Sunday, December 21, 2008

Holy Pesistence

This blog has a dual function, which sometimes makes it hard to write. I'm trying to document the process of living with increasing disability. That has a practical aspect: symptoms, management of symptoms, society's supports and lack thereof. There is also the interior aspects: being a thinking and feeling person on this journey. if I were a better writer, perhaps I could blend these gracefully. Today, at least, I'm going to rely on headings.

The practical blow-by-blow

In late November I made a series of phone calls aimed at getting a personal care assistant (PCA) so someone could help me with a transfer in the middle of the day. I called my County Human Services Department, the disability linkage line, and my local Center for Independent Living (MCIL).

The county social worker was primarily interested in getting me into a program that might help me pay for a PCA. She suggested that I call another social worker who handles the MA-EPD program. I did and left a message and have heard nothing since.

I exchanged a series of voice and e-mails with folks at the MCIL and visited there last week. It was the most encouraging thing I've done in the last few months.

Centers for Independent living were started in the 70s part of the disability rights movement. The idea was that people with disabilities should be able to participate in public life as much as possible and be the directors of their own care.

The MCIL has a program that helps people hire and manage their own PCAs. The woman who runs the program described what they do and was helpful in letting me know what my next steps should be.

There are of course challenges. Getting on MA-EDP is a bit complicated, but MCIL has advocates who will help me work my way through the system. if I want to try to pay privately, MCIL will help me find and hire a PCA. The finding would be easier if I lived on a bus line and wanted more hours. It all makes perfect sense, but it's a bit daunting.

The inside story

Getting advice about what my next steps might be was part of what encouraged me about my visit to MCIL, but there was a deeper satisfaction that has taken me a while to identify: they accepted me as I am.

Part of the dance is that I want to be as physically healthy as I can be, but I have to realize that the disease is at work. The physical therapist was trying to make me better. He was trying to do what he could to restore lost function. Bless his heart. We had to try, but that opens me to grief and disappointment and feelings of not having done it right. The folks at MCIL didn't ask for me to be any different. They accepted my description of what was going on, gave me some stories about how other people have dealt with similar situations, and offered their support. It was such a relief to leave there feeling like there is a road forward, other people have traveled it and I do not have to be alone.

It is bitterly cold out here and snowed 5 inches last night, so I decided not to go to church this morning. This means that I don't know what my faith community has named the last advent candle. I suggested to my family that we think of our own name for it. (My rascally housemates have suggested that we name it Fred.) This morning, after a pain filled night (spasticity), I decided that, for me, the candle will be named "persistence." It's not as poetic as the usual hope and faith and love, but it is a gift I need to nurture these days.

It was certainly part of the Christmas story: a desert journey on a donkey, finding a place to I'm heading into the holidays trying to practice holy persistence.

Friday, December 5, 2008


I was crabby at the doctor for not sending me to physical therapy. I was hoping that going would help a feel better. So I kind of forced the doctor into prescribing it. As it turns out, the doctor was right.

Physical therapists seem to be positive thinkers (nature or nurture? ). My PT was no exception. My first visit was wonderfully encouraging. We talked about regaining use of my left leg. Failing that, we wondered if I might be able to transfer using my right leg. Failing that, we talked about the possibility of a brace helping to stabilize one of my legs to make it possible to transfer. We spent the next month exploring those possibilities.

While the PT kept his hopeful attitude to the end, suggesting I could take the brace home to try to make it work even though we had no luck at the therapy office. But, as we crossed each possibility off the list, his positivity seemed a bit more forced. He apologized before I left, and I reassured him that even he could not accomplish the impossible. Sometimes, if a body won't, it won't.

Life has changed. The speed of change has been a bit shocking. The “good old days” were the beginning of October.

I am less upset than I might have expected. If I had given up immediately, if the physical therapist had given up immediately, I think I would be more distressed. Having experimented with different options and having lived in this changed body for a few more weeks have helped the adjustment. I was noticing yesterday that Ralph and I are learning what we have to do to get me and my body washed and dressed in the morning. We understand more about what works and doesn't work and vary our techniques to fit the spasticity level of the day.

So I am living through another cycle: the frustration and panic of Overwhelm, the falsely courageous veneer I wear during Incubation, and now the beginnings of Reconciliation. That word is so perfect for me. It combines the idea of being reconciled to the change that is taking place as well as reconciling with my changed body. That is the work I have in front of me right now.

There have been—and will be—many tears, but a measure of peace is returning.