May | 2015 | Kkhymn's Corner

Well, I have been busy trying not to kill myself with doctor’s appointments, labs, tests and more doctor appointments. I have been going to a medical related event every week now for the past month or so, and I really don’t know how I am going to manage it all once I get all my specialist referrals and stuff in HMO land. I know for many of you, getting dressed and out of the house is a daily routine procedure, done almost automatically. But for me, this has been overwhelming and exhausting. I have less spoons and am struggling to keep my knitting mojo.

My New Pain Doc

One of the doctors I managed to visit was my new pain specialist. We got along fine, and the appointment ended with a wonderful shot of Torodol in my butt. I know the effects are temporary, but it made my ride home so much easier and helped me recover my spoons too. The new pain doc is also a neurologist, and that was a nice change of pace. He understood that my pain and health conditions were separate from my cerebral palsy, and also knew some of my stuff was not “fixable”. But he did offer me a new possibility and hope for some relief from my screaming body; it is a new non-narcotic drug that is derived from the venom of a cone snail found in the depths of the sea! Imagine that?!? This non-narcotic drug (called Prialt) would be delivered to my body directly into my spine through an implanted pump device; the venom would slow down the nerve impulses and block the pain messages to my brain. A little sea snail and its deadly venom could completely change how my body screams out every day. The results vary, and there are some very serious risks. And, it could take several months if not all year, before I get all the tests and approvals needed to even try the device and drug. The drug could not work at all, give me psychotic hallucinations and memory loss, or I could even be allergic to the pump device. But it has given me a small bit of hope, something I have been losing for many months now. I started researching these venomous cone snails, and have now become snail obsessed. I am reading about snail life and how amazing these land and sea creatures are. How they have survived environmental changes and adapted to new environments, searching and creating safe places to live each day. The beauty of the cone snail and their elongated shells had me start a snail shell collection. And it is amazing to watch them capture their prey! Who knew a snail could be so deadly? Just watch this National Geographic video: I realized that my chronic health conditions have forced me to live life at a snail’s pace, much slower than the rest of the “normal” world who is busy with endless activities, errands, commitments and chasing dreams of financial success. Instead, I spend my days doing the most basic tasks, with short “to do” lists, and few long term goals. Like the snail, I have a limited territory to travel; my social life is limited and isolated in its own terrarium, with only short distances outside the house for doctor appointments and small errands. The more my body attempts to do, the more it screams and forces me to walk inches at time, sometimes barely making it back home. I am like a snail — my body often slow and sluggish, my tentacles focused on survival and simple tasks, and at the end of the day, looking for safe places to hide, rest and recover. I began telling a few friends about these cone snails and the potential treatment from snail venom. My friend Melanie recommended a book titled, “The Sound of a Wild Snail Eating” by Elizabeth Tova Bailey. It is the true story about a woman who becomes bedridden my a mysterious chronic illness, and in the midst of trying to live through her unanswered questions, befriends a wild snail who keeps her company in her studio apartment. Her intimate observations about this wild snail and its activities is captivating and without realizing it, this snail teaches her invaluable lessons about living life at your own pace and not giving up.

The Sound of a Wild Snail Eating by Elizabeth Tova Bailey

Those who live with a chronic illness will hear their own voice in the author’s words and experiences, while all the readers can learn the every day lessons of this snail. Lessons in life about slowing down to see and hear the littlest of things because every moment matters. Lessons reminding us that every living creature is here for a reason, even a person who is broken by pain and illness and living life at a snail’s pace. And lessons of change, as something we battle, adapt to, survive and actually live through it. Read every page of the book – from the quotes, to prologue, each chapter, epilogue and appendix. Every word is part of this story and worth it. Then visit the author’s website at http://www.elisabethtovabailey.net/ to hear the sound of a wild snail eating, and find more chronic health resources, discussion questions for the book, and even curriculum options.

I don’t know if the snail venom will work for me. I don’t know what lies ahead for my body as it continues to struggle to survive the most basic of days. But learning about the snails has reminded me that my life still has value and purpose, even at a snail’s pace. That I, too, have found ways to adapt, survive and live through the unanswered questions. And the snail reminds me that taking time to rest and recover from the world is ok, and normal for living creatures. And like the snail with its venom, I can still fight on. I am so grateful to snails. Even if their venom doesn’t end up helping my body, their spirit has lifted my soul. Just call me snail girl. And, don’t be surprised to see some knitted snail monsters in a future post. Please share spoons when you can as I will need them for all these doctor appointments this year. And remember to practice a random act of kindness. Sharing love and light, and hoping you fall in love with snails too.

For those of you who don’t know what my reference to spoons are, read the Spoon Theory here.