This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.
This past week has been interesting, because everything seemed to have been about the topic that I am writing about this week. It seems like a lot of things in life right now are sort of congealing into a philosophical blob about why we are not closer to each other. Isolation, loneliness, “private” HD, wonderful friends being concerned that if they admit to being physically or emotionally less than perfect, they would lose me as a friend. It all feels like it is cut from the same bolt of messed up cloth.
I remember a dark time in my life where I would sit and watch traffic, and think that in one of those cars is someone that could be important to me, and to whom I would be important. But how will we ever meet? That’s when I decided to run an ad in a local paper looking for someone to date. (This was the 1980’s after all.) The results were initially not too promising. One date asked me to pick her up for our first date, and she met me at the door in a negligee! Then on a first phone call with another one, she asked me if I minded that she had really small breasts (actually she used a different, “earthier” word to refer to that part of her body). I told her it didn’t bother me per se, but I did find it a bit “disconcerting” that she brought it up 30 seconds into her first conversation with a total stranger. And then there was the woman who claimed to be a lesbian but was looking for a guy to share her 1 bedroom (!) apartment because she felt safer with a man in the house.
Then when I was about to give up, I got one more letter on personalized lime-green stationery, with the name “JANET” at the top in bold block characters. That one letter was worth it all…
Last time we considered loneliness from the standpoint of things that a caregiver can typically lose due to the progression of this disease. The things we discussed ranged from the patient’s inability to simply express love by saying “I love you,” to their inability to even behave like a rational human being.
But before moving on, there is one remaining piece of business that needs to be handled. You see, as I considered my situation, I have come to see that I am surrounded by people who love me in a multitude of ways, are willing to say so, and even demonstrate it in the form of hugs, gentle touches and reassuring words. I receive this kind of support from family, friends from church – even people I know from online forums and local support group meetings. So, while loneliness can result from not being told that you are loved (and that certainly is a factor) it was not for me the root cause of my loneliness. So I continued looking…
My next clue came when I saw a post online from a woman who described in heartbreaking detail the feeling of being invisible – of people not really seeing her. Professional caregivers would come into her home to take care of her husband, and as they went about their duties she would feel pushed to one side – not really a part of what was going on. Now that feeling struck home.
The HD clinic we go to is always great, but I can remember, for instance, going to an Urgent Care clinic and being treated like the bus driver. Which, if you think about it, actually makes perfect sense. After all, Janet was the patient, not me. Still, I have gotten used to being part of her care team, and then in those situations, I’m not.
So with that one insight, I began exploring the idea a bit and the more I thought about it the more real it felt. Moreover, connecting the dots between invisible and lonely is really easy. If you are invisible, you are unseen. If you are not seen, there is no way that you can be known, and it is the recognition of this isolation that produces a profound sense of being alone:
But this progression also points to the solution. Consider this: If the sense of aloneness is brought on by not being known, the obvious solution is to become known. Consequently, being known results in you being recognized, and this recognition enables you to becoming fully present – which in this sense is clearly the opposite of invisible:
Looks easy on paper, right? How do I become known, and in so doing, put this insight into action? Well, there is a word to describe this process of getting to know someone deeply by profoundly understanding them. Unfortunately, the best word to describe this process is “intimacy.”
I say “unfortunately” because that word today carries with it quite a bit of cultural baggage. Our society has turned intimacy into a virtual synonym for sex. Ironically this redefinition is occurring at the same time that common terms like “friends with benefits” are turning sex into a purely physical act that is totally devoid of anything even remotely resembling intimacy! If you have never heard the term, feel free to look it up online, but be forewarned: it may turn your stomach.
So what am I to do? I could simply accept the Orwellian redefinition of yet another word, but as many people have noted, to change the culture you don’t need a mighty army, just the ability to print dictionaries. If you can redefine the words people use, you can control their thoughts, and if you can control their thoughts, you can control them.
“But,” you might ask, “what real difference does it make?” Simply this: If intimacy is redefined as simply a contextless, amoral physical act, we have essentially undercut the emotional and moral underpinnings that hold our society together by making emotional isolation and hopelessness the norm. If intimacy is redefined simply as sex, then people will only feel comfortable having close relationships with people they want to go to bed with! And that number of people is much too small for us to be emotionally and spiritually healthy.
Or consider another potential impact. I have complained in the past about the lopsided distribution of men and women on the forums. The problem is, where are the other men, and where are they going to get the support they need? Well according to one social worker I spoke with about the matter, they aren’t going anywhere. They are just going without the love, care and support they need. Maybe the effect that I am talking about here is playing a role. But regardless, I think that it is high time that we reclaim the true meaning of intimacy as profound emotional and spiritual connectedness and reject the hyper-sexualized context into which it has fallen.
If you look up intimacy in a dictionary, you will see that the first synonym is often closeness. But for me, at least, this first-order approximation is lacking because I don’t want to just be close to someone, I want them to know me and to understand me. But more than that, I want to be able to know them and understand them because, you see, real intimacy is always a two-way street.
The next thing to notice about intimacy, and perhaps this is why true intimacy is rare in our culture, is that it takes time to develop. Intimacy doesn’t come together over an occasional cup of coffee at work, talking about baseball scores. It grows slowly as people become deeply known to each other by discussing topics that expose who we are and what we stand for. Moreover, intimate conversation can be difficult because we soon discover other things that are needed for true intimacy to grow and flourish. For example, people are not all the same so we need to be able to appreciate the differences between us, and accept each other for who we are – not who we might turn into someday. Likewise, we have to be willing to set aside making judgements because we might not like everything that we see.
In addition, there are other risks to losing your “invisibility cloak.” True intimacy is risky, and the biggest problem with people knowing you is that, well, people know you, and people are notoriously unreliable. Unfortunately, there is a small percentage of folks that actually enjoy making other people feel bad, and someone who is emotionally open forever carries a target on their back. If we are to be truly intimate with each other, we need to be open to exposing to each other who we really are at our core. It means I need to let you see my hopes and dreams, while simultaneously laying bare my fears and pain – as well as the scars that life has given me. I must bring forth into the light all the dark, injured or damaged parts of my soul so they might be healed. True intimacy requires honesty at an unprecedented, and oftentimes uncomfortable, level.
In short, true intimacy is an extraordinary act of faith, and it is not a process to take on lightly or cavalierly. Please don’t take that statement as being in anyway judgemental. You have your own decisions to make on this matter, but I have already made mine. For myself, I am deciding for intimacy, openness, and transparency. I have spent too much of my life in an emotional bunker where only a very select few were allowed in, and today I am reaping the result of those decisions. I am 66 years old and while I have friends, most of the people that I was ever really close to are either dead, or soon will be. This distortion has resulted in me having a hard time hearing compliments because I always say to myself, “Oh yeah, you say that now. But you wouldn’t if you really knew me.” The solution again is openness, transparency, and intimacy. When you are open with people around you, that excuse for avoiding an emotional connection goes away.
But there is far more important point about intimacy that I need to make, and that is about the relationship between intimacy and love: the one leads to the other. I dare you to learn to deeply know and understand someone and not start loving them on some level. I think that this relationship is why when comparing Faith, Hope and Love, Paul says that the greatest of them is Love. When you have received everything that God has in store for you, neither faith nor hope will any longer be needed. However, love comes from knowing so it will continue to exist and will even thrive as real intimacy grows over eternity.
And that point serves as an excellent segue into my last comment.
Regardless of what your decision might be about openness and transparency, there is one point about intimacy that is unavoidable. The simple truth is that no one is ever truly alone. As I pointed out a week or so ago using a passage from the Psalms, there is no place where we can go that God is not already there. Likewise, there is nothing that we can do to hide who we are from God. Consequently, when God says that He loves you, you shouldn’t doubt that love. The truth is that God doesn’t love us in spite of knowing us, rather God loves us because He knows us.
In Christ, Amen ☩
A prayer for when you are feeling invisible…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the intimacy of your presence in my life. But today I want to bless you especially for the ways in which your intimacy can draw us together. Thank you Lord, for my family and friends, and all those to whom I am drawn close in Your love. Please show me how to reach out to those who do not feel Your presence and give the me grace to help draw them into Your healing light. Amen”