Monday, February 2, 2009

Groundhog Day

I'm not sure if the groundhog saw his shadow today since I slept late this morning. My pain's often worse in the early morning (spondylitis) plus it's hard to get going until pain and heart med kick in. I usually get a second wind late evening and seem to do best then. Anyone else get these strange patterns?

I talked to one of my three best friends on the phone for an hour yesterday and feel so much better. Sometimes I just need to talk to my "crip" friends--they get it. We talked about aspects of spirituality and disability, the assistance dog possibility, scooter use (she had one for years), and various medical-social issues. I also emailed with Yanub and feel better.

My friend emailed me a long document (eight pages single spaced) she had written about spirit and religion and disability a while back, for others who had requested it. I find that I am in 100% agreement with what she says; even if I were an atheist I'd agree with the conclusions she makes. We both grew up Methodist, have adopted some "new age" spiritual beliefs, and have thoughts in common with other religions, but we both decry the misuse of religion against people with disabilities. The experience of reading what she wrote was beautiful, such a positive force among the negative social responses I sometimes receive.

Her assistance dog was trained by CCI. We talked about how I'd need greater assistance if I return to employment part- or full-time or am out more on my own. I expressed some of my concerns, and she said that there are people far less disabled than I who use assistance dogs, and advised that I get on the waiting list.

We talked about her home health care issues and I worried some, knowing Minna's situation and Elizabeth's and her own. Her regular caregiver has had to return to full-time employment with insurance. My friend's now had 45 caregivers in and out of her home in the past year, and not all of them come from responsible backgrounds. One asked her to pay her cab fare and another was calling in sick to another job so she could get double pay. Nevertheless, she's found women employees who have come from very difficult circumstances and are transforming their lives and making better decisions after some hard mistakes. She teaches a class on spirituality from her home and hopes to open another class for some of these women, who are interested and need the company and support. Many of them don't have family support. Some of them would like to mentor other women who have had similarly difficult experiences, sharing resources, ideas, and support.


yanub said...

Forty-five carers in one year! It's really awful that society doesn't value care work enough to attract good people and then to keep them. That your friend has managed to, despite all the hurdles, develop a trusting relationship with some of them is really remarkable. I can see why people would want to learn from her.

I generally get a second wind in the evening, regardless of whether what's been bothering me during the day is pain or allergies or both. Maybe there is something about us that just works better after the sun has gone down?

FridaWrites said...

Whatever the cause, I am grateful, though it causes strange sleep cycles.