On Christmas Eve, I was gifted with another blood clot in my left leg.
Only last week, I wanted to write everything about it. About the anger toward a returned illness. The reasons why it happened. The blow to the ego because how can someone who helps others look deeply within themselves become this sick…again? And of course, the Fear—not just of death but of fucking up the lessons I obviously still need to learn.
It would have been meaningful. Beautifully sad. Sober and resigned.
And it would have depressed the hell out of me. It would have kept me in a sick space rather than propel me toward true health. I know why I’m here again. I’m working through it as each piece resurfaces. This is where I need to be.
Yet, as I’ve been slowly accepting this illness, I’ve also been hyper-aware of how people who aren’t sick deal with those who are. Some people are simply assholes. They see the vulnerability of illness and exploit it, almost enjoying the additional pain their carelessness causes (a particular ER nurse comes to mind). But most people, I believe, have very good intentions. They just don’t know how to express themselves well. And I get it. When a loved one is seriously ill, we want to make it all better immediately because it’s easy to begin mourning, to fear a future without him or her. Deeper still, sick people remind us of our own mortality. Planted in this fear, we say and do things to sick people that don’t always come across as compassionate. I know I’ve been guilty of this in the past.
With a bit of humor and a wealth of compassion (and if only to serve as a reminder to me), I’ve come up with the following.
How to Deal with Sick People:
Unless I specifically ask you, don’t give me random medical advice about my condition. And don’t talk to anyone else about my illness either. It’s great that your best friend’s niece just graduated with a nursing degree but if I’ve never met her and she knows nothing about my health history, I’m not interested in her opinion. Trust that I know my body better than anyone on the planet and I’ve surrounded myself with the right doctors and practitioners that are helping me to heal.
Don’t tell me about other people you know who have died from my illness. This happened the first time I got blood clots and again just last week. I cannot fully describe the gripping anxiety and fear I carried—for several days, I knew intimately what it means to be terrified. Furthermore, don’t tell me about any other sick people. I’m compassionate that your postman was just diagnosed with cancer but I need my energy to heal me—not to be sad for him and his family. Better yet, don’t talk to me about any tragedy or the news. If it doesn’t affect me or you directly, realize that right now, I can’t handle it. I cannot heal and mourn the state of the world at the same time.
Don’t try to make me feel guilty for not being able to do what I used to do or for canceling things I agreed to before I got sick. I don’t know how I’m going to feel moment by moment and if I can’t make your dinner or pick apples like we planned, don’t take it personally. I’m simply honoring what my body needs to do to get better.
Don’t feel sorry for me. If you want to feel badly, that is your prerogative, but please keep it to yourself. Your pity is not going to lift me up to a better place; it’ll only make me angry. Pity is toxic. Compassion, on the other hand, is full of light and love. I’ll take your compassion anytime!
If you can’t be supportive or present with me because you’re dealing with your own drama, then be honest. You have to come first in your own life. Also, if sick people make you squeamish, let me know that, too. You’re not doing either of us any good if you’re preoccupied or uncomfortable. I understand. We’ll reconnect when we’re both better.
Don’t assume the worst if I don’t answer the telephone. I’m probably sleeping. Or I’ve just had a good cry. Or I’m dealing with the pieces of my illness. More and more often, I’m fantasizing—creating a beautiful garden in the springtime or kneading biscotti or pizza dough on a marble pastry board or dancing again in the basement. I will call you back but when I’m emotionally ready.
Don’t be weird when you see me. I walk with a slight limp now. My skin is really dry and there is not enough lotion in the world to moisten it up. Bed rest has straightened the curly hair at the back of my head into a weird flip. The pain has me often grunting like a pig searching for truffles. And, my God, I stink. Seriously, every part of my body that can emit smells does. I bathe, wear deodorant, and brush my teeth. It doesn’t matter. It could be the blood thinners or the illness slowly releasing its toxins. The more I heal, the smellier I am. At home, it’s freeing but with others, I’m slightly embarrassed. So, please look me in the eye when you see me. I know how I appear but remember, this dry, limping, stinky state is only temporary. I’m getting better every day and I’m still me.
If you sincerely offer to help me, be prepared for the unusual. What I need most right now is for someone to cut my toenails. My Neanderthal arms can’t make up for the limited mobility. My blood clot, though dissolving, begins at my foot and ends just under my butt cheek. And so the nails have been growing for nearly six weeks—yes, before I even got sick. They’re not quite talons but they’re not cute. Vanity—and the desire to maintain a modicum of sexiness—have prevented me from having my husband do it. It takes intimacy to a whole other level. I might as well ask him to floss my teeth or change out my tampon. It’s that gross. But he’s going to have to do it sooner or later. Or you are!
Finally, don’t ask me about my illness. Unless I bring it up, let’s not talk about the details. I live with the details and if you and I dissect them with every conversation, I’m never going to get better. I’m actually becoming bored by the details—and that’s terrific!
Instead, let me tell you how my husband called me on his way to work to have me look out the window at a rainbow arching over the sunrise. And you tell me how much your six-year old loves her oatmeal. And I’ll tell you that I just bought heirloom seeds for purple cauliflower—can you believe it—purple? And you tell me how you witnessed your teenaged son being kind. And I’ll tell you that I love you. And you’ll tell me that you love me, too.
And I’ll tell you, that’s all I needed to hear. In that moment, your love and positive energy have propelled me further to true health.