Simple Revelations found in Remission
By Angele Rice
I have been dealing with tickborne disease in my life for 28 years and I am 41 years old. When I state those facts it seems unbelievable that is my truth. It just doesn't seem possible. But for those of us who were misdiagnosed for very long periods of time this is the case. It does take a while to find some level of remission. And after 17 years misdiagnosis and over 10 years of some level of treatment I am starting to find my footing within my life. I feel like 80% of the time I am the author of my own life and I feel within my own skin. I don't feel like my illness dictates my every move which to be honest is the hardest outcome to accept. I am so used to my health failing at some point. Don't get me wrong I have days I'm exhausted like the next person but I am relearning what "normal" exhaustion feels like versus a flair of some sort from my high histamine or just overdoing it.
Just like I was not given a book on how to navigate tickborne disease at 13 when I was first infected, there is no real guide to talk about how you feel as you balance out again. Its a different kind of loss, a different kind of realignment, a different kind of identity change and sometimes all the memes or quotes I see don't seem to quite explain this part of recovery. So my only language that seems to show this paradigm change at this point in my journey is photography, poetry and art. Lots of Mary Oliver, Maya Angelou, several blogs, photographs or artistic renderings of trees, and lots of fiddling around with my camera.
I think the theme that hit me lately was the pictures of my face that I have taken with shadow lines splitting up parts of my face. I have played with this imagery for a long time.
Sometimes the most challenging part of dealing with any chronic invisible illness or several at once in my case is not feeling like your inward brokeness, your inward battle to get through the day, your inward struggle to hold onto a shred of hope tends to not be visible to others. I've had so many people tell me I have a pretty face. And in my mind, which is where I live, I'm thinking I would give up any of my "pretty looks" for my health in a heart beat. Tickborne disease is decieving. People can look fine but be feel shredded to death on the inside. We have to be careful to not assume but listen. And sometimes that listening is done side by side but in silence. The best moments when I felt like my body was death were when my cats and son cuddle with me and watched movies. Its because even in that moment of silence I was not alone. ALONE IS HELL ON EARTH WHEN YOU ARE SICK.
I have never expected anyone to know how to take my pain away in a general sense. I just someone to see that I had two people inside of me vying for dominance, sick Angele and healthy Angele, depression and anxiety, happy and sad. To not talk about mental health which in my opinion is intertwined with chronic illness is to not admit that absolutely no one walks into any disease thinking it could last years, cost thousands of dollars, cause a loss of friendships, jobs, stability, family and even a loss of the things that make us the happiest and give us even a moments peace. No one would choose this path. NO ONE. We have to change how we view chronic illness in others and ourselves. Also its not your job to change my view of myself. Its taken medical help, counseling, protocol changes and strategies, opportunities, and life circumstances affecting me overtime for me to start to see myself in a different light. The people in my life that have made me feel loveable in the most unlovable moments were other patients. This is why in my advocacy work when I can tell a patient is connecting with another patients (me) for the first time certain connections start happening that only two patients of the same or similar struggle can understand. It is pure gold when that type of connection happens because you realize you are not alone and you are not the only one struggling in that certain way with those certain symptoms. So if you are a caregiver of a patient please do not take it personal, you are not doing anything wrong. Its just your loved one needs to speak a certain language that only another patient can understand and on top of that they may not realize as a patient that, that is what they are looking for until they find it. We are looking for a sense of community, tribe, and family. Plus added bonus, a patient can tell another patient some hard truths that family or friends on the outside cannot. These kind of connections when healthy, can help propel a patient towards healing. The patient to patient communication can also give precious perspective which when you are seriously sick is badly needed.
|My friend Dani took this picture of me photographing|
My current revelation the past month that struck me as I previewed a bunch of my past photos like the ones above is I viewed the lines on my face as showing how broken, fractured, damaged, spent I felt on the inside. At this point I see those lines differently now. I realized I wasn't seeing each line as a root or branch of a tree. That overtime I have grown towards the light, matured, healed, branched out, rooted deeper into my life with a steadier view of who healthy Angele is and who she is becoming. I couldn't see the full glorious person I was becoming. Perspective takes time to develop. And with the help of some amazing Lyme friends and family I am rooted into my role as an advocate, educator, speaker, and social media guru. I could only see myself as someone behind the camera because I was too messy to be seen in the light. That's not what I see now and that's okay. When we have paradigm shifts I think we can feel guilty because why couldn't we come to this conclusion sooner. Why did it take so long to get here. I can only say to you, you can get here, and it will take time, some make sure you bring some good friends along for the ride because you are not the only one tripping over your own feet while walking forward. YOU ARE NOT ALONE.
Photo Credit: Angele Rice
Oak Grove Cemetery, Bath, Maine
|No edits, No filters, Just Me as Me|