Death & Texas

Among Mayo’s mail comes a letter from the Royal Neurological Hospital. Opening it she reads that an appointment has been made for her to see the in-house speech therapist. A second speech therapist, and a second opinion. Unlike her friend this one takes no prisoners. She dismisses any talk of anxiety as so much mumbo-jumbo. “I assure you,” she says, “that the only thing damaging your throat is MND.” She asks Mayo if swallowing is a problem. Mayo admits that it is. The speech therapist ticks some boxes. Mayo meets Jackson after the appointment at the cafe in the British Museum. He fetches her a bowl of tomato soup.

“That woman made Ming the Merciless seem like Pope John XXIII,” she writes. “According to her the depredations I have already suffered are irreversible. My voice will never return.” She puts her head in her hands. Then she writes: “Without hope what is there?” She has more tests, and another consultation in the Neuromuscular department. Jackson leaves the car in the parking lot under Russell Square. Crossing Southampton Row, a mere hundred metres from their starting point, Mayo suddenly starts gasping for breath and grabs Jackson’s arm. Leaning against the window of an Italian restaurant she writes with shaking hand: “I’m having a panic attack.”

The Consultant is all smiles as he opens his door to admit both Mayo and Jackson. “I have read your book,” he says to the former. “I don’t think there’s a doctor worth his salt who hasn’t. What an eye-opener it was. Now, whenever I have bad news to deliver – not an uncommon occurrence within these walls, alas – I pause for a moment and ask myself, ‘How would Dr Mayo handle this?’” He holds his breath. “I have to tell you,” he says, “that is exactly what I am thinking right now.”

Mayo cups her hands to her ears, as if to say, ‘Get on with it’. “The good news,” says the Consultant, “is that your extremities are unaffected. But other indications clearly confirm my initial diagnosis: you undoubtedly have MND. For the moment it is confined to your throat. And for some patients that is where it remains.” Mayo raises her hand like a traffic policeman. “How many?” she writes. “Most of them?” The Consultant looks at Mayo with an expression of surprise and nods absentmindedly. “As you are aware,” he continues, “the muscles in your throat control more than your voice. Without them food and drink can no longer be swallowed safely. Your dramatic weight loss indicates that this is already a problem.” Mayo raises both hands, then writes: “No, no, no.” Followed by: “The problem is anxiety.” “I have no doubt that you are extremely anxious,” says the Consultant, a little flustered, “but for the moment I am more concerned with issues I can address, aspiration for example.” Turning to Jackson he says: “I am not talking about social climbing, you understand, but the possibility of chest infections if food or drink ends up in the lungs instead of the stomach. Has Dr Mayo had any bad coughs recently?” “She’s just getting over one,” says Jackson. “In that case,” says the Consultant, “now is absolutely the right time to introduce Percutaneous Endoscopic Gastrostomy: PEG for short. I’m sure Dr Mayo has already familiarized herself with the procedure, so I’ll keep the explanation brief. What happens is that an endoscope is inserted in the stomach, a likely place found in the lining, and a small incision made from the outside. All that remains is for a tube to be fed down the mouth, through the stomach, and out the belly. What is visible is no bigger than a pencil. The whole process takes less that half an hour. Afterwards liquid feed – containing all the animals, vegetables and minerals a person needs – is delivered with a syringe, though there are other methods. Once a PEG’s in use the risk of chest infections is minimized, weight loss reversed, and quality of life greatly enhanced. What do you say, Dr Mayo?” But Mayo has been sitting for some time with her hands placed firmly over her ears. “I know it’s a Rubicon to cross,” says the Consultant, turning once again to Jackson, “and I’m not saying Dr Mayo needs to do it today, or even tomorrow. But it’s as well to do it soon, while her respiratory muscles are still strong. At least get her to think about it.” In the hospital’s Victorian vestibule Mayo has another panic attack. “This hospital is my Alamo,” she writes. “And the Consultant my Santa Anna.”

Over the next few weeks the panic attacks become more frequent, and Jackson begins to fear that they are not panic attacks at all, but symptoms of weakening respiratory muscles. He becomes a proselytiser for the PEG. It seems self-evident to his layman’s mind that a nutritionally sound body would be better...