Getting Back Up On That Horse

It was hard for me to press the "post" button after writing my last blog entry, the one about depression. I felt so exposed, so raw, and at the same time pitifully over-dramatic. I had no idea what the reaction would be.

But I received so many encouraging responses. A dear friend praised the honesty I revealed. My great ALSA caseworker noted that feeling – and expressing – depression isn't necessarily negative, but can allow negativity to "flow through us rather than getting stuck."

I guess the posting worked, because those were my true motivations. I needed the purgative of complete honesty. I needed a dose of emotional Drān-O to clean my emotional pipes so that I could do again and be again, so I could get back on the horse and write again, paint again, live up to my personal motto and the title of this blog.

Now that my pipes are un-clogged, I can look back and realize that a lot of really good things have happened to me over the last few months.

The first is Rose, my caregiver. She comes for a few hours a couple of days a week to bathe me, dress me feed me lunch and – above all – to lift my spirits. She has a goofy sense of humor that does me as much good as her physical care. Plus, her presence gives my husband a much-welcomed respite, which makes him feel better, which makes me feel better, which etc., etc. So thank you, Rose.

The second is my new toy, my big-mama super-deluxe electric wheelchair. It gives me a new feeling of freedom, for with it I can maneuver around the house all on my own, and even go outside for a roll around the neighborhood. My next-door neighbor, who has been in a wheelchair since childhood, said it made her sad to see me confined to a chair. Not me. It makes me feel liberated.

The third is my crew. I don't think I'd ever crawl up out of my hole without my husband, my friends and my family, my ALS support group. Scott's ongoing good humor, outings with my adopted "sister," letters and e-mails and phone calls from friends, daughters and various in-laws and outlaws let me know that I am loved and that my life has value.

The fourth may not sound like "a really good thing" to some people, but to me it does. Big time. This fourth thing is Hospice.

Hospice does not mean giving up. It doesn't mean life no longer has purpose or pleasure. It doesn't mean just sitting around (cue the Death March) glumly waiting to die. It means you have support. It means you have realistic expectations and the means to manage them. It means you have a team of caring experts to help you live the way you want to and, when it's time, to die the way you want to.

My Hospice team has joined the Forbes Norris staff, my caregiver, my friends and family, and my wonderful husband in shoring me up, cutting through the miasma of depression, and getting me back up on that horse.

Giddy-up!

Down the Drain of Depression

Depression sucks.

It sucks as in, well, sucks (duh). It also sucks as in pulls the life out of everything. With depression, severe depression, things that are enjoyable aren't. Activities that give pleasure don't. Endeavors that add meaning to life just aren't worth the effort.

I have been mired in a swamp of depression for weeks now. Oh, I emerge regularly to find that life still can bring joy – Christmas decorations, thank you notes from the grandkids, the kindness of my caregivers, the love of my husband, chocolates. But anything that requires effort on my part spins me back into the do-nothingness of depression.

Look at my list of blog postings. I haven't written anything since early December. My previous posting was two months before that. And it's not as if I have had nothing to say – there has been a lot going on in my life, a lot of things I would really like to share in my blog. But every time I sit down to write, I give up before I even start. It's just too much trouble to wait for the voice-recognition program to come up, just too much trouble to think of what to say and how to say it, just not worth the effort.

So I look at mindless pet videos instead. Or it I play computer pool. Or I look at online shopping sites when I know I have no intention of buying.

And then there's painting. I have one painting still on the easel, almost completed, a picture of myself and my daughter in our opening-day-at-the-races hats. It just needs a little more work, but that little amount takes more effort than I can muster. It is easier to let my depression come up with excuses: my hand is too weak; I need to much help to set up my palette; it's just not worth the effort.

So I ignore it. I can pass that painting a dozen times a day without looking at it, without noticing the paints or the brushes, the few pieces that still need finishing touches, the many blank canvases waiting for inspiration. Finding inspiration is too hard. Succumbing to depression is too, too easy.

This blog, this admission, may surprise a lot of people who know me. I am constantly being told, "You are handling this so well," or, "Your attitude is always so positive." That seems true, I know – and sometimes it actually is. Sometimes by attempting to be cheerful I can actually make myself so. Sometimes my depression will take time off, and I can actually feel upbeat. And sometimes it's just so embarrassing to admit such profound negativity to people who are trying so hard to help me.

And often, usually, the negative and the positive are interspersed and interwoven, both equally real. While I do hope to lessen, through a combination of medical chemistry and self-awareness, the downward pull of despondency, I don't ever expect to eliminate negativity or do without depression, not completely. As my neurologist said, "If you weren't at least a little depressed, you'd be nuts." ALS is, by its very nature, damned depressing.

And depression, trust me, sucks.