2019 Update

I’ve been absent for a while. Honestly, this is the first time I’ve even been able to go near my keyboard and to attempt to write.

It hurts, but in a good way.

It aches the way that muscles do after physical therapy. There’s that sharp pang followed by a sigh of relief after relocating a joint. 

Read More...

Grieving and Hope

My life will forever be changed by Ehlers-Danlos Syndrome and its sister diseases. I will never be able to go back to life the way it was a year ago, and I had to mourn that life. I had to face the reality that I may never dance again, that I would have to put work on hold, and defer my university studies. I had to confront my fears that maybe this was psychosomatic, that I really just had Munchausen’s and was somehow making myself sick on purpose. But I had to stop grieving, because I needed to fight for just a little longer.

Read More...

Counting my blessings

Yes, now my days are a bit different. Sometimes I have days when I can’t even get out of bed. Sometimes I have to stop doing the things that I love, and find another focus that is something more doable for my body. Sometimes my days are filled with doctors and pills, procedures and hospitals, and sometimes they tell me things that I don’t want to hear, but sometimes they do.

Last night was a bad night. So was the night before, and in the small hours of the morning, I said a quiet, wordless prayer. And today, today was a good day.

Read More...