Special thanks to Chef Evan Francois and Photographer Renata Stone. Thank you to everyone at Harmons Cooking School. Thank you to Bob Leibo and everyone at Make-A-Wish.

I recently was blessed with the opportunity to attend Harmons Cooking School in Salt Lake City where I made a three course meal for my family all from scratch. My mom surprised me with it the night before, but she and one of my Make-a-Wish granters had been emailing back and forth for two weeks setting it up because my granters had picked up on the fact that I like to cook!

It turned from squeezing me into one of the classes, to a private lesson with one of the chefs, a photographer coming and taking professional pictures of the experience, and my whole family coming to eat my (and Evan’s) food!

Plus, Harmons put together a beautiful basket for me to take home with my very own pasta maker, colorful ceramic knife set, rolling pin, whisk, spatulas, recipes, and more! It was more than I ever deserved and I can’t thank them enough for it.

You see, for me, it wasn’t just any other cooking class. I’ve had a very rough last two weeks. I’m not going to lie, I was in a pretty deep depression. I didn’t want to go anywhere, do anything, see anyone, or talk to anyone. I just wanted to watch netflix, youtube, and sleep. Now, if you know me, this is NOT me. I would rather be doing musicals, going to school, rock climbing, tumbling, skiing, shopping or even just drawing than just sit on the couch and watch movies all day. I hate sleeping in until noon or later and I love staying up late because otherwise, I think I’m missing something! So for me, to not want to do anything, was very unusual so you know I wasn’t doing well. It all started with one of the biggest seizures I’ve had about three weeks ago at school. Since then, we learned that the inflammation levels in my body have been 10-12 times higher than they should be, my liver counts have been off, I’ve been retaining tons of fluid so there’s concerns about my kidney functions, my stomach is inflamed causing me to throw up, my eosinophil counts are up, and honestly, I just feel like crap, inside and out. I feel trapped inside my body and yet, at the same time, it doesn’t even feel like my body anymore.

I can’t stress enough how alienating rare, progressive, and undiagnosed diseases can be. Your body is constantly changing and failing you. Just as you think you have a hold on things, something else seems to go wrong. Either your hair starts falling out, your knees start hurting, you can’t sleep anymore, or you can do nothing but sleep, whatever it is, it’s always something. You never feel like yourself. You can’t trust your body to do things you used to without even thinking about it! And you can never feel at home in your own skin. Lately, I’ve been wanting to dye my hair or cut it, get my nails done, anything to try and regain control with what is being done to me; anything to feel like my body is mine again and not my disease’s. I’ve wanted to do anything to make me like myself again. Too often, I mix myself up with what I have and because of that, I don’t feel my worth. At every turn, I find myself doubting my abilities and finding it harder to love what I used to love to do because it’s more difficult, and that is not like me. I’ve never let challenges get in the way before and I’ve never let fear hold me back. When faced with walking off the side of a cliff with nothing but a rope and a harness to keep me from falling to my death, I jump up ready to leap! So to think that I was giving up my passions to my illnesses just because they were a little more daunting, has been ridiculous!
This cooking class seemed to help shake those chains a little and let me realize that I am still capable of doing good. That even though my diseases suck, I don’t have to. The feeling I got when my brother exclaimed that he felt my pasta tasted better than what he would get at Olive Garden’s was more amazing than I can describe! For years I have wrestled with my relationship with food. The thing that’s supposed to enable me to enjoy life, threatens to take it away from me everyday. Without my feeding tubes and central line, regular food would kill me as I am unable to digest nutrients naturally. Because of this, I struggle daily with my tongue craving flavors, my stomach screaming at me to steer clear, and my brain being equally afraid and excited about food. By cooking, I am being able to find joy with handling food again. It’s less of a harmful, scary substance and more of a fun, helpful thing. Just because I can’t enjoy it like everyone else, doesn’t mean that I can’t still enjoy it.

I’m definitely still struggling, but Harmons and my Make a Wish granter gave me something that can’t be bought. They’ve given me a piece of my old life back. They’ve given me a little more confidence, a little more happiness, and a more joyful look towards the future-one where food and I don’t have to be enemies. One where I don’t have to constantly be feeling bad about my body and its inabilities, but rather feeling proud about my abilities. One with a little more noodles made from scratch, recipes straight from the heart, and peace in my trials, knowing I always have loving family and friends to be there for me when I’m down. And even though I can’t do it all, I don’t have to. I just have to be happy being me and knowing I am enough, just how I am. – Rachel Nielsen