Severe ME Communications
Updated: Dec 20, 2022
A guide to effectively and compassionately communicating with someone who has Severe or Very Severe Long Covid or Myalgic Encephalomyelitis (ME). From Galen’s forthcoming book about caring for her son, James Strazza, with Severe ME.
Extreme sensitivity to sound, plus the inability to process or tolerate speech from others, create one of the greatest challenges to caring for a person with Severe ME or Long Covid. When speaking to someone is actually harmful, and they can barely tolerate your presence in the room, learning how to communicate is urgently important.
The person with Severe ME or Long Covid is suffering to an unimaginable degree with a neurological condition. Understanding their mental state will make the hard work of communicating properly much easier to accept and to master.
Because of the suffering in their body and especially their brain, they don’t have the bandwidth to think clearly, let alone to manage our feelings as we’re trying to care for them. “Survival mode” is a ubiquitous term, useless in their case, so rather than use any familiar term for an unfamiliar condition, I’m going to help you understand their mental state with an analogy.
The High Wire
Think of an acrobat performing in the circus on the high wire. They’ve got a unicycle up there. The rubber tire has been removed so the frame of the wheel can balance on the wire. Can you see the unicycle? Now see the acrobat.
They’re not riding on the seat. There is no seat. The acrobat is balancing upside-down, using their hands to peddle the unicycle across the big-top tent. Their arms are quaking under the weight of their body. Their core is trembling with the effort to remain vertical and balanced. They’re facing downward, seeing only the sawdust circus floor way below, knowing they could lose their balance, or their resolve, and crash at any moment.
That’s the unimaginable situation of your severely ill loved one and their mental state—far beyond what we think of as "survival mode." Picture that, although you see them lying silently in their bed. They are the acrobat performing this high-wire act, using all of their focus, resolve, mental strength just to stay on the wire. Now you can understand how absolutely critical it is for nothing you do or say to knock them off balance.
They're the Boss
Now that you know the mental state they’re in, it should be easy for you to accept the difficulties in the rest of this section. Your first, and perhaps most challenging, job is to let them be the boss of you. Don’t argue, debate, reason, contradict, correct or dismiss anything they tell you. Just leave it there on the table, with love, or pick it up and deal with it as requested, but don’t challenge it. I could explain how important this is, but if you’ve done a good job of absorbing the high-wire act they’re performing, you already get it.
I don’t mean that they need to manage their health and tell you what to do. As you are managing their health, their disability application, their medical providers, their meals… which, unfortunately, is all on you, you are also managing your relationship with them. This is just as hard or even harder than all the rest.
When I say they’re the boss, I mean that if they say the toast is not crispy enough, or is too crispy, if the napkin smells, if the cup is too full… they’re the boss. Redo it, take it away, pour a little out… without bitterness or complaint. It’s rough, I know, but they’re the boss. In their suffering and isolation, they have lost all control of their lives. They might become obsessed with any control they can have. If they need to control how crispy their toast is, just give them that. If you can take a breath and accept that, in this one thing, this little piece of toast, they've grasped for control when their entire existence is at the mercy of this nightmare disease, it will be easier for you to redo the toast with love and grace.
Yes or No
James is doing better most days now, but for a long while, and on a bad day, I am not allowed to speak at all. He’ll start a sentence with, “Yes or no,” then go into a statement or a question that he wants a response to. But my response has to be binary: Yes - meaning the statement is correct, or No - meaning the statement is incorrect.
There’s a very big problem with this approach. It limits brain pain because he can’t process a reply from me, so that’s great. However, he very rarely follows the “Yes or no” demand with any question or statement that is that black and white. I’ll give you some examples, but of course your situation will be very different from ours.
“Did you get my “X” medication? Yes or No?”
Well, X is the wrong medication. Technically, “No” would be the correct one-word response, because that’s not what I got. Or, should I say “Yes,” because I got the medication he was actually waiting for?
If I had corrected the medication name, by responding, “Z,” that would use up my one word, but did not answer whether or not I had gotten it. On days like this saying even two words instead of one could earn me a description of just how horrible his brain already feels, and how much agony any words at all cause him. It is a reprimand I do not want to bear yet again. I would usually choose an inaccurate response of “Yes” or “No,” and leave it at that. In this case, “Yes” would be the correct incorrect response.
“Yes or No, Why is it so hot in here?”
Obviously that’s an open-ended question. Open-ended questions that he requires a Yes or No answer to are typically answered based on an assumption I have to make. I’m assuming he’s asking me whether it’s actually hot in here, or is he just hot. I would respond, “Yes,” if it was hot in there. I would respond, “No,” if he was just feeling hot, but it wasn’t actually hot. In either case I’d then do something, not say something, to make him more comfortable.
With these two examples you can see my challenge of communicating with James when he can’t tolerate any conversation at all. Sometimes I just shrug my shoulders. Sometimes I gently shake my head in a "No" manner, with an expression that tries to communicate that this can’t be answered this way. These are the simplest ways to communicate that I just can’t give him a one-word response.
Conversations on days he can tolerate them, or Yes or No responses on days he can’t, aren’t required for the majority of caretaking tasks. I bring the food, I place the napkin on his chest and lay the plate down on him. I remove the trash can if it’s full, I replace the urinal on the chair if it’s used. No need to talk or make any noise at all to do these things. Everything is done in respectful, kind, intentional silence.
I can’t open packages, struggle to find things, or do anything in his room that is either noisy or chaotic. His room is a sacred, holy place of calm. I remove the basket of pills, the tray of shaving supplies, anything that needs to be fussed with goes out of his room and is returned in its improved state.
It took time and patience, a lot of mistakes and a lot of love, but we survived our learning curve with only a few meltdowns.
Once or twice he had a meltdown when I expressed my frustration. I had not yet learned the grace I’ve since found. When I could not control my reactions to him, I’d say something that hurt his feelings. But I paid for it as much as he did. A meltdown for James meant crashing off the high wire into the sawdust and staying there for a day or two, broken and grieving. I would have to feed him soup and hold up a cup of water for every sip he needed.
But more than the “punishment” of having to care even more for him, the worst part of letting out my frustration to James was knowing that he was absolutely helpless to go for a drive, punch his pillow, or yell at me. All he could do was quietly whimper, tears trickling down his cheeks, arms shaking, as he, more vulnerable than ever, quietly said something like, “If I can’t trust you, who else do I have?”
That cut deep. I knew, but he was not seeing, that I had sacrificed everything for him and he could absolutely trust me. But at that moment, he could not trust me with his vulnerability. I had betrayed that by conveying my frustration. My broken heart eventually learned how to not cause him meltdowns any more.
I used to have meltdowns too.
On my meltdown days I’d try, trembling, holding back my tears, to leave his room silently and gracefully. But as soon as I’d quietly closed his door, I’d practically run to my room so I could throw myself on my bed, sobbing. He’d hurt me badly. His words stung, cut me, and I couldn’t defend myself to him. He’d used superlatives like “Always,” or “Never,” to describe ways I had failed him. But I knew all of the other ways that, just that day, I had excelled at lovingly caring well for him.
Over the past three years we’ve both grown exponentially at communicating, respecting, and recognizing the other’s feelings in the moment. James eventually began saying, “Please,” and “Thank you.” I could not have asked for a better gift. In spite of his suffering he was thinking of me. I never required those words, how could I? There he was, on the high wire, balancing horrific pain and isolation. I couldn’t require anything of him. I let love do my talking for me. Eventually, after each meltdown, he grew to trust me again, in spite of past failures.
And I grew to accept, to surrender to, my role as his caregiver, lessening the sting of any difficult criticisms. Actually, now they just roll right off of me. One of my greatest gifts to him is that I’ve become glorious teflon. Nothing negative sticks now, not even the superlatives of what I “Always” do wrong, or “Never” do right. It’s really a superior way to live.
James can’t tolerate lists. For some reason they hurt his brain more than other forms of speech. I can’t say the three things I’m picking up for him at the store, or list the vegetable options for dinner. I have to find ways to communicate without listing anything. It can be done.
No need to narrate what you’re doing. Just do it. This was very hard for me to learn. My instinct is to say, “I’m giving you your night pills,” or, “This is mango. I don’t have any more peaches.” But there’s no need to explain why you’re doing something. Just do it. You wouldn’t be doing it if you didn’t have a good reason. They’re on that high wire right now, with you in the room. Giving them reasons, explanations, and other unnecessary extra words, just make the high wire even more difficult. It piles unnecessary stuff onto that precarious unicycle with them.
Once you’ve mastered not talking, and you can calmly move around your person with grace and generosity of heart, you’ll begin to alter your approach to communication in general. If your loved one can tolerate a few words, your few words will become, more and more, the right few words. Your ability to read each other will grow. Your conversations, especially if they’re rare, will leave each of you with a feeling of satisfaction, not frustration.
Every Severe ME and Long Covid sufferer is different. Some can’t speak and would benefit from a small deck of customized flash cards. Index cards could have simple messages like “I’m thirsty,” “I’m hot,” “I’m cold,” that your loved one can use to communicate with you. You could include their most common ailments like Vertigo, Headache, Restless Leg… so they could share their current condition and receive your empathy, even if there’s nothing you can do about it.
If you need to do something for them that they have not asked you to do, find a way to ask permission first, even if you can’t speak. For example, point to a blanket before you put it on them, so they can decline if they want to. If you are allowed to speak to them, ask “May I…” or “Should I …” before doing anything they have not asked you to do.
If you want to show them your love, you could ask,“May I kiss you?” “May I hold your hand?” “May I rub your feet?” These displays of affection might be welcomed or could be harmful, if they’re in a very sensitive state and unable to tolerate touch. But don’t assume that’s the case. Go ahead and ask. Let them know you want to show them love and kindness. Even if the answer is No, it will mean a lot to them.
Because conversations are painful to his brain, James and I usually communicate via text message on our cell phones. My phone is his lifeline to me, so I always have it on me and I always have the ringer on. I mute all text messages except for his when I go to sleep. I stay in touch with him using brief text messages like, “Are you hungry?” “I’m going to walk the dog,” “Your kava came.” When I enter his room I don’t take it with me, in case someone calls and it rings.
James always uses talk-to-text, rather than hitting letters with his fingers. He speaks to his phone and sends me the message. As a result of this method, there are many challenges with his phone mis-interpreting what he’s trying to say. I have to use my imagination very often and ask myself, What could he be trying to say to me right now? Or, What word would sound like that, even if it doesn’t look anything like it? Electrolytes are usually conveyed by his phone as electrons. Kava as coffee. Usually, I can figure it out. If not, I shoot back a note for clarification, or simply “?.” So he can look at what he sent and clarify.
When James is in a very bad way and cannot use his phone at all to text me, he uses a portable Call Button. It took some work to hunt one down, but I found one that, once set up correctly, works very reliably. It uses radio waves to send a signal from his button to two “ringers” that remain plugged in. One is in the kitchen and the other one is in my bedroom. He presses the Call Button rather than texting if he needs me urgently or, as I mentioned, if looking at his phone at all is not possible. He has two of them. One in his bed next to him on a long ribbon so he can easily find it in the covers, and another hangs from the cart next to his bed, in case he loses the first one.
Have a Seat
I keep a chair in James’s room for myself. If he wants to talk, I’ll pull the chair up to his bed and sit and listen. It’s on wheels so it doesn’t make any noise. This is better than standing there, which gives the impression I’m on the way out, or tolerating being there. When you have a seat you’re saying, “I’m here, I’m not going anywhere until you want me to.” It can make me slightly anxious when I have a lot to do, but sending the message that I’m not trying to get away from him is super important. I take a moment to become more present and let go of everything in that other dimension.
Sometimes, when he’s not doing well, I just sit quietly to be with him. He might be depressed because he just lost a friend or someone on Instagram bullied him. He might be in physical pain, but he is still able tolerate my presence. The time I spend in that little chair is a privilege, because sometimes, when he needs me most, he cannot tolerate my presence. I have to deliver a meal, do whatever he needs, and leave right away.
When I’m in the chair I can reach forward and hold his hand, if he allows me to, or reach over and rub his feet. I can listen with my full attention. I can carefully choose a few, efficient and effective words to say to him. Or simply nod my head in recognition of the feelings he’s expressing at that moment. Just being there with him, sitting in the chair and giving him my full attention, can be the most loving communication in that moment.
Your Super Power
Finally, and most importantly, you are telegraphing your feelings whether or not you realize it or intend to. Your body language and the expression on your face speak louder than words. Before you enter their room, every single time, pause. Become present in the moment. Clear away distractions. This is your time with them. They don’t see a parade of friends. It’s you. Be exactly the way you want to be for them.
Think of their door as a gateway to another dimension where you have the super power of communicating without a single word. Use your super power for good with your peaceful presence. “Enhance your calm,” is a line I love from the ‘80s movie Demolition Man. Bring only your “calm” into the room with you. Don’t let the rest of your chaotic world in.
Take a deep breath, open the door just a crack for just a moment before you go in, so they are aware of your entry without knocking (please don’t knock), and after taking that beat, step gently into their world with peace and grace.
It’s not complicated. It’s not even difficult. But until it’s natural for you, take a moment to consciously remind yourself, “I’m entering another dimension.”
All human beings are unique. Our everyday communication styles are very different, and the ways we do, or choose not to, express our thoughts and feelings are as varied as the flowers in a field. But these everyday communication differences fall away in the presence of extreme suffering. Severe Long Covid and ME suffering pares down communication to its most raw, fundamental state.
Your main communication becomes the "vibes" you give off. Your super power is to control those vibes, to radiate calm and love no matter how you felt before you walked through their door. With your super power you will transcend the obstacles to communication that this cruel disease creates. As they are suffering, perhaps in constant pain, perhaps with severe brain fog, they will still pick up and benefit from what you convey with your super power.
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© Galen Warden