What is Intimacy?

My relationship to intimacy has been flipped upside down since my diagnosis in April of 2018 with ALS. My language of love was through physical contact predominately up to that point. When my ex-wife left me four months after my diagnosis, it brought up major issues of betrayal and abandonment. These were roadblocks to trust, a prerequisite to intimacy I believe. As I began to heal those issues inside me, I began to feel a new type of freedom that is from experiencing such a disabling terminal disease like ALS.

In two years, I went from not being able to use my right hand to being on a ventilator and not being able move my body. In another six months I had to move into a state adult family home. All along the way it was incredibly, beyond measure, humbling, and was a demolition to my egotistical self-image. That is where the freedom came from. I mean, what the fuck do I care what you think about me? I'm dying here. Letting go of my projected self-image, letting go of my desire to control what others thought about me, was replaced by a trust in others to accept my authentic self-expression. With that trust in others, an openness and vulnerability naturally filled me, vulnerability being a foundation of intimacy.

For me, intimacy is a state of being in relationship to the "other", or the external world. Trust, openness, and vulnerability are the fertile soil from which intimacy blossoms. When we are sick our immune cells release hormone like chemicals, called cytokines, that alter our mood. Amazingly, when we are sick being closed and moods that promote social isolation limit the spread of disease. Although, people like me with chronic disease are at risk of being in a biochemical state that fosters being closed and socially isolating for extended periods of time. I must remind myself that I enjoy the feeling of intimate interactions when my frequent fevers might suggest, emotionally speaking, that I keep my distance.

Often it takes conscious effort to override the body-mind when we are not feeling well; whether that is from chronic disease, headaches, menstrual cramps, or allergies. Humans all have a primal desire to share love. Intimacy is the platform for us to give and receive love on all levels. Oxytocin is the hormone of love and bonding, as well as playing a role in childbirth. It is the antithesis to TNF-alpha and other cytokines, stress hormones and neurotransmitters that would keep us apart. There are ways we can increase our levels of oxytocin, besides having a baby.

The easiest way is through physical contact. I've made sure I am touched every day. It is not covered by my insurance for me to receive massage therapy, but I can get physical therapy. All my caregivers are trained with my stretching routine. At least I am touched and people make contact with me every day. Massage is such an important part of my care and wellbeing, that I pay out of pocket for a weekly massage. If done in a sensitive way, massage is very effective at increasing our oxytocin levels. If we are having severe symptoms, like in a Crohn’s disease flare up, the body might be too sensitized to the pain for a full body rub down. A perfect calming technique in those situations is a foot rub, which I love. A sidenote, ALS only affects motor nerves, and I can feel everything with my intact sensory nerves. My aunt Quyen gives me a foot massage every time she visits, and it is lovingly intimate.

In the beginning of me not being able to move my body, I would wake up in the middle of the night feeling claustrophobic and stressed, unable to get back to sleep. If it would go on for a long time I would ask my mom, who was taking care of me at the time, to rub my feet. It worked every time to get me to fall asleep. Rubbing the feet helps our energy descend and shifts our nervous system to more of a parasympathetic state, an excellent remedy to stress which causes our energy to go up and out. It is important to point out that anytime we experience physical or emotional pain it is always paired with a stress response. Chronic illness is almost always accompanied by chronic stress, although usually not experienced consciously, or silent stress. Therefore, I recommend foot rubs to everyone, saving our stressed out world one foot massage at a time.

My dear friends visited recently. Nearly the whole time they were here they rubbed my arms as we talked. We were connected physically and emotionally. Isn't that the core of intimacy? Obviously, I can't rub their arm back. I can't give them a hug or anything like that. Does that mean I don't have the capacity to be intimate? Let me quote Luke Skywalker in Star Wars 8, "reach out with your feelings". Through empathetic ability I can touch someone, so to speak. My practice of intimacy is to be, as much as possible, completely present with the people I am around. Feeling them with my empathy and intuition, but also using all my senses and deductive reasoning. Do I notice the light twitch of her mouth while she waits suggesting potential anxiety, or do I hear the extra force in his voice saying that he might also be angry?  That is how I am intimate with people.

Since I live in an adult family home, I don't get many visitors. This has drastically changed my intimate relationships. Since I can't leave here except for medical appointments, I am not able to attend any social functions. This means I stay connected with my friends and family through text and email. Intimacy, then, boils down to making it apparent I love them and am here to support if needed. Life is short, so take care of the most important things first. We can talk about the weather later.

I am with the nurses and caregivers here predominately. I have developed intimate close relationships with many of them, when possible. Mostly though, I am alone. Or am I? If intimacy is our loving embrace with our heart of the "other", can I not always be in an intimate state of mind with the divine? I'm not talking about some man in the clouds, but all of existence, the "Other". Rumi poetry exemplifies this most beautifully with their use of the "Beloved". That, for me, is the highest form of intimacy, which extends to all of creation, all of life, and especially, all our brothers and sisters of humanity. To hold the whole world with love, that is impartial intimacy.