook pages plus my private Facebook page. I am also a Founding Member of ANUE (Advocates for Neurodiversity and Unique Empowerment). ANUE has become primarily an online support and resource group, but there is an option to have face-to-face meetings. I am in contact with people all over the world through the internet and have meant some really amazing people.
Would it be better for me to have more contact with people face-to-face?
Yes, I do believe it would, but my situation does not allow for that, so over the last four years I have created a large social network online. It has been a life saver for me, but in times of crisis, more face-to-face support would be better.
Becoming an advocate was not something I decided one day to become. I wanted to be a teacher since I was seven years old. I struggled with the decision of becoming an Art Teacher or a Science Teacher for years, but in eleventh grade I took my first Geology class, and that was my deciding factor. I was going to become an Earth Science Educator and I did. My dream was to teach science in a public school setting and I did accomplish that. I have been a certified teacher for 18 years, but I have not held a certified position in four years. Due to my declining health and responsibilities to my family, my children in particular, I am no longer able to work in a classroom on a daily basis. I still teach, however, just in a different way than I had originally planned. This is where becoming more of an advocate comes in.
I went back to graduate school four years ago with the goal of earning a Master’s degree in Science Education. My passion lies in Science and I wanted to continue working in the field of Science Education. Unfortunately, as always, life happens when you are making other plans. My marriage collapsed unexpectedly two months into my program. It was devastating, but I had to carry on for the sake of my children and for myself.
I managed to make it into my second year of grad school and it was at this point when I began to realize there was a problem. Due to my executive function problems, I needed accommodations to get through the certain classes. My classes were mostly online and the university was in Montana with the requirement that two lab courses had to be completed on campus. I live in Washington State. The University felt they could not provide the accommodations that I needed to be successful. I had to make a choice, struggle through knowing that I would eventually fail or transfer into a different University all together. I decided to transfer to Lesley University in Cambridge, MA.
My experience with Montana State University and my experience as a teacher, a parent of two children with a variety of disabilities, and with ANUE showed me that my focus needed to be placed where my untapped strengths were pointing me toward, I am a teacher and an advocate and I needed to focus on Autism Education. Lesley University follows Universal Designed for Learning Standards. Basically, an accommodation that is good for one person is good for all. The accommodations I needed were already in place and I didn’t even have to ask for them. My experience at Lesley University was amazing and I finished in two years with a Master’s in Education with an Autism Certification.
My hope with getting a Master’s degree was that it would open more doors for employment with the ultimate goal of becoming self-employed. I even have started my business online as an education consultant and tutor. I have not been able to really focus on it, however, due to the circumstances that my family is currently living in and my own mental health. Once things start to calm down and become more stable, I fully intend on developing my business more.
Self-employment, a livable house, a place that I can call home, these are all important goals, but I think the biggest goal I have is to be finally able to heal. I have Complex-PTSD and I am in autistic burnout. I keep pushing and pushing myself each day just to get through. I am tired of trying to survive.
I WANT TO LIVE!!
It is going to be a rough ride, though, to actually reach that point of stability where I can actually reach my goals. My support team is going to be such a pivotal importance in the coming years.
Who are these people who will be that much needed support?
I am so used to struggling on my own. It was how I was raised. I grew up with very little to no support, particularly in the emotional support department. My emotional needs were essentially ignored. This was very difficult for an undiagnosed autistic child who struggled with debilitating anxiety mixed with depressed states who didn’t have the words to express how she felt nor did she understand those feelings. I was often told by my parents that their job was to provide clothing, food, and shelter. That was basically it. I had to learn to make it on my own. My marriage was like that as well, very little to no support, even during my darkest times in my life. That situation is improving, however, but very slowly.
It took me a long time to get myself to a place where I would actually ask for help. I was just so used to being told “no”, that my “voice” didn’t matter, that my needs didn’t matter. I am more disabled that I even am able to acknowledge to myself, and it is disheartening, but I know I have worth and that I matter. It has been quite a journey getting to the point where I can say that.
I HAVE WORTH!!
So, who are these wonderful people who I could turn to for help?
I created a Mind Map to sort that all out. Doctors and counselors (for both my children and I), local friends, online friends, ANUE, immediate family members, fellow teachers and advocates, my pets, there are actually a lot of people and critters listed, expect for my extended family members. My hope is with time the bubble for Other Family Members will grow, but at this time it is not possible. My parents basically disowned me for reasons I won’t go into here and I am unable to really speak to my sister for reasons that are too painful to discuss right now. When it comes to learning about the effects of trauma and learning how to adjust my life due to my physical and neurological disabilities, I am a knowledge junkie. I devour knowledge. I am forever learning and I have a skill when it comes to researching. I can find information relatively quickly and present that information in a manner that is easy for others to understand. I am always looking for answers and new pathways to follow whenever I hit a roadblock in my journey through life.
I am still looking for the pathway that will allow me to get to a point where I can actually live and not just survive. I hope that day will come sooner rather than later. I am tired, so very tired.