Welcome! If you are here from The Mighty, you may want to catch up on my story from the beginning, starting here.
This morning, on his way out the door to Oxford Circus, my husband asked me the loaded question: “What do you want for Christmas?”
I thought about it for about .005 seconds and replied, “No more pain.” I’ve suffered chronic pain for over three years now after a surgery that went awry. No one can tell me if it will ever go away; no one has a cure. My pain suddenly disappearing would be nothing short of a Christmas miracle. But it’s unrealistic. So I decided to expand my Christmas wish list.
I have all the stuff I need. No jewelry or gadgets under the tree for this girl. I’ve also got a loving husband who understands me and supports me, and two amazing daughters who will one day conquer the world. All I need are things that money can’t buy. But here they are anyway.
- No more pain.
- Okay, something more realistic: less pain. Especially in the mornings when I’m trying to get the kids off to school. Or at 3 in the morning, when I’m trying to sleep.
- How about just a short break from pain? Like a holiday? Just a short hiatus (preferably in the Caribbean) so I can remember what it’s like to feel normal.
- No more drugs.
- Or, more realistically, better drugs. Drugs that don’t make me sleepy, nauseated, grumpy or have weird bursts of energy at inopportune times (like at 3 in the morning, when I’m trying to sleep). Drugs that don’t make the pharmacist treat me like an addict.
- Pharmacists that don’t treat me like an addict. I have enough going on, thank you very much, to be given the third degree by a old crank in a white coat who doesn’t even know one tiny part of my story. I am not the drugs I take. I am a patient, just like anyone else. If I had a bald head and the distinct pallor of a chemo patient, would you treat me like this? Just because you can’t see my pain doesn’t make it any less real.
- More realistically (maybe?), a clone of me. The science is up to par in our grandly technological world, right? So let’s make a clone of me. One that doesn’t have pain and can toss her kids in the air, play soccer with them, cook amazing, healthy meals for breakfast, lunch and dinner and doesn’t tire. One that has the energy to talk through her day with her husband at 9pm instead of flopping into bed and watching Netflix. And can we make clone-Jenny’s hair a little less frizzy, please?
- Friends who understand what I’m going through. When I say “I’m in pain,” I don’t want a recap of the latest study on yoga reducing inflammation or how you have a great naturopath. I want to hear, “That sucks. That just really f-ing sucks, my friend.” I want a friend who will watch TV with me when I can’t bring myself to leave the couch. I want a friend who will understand when I cancel for the umpteenth time because I don’t feel well. I want that friend to stop by with chocolate chip cookies and tell me that everything will be okay. Even when everything goes pear-shaped and is far, far from okay.
- Chocolate chip cookies. Because they’re freaking delicious.
- A village, i.e. “it takes a village.” I live far away from my village—across the ocean, to be exact—and I haven’t found a new one yet. It’s really hard to create a village when you live thousands of miles from your nearest and dearest. I want someone I can call when I’m feeling like shit and need some help collecting the kids from school. Someone who can pop by, play a game with them and let me have a nap. Babysitters are great, but I miss my village. My people. My mom and dad, aunts and uncles, brother and cousins. The people who know you inside and out, backwards and forewords. I miss my best friend bringing me chocolate chip cookies and telling me everything will be okay. Even when it won’t.
- Chocolate chip cookies. Because you can never have enough.
- A doctor who can cure me.
- Except we live in the real world in 2015. So how about a doctor who doesn’t take one look at my file and say, “we’ve got to get you off these drugs”? Assume I’ve tried everything else (I have). The drugs get me through the day without curling into a ball of pain on the bathroom floor (and even with them it sometimes happens). Assume I need them—because I do—and don’t pressure me to get off of them. Because without pain killers, there would be pain. So. Much. Pain. If I could re-wire my brain I would. But I can’t. That’s where you come in, Doc. Help me through this. But don’t assume, like that cranky old pharmacist, that I’m a drug-seeker. Believe me, it’s the last thing I want to be taking. But here we are, Doc. You and me. Let’s figure this out together, with my input and yours, and figure out a plan that’s workable and doesn’t make anything worse.
- A do-over. Let’s wipe the slate clean, go back in time and take back the one surgery that made this all happen. Let’s borrow Dr. Who’s Tardis. That’s not too much to ask, is it Santa? David Tennant lives round the corner; I bet he has an extra we can borrow.
- My final wish is for no one to ever, ever have to deal with chronic illness. It’s a bitch. Someday we’ll get there, with science, with medicine, with miracles, with blood and tears and sweat. With whatever it takes.
But until then, I wish each and every one of you—the cancer patient, the special needs mom, the alcoholic trying desperately to stay sober—the gift of being seen. Seen for what you are, for who you are, and for all of your extraordinary strength. I see you. And I think you are doing a kick-ass job.
This story originally appeared on The Mighty.