The holidays are supposed to be a joyful time of the year. For those of us with Gastroparesis, or paralysis of the stomach, it can be a difficult time as families gather to eat meals. When you cant physically eat, the holidays can feel really isolating. My GP diagnosis actually happened on Thanksgiving day, 2015. Here's the story:
To say that 2015 was a mess in the life of Jasmine is the understatement of the decade.
On the Thanksgiving of 2015, my life would change forever. It was a day that I both laughed and cried harder than I had ever before, and a day that I would learn a valuable life lesson from a sweet potato casserole.
Let’s back it up. At the end of 2014, my health rapidly crashed, and the beginning of 2015 was the beginning of three difficult years to follow. The first half of 2015 was a massive health decline leading to my DBS in June, and then I went back to my senior year of college.
At one point, in the early years of college, my gut operated pretty well, I ate normally. I have always been lanky and tall, at 5'8 I was a healthy 130 lbs, wearing a woman's 0-2. I remember even seeing some of the girls who were even thinner than I was, and being so frustrated by the fact that due to my disease I couldn't actually go to the gym and work out like the other girls. Even though I knew that my weight and lifestyle were healthy, I still found myself wanting to be like a photo-shopped model on the cover of a magazine. Silly isn't it, looking back? Just a few years later i would be praying to gain weight. I wish I had been better than at respecting and loving my body for /what it was.
That is why when I lost my appetite at 18 I didn't really complain. My docs all just thought it was a side effect of my meds. I would find myself laying in bed at night realizing that I had only had a smoothie that entire day.
I would set an alarm to remind myself to eat during the day because I had no hunger pangs, and being a work-a-holic, if I didn't set the alarms I would forget that I had to eat to survive.
I remember the first time I had a significant flare of Gastroparesis. Chronic illness 'firsts' have a way of sticking with you and haunting you for the rest of your life.
During the Christmas season of 2014, Marisa, one of my best friends from high school, came with my family to our yearly tradition of going to The Grove, a mall here in Los Angeles that has a silly yet super fun yearly 'snow fall' during December. It is basically soap bubbles that fall from machines on top of the buildings every hour in the evenings. No, it does not feel like snow, but it looks like snow, and so its just fun and silly for a bunch of Southern Californian's who only get to dream of a "white Christmas" to get to take a few fun photos. We started doing it towards the end of my teen years and we stuck with it, it was a fun way to have time together as a family as I went off to college when I came back for the holidays.
My love of food is one of the most ironic and cruel things about having Gastroparesis.
That is just one of the things that I look back on and think to myself that maybe my life is just a sitcom someone is getting a real kick out of. Maybe the writers ran out of good ideas so they are just doing crazy things because they can’t kill me off. The crazy adventures of the tragically flawed yet lovable dying girl are far more interesting than a dead one.
Marisa and I have been close friends since we were 14 years old and met as freshman. We have grown and changed so much since we met back in ’08, but our friendship has grown with us instead of grown apart. I am lucky to have a few amazing high school friends who to this day are still my sisters. Below are a few pictures of my high school best friends Marisa and Danielle and I then and now, its pretty amazing how much we have grown, and yet every time we see each other its like no time has passed.
I was a SUPER picky eater as a kid. I mean crazy picky eater. A lot of it had to do with textures, which is still something I struggle with, but my love for flavor overruled it. For example, lettuce’s texture makes me throw up, completely unrelated to my stomach issues. I also get some real serious anxiety when food which I cannot associate together in my mind touches, that is all I can think about is the fact that the foods are touching, that their flavors are combining in ways that I dislike, and I just cant eat it. I will eat around it, but I will give it a pretty wide margin. My family has always thought that was hilarious. We tend to laugh at each other quite a bit, and my picky eating and food touching stress was a family joke.
Now as far as my picky-ness goes, I am pretty sure that I survived toddlerhood on a diet of rice, mac-and-cheese, and tofu with soy sauce.
When I was 14, coming home from yet another failed doctors appointment. Those appointments were always mentally draining, and my dad and I were hungry. A few minutes from home, I saw a taco place I thought to myself, screw it. Life is too short not to try new things. I am not sure what possessed me to do that, but I decided to for the first time in my life that maybe there was more to food than my stress over the way it looked or felt.
I grew up on the east side, where we boast some of the best Mexican food in the state. I would always eat tacos as separate entities, eat the tortilla and the meat separate from each other, with a little lime, because the onions were too crunchy, and the salsa was too chunky (I know, I know. I can’t believe me either. Silly kid Jasmine). But I decided to get out of my head and eat it all together. And it was amazing.
It sounds stupid, but that taco place changed my life. Every time I drive down Beverly Blvd and I see Karina’s Mexican Food, I smile a little and say thank you.
At that point I got super into trying new food. I wanted to try everything and anything. And our shared love of trying new kinds of interesting food very much catalyzed my friendship with Marisa. The memories we made together running around LA on our hunt for interesting meals will last a lifetime.
“Food Adventures” became our thing. Even our moms were in on the trips that lasted through our college years. Our very first one was at a Peruvian resturaunt called Aji Limon, a favorite which we have returned to many a time. Marisa and I also facebook documented these adventures, and here are a few pics from our first one. Its pretty clear from these photos as to why we were hooked.
We were determined to try everything we possibly could, eating our way through the various cultural restaurants in Los Angeles, we learned about our neighbors through their cuisine, often looking for places to eat operated by local families instead of corporations and chain restaurants. As often as possible we would ask the people who worked there what they would suggest, what their favorite dishes. We also both got to learn a little bit more about ourselves through this process, Marisa's mom is Mexican, and my mom is Korean, and together we shared many meals with our moms that they would relate back to growing up. All things considered, our food adventures were amazing.
There is this Italian restaurant, Andre’s, right near The Grove, that I was OBSESSED with. It just sort of stole my heart the first time I went in there. One thing about me is I despise bougy places. I will take a ‘hole in the wall’ over prim and proper any day. Andre’s is so down to earth, its family owned, the food is AMAZING, and its really affordable. Did I mention the food is amazing?
There is always a long line, but it goes fast. It is cafeteria style, as you go down the line, you take trays, and they serve you and then you pay at the register.
I had been hyping this place up to Marisa for like two years, and when my family was going to the grove that December when I was home on break I just had to take Marisa with us on this cheesy tradition, so she could experience the magic that is Andre’s.
After it took us like an hour and a half to go the ten blocks from the freeway to The Grove down 3rd street the WORST traffic ever, we finally got there. And I was feeling really off.
I was dystonic, which wasn’t abnormal at that time, just more pronounced than typically, and my stomach felt weird. One bite of the dense pasta and I felt so extremely full that I could not eat anything else, not even a gelato.
I shook it off, thinking it was just a stomach bug, but later on that feeling would come back over and over again until it was the only feeling I had in my stomach. At least Marisa got to try Andre’s! It lived up to the hype 😊
Fast forward to 2015. By that point, I had steadily been losing weight. It wasn’t intentional, I simply could not eat a full meal without feeling stuffed. Like i had just eaten, well, thanksgiving dinner.
And so I ate lots of little meals, drank ensure, did what I could to try and get enough calories to live.
I went from 130 lbs to 105 lbs by the time I had the first brain surgery.
I am no fool, I knew I had gastroparesis. It’s a known complication of PD. What I didn't realize was how dire the situation was getting or how serious the implications of this complication was. It was such a slow process that i didn't realize I was dying until I was skeletal, when laying down bruised my rib cage because I had no cushion, when I learned hip bones are the perfect height to be attacked by doorknobs. Being extremely thin is not fun, its painful. Its like looking in the mirror one day and wondering, what happened to me?
Even though I knew DBS wasn't going to fix my stomach, I convinced myself that it would, that this problem was not going to be something that I would have to deal with forever. DBS is great for movements, but it does nothing to improve the mess that is my vagus nerve.
Denial is a powerful force, one that can convince even someone who's entire life aspiration is science to ignore logic and reasoning and put their stock in hope, because when it all comes down to it, our human desire to live is stronger than any other force.
So after I had DBS #1 in June of 2015, I tried to carry on my life as normal, heading back to Redlands for my senior year, which I was excited for. At that time I had thought that I wanted to be a medical doctor, an ambition which I decided in the end was not the path I was meant to walk, which is a whole other story that I will have to tell at some point. But the point is that by the end of the end of the Summer of 2015, I had taken the MCAT (which was super brutal two months after brain surgery and no sleep for four days thanks to not yet controlled insomnia), had written a personal statement about why living with my disease inspired my desire to work in the medical field (which you can read here if you would like), and I was planning on applying, casually in between brain surgeries.
Senior year started off rough. I was struggling with the cognitive recovery of DBS, it made it difficult for me to concentrate. Back at school, I lived on sandwiches from the UofR plaza market, and on ensure shakes. Some days I could barely drink an ensure, other days half a sandwich was my entire meal. By the time I went home for thanksgiving I was barely functioning. It had been a few days subsisting on a few sips of water and I had had enough. The day before Thanksgiving, my dad desperately took me to urgent care at 4pm.
The doctor called the on-call GI doctor, and his advice was to come back at 5am the next morning, GI docs have to do rounds in the hospital between 8 and 9, and if I could get in and have a GI consult requested, they would be able to see me.
So there I was at 5 am on Thanksgiving in the ER, and the jerk of a doctor didn’t want to call GI, even though I was so dehydrated it was showing up in my labs. Because my nutritional markers were just at the very bottom of the range, he was refusing to call GI, and I begged him. I was miserable and desperate for someone to fix me.
He begrudgingly called, in a very snarky tone informing me that if they came it would just be a courtesy consult.
Well, whatever. Jerkface doctor was wrong. The on call GI was the same one as the night before. This GI doc would become my GI doc, and it took him all of five minutes to tell me I was presenting classically with Gastroparesis and given my history with Parkinson’s, it was clear this was what was wrong.
Then he told me that I needed a feeding tube, and that given my state he would have put one in that day, but there was no anesthesiologist available on Thanksgiving Day.
Its fair to say I was a little bit shocked. “oh no, see when I have my second DBS surgery in like three weeks this is going to go away.”
Yeah, it didn’t.
But he treated me with kindness. He said ‘its very unlikely that will happen but okay, lets say it does. You will still need help gaining back the weight even if you do get your stomach working, and the tube can help if it comes back slowly. Besides, its totally reversible, if you don’t need it later, we will just take it out."
To be fair, I don’t think he truly understands just how painful tube surgery is because from a docs perspective it’s a 30 minute quick little surgery. From my perspective it was them stabbing me, pulling my stomach through the hole, sewing it and stabbing a tube through it.
It was bad. But I am glad I did it, because he was right. It didn’t come back. I was holding onto a tiny thread oh hope that it would, even though I knew better. Denial is a powerful force.
So after all that backstory, we can FINALLY get to the funny Thanksgiving dinner story that I had intended to write this blog about but felt the need to write ten pages of background info so this story’s magnitude in my life makes sense.
Sweet Potato Casserole
Sweet Potato Casserole
Every year for a little longer than I have been alive, my mom has made this sweet potato casserole on Thanksgiving. She found the recipe in some random cookbook made by firemen for some charity that she had. It has Kalua in it which gives it this incredible flavor, and it has marshmallows on it.
So remember when I talked about sensitivities to textures and mixed foods?
Marshmallows with sweet potatoes? Are you kidding me?
For 20 years, I wouldn’t touch the thing. The sight of it made me nauseated. And then there was 2015.
That Thanksgiving, after being told I was getting a feeding tube within a week, and not knowing if I would ever even get to eat a little bit ever again, I took a big spoonful of that casserole and said “what the hell, its now or never, may as well try this before I can never eat again.”
And I took a big bite. And it was delicious. And I loved it. With my family all waiting for my reaction, I burst into tears.
Literally sobbing (and I am really not a crier) I managed to utter “its so good, and I didn’t eat this for 20 years, and I love it and in a week I can never have it again”
And tears turned into laughter on the ridiculousness of the situation. I cried until I laughed and we all laughed until we cried.
Moral of the story: Try new things. Live it up. You never know when something you love my be gone and you wasted 20 years of not eating it.
Happy Thanksgiving. A holiday with a screwed up history, but hey, lets all spread some thankfulness. The world could use a little more of that. And to my sick friends reading this struggling with the holiday food, you are not alone <3