There’s always a light when you’re walking. It might be dark but the moon is illuminating the suburban streets, cities and woods and you feel safe. Or you’re inside your home and the lights from nearby street lamps and businesses glow on the kitchen floor on your way to getting a glass of milk. If you can see in front of you, you’re safe from any missteps and potential hazards. You’re safe because the light is there, always waiting for you to see. It’s there to protect you. The light is a cushion in a perplexing life that sometimes doesn’t make sense.
When you’re diagnosed with a rare and incurable disease, the light that was with you since birth slowly starts to fade. Little by little, the light flashes for brief moments with only a shadow left behind. You search for the same light before your illness and sometimes it still works, but fades when you think you need it the most. It’s just not the same light as before.
When you live with a chronic illness, life doesn’t wait for you to catch up and protect you from mistakes. You’re toppled with diagnosis after diagnosis, endless medical bills and multiple phone calls from three separate medical offices or hospitals in a day.
You have this pain that never really abates because the leftover trauma just piles on top of each other, leaving more pain in its wake. So you keep looking to find answers, so that same light you had growing up can finally shine bright once again. You keep looking because someday, maybe not during your lifetime, someone going through what you did will get treatment that won’t make them feel all alone, desperate for answers. Someday they’ll know what to do so their conditions won’t leave them bedridden or in so much pain they can’t make it through school, work, social events and exercise.
This past summer was hard, to say the least. Ambulance rides, hospital stays, a friend’s death. And I was almost dying every day. However, mixed with the daunting experiences was me and Brad’s wedding and other weddings with family and friends.
My wedding couldn’t have been more perfect. I was sick but able to stay upright for far longer than I am now. The look of happiness and love on me and Brad’s face got me through the night, to the very last song “At Last” by Etta James. I picture Brad’s face when the pain descent is rapid and I can’t speak. I picture the look he had, loving me and using his feet to turn my wheelchair on the dance floor, focusing on my face only and the true love in his eyes. There was no fear.
It was the best moment of my life and lit a fire in to my journey to finding a treatment that will stabilize me. A treatment that could help me spend the rest of my life with a man that loves me unconditionally. A treatment that will let me go on adventures with the most beautiful husband a woman could ever be blessed with.
The last wedding I went to was my best friends Rebekah and Rich’s two weeks ago. My husband Brad was a groomsman and I was a bridesmaid. They took a chance with me in the wedding since I was sick, and I am so glad they did. It became my mission to make it to the wedding. Every day I would tell myself, I am swollen and in pain but if you picture Rebekah and Rich on their wedding day, smiling brightly while saying their I Do’s, the spotlight set on them during the first dance, then that pain can be a low roar and their love will be a loud one, where for just a few hours, I only had to concentrate on being there for them and to deal with the ramifications later. To look forward to that day for months became one of the reasons to keep fighting.
A few months ago I was having a really bad reaction in bed and while Brad gathered my antihistamine cocktail, I closed my eyes to try to calm down the reaction since it was making my heart rate go to the 160-200 mark even though I was laying down. Everything was dark and Brad’s voice was far away.
The pain was so excruciating that I felt like my body was being crushed. I didn’t want to fight because I thought I didn’t have anything left in me. My closed eyes only saw darkness and pain. I wished for death to come at that moment, and for a few seconds I believe I was heading in that direction. And then, there was light. Shining everywhere I looked, bathing me in comfort and love. I wanted to stay with it, I wanted it to take me away. And in that moment, I thought of Rebekah and Rich, and how much they meant to me, and their upcoming wedding. I focused on the way Brad had looked at me during the last dance in our wedding just a couple of months ago. I forced my eyes open to see Brad looking at me with the same love in his eyes as our last wedding dance, mixed with fear. However, that love was my light.
The light was there for me that time but it wasn’t the same light I grew up with. I had made my own light through my love for the best husband and friends a girl could ever have. A light that keeps me here. A light to protect me. They don’t know this, but I believe that all of them saved my life that day, and every day after. Rebekah and Rich’s wedding was just as magical as I thought it would be. It was perfect, just like a reflection of their love. The same love Brad and I have for each other.
I hope there is a heaven when I do pass away many years from now. But the heaven I currently have, with my loved ones and family is enough for me. They help me through every reaction, every pain. They help me live. They are my light, my hope and future. I fight for myself and I fight for them. I keep going so their love can shine my way back to living and fighting one more time.
#mastcelldisease #ehlersdanlossyndrome #chronicangioedema #chronichives #gastroparesis #feedingtube #severeacidreflux #posturaltachycardia 
The Ramblings of a Young Bostonian 