A painted collage of people's inner state and outward gestures

Writing: "How cared for do you feel?"

Hanna is part of a writers group at Carlow University, called “Mad Women in the Attic.” She wrote this piece as an exercise in what’s called a “hermit crab essay”—repurposing one form of writing to house the ideas from another. In this case, Hanna uses the familiar form of a survey as the container for a more challenging kind of expression….

Section I: Multiple choice questionnaire: How cared for do you feel?

Thank you for taking time to fill out this questionnaire. We know that facing something like ALS can feel devastating in many ways. This disease not only necessitates costly medical treatment, it also requires the support of caregivers and equipment.  Your need for support will increase as you slowly lose your vital functions and ability to communicate and move freely. You’ll need help for things you’ve always been able to do on your own: reaching, touching, holding, walking, dancing, speaking, chewing, swallowing and, if you choose to go onto a respirator, breathing.

This questionnaire will help us understand how supported you currently feel. Please choose only one answer per question.

1. You are at the very beginning of this journey and many people feel shocked that you might have a terminal illness. Friends from all the chapters of your life are reaching out to you. Do you feel:

a) Held by a large network of care, and trust that it will always be there?

b) Afraid that you will disappear from the front page and into the margins of people’s lives, like the war, the melting glaciers, and in some circles, the exploitation of black and brown people—topics worth mentioning over a mimosa, but not worth getting involved in?

c) Afraid that this illness will deplete your core support group and strain relationships, leaving you more vulnerable?

2. Many of your friends repeat a similar sentiment. There are variations: “It’s so great that so many people support you.” “You are so strong, and I wish you continued strength to navigate all that is coming your way.” Do you wonder if:

a) They need you to be strong enough to handle this, because they either don’t want to or don’t have the capacity to get involved?

b) They need to imagine you are well supported so they feel absolved from showing up?

c) You might really have what you need for this journey?

3. When you sent your friend a letter telling him that you might have ALS, he didn’t respond. Do you:

a) Believe that you have moved from being an asset to being a liability and accept that you might not hear from him again?

b) Believe that he is processing and might choose to support you still?

c) Refrain from trying to make sense of his silence and trust that there is enough help?

4. Your friend writes, “May all the healing light be with you. Sending love!” And minutes later a card from family friends arrives saying, “You are in our thoughts and prayers.” Do you believe:

a) They genuinely care and will be there for you when you need them most?

b) They prefer sending ephemerals like light, love, thoughts, and prayers over offering their help?

c) You can’t know for certain?

5. When you tell a friend about your health struggles, and for the rest of the visit they continue the conversation as if your illness doesn’t exist, do you:

a) Think this might be too much for them to handle and excuse their behavior?

b) Accept that a core part of your experience needs to be rendered invisible in this friendship and question if this is what you need now?

c) Risk telling them how much not being seen in your totality hurts?

6. If a friend offers you an interest-free loan to cover your sudden medical expenses and loss of income, do you feel:

a) Excited that community care could replace dependance on financial institutions?

b) Genuinely grateful for his generosity and care?

c) Deflated because your ability to earn money is dramatically diminishing?

7. It has been six weeks since you said you will ask for help, and yet, you haven’t sent out the meal train or spreadsheet asking for help. What holds you back most is:

a) The belief that you are not doing it right–you could be more clear, you could ask less, there might be a better way to ask?

b) The fear that people won’t show up because you are peripheral, and they are too busy. Modern survival depends on individual income and status; your illness is in the way.

c) The fear that inviting more people in might add to feeling out of control and/or be more work than just doing it yourself?

8. Why are you so afraid of not receiving help when you need it?

a) You can still taste the disappointment when people who were supposed to care for you repeatedly failed to do so. You spent years becoming self-reliant. This illness makes you vulnerable to those same old injuries.

b) All of this feels enormous. Colossal. Out of your control. The cruelest thing ever. You don’t want it to crush you completely, you need the comfort and kindness of others.

c) You know that your brain has a negative bias. Could your fear be wired in survival biology and not rooted in reality?

9. Your fears of not being cared for in your disability are not unfounded. We live in a world where there is often insufficient support for those in need of care and their caregivers. Which example feels most relevant to your own experience of not being there for others? Was it when:

a) You didn’t sign up for your neighbor’s meal train when she went through chemo?

b) Your felt worn out and then disengaged from your friend experiencing bipolar disorder?

c) You only now notice the lack of disabled folks in your circle of care?

10. What keeps you from genuinely being there for others? Is it that you:

a) feel compelled to do more and be more so that you (hopefully, one day maybe?) feel like you belong and have enough? Is all this hustle a jealous lover?

b) experience empathic distress—you feel overwhelmed by all the needs you see?

c) don’t trust that healthy dependency exists? You have curated a manageable existence, defending against the mess of genuine human relationship.

11. When you confess your fear of becoming a “bag of bones that depletes my community,” and your friend holds you saying, “You are loved, caring for you is an honor.” Or when his mom calls and says, “This is not your fault. And we will be here every step of the way. You are not alone in this.” Did you cry because:

a) You imagined being loved even when your care is taxing, even when you have nothing to offer in return?

b) You were overcome by the possibility of not giving up on each other, even when it gets excruciatingly difficult?

c) For a moment the dream of the beloved community where no one is abandoned felt real inside your body?

Thank you for taking the time to respond. You can expect our recommendations within one to two weeks via postal mail.