11. My life is amazing and beautiful. Holy Oprah Ah-ha moment! This sounds trite and cliche. Before you cringe, hear me out. Being sick sucks. I hate it. But, in the midst of it, I am so freaking fortunate that it often brings me to tears. So many people, especially those with disabilities, live a life full of great struggle beyond living with their illness. I happen to live in a town I love, to live in a house I love, with a mom I love, with two dogs who are like children to me, and with all of my needs met. I eat healthy home-cooked food every day. The same person (Mom) has been my caregiver for my entire journey. My dad and Abbie live nearby. My healthcare team is beyond incredible. My friends rock. People show me kindness above and beyond my wildest imagination. I love the work I do for Hopkins and for activism.
12. I need people to fight for me. I never thought I would be considered one of the vulnerable ones in our society. But I am. I can do my teensy little share of advocacy, but I need healthy, energetic people to care for and fight for me. This means I need people like the tireless Dr. Rowe to keep doing his research and search for solutions. I need healthy people to help me with Rowe's Research Runners. I need people like my friends running for office who understand that, because they are in a position of privilege and ability, helping people like me matters. My friend M. said to me: "It's our job to do this for you because we DO have the energy and the ability." Making peace with this idea took me two decades.
13. No one asks me "What will you do when you get better?" anymore. This is, in fact, an incredible relief. 'Better' means a lot of different things. I am 'better' now than I was five years ago, but I still can't 'work' in a traditional sense. It's less painful to let go of the dream of going back to the life I had imagined for myself 'when I get better' or 'before I got sick' than it is to simply live in the present, live the best life I can, use my energy wisely towards good causes when I am able, and trust that whatever my level of functioning is or becomes, I will use my gifts as well as possible.
14. I still believe in finding a life partner. In putting myself back out into the dating world again, I realize that my life is wonderfully full. Anyone who comes into my life this time around has to be a value-add for me. Last time around, I believed that if someone accepted my illness that was 'enough' or that was 'the best I could find'. I have fought to create this beautiful life, and I won't let someone be my partner without them seeing that I bring things to the table too. We need to be a value-add to one another. Period.
15. Chronic illness is about coping. And leisure activities keep me sane.
Being sick, in pain, and struggling to get through each day is physically and mentally grueling. It's exhausting. My guess is the last time you had the flu, by the second day you were complaining and frustrated and ready for it to be over. Or the last time you injured yourself the healing time felt interminable. Let's think about going through that or feeling that way day in and day out for two decades.
One of my high school classmates had a biking accident in which she became paralyzed. In rehab, she had to participate in leisure therapy. At the time she wondered why this was so important for her healing and life. Later, she found that her photography help to sustain her. When I start to get down on myself for needing leisure time/activities in addition to all that I need for my self-care already, I try to remind myself of her words about why we need leisure activities as part of our survival story.
Being sick, in pain, and struggling to get through each day is physically and mentally grueling. It's exhausting. My guess is the last time you had the flu, by the second day you were complaining and frustrated and ready for it to be over. Or the last time you injured yourself the healing time felt interminable. Let's think about going through that or feeling that way day in and day out for two decades.
One of my high school classmates had a biking accident in which she became paralyzed. In rehab, she had to participate in leisure therapy. At the time she wondered why this was so important for her healing and life. Later, she found that her photography help to sustain her. When I start to get down on myself for needing leisure time/activities in addition to all that I need for my self-care already, I try to remind myself of her words about why we need leisure activities as part of our survival story.
The suffering can be intense. Sometimes NO leisure activity is possible because you are so sick. And often the type of leisure activities people like me can do are limited (to different degrees at different times.) During my worst times, listening to Performance Today on NPR became a highlight of my day. I listened to hundreds of books on tape that a librarian brought me and fell in love with children's literature. My friends Sarah and Bob would burn CDs for me and other folks introduced me to new music, too. I started watching TV and movies--something I rarely did before I got sick. I could do all of these things lying down or in a recliner. I colored, wrote snail mail, pet my dog(s), went for drives with Mom, learned to knit simple items, and found that painting my nails made me happy. The activities don't have to be fancy or expensive--they just have to bring you comfort, peace or joy.
To me, much of the chronic illness experience is about coping. By this, I mean finding ways to ease the suffering if at all possible. This can mean wearing a pair of heated slippers for unbearably cold feet; finding just the right pillow to alleviate or minimize neck pain; setting up the car for travel so that I am reclining the entire time; finding a way to sit while doing make-up and hair; having a total of six (yes, six!) recliners in our house; buying slip-on shoes rather than tie ones; wearing blue-light blocking glasses so that I can be on the computer or watch TV longer; getting a smartphone so that I could stay in touch with my friends and family when I was bedridden; using a shower stool when showering; finding apps that help make life easier--like using Voxer to chat with friends on our own energy timelines and sleep-wake schedules; and asking people to reach out in ways that are manageable if talking on the phone is too hard or emailing is too hard; showering at night instead of in the morning; creating a space that is pretty enough that you can stand looking at all four walls and the ceiling for days or weeks on end; getting a zero gravity chair so you can sit outside and lugging it to picnics, events or even concerts at our performing arts center; getting a handicapped sticker so you can go places more easily; using home delivery services for books from the library or accessing those of the Library for the Blind and Physically Handicapped. I've needed and done all of these (and a zillion--yes a zillion--more) things at various time throughout my illness.
Both our coping and our leisure involve being innovative, creative, patient and open to trying things that may seem quirky and crazy to 'normies'. Anything. ANYTHING that makes your life easier and more comfortable and easier to cope is of value.
Photos: Part of the Musser Gap area/trail. Soon to partly be used for luxury student housing and a park. :( Goodbye to one of my favorite vistas.
Blessings,
Emily
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