From my journal, October 8, 2012

I was taking a walk this morning, and was enjoying how warm and toasty the sun felt on my shirt despite the cool temperatures. I was coming to a turn in the road where I live, when a truck slowly inched into view. A man waved for me to cross the street before he went ahead, but I made a hand motion showing I wasn't crossing the street, I was just turning onto the road he was on. I smiled because it would have taken him less than a second to drive through that intersection, when it would have taken me two and a half minutes or more at the speed I was moving. Suddenly I felt special, like someone thought I was worth two and a half minutes or more of their time. The guy smiled and waved again as he drove away, and I recognized him as a neighbor. I kept walking on, but felt like I had been hit with an epiphany. Which is: "People out in the world are nice." I was walking on air the rest of the walk home. I kept thinking, "I can make it in the world. People out there are nice. They aren't cruel and against me after all."



It has felt like the world has been against me for the last few years. When I got sick and had to give up my career and my apartment several years ago, I didn't know that I was also giving up my independence and all of the things that I loved most. It was a big adjustment. It has taken awhile to get used to no longer hopping in a car to go places anytime I want to. My health isn't good enough for me to be driving, and it isn't safe for me to be behind the wheel of a car. When I lived in NYC, I could walk anywhere, but I'm in a small town now, so I can't walk to convenience stores or public places.



I have to admit, it's been tough being tucked away from the world like this year in, year out. It's been several years now where I've not gone out to the grocery store, mall, parties, other people's houses, to a work place, to a gas station, to anywhere except my backyard. My backyard is a wonderful place, don’t get me wrong! I see so much more in nature and in details now that I didn’t see before and now appreciate. But I think I forget what real people are like. There aren’t any people in my backyard. I forget what my old life was like. It's kind of like I am living in someone else's story, in some remote world far from the world I used to live in. It's odd, to be sure. People don't tell you what happens when you get sick. They don't talk about these things. They don't talk about how difficult it is to accept this different world.



People don’t tell you that when you get sick, the scaffold of your life just might fall out from under you. Why would they tell you this, though? It’s an unthinkable possibility. But all those threads woven so tightly underneath your feet, all those supports that you’ve unthinkably assumed would always be there for you if you fell might suddenly unravel at a moments’ notice. I guess I was oblivious in thinking that of course I had a scaffold. Naive. Head in the clouds. Thinking more positively than I possibly should have been. I guess I couldn’t have imagined that so many organizations, groups and people who I thought would support me... could just bottom out all at once and let me fall suddenly through the cracks.



For example, once I became so ill that I couldn’t work anymore, my health insurance gave out, and then I got denied coverage due to a pre-existing health condition. So you lose your coverage because you are sick, but you are denied future coverage because you are sick. The healthcare system here in the US currently sucks, so this wasn’t a surprise to me. I knew that the condition I had doesn't qualify for disability benefits. Again, not a surprise. The doctors I went to for years on end eventually also had no answers for me. This was upsetting for me, but it wasn’t the end of the world. What was most surprising to me is that suddenly my closest supports started faltering. First my coworkers and friends disappeared, and then somehow my family and the church started acting shifty.



I think that at first, the hardest thing for me about getting sick was falling out of the old social network into this stretch of isolation. Nobody I knew pre-illness keeps in touch with me anymore. To be honest, I didn't really have close friends back then since I was a private person, but it was nice having coworkers while I was working. I got my taste of social interaction by going to work. Now that I’m not strong enough to work or invite people over, I resort to making friends online. These friends are mostly sick, so they don’t have the juice to interact much. Which is understandable. At times I get mad at my ex-coworkers and friends because they don't try to keep in touch with me. But then I realize that they are busy with their own lives and have long forgotten me as the coworker who rarely talked with them and kept to herself. It's not their fault, or mine, or anyone's fault. It's just how it is. But that doesn't make it easy. Even though I enjoy my alone time out in nature or holed up with a book more than most people, these long stretches of complete isolation aren't something I enjoy.



I guess one thing that surprised me most about getting sick was the way different churches and ministries treated me. I was shocked, honestly. Back in the day, ever since I can remember, I fit so well into the church scene. I was saved and meant it, was baptized, was an excellent teacher, a peaceful law abiding person, going to church, volunteering to teach Sunday school, tithing, helping others. I was in that bubble, part of the group. I didn’t think I’d ever be the one outside the bubble, pressing my hands and face against the wall trying to get in. And yet, when I got sick, each ministry and church I tried to get in contact with refused to get back in touch with me. This was heart breaking. I was too sick to leave the house for a few years and not one ministry or church returned my calls or emails to come visit me or talk on the phone. They treated me like a leper. A few of them told me I had unconfessed sin in my life, and demonic spirits that needed to be exorcized. I got myself exorcized, did a ton of self examination and confession.



One pastor told me that based on my exhaustive list of symptoms, I must have done an enormous amount of sinning, more than any one person could reasonably rack up. He told me I needed to study the scriptures and repent more. So I studied voraciously for the next couple years and got nowhere except sicker. I checked back in with the pastor and he basically told me he was done with me, there was nothing more he could do. And at this point, the other ministries still wouldn’t speak with me. It was confusing to me how of all organizations, the church could turn its back on me. I wasn't even asking for much. I wasn't asking for money, or anything. I just wanted a kind word, a sympathetic ear. But no. None of that did I get. I was told that everything that was happening to me was my fault, and there wasn’t a drop of compassion to be shared with me. It did make me angry, but I was so unwell that I didn't have the energy to stoke my feisty side and make a scene. Over time, I became disgusted at their response, and eventually gave up even trying to contact them.



So how the church treated me was interesting, to say the least. I would have never expected that. But the thing that they really don't tell you when you get sick is.... your own family might turn on you. My family has never been the type to call or stop by, and although I thought that my being ill would change that, it hasn't. It's like my family just keeps going on in their normal daily lives, while their sister/daughter is in a crisis. I tell them all the time I'm lonely and would love company, but it just goes over their head. I think they think they'll catch the illness from me, or something. But I never thought they would push me away. Not in my wildest dreams. And yet, how does the saying go, "When tragedy strikes, you will see the true colors of those that say they care about you."



I started noticing subtle signs that things weren't as loving as I'd imagined they'd be soon after getting sick. My parents couldn't drive up to help me move from NYC to PA, and they knew nobody who could help me either. They grumbled and complained if I asked them to drive me to get groceries. They went out of their way to judge me behind my back and whisper that I wouldn't ever get better and get my career back until I "got right with God." After a few years, I went through a period of time where I was very sick, unable to shower, cook for myself or care for myself. I thought I was dying.



I asked my parents if I could move in with them, and they told me no. They told me I would be a nuisance, an intrusion to their privacy. I was told to check into hospice care, and no I shouldn't expect them to give me a ride. I didn't have a place to go after that, so I became very confused and sad. Let me tell you, I was completely shocked. I always guessed based on my family's treatment of me that I wasn't really that loved, but I never thought when it came down to the wire, my family wouldn't have my back. I was so unwell that I couldn't think straight, and was very scared to be alone. I thought I dreamed it up, it seemed so unreal. And I didn't have a network of others to tell, to check in with to see if what was happening was really happening. I don't think that what happened was right, but to this day no one mentions it, no one is sorry about it, and no one hears me if I try to bring it up. But, back to the story.



I kept asking myself, what did I do to deserve this? What could I have done to have prevented this? And I realize I didn't do anything to deserve this, except agreeing to get born into this world. The only way I could have prevented this was perhaps having some real friends as a support. But if I knew how to make friends, I would have gone about that business real cheery like a long ago. But my dad beat us as children for making friends, so the neurons that normally connect as a child when you learn to make friends got severed back then, and no matter how old I was, I always felt like a large presence was going to beat me if I got caught smiling at another human. So I get the feeling that I couldn’t have created a better, stronger safety net. I couldn’t have known. And yet, I get the feeling this isn't how life is supposed to work. This is not how I imagined life to be like. The only thing that happened was I got sick and couldn't care for myself, and all of a sudden people run from me willy nilly, like I have something contagious they don't want to get. Like they don't want tragedy to rub off from me to them.



Is that how life works? At the moment you are no longer contributing to society anymore and have to ask for favors, you are on the outs list? I just can’t believe that something as simple as getting a chronic illness for several years on end could make people drop their love and care for me. Had they never loved and cared for me in the first place? Was I just simply that unlovable, and nobody had ever bothered to tell me? Or I just never realized it before? It was so difficult for me to wrap my head around believing that my family never really loved me. I resisted this, because it meant that I was by default unlovable. But I didn't know the truth then. I hadn't yet experientially realized that my value as a human being didn't depend on what those closest to me said or did. I had not learned this before, and didn't know it then. I was in a dark place.



But that morning when the neighbor waved for me to walk by, I felt loved. I felt like maybe the world wasn't against me after all. I wished that man was my father. I wished that I could re-experience all over again the breaking apart and shattering of my world, but this time with the knowledge that my parents would have my back after all. When your world falls apart, the last thing you'd want to fall away is the safety net of your family. Guess what? I had no safety net. I went into free fall, and got stuck there in that vortex. Spinning there, dizzy, but whoosh.... out of the corner of my eye, the neighbor smiles and waves, and waits for me to cross the road.




Love. There are good people out there. The whole world is not out to get me after all.







Solfeggio Solfeggio
41-45, F
2 Responses Sep 1, 2014

all I can say is wow. are you still around? this was an old post. I'd like to chat to you. I really would.

respectfully, Rick

I'm still around, although I don't get on here much these days! I'm glad you liked reading my experience. :)

like really enjoyed it and my heart goes out to you. I'm going to private message you. ok?

That feeling when you re being cared by a fellow human , priceless!