Living life with multiple chronic illnesses…. and some other stuff!

Monthly Archives: June 2012

Erin from the blog A Dress A Day wrote a really amazing blog post. So amazing that I have to share it with you all. As someone with a chronic illness, I’ve often felt frumpy, ugly, unattractive, etc., at least once per day. Because of living in chronic pain, comfort is a major component that goes into the decision making of what to wear. Why should we have to give up comfort to feel pretty? Why should we feel that we aren’t “pretty enough” to wear a certain dress or outfit? These are the major points of her blog post and I urge you to read it! 

You Don’t Have To Be Pretty 


‎Today I would like to share a story written by a young man who lost his fiancee to complications of Ehlers Danlos Syndrome.

‎”The Jade Dragon” by Matthew Curran, written in honor of his fiancee, Amy Mak, who passed away from EDS in 2008. It made me cry.

There is a jade dragon pendant I wear constantly because of a broken promise. Usually promises are made regarding difficult or important things that mean a lot to somebody. They are also made in regards to trivial matters, but when those promises are broken they can often be forgiven and forgotten. The important matters are different, more vital to honor, and even when they are easy to carry out, the consequences of breaking them are massive. In fact, the easier a promise is to keep, the greater the consequences to one’s conscious for breaking it.

The jade dragon was a sort of gift from my fiancee, Amy, for protection. I was flying to Pennsylvania for a week, and it was the first time we’d been apart in nearly two years, except for a few nights when she was in the hospital and I slept at home for whatever reason. The carved dragon hangs on a faded red string tied in a stout knot, keeping the circumference too short to fit back over my head. Well, it is now at least.

Before she got in my little Toyota to go stay at her parent’s house for the week I would be away, she stopped and pulled the jade necklace from her purse. “Come here,” she said, and when I complied she reached up, standing on her tip-toes, and began to yank the tight string over my head, pulling down hard. “Don’t take that off until you’re back here!” she said in her stern voice, which was incredibly convincing, despite coming from a sub-five-foot-tall-in-high-heels Chinese-American woman. She accomplished this with her unique way of making a sentence into a single word; what she actually said was “DONTAKETHATOFFUNTILYOUREBACKHERE!” Naturally, I promised to wear it at all times until I returned, on the usual conditions of torture and dismemberment.

I flew out of San Francisco to Philadelphia and stayed with my parents for a week. I worried incessantly, even though Amy was supposedly safe with her parents, they hadn’t seen the worst of her condition which had developed after she had gone away to college; they didn’t know what to expect when she got really sick. Amy lived with a genetic condition called Ehlers-Danlos Syndrome, and it periodically made her life a living hell. EDS, as it’s known for short, directly affects the body’s collagen production, which reduces the strength of connective tissues responsible for things like your joints staying tight, and your skin not stretching like a rubber band. It can also cause curvature of the spine, vision degeneration, slow wound healing, and deadly vascular problems. In Amy’s case, all of these effects were present, along with the gratuitous addition of excruciating pain and nausea on a regular basis, usually described as an abdominal migraine.

Ehlers-Danlos is such a little-known and less understood disease that only a handful of doctors in the world know anything practical about it. Hospital admits were difficult every time. I had to be Amy’s eyes, ears, and voice, as well as her guardian angel and personal EDS expert in the emergency rooms and in-patient floors. By the time I knew she was having an attack bad enough to be admitted, it was too late to ask her opinion. Pain has interesting and varied effects on people, but of all the doctors, nurses, 9-1-1 operators, and ambulance crews I’ve explained Amy’s behavior to, none could understand it. After too many continuous hours of pain her consciousness would retreat, hide away somewhere inside, leaving only a primal creature on the outside, incapable of language and persuasion, until some morphine or sedatives could be injected. The understanding of pain is a huge subject in itself, but the basic problem is that bad pain is always unbelievably bad, because if we always remembered how it felt we would go insane; the problem is that your pain is unbelievable to anyone else because they cannot feel it with you. I pushed the boundaries of empathy with Amy, I watched over her constantly, I cleaned up vomit, I went without sleep, but even I could never share her pain, as much as I wanted to.

Fortunately my week away was relatively uneventful. Except for a few tears of loneliness, both Amy and I were fine. That is until I took the jade necklace off to sleep and hung it on the bedside lamp, where I forgot all about it. It’s certainly not that I wanted to break my promise to wear it, but just like most people take for granted they will wake up in the morning, I took for granted that I would remember the necklace and Amy would never know I’d removed it. Her dragon necklace remained hanging on the lamp for the entire week.

I finally remembered the necklace when I got on the plane back to California. At that point there was nothing I could do, I was going to disappoint the person I cared most about. I called my mom when the plane landed and asked her to ship it back to me right away. With a few days to wait for it to arrive by mail, I had to hope that Amy would be so happy to see me that she wouldn’t think about the dragon necklace for at least that long.

“Where is the necklace I gave you?” she asked me immediately when we got home. I had to confess that I’d disobeyed and taken it off to sleep, being unaccustomed to having anything on my neck. “This is why I told you not to take it off! It was supposed to protect you during your flights.” In Chinese folklore the dragon is a symbol of good luck, and holds power over stormy weather, so having me wear it was Amy’s way of trying to take care of me.

Amy was a very intelligent and educated woman but I think she held onto some ancient beliefs, in a semi-serious way, to stay connected to her parents and their culture. She was born in Hong Kong, but brought to the States as a young child to gain access to more advanced medical treatments. Though her parents were well versed in Eastern medicine, they still recognized the need for high-tech surgical procedures to save her life. Despite her pain, Amy was constantly grateful for this, and took pleasure in mentioning that if she had lived in China she would have been dead before the age of seven. By the time she was 27 years old she had been through eighteen spinal surgeries involving fusions with titanium rods to correct her scoliosis. I often lovingly referred to her as “my bionic woman” because of this.

The necklace was an important symbol for Amy, though she would never explicitly say so. She wanted me to have something of hers with me when I was far away from her, so we would still be connected. Having spent the previous two years as her caregiver, her friend, her lover, her driver and nurse and partner in all ways, I looked at us being together as a simple, undeniable, eternal truth. She talked about marriage and children from time to time, and I would always protest and ask why it was necessary. “Why, if you know I’ll never leave you, do we need to have a wedding?”

Romance was a difficult concept in a relationship made so intense by pain and life-or-death struggles, so there never was a big proposal moment for Amy and I. Without ever really noticing the change, we gradually started talking about our future in terms of before and after we got married. It just seemed right. The moment this idea finally solidified in my head is one I will remember more vividly than any other in my past or future. I was leaving for work after a difficult night spent next to Amy’s hospital bed, and I looked into her anxious brown eyes and said “Bye honey. I love you.” That was all. I didn’t have to say it, because we both knew it was true, but it was important. In that moment, seeing her look back at me, whispering “I love you too,” was when I realized I was meant to spend my life with her; I couldn’t picture a life without her. About five hours later she was in the intensive care unit, in a coma with a ruptured aorta. I had missed all the calls from the hospital until nearly lunch-time. I ran to the ICU with a gut full of dread. She died the very second I got there.

* * *

The day that Amy died, I found the jade dragon again and put it on. Threaded onto a simple red string and tied in a knot, it was never meant to be a permanent fixture; it wasn’t meant to last in the way my life with Amy was supposed to. In the three years since she passed away I’ve always had the jade dragon next to my skin, so I can stay attached to her in some small way, even as life moves on for me, taking me further from the world we built with each other.

Connections can form between people that even death cannot sever. I’ve never been religious (despite my mother’s best efforts), but to paraphrase The Bard, there is more in heaven and earth than is dreamt of in your philosophy. The weekend of Amy’s funeral coincided with the peak of the Perseid meteor shower at the beginning of August. Consumed with grief as I was, I remained oblivious to this fact until some time later. My first night home after the funeral, Amy appeared in my dream. She floated in a peculiar way which felt natural at the time. She took my hand, and dragged my incorporeal being out of bed, directly through the roof, then settled back onto the shingles to look at the sky. We sat there together for hours simply holding each other, watching the shooting stars, pointing out big ones to each other from time to time. All my feelings of loss and heartbreak were for a little while overcome with an incredible sense of peace. When she said she had to go I wasn’t surprised, because I knew I had lost her a week ago, but she said she would return and I felt comforted.

Almost a year after Amy’s funeral, on the morning of her 28th birthday, I woke from a dream about her to find the jade necklace had neatly tied itself a new knot, just above the pendant. Until this point the string had been just loose enough to be removed from my head, but now it was impossible. As tempted as I was to undo the knot to see how it had been made, I felt like it would be a desecration. I think the new knot in the necklace is her way of saying “Don’t forget this time! Or I’ll kill you in your sleep!” That was always an empty threat, but the way she would say it carried all the love in the world.

There is a special kind of bond between people which is born from suffering. Amy suffered more than I thought was possible, and I was there to see it, or at least as much as I could stand. There is another type of bond, born from guilt, that goes along with the bonds of suffering. Amy and I did a lot for each other, and not just because we had no one else, it was because we loved each other so completely it was like we were two halves of the same person. Though this kind of familiarity can quickly decay into taking the other half for granted when times are rough. Of all the things I regret in myself, in my entire life, this is the worst.

I will always see Amy again, I know this as a fact. She continues to visit my dreams from time to time, and whether this is my own imagination or something more doesn’t matter at all to me. I continue to wear her jade dragon, because I promised I would never leave her, and when I see her in my dreams she is peaceful and happy because I’ve kept this promise. I’ve moved on in life, made new plans, tried to become a better person. In every aspect of life I’ve used the jade dragon as a reminder of Amy’s constant strength, and her unwillingness to give up on a life filled with pain as long as a drop of love still exists. Through the dragon I remember the best and worst things possible in life, and Amy’s spirit which never quit, even when her body did.