“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?' The post “Hope to outlast the storm”: How severe ME impacts two brothers first appeared on The Sick Times .
Matthew and Alexander Lopez-Majano Soloviova are two brothers who have been severely affected by myalgic encephalomyelitis (ME). In 2005 and 2006, respectively, both brothers developed the debilitating condition, and since then, their health has remained largely unchanged. In their essays, the siblings describe how ME has turned their lives into an endless struggle against a relentless storm.
For Matthew, ME is like being tossed about in a raging storm while surrounded by the open ocean. He cannot think, breathe, or move without being thrown off course by circumstances beyond his control. He can only hope to survive the storm without succumbing to its overwhelming effects. Matthew finds brief moments of happiness before fully waking up, when he is unaware of his limitations imposed by ME. But as soon as he wakes up, he is reminded of the extreme restrictions he faces in his daily life.
Matthew once enjoyed a typical, active life filled with school, friends, and extracurricular activities. However, now his daily routine is unpredictable, as getting out of bed often seems like an absurd task. Before his illness, he was a straight-A student, but now he can barely concentrate for 20 minutes a day, three times a week at most. ME has robbed him of his health, happiness, education, friends, and confidence.
Alexander, the older brother, experienced a more gradual decline in his health over approximately 18 months. He became housebound at the age of 16. Despite his physical limitations, he is determined to be active and regain his old self. Alexander yearns to attend school, spend time with friends, and resume his love for swimming. However, the severe nature of his ME makes it impossible for him to live independently or engage in most social activities.
Both brothers require constant care from their mother and are unable to live independently. ME has left them with memory problems, fatigue, brain fog, and post-exertional malaise, which makes even the most minor daily tasks exhausting. Despite the challenges they face, Matthew and Alexander remain hopeful, determined to outlast the storm of their illness and reclaim their lives.
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