Surfing in Wisconsin

“Social media sites create an illusion of connectivity” — Malay Shah

“We don’t have a choice on whether we DO social media, the question is how well we do it.” — Erik Qualman

“You have friends all over the world; you just haven’t met them yet” –Couchsurfing.org

I can go on and on with quotes about social media. We have a lot to say on this subject. There’s information to suggest that 55% of people throughout the WORLD use social media. There is NOTHING ELSE in the entire world that 55% of people agree on (other than needing oxygen, food, and water). And I’m thinking that this phenomenon has something to do with us feeling more lonely and disconnected.

I’ve noticed in recent interactions online, I feel empty. It felt like my interactions on social media were more about the “media” than the “social”. This led me to make a decision. I have decided to use Facebook only for groups and events now. Trying to avoid my feed as much as possible. Why? Because it’s not really social there. My feed is a bunch of information being thrown into the world; thrown at the wall by my friends and family. It reminds me of advertising in a magazine. We tend to just flip through it until we find something for us. It has nothing to do with connecting.

Anyway, I’m moving most of my social to groups and in person meetings. Last night was a good example. I used the Couchsurfing app to find a Twin Cities event that happens every week. This community has created great friendships and memory makers. Couchsurfing is a way to travel on the cheap and really see the world through the eyes of others. The idea is that you can lend your couch (or guest room or air mattress or floor) to a traveler or two. They, in turn, teach you something or hang out and offer the same couch service to others if they can. It’s a great way to find travel partners and new friends. I highly recommend you check it out.

Back to my experience with this website/app; Jeremy and I joined the site years ago, when it was in its infancy. When we checked it out first, it was an interesting idea, but not something that had hit any kind of stride yet. There was no one around us that used it and only a small handful of people in the places we were looking to travel to. We also had almost no friends who were willing to write us a reference. We filled out our whole profile and got as verified as we could without paying anything. Then we forgot about our profile there. When Airbnb came out, we touched base back there, but had no desire to focus enough to try this new concept and learn the new website. Then came the app and his most recent trip.

Currently, Jeremy is in San Diego, CA learning about Watsu. It is a bodywork modality that he’s gotten a new passion for. That passion led him to search out classes so that he can also be a practitioner of water therapy and help even more of his clients with their mental and physical illnesses. When we were planning his trip, the question of what I would do for 2 weeks without him came up. Would I still come home every night if I didn’t have to? Did I really want to keep travelling 52 miles one way each day for work? No to both. I wanted to stay closer to work so that I could drive less and enjoy my extra hours in the day.

Couchsurfing came to mind when we were booking his Airbnb stay there. Why couldn’t I stay on someone’s couch close to home? That way, if something was shady, I could just go home instead. I didn’t know anyone and I didn’t know the tricks to convince a host to let me stay. But I did know how to find local events on the app. I joined an event last night for the first time. My first time actually being able to use the app helped out a lot.

First of all, everyone that joined this event online actually showed up, plus a few that hadn’t joined. This is a new concept for us Facebook users. When we have 5 “yes” answers and 15 “maybe” answers, we expect 2 attendees. Events get lost in the turmoil of the feed. So, our social on FB can turn into that feed thing again. On Couchsurfing, there’s no feed really. The events are front and center; the interactions with real people become the focus. You can’t forget when the event feed is constantly reminding you that you have something coming up.

Second, all of these people value interaction. Why would you sign up on a site to be hosted or host someone if you didn’t care about the interactions? They want in person meetings, hugs, and sharing a drink. That interaction is what taught me that short “trips” are better than long ones. I had posted a 2 week hosting opportunity on my trip, hoping to stay close to work for 2 full weeks. Yet, I have Tuesday class that I would need to go home for and Wednesdays I have a standing time to stay with a friend already. Plus, my mom is coming up for a conference at one point and I plan to stay with her for 2 days. So, that breaks my “staying” down to a few short trips. I have thus changed my trips to a few short ones. Hoping this leads to a stay or two. I’m still hoping to interact with one person or more during the times that I’d like to not have to drive to work.

Third, references are important. Interaction and connection are vulnerable experiences. Having someone tell you that another person is good can be a big anxiety reducer. We already do this for people!! How many times do you vouch for someone in your life? “Oh yeah, I do know Troy. He’s a great guy” when your best single friend tells you that she met someone who knows you. “Kelly and I used to work together. Glad you met her.” “John and I went to school together.” There are ways on the Couchsurfing app to do this. There’s personal references, host references, and traveler references. You may have a great place to stay, but be a slob when staying at others’ places. That can be found on here. You may be great at making friends, but not be able to host anyone at your place. So you’d have no references from people you’ve hosted, but many can vouch that you’re a great person to host at their place. We do this in real life; I like that this community offers the opportunity to do it online as well.

Cutting back on Facebook for my social media experience is a hard thing for me. I have spent hours and hours just scrolling my feed, sharing things that make me laugh or cry or angry. It’s a bad habit that I’d like to break. I don’t want my hobby list to include “spending hours staring at a screen sharing pictures of words”. I’ve had moments like this in the past when I found it particularly good to disconnect. I think this will be a way to find real friends again, instead of 1000 followers that like my dog videos I share. It’s already been wonderful for me. Last night, I loved really connecting with a community of vulnerable people who crave interaction and genuine connection. I’m grateful for their new place in my life.

So, what Apps and events and groups do you use to keep it cheap and still fun? What ways do you really connect with people? How do you contribute to the giant brain we’ve created with the Internet? And how have you contributed to the hands and feet of it that go out and find real interactions? Hopefully, you’ll consider reaching out by staying on my futon. Come and surf in Wisconsin in The Girl Next Door. With that, we’ll see you on the road.

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You can’t be Cancer

No one ever tells you that you are pneumonia or cystic fibrosis. You are not rheumatoid arthritis or heart disease. You have diabetes, eczema, PCOS, or a row of stitches.

And for some reason, you are bipolar. You are borderline. You are Schizophrenic, depressed, OCD, or “mentally ill”. Once diagnosed with mental illness, it becomes part of your identity in most circles.

That’s one thing that bothers me in the public eye and I think it’s part of the stigma. When I was first trained as a personal care worker, I was trained that my clients are people first. That means that “He’s a person with autism” was a perfectly acceptable statement in that company; “He’s autistic” wasn’t. It was a model that brought dignity to the people that I was there to help. It allowed this person to decide if they were going to identify themselves as their illness or as something else. With this model, the person with mental illness can be anything they want to be still. If they want to be depressed, they can. Or they can choose to be a ballerina, an artist, or a lump in bed. If they want to be crazy, they can. Or they can choose to identify themselves as a person with mental illness and explain that they’d rather not talk about their diagnoses.

I like this model. I like seeing people be able to identify themselves how they would like to. I especially like it when people choose to identify as other than their illness. It gives us more purpose than to focus on our pain.

Focusing on our pain is happening this week. There’s a lot of reasons that may be throwing our lives into a tailspin. I kind of lied to some of you because of it. I cancelled appointments and shut down friend time because of a “family emergency”. That family emergency was an emotional dysregulation that has turned dangerous.

Recently, there’s been a lot of stress. 2 months ago, we moved into our RV and parked it at a couple of friends’ place. They helped us immensely to improve The Girl Next Door to at least a running status. A few weeks ago, they asked us to leave so that they could better serve their customers, who come to their business at the house. We were in the way, where we never had wanted to be. So, Jeremy fixed the fuel pump and we were on the road within hours of it being fixed. It was 2 days after they asked and way before the date that they had told us we had to be gone. Jeremy’s emotions started to get out of control then: when he took one sentence said as him being “unwanted”.

You see, when Jeremy starts to go away and the monster of his illness comes up, it usually starts to happen the most prevalently when he’s rummenating on something that can easily be misunderstood or taken the wrong way. You didn’t say anything wrong, or even mean. His dysregulated brain latches on to anything it can to torture him. Then, it plays that thing over and over again for over-analysis. He probably won’t say anything about it right away. He knows, logically, that his brain is being a jerk.

Next stress: Jeremy found out that his oldest son was in a hit and run accident 4 MONTHS AGO!! We didn’t know anything about it. He’s an adult and totally free to keep his secrets. What hurt Jeremy the most was that his parents knew about it and kept it from us. While his son wasn’t hurt, it reminds Jeremy of his ignorance of his son because his son chooses to cut us out and use Jeremy’s parents as a shield of sorts from life’s consequences. That hurts Jeremy; it reminds him that his adult child doesn’t trust his reactions. It also reminds Jeremy that his parents are coddling this adult child; that hurts too. Pain like this is a big stressor for any parent.

Jeremy’s younger son came to stay with us from Friday to Monday of the Memorial Day weekend. This may not seem like something out of the ordinary for most of you. However, this child has been dealing with mental health issues of his own. This is the first time in almost a year that he’s been in our house for more than a few hours, much less an overnight. There was anxiety on everyone’s part, Jeremy and his son the most probably. We all want a successful relationship. The trust that was lost last year is slowly rebuilding. I don’t know about them, but I want it to be back, darnit! I’m tired of learning how to forgive and how to renew the relationship. I can only imagine how the two of them feel about it. So, for 4 days, there was the constant stress of being a good parent and learning how to trust and how to earn trust again.

On top of all of this, Jeremy’s doctor changed his meds last week. That means that this week is when we’ll start to see some of the changes that this new dosage should bring about. In the past, on this medicine, there is an initial spike of mental illness activity when there’s a change. Eventually, it evens out and Jeremy is back to himself again. And while we’re in this week and maybe next week, there will be some loss of stability with the change. This will be happening for Jeremy for a long time. He and his doctor started him back on this med back in December. He’s been very slowly and steadily increasing the dosage since then. It’s a hard place to be, the middle of a med change.

Some medicine changes happen very quickly. When Jeremy went off of Lamictal before, it was an instant thing. His doctor told him to discontinue immediately and come in for a consultation. They changed him to Lithium and that was that. Some happen more slowly. Sometimes, finding the right medicine for anything takes forever. Jeremy was on Lithium for 4 months last year. It didn’t help; in fact, it may have made things worse when he was on it. Imagine that happening 2, 3, maybe even 4 times with different medicines. This can be a multi-year process for some.

This week has erupted beyond our normal feeling of “off-balance”. Every day there is usually some uncomfortable feeling of anxiety or neuroses from one or both of us. Usually, we’re able to pull the thought train back to forward and make life work. On a normal week, it’s hard to get day-to-day life finished, but not impossible. The laundry may pile up for a few days, the bills may get paid only after a reminder letter, the dishes look icky for a whole 2 days instead of getting washed daily. It isn’t usually so off that we can’t live.

Over the last month, that hasn’t been the case. We’ve been living on bought meals and restaurants because we don’t have the foresight to make dinner. We’ve been allowing the dishes to overflow the sink. Our laundry took 5 loads the other day and I still have a basket full of dirty. We could really use the help of someone willing to help us organize, get things done, and lift our spirits. Let’s face it, isolation is another side effect of mental illness breaking down. It’s not as simple as just having the people we need in place to help. There’s arranging that needs to be done if those things are going to happen. Neither of us is up to that task. So, this week, it has all come to a head and we’ve had to try to hold the pieces together.

In the end, the month of May was extremely stressful on both of us. Jeremy hasn’t been able to regulate his emotions like he wants to. He doesn’t want to have outbursts and breakdowns. In turn, I respond by pulling inward, letting my self-care go, and riding the depression train. Neither of us wants this; we want to be happy and healthy. We are working together to find a way to make that happen. Hopefully, once we’re through this hard time, we’ll be able to go out and see you on the road again.