“Hope to outlast the storm”: How severe ME impacts two brothers

Essays documenting the toll that myalgic encephalomyelitis (ME) has taken on one family, from the new book, What Is Myalgic Encephalomyelitis Like?

By Matthew, Alexander, and Denise Lopez-Majano

A black and white photo of a white man lying in bed with one arm tucked underneath his pillow. He's wearing a sleep mask and a ringer tee, and his face has a stubbly beard. The photo has a slight grainy texture. — Soloviova Liudmyla / Shutterstock

These essays were originally published in the book, What Is Myalgic Encephalomyelitis Like? (WIMEL). They were first written in 2010 by three members of the same family: mother Denise and sons Matthew and Alexander, who developed severe ME in 2005 and 2006, respectively; there has been little change in their condition since illness onset. The Sick Times has reprinted the essays with permission.

Matthew

ME is like being in a raging storm while caught in the open ocean. You can’t think, you can’t breathe, and you are constantly thrown about by circumstances out of your control. You can’t even move in any direction because you have no control over your life. All you can do is hope to outlast the storm without going under.

The happiest times of day for me are the brief moments before fully waking, lying in bed, only aware that I’m alive. I could be anyone, do anything. But then I wake up fully, and I remember who I am, where I am, and the extreme limitations imposed on me by ME. The horrible thing is that I’m not sure how devastating ME really is: I’ve been sick for so long that I don’t know what normality feels like.

I used to have a typical, active life. Now my daily life is impossible to plan, because there are days when getting out of bed seems beyond absurd. I also used to be a straight-A student, but now I can barely concentrate for 20 minutes a day, no more than three times a week.

My life initially seems to be an average teenager’s dream: No “real” school. No social obligations. No need to get off the couch. Just a life of lying back and enjoying the vicarious and virtual life. But the life of the average teenager is my dream: a quantifiable path of learning, the social dramas of first love or first break-up, the little triumphs that seem to make all of life worth living, the small disasters and mistakes that seem to be the end of everything, and the strength and energy that no child can imagine not having, until they have been deprived of it.

ME took away my health, my happiness, my education, my friends, and my confidence.

All you can do is hope to outlast the storm without going under.

Summary: ME is like being in a raging storm while caught in the open ocean. You can’t think, you can’t breathe, and you are constantly thrown about by circumstances out of your control. The horrible thing is that I’m not sure how devastating ME really is: I’ve been sick for so long that I don’t know what normality feels like. Daily life is impossible to plan because there are days when getting out of bed seems beyond absurd.

ME took away my health, my happiness, my education, my friends, and my confidence.

Alexander

My health deteriorated gradually over the course of approximately 18 months, beginning at about age 14, until I became housebound with ME in 2007 at the age of 16.

I taught myself to read at the age of four. At the age of six, I was reading computer troubleshooting magazines — and understanding them. Now, I must read and reread things to try to ensure that I understand them.

I used to be able to remember where I had last seen a book, a game, or a drink. Now, if I set my water bottle down close to the sink to wash my hands, I often walk away, having totally forgotten that I wanted to take the drink back upstairs with me.

I used to empty and fill the dishwasher, change the sheets on my bed, and put away my clothes as some of my responsibilities. Now, each of these activities triggers tachycardia. I have to crouch down in the shower and then lie on the floor after a shower because of a pounding, rapid heartbeat that exhausts me and leaves my brain even more foggy.

I used to attend school full-time, participate in theatre, and swim competitively. Now, I am housebound. I can leave the house no more than twice a week without overwhelming PEM [post-exertional malaise] afterwards.

I want to be more active.
I want to be able to hang out with people.
I want to be able to go to school.
I want to be MYSELF again.

I want to be able to go to school. I want to be MYSELF again.

Summary: I taught myself to read at the age of four. At the age of six, I was reading computer troubleshooting magazines—and understanding them. I became housebound with ME in 2007 at the age of 16. Now, with ME, I must read and reread things to try to ensure that I understand them. ME has left me with memory problems, tachycardia, exhaustion, brain fog, and PEM.

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My sons: A mother’s experience

My sons are severely disabled by ME. They require 24/7 care and are unable to reach their intellectual potential or live independently. Matthew became ill two days after his twelfth birthday in 2005 with a very sudden onset of ME which rendered him immediately housebound. Alexander’s health deteriorated gradually over the course of 18 months until he also became housebound in 2007 at the age of 16.

Looking at my sons, people cannot tell that they are ill. And yet my sons have been housebound all, or most, of their teen years. They have not learned how to drive because the cognitive and physical demands are too great for them to be safe drivers, and they both had to give up competitive swimming, something at which they excelled, because they could not recover from one practice to the next. My sons have never broken a curfew because the only places they go are with caregivers. Because they have severe ME and live in a critical energy deficit, it’s impossible for them to go out with friends, nor have they ever gone on a date.

For years, my sons have not been able to attend school regularly. Even homeschooling can only happen at those times when they can handle it because of the drain that cognitive effort has on their energy. They have been unable to take part in extended conversations, for the same reasons.

For years, my sons have tried an array of different medicines for their symptoms, and, sad to say, most resulted in either negative side effects or were of no benefit to them.

For years, my sons have been incapacitated by this AWFUL disease.

For years, my sons have been incapacitated by this AWFUL disease.

Summary: My sons are severely disabled by ME. They require 24/7 care and are unable to reach their intellectual potential or live independently. Matthew became ill two days after his twelfth birthday in 2005 with a very sudden onset of ME, which rendered him immediately housebound. Alexander’s health deteriorated gradually over 18 months until he also became housebound in 2007 at the age of 16. They cannot attend school, have not learned how to drive, cannot socialize with friends, and have never been on a date. My sons have been incapacitated for years by this AWFUL disease.

About the What Is Myalgic Encephalomyelitis Like? (WIMEL) writers:

The WIMEL writers are an international group of people living with ME and related illnesses who come together to write. Our goals are to advocate and spread accurate, truthful information and awareness about ME, especially to healthcare professionals, students, and policy-makers who may have limited knowledge about the illness.

We meet online to read, write, and discuss the complex experiences of people living with ME. Most members who attend our meetings are severely disabled and are lying down, housebound, or bedridden.

Writers who have contributed to this book reside in Canada, Colombia, Denmark, England, Ireland, Scotland, and the United States and represent a wide swath of severity levels, experiences, and outcomes. Writers have been encouraged to use their native terms and spellings, emphasizing the commonalities between people with ME across the world.

We welcome all readers, regardless of their background, to enhance their understanding of ME through reading about our experiences that highlight both the subtle nuances and the larger, multifaceted complexities of living with ME.

We hope that after reading our book, healthcare professionals, students, and policy-makers may have increased confidence in forming beneficial partnerships with people with ME throughout their careers.

These pieces were originally published in the book, What Is Myalgic Encephalomyelitis Like?, a project completed by the WIMEL writers in partnership with Bateman Horne Center and MEAction. The book is available for purchase on Amazon.

Alexander, Matthew, and Denise Lopez-Majano live in Pennsylvania. As of 2026, Alexander and Matthew are still severely disabled by ME and comorbidities. In addition to being their parent and caregiver, Denise continues to be involved in ME (and IACCI) advocacy.