Dear all,
It’s nice to know that you are on the other side of this note. Thank you for being here with me. It’s soothing to imagine your beautiful faces turned toward me.

I am doing well in this moment. Even though I’m nursing a cold with ginger tea, even though the possibility of dying keeps tugging at my pants, I feel fortified. For the last two weeks I was blessed with a pair of two-day getaways. First my girlfriends and I spent time perched over the Youghiogheny River. Then my partner and I hunkered down in a wood and stone cottage in a snowy forest. It is soothing to be in the forest and next to a river when my soul feels frayed. It is comforting to be in the company of beloveds when we feel afraid.

As you might know, I started the full doses of the Myasthenia Gravis meds last week Monday. I can report that I feel slightly better. The biggest improvement is in my mouth. My tongue feels less like steel, and I don’t get too fatigued by chewing. My hands feel better too. I’ve not dropped so many things! I imagine that I experience less fasciculations (involuntary muscle twitches), even though I feel them now as I write.) My ability to swallow liquids doesn’t seem to improve, but there is still a week left.

February 6 will be two weeks on the meds and I’ll correspond with my neurologist.
On February 16 I get an MRI to check if structural damage in my neck could be causing this.
March 20th I have an appointment with the ALS specialist in Pittsburgh.

The big thing that is not changing with time or meds is that my energy is zapped. I pant like I’ve run two miles when I’ve only mopped my bathroom floor. Last week I went back to work. The first day I went in for half a day and I was productively there! The second day I went in, I got there and needed to nap. Then I tried to work again but was too tired. I ended up working for just two hours. Some nights my sleep is a moth-eaten sweater. Others nights I sleep twelve hours. I am not keeping up with responding to your kind messages— sometimes I just feel too tired.

Having so much less energy and needing much more rest is a new set of realities to grapple with.

– First cognitively: I have such a drive to live and do and experience things while I have the gift of being able to!

– Then relationally: I can’t keep my promises as surely as I used to. I can’t be counted on for a 7pm grocery run, or to walk you to the bus at 6:40 in the morning.

– Then, practically. Here is my (starting) list of practical learning edges:

1. Generate income
I can’t work full days. I’m wondering about getting more consulting/coaching work that pays well by the hour. I’m wondering how our company “Fit” can be fine with me fading in this moment.

I really want to keep writing (I’m taking a creative writing course this Spring!) and doing things that bring me joy. I’m thinking about other artists who gather financial support from their community through a platform like Patreon. I wonder what might be possible here.

2. Build a web of care
It’ll be good for me to ask for help in a more organized way. I don’t know what that will look like, but I wish to do it in a way that strengthens the web of care in our community. I wish to do it in a way that helps us heal from isolation, from the curse of “do-it-all-yourself,” from the fear of being the one that needs help. I wish to learn about disability justice, about mutuality and sustainability in long-haul care work.

3. Receive help
Recently friends came over to help clean or cook. Their help was so helpful! I loved having them here! And yet I felt soooo tired when they left, because a) I want to visit and b) I don’t feel like I can say, “So glad you’re here, I’m out of spoons, please excuse me.” This too is a learning edge: feeling worthy of receiving help when I can’t reciprocate your kindness with my presence.

Okay. My ginger tea is cold. I’ve been writing for two hours. I think I need a nap! If any of what I wrote sparked ideas, hold onto them. I intend to reach out with more targeted requests in the near future.

Again, thank you for being here. It feels so good to have you close by.

Hanna