A Bouquet of Freshly Sharpened Pencils to the Heart

I drove my wheelchair to the bookshop around the corner the other day—not the one from You've Got Mail, it is literally a bookstore around the corner. This was my first solo trip in my wheelchair, and I was really overwhelmed with emotions and just seeing people in the world, as I hadn't been out of my house in over a month or even had the windows open, as the sun has been killer on my eyes.

When I first entered the store, there was a man selling his books he wrote at the front. I love talking to other authors and vendors in general, so I put my focus on talking to him, hoping it would settle down the overwhelming feelings I was having. He was really kind. We talked about his books, and I mentioned I had just published a book too. He asked what it was about. I told him it was a memoir about my chronic illness. He was very gentle and, surprisingly, the first thing he asked wasn't, "What are you sick with?" It was, "Does it have treatment?" I don't get that question a lot because people typically think everything has treatment.

As we talked more, I eventually told him it was Myalgic Encephalomyelitis. He surprised me again by knowing the name means inflammation of the spinal cord. Most people just think I'm speaking another language or something and zoom past it. He asked if it's fatal, and I told him yes and no. I explained to him what the disease does at its most severe and that a Facebook friend passed away not too long ago from complications.

Then he asked another surprising question—do I have siblings? The most accurate answer to this question is "yes"—but as only one still talks to me and it's sparingly, I was hesitant to answer. He was so kind and genuine though, so I told him I had three siblings. He asked if they are around to check up on me. This was also shocking, as people would usually assume they would be. I told him no, and that I have been estranged from two of them and only text with the third a couple of times a year.

When I was telling him this, I almost started crying. I didn't realize I was still taking their estrangement so hard. He looked really sad and just asked, "Why?" I told him that for some reason, most people I know with this disease end up losing family members to estrangement. It is a weird disease where you have to rest constantly, there's no blood test to diagnose, there's no treatment, and there's not enough awareness. Family members do not understand why you can't "push through," and they eventually label you as lazy and send you on your way.

Lazy... That's a funny word to describe me. Right before I got sick, I was working constantly, running an international nonprofit I started while going to graduate school full time. Since I've been sick, I moved across the country, accessed crucial benefits I need to survive, wrote a book, published and distributed the book on my own, and have had my art hanging all over town. I also desperately want to get to a place where I can pursue a PhD. But I'm apparently lazy because I cannot work a standard job. It's also hilarious because working a standard job is way easier than everything I have to do now to survive.

Anyway, the point is I was already overwhelmed in this store and thinking again about how sick I've been and how my family hasn't even tried to contact me to see what is going on with my health in over two years.

At this point, I don't want them in my life because they already showed me how little they are willing to support me in my worst times. However, it's extremely hard to watch other people who are sick with more known diseases having full family support. It's hard to tell my case manager that I don't have anyone else to take care of me besides my husband, because my friends are busy and live far away, and I am estranged from my family. It is hard to have to lean on just one person day in and day out because of lack of support. It is hard to explain what happened whenever someone tries to ask me about my family. It is just really freaking hard, and I hate this world that creates families that turn their backs on their members when they are sick rather than gathering around them to help.

I stayed in Indianapolis two years ago to rest and get better to the point of hopefully continuing to Oregon to live near my friends. Instead, I have gotten sicker because of the hoops I have to jump through just to survive as a disabled person. I may never be able to leave here. I may never be able to go back home and see my friends. I may never get to see a lot of things. If I had supportive family who helped, that likely wouldn't be the case. It is soul-crushing.

After talking to the author, I went to go around the store in my wheelchair but was feeling a lot more overwhelmed. I did not stay long and drove my wheelchair back home.

I expected to feel excited and happy I was able to go out on my own for once, but I just felt sad and my heart wasn't in it when looking around the store. The music was bothering me. The people everywhere made me uncomfortable—to where I wondered if I put my clothes back on right because it had been so long since I wore regular clothes. I had to use the bathroom, and the handicap stall wasn't big enough for my wheelchair. It was also really hard to get done what I had to in there because I didn't have the tools I have at home. Doors were hard to open and close. Then I had to ride home with the loud cars and bright sunlight.

I did it. I got there and back. I do not think it was worth it.