I’m not sure how to act or what to say in this post. I am grateful, but also embarrassed. If you know me at all, you know that I don’t really get embarrassed. So, this post is incredibly hard for me to write but I also want everyone to know what’s going on.
I have been working extremely hard at getting healthy and aiming relentlessly at achieving remission. Unfortunately, I haven’t reached that point yet. I’m sad and disappointed that I set goals and haven’t met any of them in the timeframe that I had hoped. Maybe they were unrealistic, maybe not?
So, a few months ago we came to a fork in the road. Where do I go from here? We decided as a family that my only option at this point was to apply for long-term disability. This was a painful decision, but it was even harder to apply for it. Literally. They make it pretty difficult and word things in ways that I didn’t always understand. Luckily, I had my mom to help with this daunting task.
On Monday, I received a letter that I had been approved. It was one of the most bittersweet moments in my life to date. I was full of so many emotions! I didn’t know what to think or what to do. Do I frame the letter? Or do I hide it? Was I happy or was I ashamed? Do I celebrate or crawl in a hole and cry? Should I be proud that I am able to provide for my family financially, or do I get upset because it’s not enough to really provide for my family?
I’m not really sure how I should feel to be completely honest. I think I am still processing it. Never could I have ever predicted that I would need disability starting at the age of 30 and that it would progress into long-term disability at the age of just 32.
I ask myself that question everyday. I struggle with the realization that I may never teach again. Realistically speaking, if I can’t stand for long periods of time I would be a worthless teacher. So then that means I should explore other options, right? Well, it’s too bad that lights, sounds, and my tremors prevent me from doing any of the things that I love.
I haven’t admitted this to anyone, but I can no longer draw or paint like I once could. To have a steady hand is impossible for me. It’s like I drank gallons of coffee but without the coffee. Art is a huge part of my life. My outlet. My therapy. My happy place. My specialty. Without it, I feel like yet another piece of me has been stolen. Pretty soon I fear that I may become just a shell of who I once was. Everything that defines me is slowly being eliminated by this awful disease. I rarely wear makeup anymore, but when I do I now have to usually apply eyeliner several times before it doesn’t look like an old woman riding on a bus did it. It’s just so sad and unfortunate. I don’t want to feel sorry for myself, but I also don’t want to lose myself.
I used to know her. Her carefree spirit and her wild ideas. Her ability to make people laugh, and her ability to comfort those around her when in need. Her ability to talk about anything and not get embarrassed or ashamed by it. Her ability to provide for her family physically, mentally, and financially. Her ability to teach, inspire, and motivate. Her ability to love so hard that it hurts. Her ability to be sympathetic to all those around her. Her ability to socialize and light up a room with her smile. Her ability to make her husband’s knees weak and his stomach get butterflies. Her ability to think she can save everyone and everything. Her compassion and her drive. Her ability to share in a good laugh or a good cry. Her awesome taste in music and art. Her passion for all things creative. And most importantly, her free spirit.
Now, the Christina Wise that I know is angry, bitter, and sick. She’s no longer a free spirit, but more like a caged bird that is slowly wasting away. All I seem to be good at now is helping others that have been diagnosed with Lyme or think they have Lyme. I do find joy, fulfillment, and happiness when I’m helping people so I’m not complaining, but I just wish I was more. What defines me now? Who am I? I always said I will NOT become my illness but I look in the mirror and all I can see is the face of someone that is constantly suffering looking back at me.
I am…all things Lyme.