Hello dear people,
Marc here. We’ve had updates and writings in progress for days, and suddenly it’s Friday afternoon. Here is a quick summary, some things to read and look at, and a promise of more to come.

How is Hanna?

The time in Montana was wonderful: a nest of loving family, progress on illustrations, and ventures into an astonishing winter landscape. More about that below.

Through it all and through the week since returning to Pittsburgh, Hanna notices her energy is lower and her muscles are weaker. Some things take longer than they used to—putting on socks, clipping nails, opening bottles. That sounds difficult, right? Pretty scary. More on that below as well.

Details
– Hanna’s EMG test, the one specifically aimed at determining whether this is Myasthenia Gravis, is rescheduled for the first week of April.

– The first visit to the ALS specialist is just a little over a week away.

On the site: first answers to the question, “How can I help?”

There’s information on the site about ways people can support Hanna’s needs through food and finance. See the new How Can I Help? page.

Coming soon: resources for all of us who find this sort of thing difficult and confusing, and suggestions and sign-ups for other practical ways to support Hanna.

Photos and a poem

The first thing is this gallery of photographs and short videos from our time in Montana. Have a look.

The moments in those images have been vividly present with me through the week. This morning my coffee time reading was the poet Jack Gilbert. His poem A brief for the defense is a defense of joy in the midst of a world of sorrows.

Now there’s three of us at the table: myself, The Monster (introduced in the 14 February update, if you’re new to these messages), and Jack Gilbert. I poured a second cup and scribbled the following, imagining it as a comment on the Montana photo gallery.

– – – – – – – – – –
What you cannot see, dear gazer,
is that the woman walking toward those buttes
and the fiery peach-colored storm
on that blue horizon
is facing the death of her dreams
and the death of her body—
not for sure but maybe
and maybe is pain aplenty.

What you do not know, beloved,
is that the woman dancing on the plain
had trouble setting up the camera;
it kept falling in the snow
because the wind pushed
with troublesome strength
despite her cheerful intentions.

She felt that moment,
that vast cradle of grass,
the wind being itself so strong,
the light from dreams
falling on sage and wheat
and her.

The wind didn’t mean to be cruel.
She was in its place,
and there in the chapel of distance
on that ancient prairie
what else can one do
but dance?

Jack Gilbert says
we must risk delight
even though we have seen the terrible
and know that worse is coming.
He says we must have the stubbornness
to accept our gladness
in the ruthless furnace of this world.
He says to make injustice
the only measure of our attention
is to praise the Devil.

I celebrate the stubborn gladness
in these photographs
and take it as my instruction.

Marc Rettig, March 2023, Pittsburgh

– – – – – – – – – –

Thank you for your care and attention, the love you hold whether or not you can find its expression. More from Hanna soon.

Marc