My name is Craig Miller and I’m what you refer to as a caregiver, I guess. I wish I could just be considered a husband and hopefully one day a father.
My beautiful wife Debbie has a genetic disease called Ehlers-Danlos Syndrome. “EDS” is a collection of heritable connective tissue disorders. Either directly or indirectly, Ehlers-Danlos Syndrome is known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms.
What this means in Debbie’s case is that her joints are not stable and her tissues are very fragile. She dislocates or subluxes things like her ribs regularly. She wears braces on her fingers so they don’t dislocate doing simple things like writing. Just a bit of pressure anywhere on her body can result in bruising on her skin. It’s been a painful existence for her most of her life. Most people couldn’t deal with the pain and fatigue she deals with daily.
Now what it means for me is I have to watch someone I love suffer every day. The past decade has been particularly rough for us. Her good days were getting fewer and fewer and I had no idea how to help my wife. Medical bills piling up, getting behind on all of our other bills. Making sure I had a job that paid decent and had good insurance. It’s a pretty helpless feeling not knowing what to do or what to say or what not to say. How could I know? I can’t walk in her shoes, I can’t feel her pain all I can do is watch her suffer.
I’ve had people tell me I’m a “good man” for staying with her, which I don’t really understand. I love my wife. That’s why I “stay”. I remember saying to her “in sickness and in health, for richer and for poorer.” I made a promise to love her forever and I plan on keeping that promise.
Has it been hard at times? Can I do better taking care of her?, absolutely, but we’ve made it together so far and we’ll keep moving forward fighting for the right for her to use medical cannabis. We know medical cannabis can help Deb. We’ve met many people in the EDS community that live in states with medical cannabis laws and they are doing amazing. Many get completely off of pharmaceuticals using only cannabis based medications. Every sick or dying Iowan should be afforded the opportunity to use whole plant medical cannabis. Please help my Debbie and thousands of other sick Iowans. Get involved and speak up to our local, state and federal legislators.
Patient & Caregiver Stories
These stories represent real Iowans suffering from complex medical conditions that need access to medical cannabis right here at home.