About being an inspiration…

It’s been a weird and difficult few days. I’ve just been acting normally, but for some unknown reason, I’ve been told by 4 separate friends in separate conversations in the last 2 days that I’m “an inspiration” to them. They usually follow that up by saying that most people are so fake on Facebook, and that it’s refreshing that I’m so real, showing people what it’s really like to deal with MS…

On the one hand, if reading about my struggles makes them feel empowered to do more with their lives and to be appreciative of their health, I think that’s a good thing.

On the other hand, when you’ve been having an MS relapse complete with complex seizures that you’re handling alone while your husband is working 13-14 hour days, the words, “You’re an inspiration,” sound a lot like “I feel so intensely sorry for you that I can’t contain it, but I don’t want to make you feel worse.”

I remember, as a kid, actively wanting to be an inspiration to others. I always thought that it would occur because I’d done something noteworthy or genuinely helpful to humanity. I made sure to do all my homework. I practiced my instruments. I spent hours of my life writing up business plans for enterprises that never saw the light of day.

I never considered the possibility that simply maintaining a constructive attitude while continuing to exist with a disease that is often painful, lonely, and depressing would be how I made a positive difference in the world.

When I think about people thinking about me with that level of pity, it hurts… and yet, I remember the “hero” paper that I wrote about my grandma Gilda when I was in 12th grade. I didn’t pity her. I thought she was incredibly strong.

Grandma died the summer before my senior year. It was probably 3 months before I wrote that paper for AP English, but I thought about her every day. She had leukemia for 12 years, despite the fact that when she was diagnosed, they gave her 6 months. To put it in a way that will help you understand my point of view of her life, Grandma had been living with leukemia since I was 4. For all intents and purposes, I didn’t know her without it.

I didn’t find out about her illness until I was 8 or 9, and I found out accidentally. My mom was talking with her on the phone, and I overheard. She was not happy that I knew. Grandma didn’t tell anyone about her disease because she didn’t want anyone to treat her any differently. But anyone who has lived with an autoimmune disease can tell you — you need people to treat you differently for your own good. They don’t need to be coming over while they’re sick to visit you. They need to have more patience with you. They need to understand that sometimes hugs can hurt, and that it doesn’t mean you love them any less.

There are times when I wonder what Grandma would think about my blog or my raw, honest Facebook updates. I think she would be glad that I was reaching out for the support that I need, but I don’t think she’d want me to feel like I was only an inspiration because I am doing my best in spite of bad health.

The only thing I know for sure is that she always wanted me to feel safe and loved and happy. That’s what I wrote about in my paper… how even though she struggled with autoimmune disease, she still tried to do everything as if she were fine. She danced with Grandpa in the kitchen. She made good food. She was constantly making craft projects. She played with me, my brother, and our cousins, even after chemo. She didn’t let leukemia make her any less of a person. And I worry that I’ve let the seizure disorder rob me of some of my dignity and some of my self.

About being boring.

One of the things that’s very difficult for me to cope with is feeling boring. I can’t drive anywhere, so if I’m going somewhere, I have to take public transportation… but that costs money, and if I’ve had seizures within a week of the time I’m thinking about going somewhere, I get afraid that I’m going to get lost. The combination of my frugality and fear means that I usually don’t go anywhere if I don’t already have a purpose in mind.

To put things in context for you, since I was diagnosed with seizure disorder in 2008, I’ve left the house by myself and taken a bus somewhere exactly 3 times. Once, when we were living in Romeoville, I took a special shuttle to the mall for 3 of the longest, loneliest hours of my life. Since moving to Chicago proper, I’ve gone to an ophthalmologist appointment that Adam couldn’t get off work to take me to, and to the mall that’s 20 minutes from my apartment. I enjoyed the time at the coffee shop that came with that trip.

When I was younger, I did so much different stuff that my parents actually sat me down and made me drop several extra-curricular activities because they were worried I was going to have a nervous breakdown. Band, choir, BBYO, teaching Sunday school, Memphis Youth Symphony, confirmation classes, and that’s just what I can remember off the top of my head. I also was almost constantly online… but back then it was before the WWW. I would chat online with teenagers in my town for hours at a time. I didn’t care that it blocked the phone line.

In college, I started and ran a chapter of Phi Beta Fraternity. When I was in law school, I was part of the student bar association. I did community service projects. I spent endless hours reading case law and writing papers. And in my spare time, I went hiking with amazing people and tried my hand with performance art.

But since I’ve become disabled, I don’t feel like I do much at all. I foster kittens. I try to keep up with all of my FB friends and be supportive. I grocery shop and cook. I do laundry. But I’m not satisfied.

I know there’s more to life than this. I just feel like it’s just outside of my grasp.

Practicing guitar, piano, percussion, or voice seems agonizingly pointless, since there’s no one to play with… but I consistently want to do it until my inner monologue talks me out of it. I’m giving myself points for wanting to want to practice. It means I care enough to be uncomfortable with my lack of motion.

The thing that’s tough about it is that music has always been something that was both challenging and joyful. It meant sharing the experience with other people. It mattered that I practice because my individual performance affected the group’s performance as a whole. Now, it just feels like a way to remind myself about how isolated I am and how much my chops have slipped. I’ve done the Craigslist thing and have abandoned the idea of being the singer of a band. I mean, who wants to watch an overweight unknown 30-something woman trying to belt out rock n roll? I wouldn’t go to that show. I missed my opportunity there.

The only thing I can think that’s positive is in regard to learning guitar, because I’m hoping that eventually, I’ll songwrite for my kids. Having already mastered technique necessary to self-accompany will bring joy to my kids, in theory.

But what makes people interesting? It’s the things they do. And I’m not doing much besides housework, FB, and pinning things to the Paleo Compendium.

I think I need to find a good volunteer opportunity other than just fostering kittens. I need to get out of the house. I need to meet kind people. I want to help, and I know that one of the best ways to show gratitude for the good things in your life is to help folks who are in need. I guess I’ll hit up Volunteer Match.

About being realistic.

Of course, I wouldn’t be me if I didn’t try to take a step back and figure out why I’m such an emotional monster today.

First, I still have steroids in my bloodstream. A medrol dose pack stays active in your system for about a week after you’re done with it. Corticosteroids make you crazy. They just do. Add to that the chemical changes that come from stopping Gilenya and cutting my nortriptyline in half, and you’ve got my current craziness.

Don’t worry, I wasn’t having a bad reaction to Gilenya. I actually stopped this month so that Adam and I can start a family. Gilenya takes 2 months to completely wash out of your system, so there’s no thoughts of even trying until May at least. Adam wants me to keep everything regarding the impending pregnancy hush-hush until we’re actually 12 weeks pregnant. I think that’s totally reasonable. We don’t need an audience to our family planning. I just also think it’s important that I acknowledge that I’m not on any disease modifying drugs right now.

I think that I can reasonably say that I’m handling things mostly well. Rather than crawl into bed and mope, I’ve been cleaning, writing, and actively not self-harming. I thought about day drinking for a half a second today and decided that it would be the equivalent of feeding the beast. Instead, I dyed my hair and am slowly tackling the ginormous mountain of clean clothes that need folding.

Oh, and taking care of the dog, who needs to be taken out right now. I’ll never need to question whether I make a positive difference in Brisco’s life. 🙂 He’s a good dog.