A photo journal comprised of my thoughts on motherhood and other life happenings, as well as some of professional work as a photographer. Southern California is home.
I have a running list of things I want to do when I’m feeling better… you know, when my limitations don’t feel so limiting and when my endurance allows me to get through a day without having to rest. The list includes things like day adventures, restaurants I want to try, and places I want to take the boys. Also on that list is the Rose Bowl flea market. We used to go to the Rose Bowl every other month or so and it was not but a few weeks ago that returning and fighting the crowds and having the endurance to make it through the maze of aisles sounded unbearable. But something has happened within the last week or so and I, quick-knock-on-wood, feel closer to normal than I have thus far in my recovery.
I had my three month post-op check-up with surgeon and have since weaned myself off my brace almost entirely. When I do start lifting the kids, I’ll need to wear it, but I’m not allowed to do that just yet so my back brace sits discarded on a chair in the office. It used to sit right by the side of my bed, right next to my slippers. Before, when I didn’t wear it, I’d have this sick and uneasy feeling in my stomach. But since weaning off of it, that feeling has disappeared. I’ve been off all my pain meds for a few weeks now and am finally allowed to take Advil, which I think would have been beneficial long ago (because the fusion works through an inflammatory process, I wasn’t able to take any anti-inflammatory medication). It was nice when my surgeon asked me if I needed a prescription for anything and I answered, “no”. I considered writing an entire post on my experience with pain medication but decided I’ll leave it at this: feeling normal is way underrated.
In any event, we made it to the Rose Bowl and I left questioning if that means I’m actually on the mend. I mean I didn’t anticipate crossing anything off that list I had made for some time. We didn’t stay as long as we normally would and we did take advantage of handicapped parking and we got only what we came for but, ya know, baby steps. On the way home, I was still feeling good so we stopped at what has become our favorite pizza joint in LA. It was our third day eating pizza for lunch in a row (we brought pizza home after our first visit). I had the pesto pizza with the ricotta cheese and it was as good as the first time. If you’re in the LA area, do yourself a favor and check out Vito’s Pizza.
Feels so good to be feelin’ good again, let me tell ya.
Life rarely goes according to plan. It’s funny because growing up you hear all kinds of advice about making goals and putting together visions of where you find yourself in five years. I’m not opposed, per say. It’s nice to try to keep the train on the tracks and envision what moving forward looks like.
But life doesn’t always move forward, nor is the shrubbery that is the path always beat down and wilted well enough for you to even see where you’re going.
And so, I’ve come to learn that those who are the strongest are those that learn to adapt the fastest.
We all reminisce of our childhood, where presumably we were all cared for and fed and given valued guidance and love along the way. And then, when you become an adult, you celebrate the fact you can care for yourself. I’ve always valued my independence and am in no way blind to the ways my parents raised me to appreciate such.
This road to recovery has a lot of the aforementioned shrubbery. It’s hard to know if you’re even on the path, and thus, I’ve had to learn to adapt. Everyday I dig deep to hold on to a perspective that I believe in; you know, the whole glass half full perspective? And, for me, it’s a challenge.
For my children, on the other hand, adapting seems to be their second nature. No matter who walks in the door to care for them, they welcome them with open arms. I know my children are too young to know my struggles, but I’ve thanked them a million times over for their ability to adapt and adjust and allow others to do for them what I felt only I knew how to.
It’s an eye opening experience to relinquish control and allow others to do your job in the absence of any training. What I’ve learned is that it all gets done and no one dies.
There were days I was stuck in bed overhearing others trying to find Hooper’s blanket when I knew where it was. Or days I heard others trying to figure out what Van was pulling at their leg for and, without even being in the room, I knew what it was he wanted. And, you know what? It didn’t matter. They figured it out. My children are not books written in a language only a mother can read. And that truth has been very humbling.
Rolling with the punches. Adjusting. Being humbled time and time again. Hashtag: things words cannot express my gratitude for.
It’s funny how life works sometimes. The day before I passed out cold and Willy saved me from falling head first into the bathroom wall, we had a rare and wonderful date. In hindsight, it matched in beauty to what the evening matched in misery.
We started the day at The Penthouse in Santa Monica. I had the Belgium waffle with fresh squeezed orange juice and it was delightful. We drove around Santa Monica a bit before heading over to Venice, where we sat and people watched. Then we stopped at The Daily Pint known for all the rare whiskeys they carry. Willy got a glass that came out to roughly $6 per sip (I made him count). It’s not something he splurges on often, so it was nice to watch him enjoy it. And enjoy it, he did. We drove along the PCH on the way home and watched as the sun set. It was beautiful.
Then I came home, didn’t feel like eating dinner and spent the rest of the night on the toilet with a bucket on my lap. It all ended with an ambulance ride to the hospital and an overnight stay where I received a total of seven liters of IV fluids.
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.
I have a running list of things I want to do when I’m feeling better… you know, when my limitations don’t feel so limiting and when my endurance allows me to get through a day without having to rest. The list includes things like day adventures, restaurants I want to try, and places I want to take the boys. Also on that list is the Rose Bowl flea market. We used to go to the Rose Bowl every other month or so and it was not but a few weeks ago that returning and fighting the crowds and having the endurance to make it through the maze of aisles sounded unbearable. But something has happened within the last week or so and I, quick-knock-on-wood, feel closer to normal than I have thus far in my recovery.
