Before I got sick I was independent, driven, proud of my physical strength, and anxious to be helpful and productive. Suddenly developing a chronic illness that got in the way of all these things was extremely humbling. It’s been more than a year and a half, and I still haven’t made much progress on figuring out who I am without them. This week, though, I received an emotional plea from my partner which has proved to be a big step in helping me come to terms with, and maybe even celebrate, the “new me.”
In trying to cope with my illness, I’ve been using up every bit of energy I have, every single day. Being chronically ill involves near-daily doctors appointments and endless mountains of paperwork. For me, it also involves a desperate desire to start moving towards normalcy. In particular, I’m fighting fiercely to prove to myself that I don’t have to permanently give up the work I felt strongly about, the independence I’d so valued, or the dream of children I’ve always longed to have.
There was something else I’ve been trying to prove, too: my value to other people. I have a boyfriend who has been with me for twice as long as I’ve been ill, and he moved in with me not long after my symptoms first appeared. Independence and cooperation were important values to both of us. We spoke of them often before we moved in together, and since we did I have been trying to carry my weight. To my endless disappointment, I’m usually unable to walk the dogs, do the dishes, wash the laundry, or complete many of the other day-to-day household chores that all couples have. Being unemployed also makes me unable to contribute equally to our expenses, and I’ve been scrounging, begging and borrowing to try to keep up my end of these responsibilities.
My boyfriend and I also have a large group of friends that I care a great deal for. We were all in the habit of staying up late, engineering and building big weird art, and generally helping each other have elaborate fun. Since getting sick, in addition to fighting to care for my health and working to get healthy enough to achieve my dreams, I’ve also been obsessed with showing my friends and loved ones that I could still be useful in the kinds of activities we historically enjoyed together.
The truth, though, is that most of the time these days, I’m just a lump. All of the physical struggling and striving I do happens during my sporadic “good” days (or hours or minutes). When I do have energy I am spending it ruthlessly to keep up, and when I overdo it I pay a massive price in additional pain and exhaustion. The result is that, for a year and a half, I’ve basically been a zombie. It turns out there has been something really, deeply important that this zombie self has been failing to notice.
If you’ve read any other post on this blog, or know us personally, you’ll have gathered that I’m a pretty big fan of my boyfriend. He shows endless support, and he is “all in” in the fight against my illness. He offers, insists, and sometimes begs to help me any way he can. He calls himself my “Krang Body” and hopes that I’ll speak up whenever there’s some physical thing that he could do for me that would give me a break. He has also offered financial support so that we can keep living in our apartment while I battle an insurance company to get my disability claim approved.
Things have been strained between us lately though, and the past month was brutal. He’s had the stress of the holidays and a high-pressure work deadline, all added to the every day stress of caretaking the shell of his former partner. It finally began to wear him down. We spent most of our time together oscillating between being annoyed with each other and “processing” issues to death.
It came to a head a few nights ago. After hours of arguing in circles, he broke down. His body kind of collapsed onto the bed he was making for us, and tears came to his eyes. He told me he was miserable. I froze helplessly, waiting for him to continue, and having no idea what was coming next. It was awful. But from that place of vulnerability, something wonderful came through. I was finally able to hear and understand something he’d been trying to communicate for over a year: all of the caretaking he’s been doing for me will only be worth it if it lets me save enough energy to be myself again.
It’s no wonder I’ve been missing his point; like I say, I’ve been a zombie. Non-restorative sleep, chronic fatigue, migraine pain, fibromyalgia, and the narcotic pain relievers I take so that all that can be bearable give me a very foggy brain at the best of times. But even with all that, I might have understood him any of the other thousand little times he’s tried to say the same thing. It’s just, I couldn’t because I’ve been too busy feeling guilty and embarrassed by my inability to take care of myself, him, our apartment, our pups, or our finances.
He helped me realize something vitally important that I’d been missing all along. Just being me helps him, and helps our friends and our extended community. What makes me important to other people isn’t how independent I am, how little help I need, or how many things I can physically do to help others. He doesn’t care whether I can keep the house well, or bring in a sizable income. What he wants most from me is the personality that I’ve been blunting and muting and burying beneath the surface, by letting myself be consumed by my quest to prove that I still have worth.
While I’ve been striving to minimize the burden I place on him, he’s been desperate, lonely and sad, hoping that some day I’ll come back to him and spend time with him as the person I used to be, who he knows I still am deep down and can be again.
So here’s the revelation. Putting all of the little energy I have entirely into self-maintenance, self-improvement, and work to prove myself not only took a great toll on me, but was missing the point as well. This isn’t just about being a better friend or a better partner. It’s about being someone it’s worth it to me to be, and a zombie isn’t that. I deserve to do more than just survive. I deserve to live and to enjoy it. That fact that it will make knowing me more satisfying to everyone around me is just gravy.
So what now? In the past few days, I’ve finally let myself prioritize finding things that make me happy. I’ve stopped fearing that I’ll be caught spending my limited energy and money on such frivolous pursuits, even though it might mean there’s even less I can contribute to maintaining my household. I understand that if I’m going to get through this illness with my spirit intact, I’m going to need to graciously accept the gift I’ve been given. I’ve been given free rein to do whatever it takes to find myself, and that’s scary, but probably the most generous and valuable thing another person could have given me right now.
2 thoughts on “The Best Thing a Loved One Has Done For Me Since I Got Sick”
I’m really glad that you’re keeping this blog. It’s helping me understand what you’re going through. Sending you much love.
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