The Hum in My Arm

The Hum in My Arm — the AI-made song and lyric film made from this essay (captions available). Watch on YouTube →

People who start hemodialysis at a center learn a new shape for the week. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) says it is usually three times a week, for about four hours each time. Add the ride there, the weighing, the needles, the ride home and the tiredness after, and a good part of the week now has an address.

Tuesday, Thursday, Saturday, the chair beside the glass,
I know the tape, I know the beep, I know how slow they pass.
The morning nurse finds the vein first try, the radio plays low,
the man two chairs down calls the ball game, every pitch, blow by blow.

It is easy to hear that as a sentence being handed down. Four hours, three times, every week. Someone does the sum out loud and gets a number that sounds like a life being taken away in slices.

I want to say something else about those hours, and say it carefully, because I have never sat in that chair. What I can do is read what the people who treat kidney failure have written, and notice what it leaves room for.

Here is one thing it leaves room for. Many people on hemodialysis have their access in the arm, often an AV fistula, where an artery is joined to a vein so the blood flows strongly enough for the machine. NIDDK says to check the access every day, and to let your dialysis center know if you cannot feel the vibration over it. So there is a small ritual: two fingers on the arm, feeling for the hum. If it is there, the road is open.

Before they hook me to the hours,
before the long machine,
I put two fingers to my arm
and listen in between.

That hum is a strange, good thing to build a song around. It is the sound of a body and a treatment working together. It is not the sound of something being taken. It says you are still here, and that you are still the one doing the checking.

The hours in the chair belong to you. They are not a waiting room outside your life. People read in those chairs, and sleep, and pray, and watch the same show as the person two chairs down. They learn the name of the nurse who finds the vein on the first try. They argue about baseball, call a grandchild, stare at the ceiling and feel nothing much at all. Some sessions are just long and hard, and you get through them. That counts as living too. A life does not have to be bright in every hour to be a whole life.

None of this makes it easy. Hemodialysis is not a cure for kidney failure; NIDDK is plain about that. It asks a lot: the limits on salt, on some foods and on liquids that your dietitian talks through with you, the dry weight, the tiredness, the days you would rather do anything else. People get angry. People grieve the body they had. That grief is real, and nobody needs to be argued out of it.

Some days it’s long and nothing more, and I just get it through,
and that is living too, my love, that is living too.
The salt, the water, the weight they keep, the tired that follows after,
I still want the wedding in the spring, the porch, the cards, the laughter.

But the arithmetic that only subtracts is missing something. It counts the hours given and forgets what they are given for: the porch on the day off, the wedding next spring, an ordinary Wednesday. The machine keeps time, but the time is still yours.

If you are beside someone on dialysis, there are ways to help that do not need the right words. Drive, sometimes. Sit in the waiting room with a book. Ask what the hardest part of the week is, and believe the answer. Do not tell them how strong they are as if strength were the only thing they were allowed to feel. And ask about something else, too: the show, the ball game, the grandchild.

A few practical things, in plain words, from the same NIDDK guidance our free page passes on. Always tell your care team about problems with your access; NIDDK says access problems are the most common reason someone on hemodialysis goes to the hospital. If the access is warm or red, if you have a fever, or if you cannot feel the vibration, call your dialysis center the same day. Bleeding from the access that will not stop, chest pain, severe trouble breathing or fainting: call 911. If it all becomes too much and you think about ending your life, call or text 988, at any hour.

Our guide at scarletbeast.com/hemodialysis sets out what NIDDK says about the treatment, the choice between a center and home, the access and the problems, and it builds a list of questions to take to your team. It saves nothing. It is not medical advice, and no doctor or nurse has reviewed it. Your own team knows your body; a web page does not.

The song is called “The Hum in My Arm.” Its narrator is a character: someone in a chair by a window three afternoons a week, who puts two fingers to their arm before every session and feels that the road is open. The narrator does not pretend it is easy. They just will not hand those hours over to the machine.

The machine keeps time. The time is yours.

There’s a hum in my arm, the road is open
The river knows the way
The machine keeps time, but the time is mine
Every hour that I stay

For people on dialysis, and the people beside them

• What NIDDK says about hemodialysis, the access, the problems and the questions to ask: Hemodialysis (free, saves nothing). Choosing a treatment: Kidney failure, Peritoneal dialysis, Kidney transplant.
• Salt, liquids and food: Eating with kidney disease. Paying for it: Paying for kidney failure treatment.
• Getting there: When you have no ride to the doctor. For the person who drives and sits and waits: Caring for someone.
• Access warm or red, a fever, or no vibration: call your dialysis center the same day. Bleeding that will not stop, chest pain, severe trouble breathing or fainting: call 911. If you are thinking about ending your life: call or text 988.

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