As many, if not all, of you know Ian and I moved to Pennsylvania a few months ago. The plan was to live with family outside of Pittsburgh, help out where we could with some upcoming procedures, get some medical care for ourselves and hopefully move into our own place come spring. I think we both had high hopes that we would find medical help quickly, that there would be so much for us to fill our time with and that with the stress from moving and packing over we would feel a huge weight evaporate from our lives.
I’ve never moved across the country before. And while I’ve traveled all over the country and to other countries I’ve never lived outside of Washington state. And I’ve never been in a place where there wasn’t one or more friends or family members nearby. Even heading into college, which was an exciting and terrifying experience, I lived with family, had a few high school friends handy and quickly made friends in my acting classes and by working in the costume shop. I didn’t realize what a safety net that provides.
Facebook is a wonderful tool. It allows you to let a wide swath of people know what’s going on during good and bad life-changing experiences, it shows you what kind of things are available to go out and enjoy and it connects you with people from all parts of your chronology no matter where they live until you are able to see them in person. Well, at least that’s what it should do. More often than not I think people use Facebook to stay solo, to observe and remain quiet, to look at what others are doing and feel envy. Lots of people have to take FB “vacations” because of the negativity they run across or because they have found themselves checked out of their own lives. For me it has somewhat replaced TV for those times when I find myself housebound, which is often. When I was sick in the days before internet was anything like what it is now I found that watching certain things on TV helped me to feel like I still knew what was going on even if I couldn’t get out and participate. FB seems like catching up with old friends and keeping tabs on the goings on in the world.
In the last 17 years, almost 18 now, since my diagnosis I have spent a lot of time on my own. I’m an introvert which some may think equates to “antisocial” but really just means that I recharge by being on my own. It makes sense that when dealing with some of the ridiculous issues I’ve had that my batteries would often need recharging. I’m still not sure how I’ve managed to get married, hold multiple jobs and have any group of friends, really! But all that “recharging” doesn’t come without a cost.
Not being out in the world quickly turns into the cliche “out of sight, out of mind”. It doesn’t take long before people don’t think of you or remember about what you were doing last until someone comes to them and asks, “Hey, do you know what’s going on with _____?” That might trigger an inquisitive mind to say, “Oh, I haven’t heard about or from ______ in a really long time. I’m not sure why that is. Maybe I should find out if they’re ok.” I’m sure you’ve heard people say it’s funny, with all the things we have to make life easier it seems there’s only more to contend with in everyone’s daily life. Would getting rid of some of these “helpers” actually make life simpler? Would we all be more connected without all our high-tech ways to communicate?
While our move to Pennsylvania was really one that needed to happen it hasn’t been easy. We needed better and more local healthcare – routinely crossing our fingers that life-flights to Portland’s OHSU hospital for me would be fast enough isn’t the wisest of gambles. We wanted more access to the arts and exposure to a wide variety of cultures and people and we were also answering the call by Ian’s family to come into the fold. And while many of those things are beginning to happen our life here isn’t all that different from what we had in Yakima… yet. Until our health can be returned to something more normal that’s the way things will be for a while. It’s frustrating, to put it mildly, and it has made me think about how isolating it can be to have chronic health issues.
Except for just a couple of people I have lost touch with nearly every person that I knew in Yakima. I get it. I understand that life gets busy and it really can be hard to keep everyone in the front of your mind when they aren’t right in front of you. And I haven’t really been very active on FB. I know that at times when I’ve been really ill I’ve purposefully stepped out of society in order to not be a burden to anyone, sometimes at the cost of my own well-being. I’ve tried to think of ways that I/we can connect quickly with people that will care deeply for us like old friends. I’m not religious but joining a church or place of worship does certainly offer benefits when it comes to connection. I don’t know how I feel about participating in something that I don’t really believe in though (religion-wise, not in regard to connection). The family here has its own rhythm and it can be hard to connect if you don’t know what that is. There’s also the issue of knowing people from visiting numerous times vs. living in the same place. Since it’s Ian’s family and he only left 15 years ago that bridge is a little easier for him to cross, but for me I’m finding it challenging to navigate. I’m definitely very different in many ways, not better, just different, and it can be a tremendously painful and frightening learning curve. The fear being: without friends where will I be if I can’t get on the same page as family? There is no substitute to devoted, usually long-term friends and I’m beginning to realize that there really isn’t a shortcut to belonging.
I’m sure these things are probably the kinds of experiences that people deal with when they move completely out of their “comfort” zone, but that doesn’t make it easier, unfortunately.
During this education of sorts I’ve also wondered about those that are fleeing from desperate situations: leaving dangerous countries, violent living situations or are changing their lives around a newly found illness. I’ve also thought about people like my father who is still living in a care facility in Yakima. The plan was to bring him with us but there were some unforeseen complications which came to light after we arrived in Pittsburgh that have delayed that move, perhaps indefinitely. I wanted him with me for both selfless and selfish reasons. We’ve been through a lot together and it felt like having a crazy old man around that I share blood and features with would offer an anchor of sorts. He’s usually in good spirits when we have one of our regular phone conversations and I can feel it in my bones. It’s a relief akin to drinking hot chocolate on a cold day. What happens to those folks living in the same place that don’t get a phone call or a visitor? Do they feel they’re just waiting for the inevitable?
Man, I realize this isn’t much of a feel-good kind of post but it’s been weighing on my mind and I found it was keeping me from posting about anything else. I’ve wavered between apathy, sadness, hope, desperation and excitement here. On the days that Ian is feeling well enough for us to go into the city to try a new place to eat or explore the world of options (literally from all over the world!) on the Strip or drive around gawking at houses I feel a different kind of recharging. It reminds me that this situation isn’t permanent, that we will have our own space, our own lives and, at the rate we’ve been chummy with nearly every stranger waiting tables, working a counter or acting as an amateur ambassador, our own friends as soon as we can get some health answers.
Please remember to not just think about those you care for. Reach out to them in some way other than by commenting on their FB post, even if that is a FB private message. Postage for postcards is super cheap and a present out of nowhere, no matter how small, can really help someone lonely feel loved. I’m not offering these suggestions as a way of saying “Why the hell aren’t you talking to me!?!? S%$# is going down!”… well, good grief, you know, maybe I am, but I’m also saying it to remind myself to be better at it and I’m saying it in the hope that you will reach out to someone you haven’t heard from in a long while. Maybe they aren’t ok and could really use a check-in. Maybe they haven’t been happier and would love to share that with you! Maybe either encounter will make your life better either because you feel good for helping or you feel inspired by someone’s choices. It’s ok to be selfish if you’re being selfless at the same time…. I think…. sure, let’s say it’s ok.