My BiPAP is a source of great comfort for me. I hate that this is true, but at this point, it is only on my BiPAP that I can sleep. So when I get on it during the day, as I often do when a caregiver is on a lunch break, I tend to doze off in my wheelchair like an old man in front of the TV after a long day at work. I miss crawling into bed and arranging my head on the pillow, lying on my side, stretching out my arms. Sleeping is so different these days.
Sometimes I don’t even realize how tired I am. But I don’t get very good sleep at night, even if I’m not asking for help adjusting my body. I often lie awake thinking about the things I need to do (and trying not to add Drink Water or Go To The Bathroom to that list.) In the morning, I’m up early to help Scarlett get ready for school, or at least to encourage her via various versions of threat/reward/eventual apathy.
After she leaves, I try to get things done. It’s increasingly difficult. I’d love to sit down and write, but I don’t really have the energy. Or the time, because I am also working on taxes, her birthday party, an assignment I took on for the school auction, and general communication with friends and family who care enough to reach out and check on me, leaving me feeling happily obligated to reply in a timely manner. I only sometimes succeed, but when I do spend the morning emailing and texting, it zaps my energy for hours.
Which leads me to my time on the BiPAP. I might bring my phone with me to listen to music or podcasts, or I might bring my iPad so I can read a book, but inevitably, I will lean back and my eyes will close, as my body realizes that is finally finally breathing correctly again, and I can truly relax. I can’t believe this is real, that for the greater part of each day I am not getting enough air. I’m doing fine, and I manage it all with medication, including my important nightly wine regimen, but what really helps is getting on that machine and feeling it do the work that my diaphragm is supposed to be doing.
I’m not afraid that I can’t breathe. Which is weird, because it’s certainly a scary idea. But actually, I am mostly annoyed. It really gets in the way of everything to feel tired, to feel breathless, to have to spend time attached to a machine. So last week, my nurse and a respiratory therapist came to my house to show me a device known as the sip and puff.
“I hate this thing,” the respiratory therapist says, as she opens a plastic bag and pulls out a bunch of tubing.
I appreciate her honesty, but I was hoping for something rather lovable. I am out of luck. According to these experts, there is only one company that makes the device for the sip and puff, and they did it very badly. The RT shows me what she means. First, they hang my BiPAP from the back of my wheelchair. Then they try to find a place to attach a large black claw to the side of the wheelchair, out of which comes a long black spine that can best be described as the exoskeletons of 30 beetles lined up and feeling uncooperative. A plastic tube must fit through the ebony spine, which means that each beetle needs to be personally adjusted and then the whole thing straightened, and then pushed around and towards my face, where I can theoretically lean forward to get a breath of air whenever I need one.
The RT starts putting the tube through, and it rips. So the whole exercise is off, because that is the only plastic tube that we have.
“If only this were a device that was aimed at curing erectile dysfunction,” I say. “Because then it would probably work really well.”
My other idea, which I share with the women, is to challenge a nearby high school to come up with a better design, although it later occurs to me that we could challenge a nearby preschool to come up with a better design and they probably would. There are a lot of reasons that I hate having ALS, but somewhere in the top 10 is the fact that it never seems important enough to the world to make sure that our assistive devices are top-notch, or even passable.
The RT then tells me that many people create their own devices to allow the tube to reach from the BiPAP to their mouths. Necessity is the mother of invention and all that jazz, but this pisses me off. Of course we have to figure it out for ourselves. She mentions something about using a microphone stand. I try to remain positive. I tell her that I will give all of this some thought, that it is not an emergency at the moment, and that I would like her to take her stick of beetles away. There are no hard feelings. Everyone in the room hates the device.
I wheel into my bedroom, where I’m hooked up to my mask. It’s nap time.
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we used to live down the street from the Smith on Highland. We saw their three children grow up, etc. We just moved a stones throw away to N. Riverside. You are an inspiration to many and we wish you well. God bless you. Elaine and Sam Abbinante
I meet lots of people the world ignores. They’re poor, old, or minorities. They have some kind of illness or injury that doesn’t get a lot of attention (money). They don’t have erectile dysfunction or heartburn. Or maybe they do, but those are so far down on their list of problems that it doesn’t matter. But they have things like cervical cancer and alcoholism and PTSD and arthritis. And they go home, out of sight. And we don’t have to see them. We don’t have to see their pain and their falls and the fact they can’t afford their medicine. And because their problems aren’t our problems, we don’t fund assist devices, real research and consequential care.
What politicians earn your votes? What do they think of this issue?
I am sorry to hear about the breathing difficulty induced fatigue, a tiny bit selfishly because I just stumbled across your site and love your writing so much.
Have you considered submitting to the Modern Love column in the New York Times? I think they would snatch you up in a second. And a lot of those pieces seem to spring board into memoirs. Just a thought.
I’m currently being treated for cancer, lots of gruesome symptoms and treatments. I’ve got two kids. I understand what it’s like to sometimes feel defined by a condition, and so I just want to say, you are an awesome writer. The real deal. Please don’t reply, save it for the memoir.
I too am saddened by your fatigue because text is the only communication we have in common. Though about 20 years younger than me, you are my mentor. Your voice is still being expressed so beautifully every time you post. We both know it but I need to say it – ALS sucks.
Sarah you are inspiration to me, you have made me realized how precious life really is, Just want to thank for your writing, I am with you in my heart and thought, ps, tell Scarlett hi
Sarah, have you heard of the device a doctor came up with that is like a pacemaker for your diaphragm? My brother Scott was the first patient to have it put in and it works in place of a machine. It allows him to breathe much easier. You can look up the article in the Boston Herald. My brothers name is Scott Murphy. Maybe this can help you too? I love to read your blogs. My brother is the one that has suffered with ALS for the past 13 years, but, he doesn’t have your talent for writing what everyone else is feeling. Hope you get some real rest tonight. As always, prayers.