You are currently browsing the tag archive for the ‘Chronically Ill’ tag.
I have a moment, a feeling frozen in my mind. I doubt that it will ever go away. It doesn’t haunt me. It doesn’t affect my daily life. But sometimes a memory will be triggered by the present, and I need to accept that it was part of my journey in order to move on.
I was ten or eleven years old. I’m sitting in a chair in my parent’s bedroom with tears streaming down my face. I remember vividly that I was crying because I was shaking with internal tremors that nobody could see or feel. All I wanted was for somebody to see what I felt. I wanted somebody to tell me that they knew I wasn’t lying or faking to get out of school or to gain attention. At this point I hadn’t been sick for very long (in retrospect) but it felt like it had been forever. I was miserable. I just wanted a doctor to believe me, to help me, to make it stop. Why couldn’t they see it? WHY? Tears spilled from my eyes often during those hard years.
My parents believed me every step of the way. They fought for me. I’m lucky and honest to God, I’m blessed to have them as my parents. They never gave up, and they taught me to fight for myself, my health and my hope.
Nine years later I still have those internal tremors. But as time has passed they’ve progressed. Now I have muscle tremors and spasms that are completely visible. Most days they’re minimal. I can often hide them, or hold my muscles so that they are less noticeable. Ask my best friends or my brothers if they’ve ever seen what I’m talking about and they’ll say “No”. I simply unconsciously hide most of my symptoms around people. I can’t help it.
Yesterday one of my practioners was working with my face and head. Not even five minutes later my eyes, eyebrows, nose, lips, and cheeks were in spasm. They began twitching uncontrollably for the next hour and a half. Soon my arms, shoulders and legs were jerking. The more I tried the relax my face they would act up again. I’d take a deep breath, release, and then a moment later they were back. It’s an odd feeling of vulnerability. I wasn’t afraid to let them happen yesterday, but they were exhausting. I left the appointment completely done-in.
As I lay on the table I was struck with that memory. The odd juxtaposition of my feelings nine years ago with my habit of hiding these tremors today occurred to me. Now I have that vindication. Doctors and those providing care on my medical team do acknowledge that these tremors exist. They are no longer in question. These people believed me and now they can see it with their own eyes. It’s been proven that I was never the young faker trying to gain attention or get out of school. I was a girl who needed help that I didn’t receive until it was long overdue.
So in that light not only do I have feelings of vindication now, but I have a sense of exasperation. I simply shouldn’t have had to wait nine years.
Now my sense of fairness to my younger self is troubling me.
Do I want people to see these tremors? Do I acknowledge her wish? Or do I continue to allow myself to put up a front, a different face now in the present? I don’t know. I almost hesitated to write this post because I don’t know what my final feelings are about this. It’s an internal question that I’m going to have to work out for myself. So if one day you see me and notice these muscle spasms, know that either I’m too ill to control them or, more hopefully, I’m acknowledging that little girl inside me who only wanted to be heard.
Another Lyme friend of mine shared this photo on Facebook, and I immediately sat back in my chair as a wave of understanding rolled over me. Every sane human being is searching at one point or another in their lives for something that speaks to their soul as a purpose. There’s such a deep meaning to that word. Purpose. It’s daunting. More than that though – it’s hopeful.
I feel that those of us who are chronically ill must intrinsically look to the concept of purpose differently than others at times.
I don’t know about you, but my purpose at this point in my life, in my own unique journey, is to fight for a healthier me. I wake up every day with the intention to help my body win this fight. Medications, nutritious foods, healing energy, positive affirmations and laughter are all tools in my arsenal.
One day my purpose will change. I will be a healthier me and I’ll be ready to take the next step in my life. But today? I did have a rough morning. As I place my hand over my heart I feel my hopes and dreams surging through my body. I feel the life I have in me. I feel the purpose. I am the purpose. And I’m not giving up.
peace & healing,