I Am More Than My Disease…Aren’t I?

Now that I got my health update done, time for the real therapy to begin.

If you’ve followed my blog or know me personally, you know that I’ve owned my Education based business for almost 10 years now. Homeschooling, proctoring, tutoring, I’ve done it all through my business. I take a lot of pride in my job and, not to toot my own horn, but I’m damn good at what I do.

I had been tutoring this one child since he was in the second grade. English is not his first language so there were quite a few hurdles and extra duties I chose to take on to maximize the results. I would [often] be the contact point between the child’s school and the parents due to the language barrier. This meant “off hour” emails and phones, going to parent/teacher meetings (free of charge), and advocating meetings with counselors and teachers if I felt it was needed. This kid became like my child, as do all the kids I have/had. I rewarded good progress and report cards with presents and always made sure he knew that he could do anything he put his mind to. In the two and a half years I had him as a student, he progressed significantly every school year. His parents would always thank me for helping him and I felt the appreciation.

Why am I randomly bringing this up? Well, a few weeks ago his mother decides that because my MCTD has no cure and I’ll never “get better”, she no longer needs my services. I was fuming. I was angry and sad for her son who, for two years, come to rely on my presence. What really pissed me off was losing her business because of my MCTD. I don’t lie to my clients when it comes to my disease. They know upfront that I have an illness that will sometimes cause me to reschedule or even cancel sessions for doctor appointments or if I’m just not feeling well. If that happens, days are always made up, and I’m basically ‘on call’ 24/7 if anyone needs me for whatever reason. I go to work on days when I don’t have a spoon to my name. I put myself at risk by working with kids (because I’m “immune-compromised) and yeah, I’ve gotten sick more time than I can count from my students; but I’ve never once complained to my clients about it. That’s what you do when you love what you do.

If that wasn’t a big enough blow, my own family decides to [what feels like] punish me for being sick. I’ve always been the child that takes care of my parents; every family has one and, in my family, that person is me. I’ve lived within thirty minutes of them my whole life. Years ago, they decided to make me the executor of their estate. It made sense. Between myself and my brother, I’m the more responsible one and know my parents better than he does. Those are simple facts. I felt honored that my parents trusted me to handle something so important. That sense of pride has turned into something else that I can’t quite appropriate a name to. My parents decided to remove me as executor and ‘replace’ me with my brother. My mom’s exact words when I asked her why they did that were “well, you’re always saying that you’re dying so…”. That felt like a slap to the face.

Yes, I’m most likely not going to live nearly as long as I would like. Yes, my disease will progress at an unknown rate. No, as of now there is no cure and one may never be found. Do any of those have ANY bearing on my ability to effectively teach or to take on the task of handling my parents’ estate? Absolutely fucking not. I can’t control my disease and I’ve stopped thinking that I could. What I can control is the amount of fight I put in to get through the day. And dammit, let me tell you, I could have taken the easy way out and given up a long time ago; but, I’m still here. Still fighting. Still of sound mind. Still capable of handling business. I guess once you’ve had a diagnosis assigned to you, those attributes get overshadowed and lost. It took me months of therapy [after I was diagnosed] to come to terms with my disease and to drill it in my head that I have a disease, but I am not the disease. Now, it feels like all that work was for nothing…

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s