I hurt all the time, night and day. I have been struggling for a while to stand and walk. Any amount of time on my feet is excruciating and exhausting, at times to the point where I can hardly endure it. So this week I finally admitted to myself how bad things have become. Then my husband and I went out and bought a wheelchair. How quickly life changes.
I laid in bed that night feeling discouraged and broken. My road had become something I wasn't ready for. I have spent a lot of time lately contemplating this path and what the rest of my journey really ought to look like. And in that quiet moment as I thought of how much things had changed and how quickly, I was reminded of a song written not many years ago, a song that has always spoken to me but did so even more in that difficult moment of struggle.
Sometimes I feel likeThere are moments, many of them, when I sit down on the roadside of my journey because I don't have the strength to go on. But somehow, I get up again and keep going because that is what is asked of me.
I've never been nothing but tired,
And I'll be working
Til the day I expire.
Sometimes I lay down,
No more can I do.
But then I go on again,
Because You asked me to.
--"Up to the Mountain," Patty Griffin
At first I was discouraged at the idea of doing book signings and conferences and so many other things in a wheelchair--it was just such a drastic change, and such a sudden one. Yet another way in which my life was changing and aching and falling apart. I am so used to being up and about while I'm out doing these things. It felt almost as though I was being punished for trying to keep going. But as I thought it over there in the dark of night, a new perspective settled over me.
I can't change this, but neither can I simply plop down on the roadside and weep for the rest of my life. So my chair, which I have dubbed "Little Buddy," and I are going to make this work. It will be different, but it will be okay. When my RA is more under control, I will be able to be up and about again. When it flares again--and there's no avoiding that, RA always returns, again and again--Little Buddy will be there waiting to take away some of my burdens.
My mom, who, along with my dad, is living up here with us right now, helping me get through all of these battles I'm fighting, is helping me make a fabric cover for the back of my chair, a matching, comfy seat cushion, and imagining with me crazier and crazier ways to chic-ify Little Buddy.
Just like we used to sign our friends' casts back in elementary school, I'm bringing markers with me to signings and conferences and events, and asking anyone who's willing to take a moment and sign the back of my wheelchair. I know it probably seems silly, and is probably a completely dorky thing to do, but pain has a terrible ability to make a person feel very isolated. I am one who struggles to ask for help, but I've come to realize how desperately I need it. So I'm asking if you'll help me, in this small way, feel less alone.