Slowly but surely, I am getting further along in my death midwife and home funeral certification. However, my health is still incredibly unstable, and I’m finding myself at an average of 3 doctor appointments a week. I’m seeing 8 specialists in various disciplines along with a cognitive-behavioral therapist, because who wouldn’t need a therapist when suddenly medical care has become a full-time job? Yesterday I got the news that brain surgery to place a shunt in was onthe table if medication didn’t keep my symptoms stable. And that, if I don’t go into remission, I may end up with a shunt anyway. Meanwhile, despite every doctor I’ve seen telling me what a good attitude I have about the fact I have 2 rare diseases and basically the body of a 60-year-old in my 30s, along with my therapist saying she wished I could go to her group sessions in order to be an example of managing things in a healthy manner, I keep getting told to remain hopeful and positive I will get better by others. One of my diseases is progressive and will actually get worse as I age. The brain disease, idiopathic intracranial hypertension or pseudotumor cerebri, has no medication, no treatment, and very little research done specifically for it. The word idiopathic means they have no idea why my brain is producing too much spinal fluid. I am pretty resigned to dealing with this my entire life; it’s a better place to be really surprised and happy when things get radically better than to expect the best and have none of it go that way. When you are 1 in 100,000 people to get a rare disease with no cure, it really is best to go with realistic but willing to do whatever it takes than to be seriously depressed and angry with the universe when suddenly you find yourself headed towards the option of debilitating pain and blindness or brain surgery that doesn’t always fix a problem. I smile. I laugh. I do my best to find fulfilling things to replace my old passions I can no longer do (large-scale gardening, for instance).
I get into this here, because a lot of people donated to me and in turn allowing me to do this training. None of this current brain-related health issue was in my life when I signed up for the educational program I’m taking, and I’m still dreadfully behind on things promised as rewards for those who donated generously to my education because of it. There’s a lot of guilt there, because I hate not being able to carry through with it at this point. I feel like those who donated should be made aware of where I am with all of it… Which is not as far as I hoped to be.
However, I am pushing through with what I am capable of doing… Reading, writing, taking the class modules I have to get through, and researching.
After NaNoWriMo in November, I will be setting out to really dig into writing a book on postmortem and funeral rites for the Polytheist community. I plan on trying to give a summary of historical practices in various civilizations, covering body care and resources for those wishing to embark on a complete home funeral, helping the reader create a funeral that meets both their religious and secular needs inside or outside of a larger community… Along with an idea for inter-faith help within our local communities and resources for legal questions or further help outside of a religious community.
I am hoping to have it fully ready for publication by the end of next year, though depending on how things go in my own life that’s really a pretty ambitious deadline. It’s where I am right now.