Living Deliberately

I get asked a lot about how my recovery is going and I never know quite what to say. Like most things in life, there are good days and there are bad days but dumbing it down to that cliche doesn’t speak to the actual experience of recovery.
And then I came across “The Spoon Theory”.
The Spoon Theory was written by someone who has Lupus. The girl gives her friend a bouquet of spoons and has her talk her through her typical day. Each daily task comes at the cost of one of the spoons; taking a shower, for example, makes one spoon drop from the bouquet. And one by one, as the friend accounts for each event in her typical day, a spoon disappears.
You see, when you’re healthy the possibilities seem limitless. Never before have I looked at taking a shower as a task as opposed to a privilege.
Recovery has changed that for me.
Living daily life with a disability forces you to live very deliberately. Almost every decision is a calculated one and my reason for choosing one thing over another depends greatly on my pain and / or limitations. When I shower, for example, depends on when I’ve given myself my daily neck treatment (I have an ultrasound machine at home I use to massage heat into the sore tissues in my neck). The gel gets all over my hair, so when getting ready, it’s something I have to take into account. I also have to take into account when I took my pain medication last (the heat from the shower will make me pass out if it’s too close to the time I took my pain medication). And I thought getting out the door with two kids was hard…
For a long time, I had difficulty raising my arms up over my head. Washing my own hair just about used up all the spoons I had. Blow drying my hair was / is nearly out of the question. Today I’ve gained mobility back in my arms but due to my bending restrictions I am still unable to properly blow dry my hair.
And so, caring for myself – and, in turn, feeling good about myself – has been a challenge. It feels like it’s been years since I’ve had the freedom to wear whatever I want. In 09′ I was pregnant, in 10′ I was breastfeeding, then in 11′ pregnant again, then in 12′ breastfeeding again, and then surgery in 13′. I’ve resorted to leggings, slip ons, and an oversized cardigan I can fit over my back brace.
Recovery has made me let go.
Would you believe I bought Crest White Stripes for the sole purpose of feeling like I’m doing something to help my appearance?  
I digress. Back to living deliberately.
I went to run a couple errands by myself the other day. Sounds like normal life, right? It was during one of my I’m-feeling-better waves so I always take advantage and usually do more than I should; I dip into tomorrow’s cluster of spoons, if you will.
When I get into my car, I watch how far I open my door. If I swing it all the way open, once I’m inside sitting in my seat, I’ll be unable to lean over and close it. I keep the door just barely cracked and squeeze in so I can close it on the third rock: rock it back and forth once, twice, and with a third rock, I get my door closed.
I drive an SUV because I’m a mom in Southern California. The gear shift is up by the wheel and I dread putting it in reverse. As soon as I do so, my scapula on my right side feels funny and I immediately start wondering if driving is something I should be doing. I remind myself of the PDF my surgeon gave me and I try to picture the word “driving” with the words “one month post op” next to it. I’m three months post-op and I remind myself it’s okay.
I drive and listen to music. Nirvana comes on and I turn it up loud. It feels like forever since I’ve been alone. Between having family by my side or, more recently, the nanny we had to hire to come in to help, the days when I could simply get away and be with my own thoughts feel like long ago.
I want to go shopping for shoes. It’s been ages since I’ve been able to try any clothes on (just getting dressed once a day costs me a spoon) and a pair of moccasins I had prior to surgery somehow mysteriously disappeared. I pull into the shopping center to discover the store has moved.
I put the car back in reverse and I get that weird feeling in my right scapula again. I go through the same imagery as I did before, “Driving – – – one month”. I feel the weight of the chip on my shoulder as I drive out of the parking lot having stopped but not having crossed a single errand off my list.
I head to CVS to return some medicine we had bought for Hooper only to get home and find that the bottle had already been opened. I crack the door open and do my typical slide down off the seat and I close the door using my whole body. Because I’m not a fan of potentially poisoning my son or of spending twelve bucks on something we never used, I wait in line to return it. They give me cash back and I immediately remember I had wanted to pick up some hair gel and bobby pins too. I make my way to the hair aisle and as I near the gels I can feel the muscles in my neck starting to tighten. I glance back at the line of three people behind the only open register and I leave without hair gel or bobby pins for fear my time is limited. It was going to cost me an extra spoon.
I get back in my beast of a car and rock the door three times before closing it. I put the car in reverse and confirm that, indeed, my neck is sore.
I make it to the shoe store I had originally intended to go to. I slide down off my seat and close the door, again, with my whole body.
I walk into the store with my purse hanging from my shoulder. It’s the first time in three months I’ve dared to let it actually hang from my shoulder as opposed to caring it under my arm like a clutch. With the soreness creeping in, I immediately start cursing myself for the extra little things in there that I don’t need: the raisins that are starting to feel like rocks, the two pairs of sunglasses that are starting to feel like their actually sitting on someone’s face… someone’s face whose head is in my bag.
I scan a couple aisles of shoes. I try on some slip ons. I try to pretend that I’m normal as I turn left and then right in front of the mirror, carefully checking myself out like I used to. I see another pair I like and I curse my size for being the box on the very bottom, other sizes that are as useful as peanut butter to a kid with a peanut allergy stacked high on top of it. I carefully maneuver it out and try to ignore my urge to reach up and stop the box on top from falling. I’ve learned it’s not worth the pain later and better to let the damn box fall. This has bled into watching my kids jump on the sofa. I sit as far away as I can with my fingers crossed because I know they’ll shoulder the tumble better than if I were to sit there and try to break their fall.
I decide it’s time to go despite the fact I have not made it down all the aisles I’ve wanted nor have I tried on all I was interested in. I decide the shoes and boots that require any lacing up or buckling can be saved for another day, another spoon. I walk toward the exit where I see an older woman and her even older mother coming toward the entrance. We’re going to meet at the door at approximately the same time and I’m hoping they’ll get the door for me. Those pesky big, heavy doors are my nemesis. I can see by the look on their faces, however, that I am expected to be the doorman; I am young and deceivingly hearty. And so I get the door for them, awkwardly pushing it open with my whole body as my feet kinda shuffle under me. I try my best to hold it for the duration it takes for her to get her walker through the door. I watch as the door just misses clipping her ankle. I don’t feel bad, rather, I feel pissed. I just used another spoon and I didn’t even get anything out of it for myself. Pain can you make selfish.
Rock one, rock two, rock three, and I shut the door and start the car. I have one stop left.
I walk into the bank and am pleased to see there is no line. It feels like karma is back in my corner. I make my way to the teller, tell him what I want to do, and he asks for my ID. I flip open my wallet and when it’s not where it usually is I remember that Willy had taken it when the paramedics came to take me to the hospital the week prior.
He tells me he’s going on his break and I sit down in the chair and wait for Willy to bring me my ID. I’m fighting feelings of anger toward Willy for having not put my license back in my wallet and as I feel those negative emotions come over me as I sit and wait and wait, it dawns on me that that’s not me, it’s my pain, and it’s trying to take me down, trying to take me over. I would never blame my husband – my best friend – for having my license after saving me from falling after I completely lost consciousness and getting me to the hospital. My pain, on the other hand, has no friends. No loved ones. No family. My pain could give a shit about what’s fair or right or humane. My pain is an asshole; it preys on my patience, it preys on my otherwise fun-loving spirit.
Willy calls me to tell me he’s in the parking lot and I’m immediately pissed off that he expects me to get off my ass and meet him there to get my license. He says something sweet and cute but I truthfully don’t even hear him. My pain has made it so his words fall on deaf ears, his smile on blind eyes. I start to say something snappy but I catch myself and hobble back toward the bank, back through the heavy double doors. There is a short line now and I wait.
Recovery has changed me. I hope I will never be the same. These days, I live deliberately and I hope that when life does return to normal that I can remember these burdens, these pains. Normal, healthy people don’t know how good they have it.
Everyday we all make choices. For the healthy, these choices are made more unconsciously but for the disabled, all decisions are conscious decisions. When you have pain or limitations, you’re constantly having to assess the gas in your tank. If you run on fumes you have to deal with the fear your car may break down the next day, or worse yet, the reality your car won’t start the next time you get in it.
I find myself feeling constantly torn between having feelings of gratitude for having a nanny to help with the boys, the laundry, and the dishes and feelings of frustration that I cannot care for my own home independently; that I have to rely on someone else, always. It doesn’t feel so wonderful when it’s not a choice. Offer me a nanny when I’m fully capable but feeling lazy and you’ll probably see me beaming from ear to ear. But take away my ability to do things on my own and suddenly all I want is the freedom associated with independence.
Like many other with disabilities, pain, and / or limitations, I hate having to stay behind. I’ve missed birthday parties, days at the beach, gatherings at wine bars, day trips. Like The Spoon Theory states, having an illness or disability is – in itself – a lifestyle. It’s hard when you are your own dead weight.
I know I am not alone. The author of the spoon theory has Lupus. I’m recovering from major spinal surgery. But even motherhood is a disability in some sense, isn’t it? I mean when you have small children, you too must slow down, strategize, skip aisles of shoes and leave without trying on all the shoes you wanted to. For me, this was one of the biggest adjustments of becoming a mother; the realization that your life is no longer yours. So I guess we’re all in it together to some extent. We all have our handicaps.
When the pain subsides, I return to me and I see things for what they are. I’ve always prided myself for my ability to keep things in perspective; all the more reason I hate my pain for infiltrating my good attitude, for cracking my code so damn easily.
Health is such a gift. I hope I never lose sight of that.
I snapped these pics the other day standing in the same position; looking left, ahead, right, and down. I think it’s fitting to pair with this post because really, any situation can be seen many different ways. Recovery is not only a curse, there have been many blessings too.

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12 Responses

  • This is an AMAZING post. It should be published somewhere so all people living with pain (and even healthy people) can read it. The details are astonishing and they really help bring some perspective to what you’re going through. All of us should thank our lucky stars for health. I keep having these dreams that I’m diagnosed with cancer and when I wake up, I’m sad and then immediately overjoyed and grateful that I’m healthy as can be. It’s something to be cherished. As you know, I’m running my half marathon next month and, though I’ve never been a runner, I’m really loving the experience of seeing what my body can do for me. I think of all the people in my life who would LOVE to be able to run, but can’t for different reasons. The body is an amazing thing. Yours has been through the ringer. Thankfully, you have decades to thank it and be kind to it and love it. You will return to a normal and, magically, you’ll start to forget about how you had to rock back and forth to close the door…

    • I agree with Kim—this is a must read for anyone. Beautifully written. Thanks for making me step back, slow down and appreciate.

  • As soon as you are feeling up to traveling, come out to Arizona and we can leave the kiddos with the Dads or Grandparents and look for some more moccasins! Hang in there! You have come a very long way!!! LOVE YOU, ASHLEY!!!

  • GIRL – this post was fantastic, and truly one of the most honest accounts I have ever read by someone recovering from major back/scoliosis surgery. Thank you for writing it, and sharing your recovery.

  • we learned of the spoon theory a little less than a year ago. my sister had recently been diagnosed with Addisons disease (her adrenal glands no longer function and is steroid dependent now for life) after a stay in critical care as her body was failing itself. now that she is recovered and stable, she has spent a lot of time searching for answers and understanding of why this has happened to her and how she can cope. the spoon theory has made her realize that its OK to slow down, to live more deliberately.

    blessings to you and best wishes.

  • This is very powerful!
    I am forwarding this piece to my friends and family, as I think we can all learn something from it.
    You are a very gifted writer, thank you so much for sharing your story.
    I wish you peace during your recovery.

  • Both my sisters suffer from Lupus so I’ve read that story before and it really helped me to understand what it must be like to live with something like that, even when it appears invisible to someone else.

    The way you have written about your recovery is pretty special and inspiring and I couldn’t even imagine going through it myself and keeping it together like you have. I really hope your recovery is quick and you can get back more and more of your independence.

    Best wishes friend!

  • I can’t say anything that people above haven’t already said, but I agree with it all. You are a captivating writer, and this piece brought tears to my eyes. Thank you for your honesty.

  • Wow! I agree with everyone. This post was both powerful and amazing! Very well written. Thank you for sharing your story. I hope you continue to recover and regain your independence back quickly! Take care!

  • Love your blog, Ashley and really glad to hear that you’re well on the road to recovery from what has clearly been a huge ordeal. But like you say, it has changed your view on life and for the better. You’ll be chasing those beautiful boys round again before you know it.

    From one mama to another, you’re doing amazing x

  • Thankyou for sharing, I had no idea. Its only when your health is no what it should be that we feel drawn to others in the same situation. Its hard to understand unless you go through it. Im heading off soon for an abdominal ultrasound, praying that its not serious. I want to be happy and healthy for as long as possible. Maybe I do realise the importance of life, and to look after our bodies. I just want to see my babies grow up. Thankyou. Thankyou for being so honest, I know it cant be easy. Health is definitely high up there in gods gifts xx

    • Health is just a gift and unfortunatley we don’t appreciate it enough until it is compromised in some way. I’m sorry to hear that you too are experiencing health issues. I hope all goes well with your ultrasound. I’ll keep you in my thoughts.


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