I was not born with the skills to be successfully sick. Living as an afflicted person, I have found, takes practice. Illness confines, tears down, and impedes. It can lead to stagnation of body, mind, and soul if I am not inclined to diligently resist my captor or to at least develop an uneasy alliance.
I was born healthy and have lived most of my life active and strong, but three years ago I fell ill and learned that I am not good at being sick. The limitations imposed have exposed my tendencies toward discontent, even depression, when life doesn't go the way I want. My losses do justify some grief, but I recognize that I have also gained. I am more empathetic and a little wiser. Subconsciously, I seem to have compiled a database of convictions regarding how to be sick. While I am certain this list is not exhaustive, and others with more experience could add to or alter it in helpful ways, so far, these are some of the things I have gleaned.
Believe you are sick. No one is surprised that people get sick, but when ill health strikes us as individuals we absorb the news of our own fragility with slack jaw and shaking head. Belief still does not come easily for me, but I push on because like any good conspiracist, I do want to believe and have made some headway. I've stopped making long to-do lists; it is finally clear that I cannot accomplish much in a day. Although, the notion that I ought to be able to continues to confound me at times. I am so far removed from my life before Lyme disease, I suspect I am not merely changed but am another woman altogether. The first woman is impatient for my pre-incarnation. She waits straight and strong, backpack on, hiking shoes tapping a solid dirt path. Unconvinced by my crutches or cane, claims of tyrannical fatigue, pounding heart, or gasps for air, she is disgusted by my whining. She, the true unbeliever, refuses to give up and so when the weather is perfect and my pain minimal, she makes me forget, and I set out only to find a walk is still my mission impossible and my deniability still implausible. I know too much.
Don't have expectations. On the surface this sounds defeatist, but for me, this has relieved a lot of pressure, disappointment, and guilt. If I have only one good hour, I have given myself permission to celebrate whatever achievement it holds. This means my house is not usually company-ready and my garden will never grace the cover of a magazine. It means I miss parties, weddings, even funerals. But once I began to believe my limits were real, diminishing my intentions was inevitable. Some days, I accomplish nothing. Without goals or expectations, these days have become needed rest days instead of I-am-a-lazy-useless-slug days. And, if I don't expect a productive day, when one dawns, it is a gift I cherish. I know this may not be a beneficial outlook for everyone. Some may be buoyed by the streak of pen across listed goals. I say, whatever works. But, if like me, your particular illness comes with symptoms that wax and wane, allowing your activity to follow the same flow may be more forgiving.
Hang out with other sick people. They are the first step out of suffocating heat into an air-conditioned room, a safe place where you can breathe easily; explanations, excuses not required. You can be honest about symptoms, sorrows, and hopes. Talk, cry, or even laugh about being sick. While it may offend when a well person jokes about your frequent falls or failing memory, somehow it is catharsis to chuckle over shared debilities. Or don't talk about disease, pain, and loss; talk about movies, books, and gardens.. Knowing you don't sit alone in this sad little boat, you're not the only one too tired to row, and that someone drifts along with you is a lifesaver.
Hang out with healthy people. This can be tough. These people wear me out. Just an hour with one can put me down for a couple of days, but it's worth it. I have sacrificed friendships - - lost touch with people who are busy working and shopping, going to movies and dinners. I didn't die, but sometimes it seems I might have slipped into some alternate universe where everything exists in slow motion; I can still see them, but they can't see me. I stopped, and they did not, so silently I said good-bye. But some have chosen to be still with me in my languid realm. Their presence reminds me that I am not just a sick person but a person simply in disrepair.
I know I said not to have expectations, but expect people will grow weary of your misery and your declining of invitations. Even people who live with you - - especially those people - - may have to tune you out or get away. Witnessing your suffering may become too heavy because they care. Remember too, entering into your suffering means letting go of their own perceived needs, the things you did for them before, the plans they had for the two of you; it means they must recognize and grieve their own losses.
Give and receive sympathy. There are people who are made to nurture. Let them come. Let them express sympathy openly. When someone genuinely hurts for you, it is a real comfort. Cherish that feeling enough to pass it on.
Cry hard. Feel sorry and lament your losses and current state. Weep until you're parched. Pound a pillow and scream about how you want your old life back. Curl into a fetal position in the middle of the floor and wail, snot, suck in enough air between sobs to sputter and spew squeaky and incomprehensible cries of outrage and despair. Let it out and let it go.
Laugh. Following the preceding display, rise from the floor, blow your nose, splash your face and discover funny. Laugh until your face is tear-streaked, until you don't have enough air left to explain why you're laughing, until you're spent and all that's left is a satisfied sigh. We reach such depths of despair, tucking ourselves into places so dark and private where no one can see us, or judge us, or expect anything. We imagine stress can't find us in this cave so we decide to stay, growing suspicious of the light, that it could blind or scald us. Hilarity, joy, laughter - - these things keep us above the surface out of our hovels of despondency.
Stop thinking about yourself constantly. Focusing on how you feel, how you can't do the things you used to, how you have to take so much medicine will make you miserable and awful company. A positive attitude is not easy to dredge up when you are always sick, and I admit, I hate when people try and push one on me. I feel trite even saying positive attitude. But, I also admit, when I think about something else - - which I will as soon as I finish writing this - - I feel hopeful.
Believe this experience is not without purpose. This is most important. Illness is confining but so is a womb - - a place of growth and preparation for new life. Searching for understanding is the natural inclination of sufferers; finding new wisdom the result. It won't happen instantly because building is a process. A foundation first, then brick by brick something solid forms.
C.S. Lewis said, “The great thing, if one can, is to stop regarding all the unpleasant things as interruptions of one's 'own', or 'real' life. The truth is, of course, that what one calls the interruptions are precisely one's real life - - the life God is sending one day by day.” I have been guilty of viewing my disease as an interruption, of looking around this house and forsaking patient arranging with angry, frustrated shoving and throwing. But this is my life, and if I am to truly live, I must be willing to renovate but also be satisfied with something less than my idea of perfect.
