I usually get sick after a trip but when we returned from Kauai it was Jason who got sick. I was in pain but other than that I was feeling ok and a bit cocky that sickness skipped me…except it didn’t. A week after Jason got sick I got a cold.
As a kid I rarely got sick. Besides the first year of life on this planet being clouded by multiple illnesses in the orphanage, unrelated to my current condition, I grew up fairly healthy. My mother would brag that I never got sick or got colds, she saw this fact as a personal pat on the back. But as my GNE Myopathy condition progresses, becoming sick is more common. I’m a textbook over-doer in just about everything I do with high standards of quality no matter how weak my body gets. And while I’m much better at not over planning my trips and over working myself, I still get sick and stay stick for awhile after big events. My immune system feels more delicate which is a roadblock for someone who doesn’t like to slowly move.
We returned home from Kauai to two broken cars and both of us getting sick. This is a setback for a normal couple but for us it can be a logistical nightmare. I don’t drive so Jason bears the brunt of handling physical tasks like driving cars to a garage. Arranging rides back home, to rentals or work can be a scheduling Olympic sport of its own, especially when you have to take the same car back to the garage three times in one week because they didn’t repair it correctly.
In our relationship we compliment each other well when it comes to these things. We each have something to bring to the table and I do what I can to take the load off of Jason. Jason is the patient muscle, handling all the physical tasks and such and I help out by being the organized mental planner who handles the finances, investments, research, scheduling, planning, negotiating, organizing, quality control and "telling off" businesses who “got it wrong”. We don’t really fight in this arena because we each have a purpose and trust each other’s efforts.
We survived a week of sickness with boxed and carryout soups, but last weekend I got sick of it (pun intended) and made a huge pot of homemade “chicken” noodle soup (vegetable bean noodle soup).
For anyone who knows me they know soup is my all time favorite. Jason laughs at me because I almost always order soup when we go out. Growing up as a Korean adoptee I didn’t know that half of Korea’s cuisine identity is soup, chigaes (stews) and pickled vegetables. When I realized this I kind of laughed since I grew up obsessed with soup and anything pickled. I’ve since taught myself how to make most Korean soups and stews.
When I began this new website I transported all my old blog posts from my old site to this site. I reread some the old posts and realized I didn’t know how much I talked about my love for cooking, cooking projects and how the act stirred memories of my grandma and mom.
Soup is a big part of my childhood memories. There was ALWAYS the smell of soup in our house. My grandmother was the main cook in their house but it was my grandfather who cooked pots of soups and was good at it. When my mother came to America from Australia to marry my father, my grandfather taught her how to make soup and then she taught me. I’ve been cooking and baking since I was 10 years old at least.
Now, to me soup is one of the easiest things to cook from scratch. But today soup is the hardest thing to eat and cooking is well…I can feel it coming to an end.
I can still eat by myself but I'm at a stage where I have to strategize what I order at a restaurant. Soup is one of the harder foods to eat when you begin losing finger dexterity, range of motion and hand strength. Different variables affect whether I'll choose soup from the menu or not, which is always hard in Korean or Vietnamese restaurants because I inherently want soup. Factors that play into my decision-making include how high the table is (I need height to rest my elbows on a table to get the spoon to my mouth without raising my arm), how tired I am and am I in the mood to deal with the juggling ordeal of eating soup?
I’ve always cooked but my cooking really took off when, on a whim, I moved to California in 2007 to look for design opportunities. My former classmate Jason, who is now my husband, and his best friend/classmate Imran, offered me a place to stay while I job searched. At the time I didn’t have much money and had a fresh college debt to pay off. Jason and Imran wouldn’t take any money so I started buying groceries and cooking for these two bachelors, welcoming them home after work with home-cooked food. Soon, with my gimpy legs, I began hosting and cooking at least a couple dinner parties per month for their friends. I didn’t really have anyone else in California, without them I may have ended up in a ditch with my cane in hand; so cooking was my way of showing love and gratitude for housing me.
(Below are some of my cooking pictures throughout my California years).
Big cooking became a part of my California identity and I loved cooking for friends and family. Childhood holidays are a big part of my memory bank. My mother and grandmother were always in the kitchen whipping up far too much food for visitors would stop by throughout the holidays.
I knew this is what I wanted for my future home.
For a good chunk of years I hosted California Thanksgivings and holidays for friends, family and even people who had nowhere to go during the holidays. We used to cook an incredible amount of food and for holidays would do all the cooking ourselves, sometimes cooking over 10 side dishes, the bird and dessert…all with a gimpy leg, because I’m crazy. But I loved everything about it - the cooking, hosting and gathering.
Six years ago, another family member wanted to take the holidays and even though it was sad I still brought many homemade side dishes and even the entire turkey a couple years but it wasn’t the same as hosting. In the back of my mind I was counting down the years I had left to cook and worried my holiday hosting opportunities were slowly diminishing. With a progressive condition nothing is forever including your abilities. This year I finally get the holidays back but there’s not much left of me to cook in the same capacity and that makes me sad. I knew this day was coming.
Today, I don’t cook with the same intensity. I can’t. Through the years, Jason’s role as sous chef has grown and even though cooking is not innate nor his passion, he, per usual, assists my passions. But there is a point where I can no longer say it’s me that is behind the cooking and while cooking isn’t just the physical task but also understanding of recipes, proportions, organization, quality control and technique, there will be a time in the very near future when I will hang my apron for good.
I could tell Jason each step, which is a lot of what we are doing now, but it isn’t the same. Today, I still cut all the vegetables but ever so slowly. I don’t cook as often either. Together we normally make some boring protein and vegetable for the entire week so Jason doesn’t have to worry about it during the week, but in general I try to spare Jason huge inspiring cooking projects like my former days.
We decided to make this short video to show how weak my fingers have got. After we finished cooking I watched the video clips and spontaneously wept. I hated watching my fingers like this.
“I’m getting good at saying goodbye”, I said to myself.
Here is a short video of us making the soup. I merged the clips to Sixto Rodriguez's song "I Think of You" (ironically) because that was the record I was listening to while cooking. Rodriguez is a 70s Detroit singer-songwriter "nobody" who unbeknownst to him became a legend in South Africa, and his record was the anti-apartheid anthem in their revolution against their government. The documentary on his life, Sugar Man was very good, check it out.
Please, don’t be alarmed when you watch the cooking video. The perspective makes it look like I’m going to cut off my fingers but I assure you I know my fingers well and how to compensate when cutting. And if I ask you over for dinner, please don’t decline because you worry it’s too much for me. Allow me to enjoy showing love through food just a little while longer. Jason and I have been doing more potluck parties, which also are fun and takes the strain off.
My cooking set up for the past couple years this single burner induction cook top sitting on top of an old Midcentury cart. I usually rest my arm on the counter above it since I don't have the shoulder strength to hold my arm up. But for the soup my pot was too tall for this set up so we set a gas burner on a chair so I could use my kitchen table to comfortably assist my arm movement.
Cooking is no longer my identity so I’ll move onto the next thing. As much as I’ll miss cooking when it’s finally pried from my lifeless fingers, I know I’ve been given allotments of time with each of my loves and when that love dies I’ll move to the next stage of my life...my next “it” thing, my next interest or love.
It’s sad but I’m surprised I’m not sadder. In a strange way I see it as an opportunity to explore one of my many other interests. I tend to get hyper focused on one thing and one thing for a very long time until I know it inside and out, but then end up looking in other areas to expand my mind when I get "bored". Not that I could ever be bored with cooking. Cooking was like driving, very solitude and therapeutic. But this reaction is kind of like my reaction to not having a baby. I'm surprised that reality wasn't much harder, too. I guess I have other considerable concerns to worry about like am I going to need a neck brace in the future like other very progressed GNE Myopathy patients?
I’m getting used to letting go. It doesn’t mean I don’t want it as badly, it just means I know when to quit. The reality won’t change for me so I have to learn to change for it. Removing my ego and any entitlement helps me to cope, though it's still difficult.
I guess I’m beginning to truly understand life’s one promise, and that is everything is severely temporary.
This is life, after all.
I heard writers and artists shouldn't get too attached to their work because when you’re too attached your perspective becomes distorted and then you’re no longer adaptable because your emotions and ego are involved. You’re so attached to the precious extension of yourself that loss or denial of it is that much harder. I see this as true for everyday things. I am forced to be aware that it may no longer be there.
Huffington Post recently did a story on me and in it they quote me saying, “GNEM feels like a dear loved one has died over and over again”. It feels this way. I've had this progressive muscle condition since 2000 but saying goodbye to another piece of myself never gets old. Loss is difficult but when you love and are good at it it makes it that much harder. I’m not given authority or consulted over what is taken from me, but I’ve also found when one peg gets shot down, almost in equal strength another one pops up.
My husband always says I’m the most adaptable person he’s ever met with a thousand interests. I easily could have chosen between a dozen different careers. Adaptability has greatly helped me through this GNEM storm and I know there is a lot about me still unearthed. And while I deeply lament the loss of who I am or who I was, I also look forward to seeing what else I will do to replace the lost.
We have so much ego and expectation, we’re very selfish, entitled and self-involved but these things, like our bodies, are not ours. Our body is designed to be temporary, it's just some get to live as they want longer than others. But things are designed to fail or as I prefer to say change. This is how life works, the more we understand this the more equipped we are to deal with the bad...at least for me.
There's not much else I can say. Any other answer would cause me to disappear in some anonymous abyss so I have to think this way; otherwise every struggle would be an impossible summit.