Hello, my name is Joy… and I’m a control freak. Not in a bad way, I mean I’m not Fidel Castro, but I do admit to a penchant for control. Because I could never be sure what I would get from my parents, and in my home, I subconsciously decided later to control as much as I could. I wanted things to be a certain way, I wanted events to go as envisioned, and my environment to be as I needed it to be. I didn’t throw tantrums, but I didn’t appreciate when plans deviated. I learned the hard way that full control doesn’t exist.
Our hold on control over ourselves and our world is tissue thin and if punctured can be devastating. The feeling of total lack of control over your body, which you don’t really have anyway but conveniently allow yourself to forget, is terrifying: being sick can shred one’s sense of self. I went through my first illness alone, afraid, without support or knowledge of the medical world – watching as my body got sicker and sicker, further and further from my ability to manage it. When I finally got help, I had to watch as the medications – and the disease itself – changed my body and my appearance and even my chemistry.
Recently, I had an environmental allergic reaction – with cold-like symptoms – and it totally took me by surprise. Between one day and the next, I was stuffed up and uncomfortable. It really impacted me mentally and emotionally. I felt angry and depressed, and as if the illness was personal! I haven’t felt this sense of being offended, and taken off guard, and even hopeless, since a few years after my first illness. In my twenties, I was just learning to live with my big illness and I kept getting sick with little ones; frequent colds, sinus and eye infections.
I’d get better and then a week later, I’d be sick again. Every time I felt new symptoms, I felt despair and depression; as if it would never end and I would never be well. All of these problems were a function of my compromised immune system, of course, but the other factor was my deep, unacknowledged unhappiness with the way my life was. As I learned later (Molecules of Emotion!), my negative emotions were physically affecting my body. Stress chemicals and other neuropeptides were interacting with my system, causing aggravated dysfunction and illness. It was around this time that I began my therapeutic journey and began to change my life.
Ten years to the month after my first illness, I relapsed – my worst fear up to that moment. I spent the next six months housebound: in excruciating pain, immobile, poor because I couldn’t work, and so terrified that I even contemplated taking my life. I don’t think that losing control over your body, or life, or other important situation, means you have to totally give up, although that is always an option. I also think it is okay not to think of it as a blessing or a learning opportunity (and don’t let anyone tell you different); it is just what we’ve been given. You have to learn to deal with it in your own way, in your own time. I’ve found, though, that if you can feel you have sway over even one thing, life can be better.
You may not be able to control what your body does, for instance, but you can control what happens to it – to a certain extent – and you can control what you put into it and how you treat it. You can control who is in your life, to a certain extent, or how much time you spend with the people who you can’t give the boot. You can find someone healthy to love and support you. You can’t always control how much you sleep, but you can try for the optimum conditions in which to do it. You can reduce stress, manage what goes in your body, and how much you move it. Most importantly, you can explore your psychology and family history, and try to heal deep wounds that might be contributing to your problems.
Although I don’t look for control the way I used to, I have found virtue in my penchant for it. Being controlling has benefitted me in many ways. You have to become efficient and a good manager when you have a chronic illness, because you have to schedule things according to how much energy and ability you think you’ll have. You try to make sure not to overwhelm yourself or your capabilities. I schedule in regular days off. I’ve arranged my finances so that I have enough in case of emergency, and even when I was at my poorest, I paid the premium on my health insurance.
The kind of control we have over our bodies and, to some extent, our lives, really is remote. If a cold virus enters your body, you’ll probably get a cold. If one’s immune, or other, bodily system wants to go haywire it probably will. Loved ones may die suddenly, leases can be terminated, and natural disasters happen. We would all like to avoid unnecessary and unpleasant suffering, but how much of it are we actually causing ourselves in the effort to avoid it? I learned that striving to be in control is unhealthy and unproductive and ensures that you are not present with how things are now. Think of all the energy spent doing that striving and being frustrated, and where that energy could go instead and how much could be achieved! Once I gave up trying to control something I never had a hope of controlling, I was able to start building my life: not the life I might have imagined when I was twenty and still healthy, but a good life.
I don’t think I have a worst fear anymore. Over the years, my legs have thickened in response to the swelling and inflammation in my knees. Some of my joints have frozen, and my hands are somewhat deformed, although fortunately not as much as they could be. I live with the possibility that this could turn into a worse disease; MS, ALS, lupus, cancer. I still don’t like getting sick, but the feeling that it will never end has mostly faded. My colds clear up just like everyone else’s, even the bad one I just had that took me by surprise. Although it still takes practice, I learned to live in the now, enjoy what there is to enjoy, manage what I can, control what I’m able, have someone on my side and know that while shit does happen, I can have a say in how to clean it up.