The Year in Review

As the year comes to a close, I look back on all I’ve learned, all I’ve lost and all that I can give thanks for.   The last one used to be difficult because I could barely see what there was to give thanks for as my disorder progresses.  My pain is barely tolerable most days, but I have tolerable days as well.  I also have a few days here and there where I actually feel kind of normal, whatever that is, right?  And I still have a roof over my head, food in my belly, and friends and family.  And I am grateful for all of that.

I also still have a neurogenic bowel, a neurogenic bladder, tumors everywhere, teeth that are costing me a fortune, scary digestive issues and a brand new issue: severe pain in my left ear and hearing loss that is getting worse all the time.  Methinks there is a tumor in my head causing the pain in my ears, but I am too worn out to do anything about it.  Actually, I saw it on my last MRI and it was big, but not in my brain.  My doctors didn’t even return my calls two weeks ago about my CT scan.  I can’t be fixed, so they just ignore me unless I get in their face big time.  I no longer have the energy for that, so it will play out however it plays out.  And you know what?   I am perfectly okay with that.  Well, maybe not perfectly; I definitely have moments of panic attacks.  But I’m working on that with meditation and my drumming thing.

I’ve actually been a bit afraid to do the drumming thing since I talked with my therapist.  She advised me to find a place in my mind I can go that feels safe, put a question (whatever the question is) out there, and then just listen to the drumming.   But the drumming changes the beat toward the end to pull you back from wherever you go (up or down, usually, though we aren’t talking about heaven or hell) and you have to wait for that so you come back.  Sounds weird, but it’s a Shamanic thing and it helps.  Just have to work up the courage.  I guess I’m afraid of what I’ll see or find out.  Afraid of the answer to my question, which may not have an answer at all.

My friend Ted, who is in the nursing home because he can no longer function at home due to the pain and complications of NF, just called.  He spoke with some counselor there, and he’s looking into hospice.  She told him that hospice is no longer just for people who are dying.   My situation is heaven compared to his.  And hell compared to “normal” people.  So comparing is poisonous.  I am terrified I’ll end up in his shoes.   He warned me again not to let that happen, if you get my drift.  We treat animals with more compassion than we treat one another when it comes to these situations.  A suffering animal gets euthanized, but our Judeo-Christian fear factors keep us from ending the suffering of people like Ted.  People like me. 

I am way too late to benefit from any “cure” that comes along, although I just read they have successfully reduced NF tumors in mice, so maybe children will not have to grow old in this nightmare.   That would make me extremely happy!  Sorry I am getting so negative; talking to Ted always breaks me in two.

May you all have a great holiday and a happy, HEALTHY year!