With all of the bedrest I have had lately, I’ve spent a lot of time sitting and thinking. A few of the things I have realized:
1. I am not good at accepting my limitations. This relapse was almost guaranteed, I think. I could see its beginnings right after the fire: the stress of the fire and the dissolution of SG kicked up symptoms that I should have immediately addressed, but I dismissed them because I was too busy. I should never be too busy, but I forget that this body is breakable, is vulnerable, is stronger than my willpower: I forget that my disease will conquer me and my plans. I forget this because I don’t want to remember it.
2. I have no real idea what my limitations are. It doesn’t help that in this disease the goalposts are constantly shifting: what was perfectly fine to do yesterday may not be okay to do today. Parts of my body that functioned last month may not function next week. I say that I’m new at this, but in talking to other people with MS I learn that while we get better at learning our subtle body cues the mutability of our illness keeps us all permanent beginners: there is no real graduation to Expert Level in MS.
3. I don’t have a choice when it comes to self- care. Self- care is not the same as self- indulgence. It’s funny: I have been thinking that for the longest time and I’ve never realized it. Self- care is not being lazy, or being self- indulgent: it’s healthy. Ridiculous. I’ve been driving myself into walls- through walls- for far too long. Self- care will also not make me too weak to fight my MS, something I’ve been concerned about since my diagnosis: I’ve been so afraid that if I took a moment to stop, my disease would begin to chip away at my body, and that I wouldn’t be able to re- coup my strength. There can be a balance; I just need to find it.
I purchased a wheelchair in the interest of self- care. I’m not happy about it, but some days it does come down to saving the energy I have: do I want to be walking around and only have 2 hours worth of energy, or do I want to be in a wheelchair and have 6 hours worth of energy? This is probably one of the healthiest decisions I have made in a long, long time. It doesn’t sit easy, and I still haven’t used it, but I have the chair, and that’s a start.
4. I don’t need to do everything all at once. I have a million things going right now, and I love them all, but I need to pace them; this is part of self- care. I have been living each day as though I might not get another- eating life by the fistful. There’s a beauty to that, but it burns me up, and threatens to burn me out too fast. I can’t sustain that with this body, which breaks my heart, but is the truth. I can’t sustain that. I need pacing, and grace.
5. Help is possible. I’m learning this one, which is so hard, and insanely painful. “Just ask for help,” is something I hear more and more these days, and I’ve been fighting for the words to describe how privileged this phrase sounds to me. I know it comes from a good place, a loving place, a helpful place, which makes it even harder, but “just ask for help” is frequently said by kind and gentle people who had parents who helped with their homework. I had a friend recently tell me they’d only seen me sick a few times, that they’d only seen me use my cane several times out of pride. This struck me as an example of my lack of vocabulary for illness, need, and vulnerability. I have no way of asking for help. I don’t know how that is done, how that is negotiated between people. I have done this thing, as I have done most everything since I was sixteen, alone: I don’t know how to ask for assistance. How do you tell someone you need something? How do you ask, and not fall completely apart?
I am surrounded by the well- intentioned and the loving who tell me to “just ask” for help if I need it, but it is the asking part that is still so foreign to me. I frequently don’t even know how to identify when I need help, because the idea of asking for help isn’t something I understand. I don’t ask my husband for help.
I’m learning to accept help. I am even learning to ask for it, although I’m awful at it, and I’ll frequently struggle with a task for far longer than I need to, expending loads of energy on something stupid, like opening a jar, when there really is no way my hands are strong enough right now to perform that task. I recently had my friend Auggie over for beers and had a quiet moment of personal triumph because I asked him to open the bottles: I am that bad, people, but I am getting better.
One of the best things about the Solumedrol experience was that it took me completely out of my work. I needed to relinquish all of my tasks- absolutely everything- and I became completely useless for weeks. I needed to rely on my family and friends: I needed to ask for help. I surrendered, and it wasn’t the end of the world. Everything worked. There were problems, and they were fixed. There were squabbles, and people made up. The world went on turning, and I was okay. People came out of the woodwork to help me, and while outside of work I wasn’t able to say what I needed, I was able to take what they offered, and that was good.
Having Sam administer my infusions was like that- like asking for help, being vulnerable in a new and terrifying way. In case you haven’t noticed yet, vulnerability isn’t my strong suit, but I’m not alone in that one- most of us like to feel strong, especially when we aren’t. There was this beauty is what we did, in my sitting down with my arm extended, in his calmly, competently setting up my line each morning, in setting up the infusion, in him flushing my port post- infusion. This is what love looks like, I’d think, dizzy, covered in blankets, grateful, holding his hand. Being that scared, and feeling that exposed, and doing it anyway: we didn’t have a choice, but it brought me to a new place- one in which I hope I’m better at asking for and accepting help.
6. I really, actually, truly have MS. I know I’ve talked about it, and written about it, and I even have all the MRIs to prove it, but it is easy to forget this. Part of the forgetting is because I don’t want to remember it: it’s not the worst disease in the world, but it’s still a pretty crappy hand to be dealt, and not something you want to dwell on. Unfortunately, in order to be healthy, I do need to keep it in mind. The other part of the forgetting happens because when my medication and self- care is working, I feel relatively normal, and I begin to think, “Well, maybe it wasn’t as bad as I remember. Maybe I am really okay. Do I actually need all this stuff, all these accommodations?” WRONG. WRONG WRONG WRONG WRONG WRONG, Sarah.
I have multiple sclerosis. That isn’t going to change, and it isn’t going to go away. There is no cure, and I will have this until I die. This is my reality, and it is something I can’t forget; I will have to remember this and manage it for the rest of my life. It is okay. It is okay. Nothing will change this, and it isn’t okay because I can make my life into something that looks like a non- disabled life; it’s okay because a disabled life is perfectly fine. It doesn’t look like a lot of other lives, but I like my life, and I’m tired of fighting for something that is silly, because isn’t the reality in which I live. My reality is good. Better than good, my reality can be honest and raw and true if I stop trying so damned hard to push myself past my own limits.
I still have no idea where those limits are, but I have a wheelchair now, and I am beginning to learn how to ask my husband to help push me through rummage shops to find a pair of antique binoculars, so at least I can start looking for them now. It isn’t much, but it’s a start, and I can even start with a little bit of style.