by, Renee Wood
I listened to a webinar today (June 25, 2020) on loneliness given by Al Condeluci. Under normal circumstances (outside a pandemic lockdown and social distancing), and with the average person, I’m sure what he said was accurate. Ok, let me start by admitting, I took the ULCA-Loneliness Scale as suggested, and from what I can tell, I think I failed it miserably – I got 45 or something. I looked up the test online to understand the meaning of the score. From what I found, I think anything over 30 is somewhat lonely. But over 40- well!
I don’t like failing tests – well I don’t like failing anything really, so I had to ponder some of my answers, especially since I don’t feel lonely. Anyone who really knows me, knows I am really connected to the community. Many people know and respect me, and probably would say they even like me to a certain extent. I have many interactions on social media – people for the most part like what I say, but even those who don’t, it’s still a healthy dialog that we grow from. Of course, I am married to the man I love, so I have someone to talk with anytime I want/need. My point is, I have many connections and opportunities others don’t have, and yet, according to the test, “I’m dealing with loneliness”.
For the reader, aloneness and loneliness are two different things. 1) One can be alone (without others around) and not be lonely at all. 2) Or one can be alone (feel isolated) and are dealing with loneliness (separateness, people say they love them, but the person’s perception of feeling cared about by those close to them, say otherwise. Feeling you’re in this life mostly on your own, which can lead to depression – “what’s the use, no one really cares anyway”). 3) Or, one can be actively engaged with others, in that others are around, including them in every way, but the person feels lonely (isolated in a bubble, playing charades, but no one really knows them). I would say there are a few people that accept loneliness in the midst of a crowd of “cheerers”, as a casualty of trying to do something others admire, but can’t see doing themselves.
The third is what I want to talk about because I think that’s the person who I am, and why I scored the way I did. First let me say, I did not expect that finding on the test. I thought, “Oh, I know all these people, I like them, we occasionally go out, I’m married to an over talkative person (who I perceive as “lonely”. [subsequently, he took the test and got a 61! Yeah, I knew he was lonely. This called for one of those “heart to heart” talks because I worry about him]), there’s just no room for loneliness in me – I’m going to blow it out of the park with how engaged I am”! But loneliness is not totally about “engagement” with others, it’s about how one feels inside, and their perception of their connectedness with others. A plug may almost be pushed into the socket, its’ right there, it’s even engaged in the hole, but it’s just not fully connected. I call it “otherness” – a true sense of not really belonging anywhere, therefore unable to fully connect the way that most do, but still acquiring the ability to fit in.
As I ponder, I believe I had this sense of “otherness” from a very young age. My disability may have fostered it, but I think in some form it would have been there anyway. It stemmed from a clear sense of injustice – in my young years thought of as, “Not being treated the same as others”, or what I would complain to be “unfair”. When I said something was “unfair”, it wasn’t the typical child complaint of “he has more than me”. Although as a child I did engage in child quibbles like this, but I would just say, “They have more candy”! When I said something wasn’t “fair”, it meant the pain was deep, and I couldn’t understand why things had to be like that. The word “placate” may not have been in my vocabulary then, but I certainly knew the feeling of being told something to try to satisfy me, and make me think I was seeing it wrong because I refused to accept that “This is just the way it is”. These words make one angry because your gut knows it’s wrong, but you don’t have the words, knowledge or freedom yet (from parents, teachers and other professionals), with which to fight back.
One has a choice at this point, “Comply with the norm to fit in and belong”, or “Hold your gut-truths and be on the outskirts” until you’re free enough to do something about it. This is where loneliness starts for those who refuse to accept the status quo without question.
Of course, I had times when I felt totally connected with others – like they really cared about me and knew me, as well as anyone can know another person. In my early 20’s, participating at what is now the Ability Center, meeting with other young people with disabilities who were trying to figure out how to navigate life with a disability before the existence of the Americans with Disabilities Act (ADA – our civil rights). We may have taken different paths, but it all started with supporting one another. Also, the times I was risking arrest and jail time with others fighting for the same cause. The price we were paying was far above what most would risk, therefore the support and bonding with each other brought us so close. I refer to these times as mountaintop moments. Now with age and cancer, on top of the existing disability, it’s hard to imagine ever connecting with that mountaintop again.
The consistency in my life still exists however, even without the ability to reach the mountaintop. I’ve always had a sense of purpose in life – and embracing that purpose, which mitigates loneliness. Changing norms and discriminating practices as one’s mission in life, is much different from being employed to do the same thing. A mission is a way of life that offers little reward for something that is 24/7 – there is an “urgency” in one’s heart and mind because they deeply feel the pain of those who are suffering injustices. For change to happen, we need both those who are employed as systemic advocates, as well as missionaries of change, one is not better than the other, just different vantage points. Both see the issues, but as the house is burning, one knows it’s been burning for a longtime and can wait till Monday to start working on it again. The other hears the cries in the fire, goes into the fire alone, and remains vigilant doing what they can, until the flames of discrimination and oppression are extinguished for good. Not too many people want to reach out and hug you when you’re in flames.
I chose this path and I am happy – I guess I just accepted somewhere along the path that loneliness is a small price to pay to stand and fight oppression from inside the fire.
Renee's Ramblings 