Life with More Spoons

My sweet friend Teresa has stopped asking me if I have enough spoons to hang out with her. With my health stabilizing, appointments fewer and farther between, and my oxygen saturation at a steady 100 percent, I have a lot more spoons to work with. If you’re sitting there wondering whether heart-lung transplants come with a surplus of cutlery, let me explain The Spoon Theory.

Christine Miserandino originally coined the metaphor to explain what it felt like to live with lupus. At a diner with a friend, she used spoons to quantify the total supply of energy she had between rests, and the amount of energy (number of spoons) needed to perform daily tasks like getting out of bed and taking a shower. Borrowing from nearby tables, Christine gave her friend a bouquet of spoons and had her friend list the activities she did in a day, taking one or two spoons away for each. To her friend’s dismay, her bouquet quickly dwindled.

Spoons were a useful symbol for me to explain my limitations to friends and family. When I had pulmonary arterial hypertension (PH), I was tired from the moment I rolled out of bed at 10 a.m., tearing my oxygen cannula from my nose, and heading to the bathroom for my first round of diarrhea for the day. I almost never made my bed because all the reaching and tugging involved was exceptionally depleting. After cooking a meal, I would struggle to clean the dishes I had used, creating tension with roommates. Thinking about each activity in terms of the number of spoons it required helped me budget my energy with more intention.

Since my transplant, I’ve gained an appreciation for how hard my life was with PH. Everything is easier now, and I feel kind of guilty because many of my friends (and readers) continue to battle health issues. It’s impossible as a healthy person to fully understand life with PH, but I battled the disease for 23 years, and now I’m learning what life is like with a healthy heart and lungs — what it feels like not to use all my spoons in a day.

The cashiers at my local supermarket tease me because I come in a few times a day to purchase one or two items. I can go to the store as many times as I like without experiencing fatigue. It’s a privilege not to have to plan as much of my life in advance.

More than a year with my new heart and lungs, I still budget an inordinate amount of time for certain activities, like showering, which used to take at least half an hour with a sterile bandage change. My mind has not quite caught up with my healthy body, and I surprise myself when I’m able to exercise, do household chores, and work on my photography business all in one day.

Experiencing life with more spoons, if you will continue to indulge this metaphor, has made me fearful I will lose them again. I’m protective of my newfound health to the point of paranoia. I feel I cannot delay any of my goals, and that I owe my energy to those who have less.

In high school, Teresa waited patiently for me to catch my breath every few minutes while I attempted to hike with a group of friends. After college, she’d understand when I didn’t have enough spoons to meet her at a bar. Last month, we went hiking after I had spent the morning rock climbing. This time she didn’t have to wait for me — I even carried her water bottle. With ample spoons left, we went to dinner, and I drove her home. My therapist tries to tell me that just because I can do more now, doesn’t mean I have to or can do everything. I’ll let you know when I figure out how to slow down.

Kathleen and Teresa at Mount Tamalpais State Park. Yes, those are supposed to be spoons in my backpack. (Photo by Amar Dhaliwal. Shoddy Photoshop edits by Kathleen Sheffer.)

Though I’m afraid my health might decline again, and transplantation comes with myriad risks and unknowns, every day I accomplish more than I ever imagined doing when I had PH, and even find myself with extra spoons to spend doing silly things like brushing my dog’s teeth before bed!

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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.