Staying Alive by Smartphone 

This essay was originally published in the Los Angeles Times in April. I wrote and edited the piece entirely on my smartphone. 

It has become commonplace to the point of cliché for pundits to explain in worried tones that smartphones can be addictive.

In a recent “60 Minutes” segment, Anderson Cooper interviewed Tristan Harris, a former product manager at Google, who compared smartphones to slot machines because both have a built-in reward system that we find hard to resist — the thrill of pulling a lever and making money versus pushing a button and getting a notification. Cooper suggested that tech companies, by getting us hooked on mobile apps, are “hijacking” our brains.

This argument seems inarguably correct to those who’ve seen comScore reports suggesting that Americans spend more than 70 hours a month on average using smartphone apps, and that the number is growing each year. But lost in the narrative that we’ve become too “dependent” on smartphones — a word that pops up all the time in addiction punditry — is that not all usage is frivolous, or even strictly voluntary. Like many disabled people, I depend on my phone for survival.

At 28, I have been bedridden for more than two years with a severe case of myalgic encephalomyelitis (or chronic fatigue syndrome), a multi-system disease that severely impairs the body’s metabolic features, and has left me unable to speak, eat solid food or properly hydrate my body for months at a time.

For the last year and a half I have relied on a paid caregiver to help me get through each day. She arrives early in the morning and clocks in using a timekeeping app on my smartphone. Because my speech is limited, I type out instructions for her to read or I have my smartphone read them to her using the device’s speech function. This continues throughout my caregiver’s seven-hour shift as I use various templates saved on my phone: “Please fill my water glass” or “I would like to brush my teeth.”

Besides providing food and water, my caregiver also helps me bathe, changes my sheets, brings me new clothes to wear, and even empties and cleans my bedside “bathroom,” all of which I prompt using my smartphone.

This type of communication with my caregiver is especially important on days when my routine has been altered. Occasionally my medications change and I use my phone to tell her how to properly administer the new regimen.

It is not uncommon for something to go wrong. When I woke up the other day, my house was empty: My caregiver hadn’t shown up for work. I felt absolutely terrified as I realized I had no way to eat or drink. After a few minutes of sheer panic, I grabbed my smartphone to notify a family member via text message. Within two hours I had someone at my house to help me. Without a smartphone I would have remained alone, hungry and afraid, until someone happened to come check on me.

My smartphone is also the main way I communicate with my doctors and nurses. I frequently send them emails and text messages with updates about my blood pressure, heart rate, and other vital health metrics I track using various apps. Beyond health care, I use my smartphone to buy food online, as I’m unable to drive to the grocery store.

People with disabilities such as mine aren’t the only ones who rely heavily on smartphones for reasons that have nothing to do with addiction. Some people, particularly those in lower income households, simply cannot afford high-speed internet access beyond their smartphone’s data plan. In fact, according to the Pew Research Center, 10% of all Americans have no other source of high-speed internet in their home other than their smartphone.

Refugees separated by war use their smartphones to keep in contact with family and access the Internet to read news relevant to their situation or tell their story on social media.
And of course there are many people who have little choice but to use their smartphones all day because their employers expect constant contact.

The whole concept of smartphone addiction, or an unhealthy reliance on any technology, is unfair when applied indiscriminately to the population as a whole. It reeks of luxury and entitlement and ignorance of the basic fact that smartphones are just a portal — some people use that portal to obsessively check Twitter, sure, but others use it for basic necessities. I use my smartphone constantly not to get my fix, but to stay alive.

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18 thoughts on “Staying Alive by Smartphone 

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  1. Hi Jamison,

    You might want to write an update to the LA Times regarding Ron Davis’s work he spoke about at last Saturday’s OMF forum (it’s on YouTube now). He talks about his new invention–something the size of a single cell that can be implanted in a person’s body (and last 30 years!). And–extremely inexpensive!

    The device would monitor your blood and send an alert through Bluetooth to an App on your cell phone to let you know if something’s wrong, like “You’re getting Ebola–you might want to limit contact with others.” (Eeeek.) Could be used for just about anything–cancer, glucose levels in diabetes, biomarker for ME/CFS (fingers crossed!).

    Shockingly, NIH just CANCELLED Dr Davis’s grant to complete development of this device because “its not their mission to make health care cheaper”–not a direct quote, but close!

    Thankfully Intermountain Health will now partner with Davis’s lab. He said he will not be quiet about the NIH’s outrageous comment that they don’t care about reducing health care costs!

    Seems like you and the esteemed Dr could team up for an update to your important story in the Times about the critical role of cell phones–and humiliate NIH at the same time!

    Go get ’em, Jamison!

    Best wishes.

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  2. So true, My smartphone and tablet gives me a social life in my loneliness. I’m lucky enough to be able to sit up and use my computer. and walk around at home. But not outside my home, that’s to much. Without internet I don’t even want to know what it would be like… It’s on the social media I find all my help for my ME since the doctors have no clues. Thanks for the blog, a lot of inspiring things to read!

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  3. Nice post. I am sorry for what you are going through. But thank you for writing about your illness and bringing attention to it. I had no idea that something like that could affect someone so young. Much love – speak766

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  4. I didn’t realize just how much your condition had deteriorated. I feel for you!!! I also have severe ME/CFS and have been completely disabled by it for 15 years. I’m just turning 63. I have a question. Have you ever had your adrenal glands thoroughly tested? A homeopath suggested it to me about 10 years ago, so we went through the ‘drill’. It’s common for the HPA Axis in the body to tank or be really ‘off’ in ME/CFS and more so as time goes on. My doctor and insurance covered the ‘snapshot’ a.m. blood level cortisol measurement and the 24 hour urine collection test. But, they just showed that I was at the way low end, but not necessarily in the Addison’s Disease threshold. But, then the homeopath and I started testing the 4 part Saliva cortisol measurement (which tests at 4 different times of day) and saw that I had just under normal morning range, then basically NOTHING for the rest of the day. We kept doing the saliva test and realized that my adrenals were failing over time. The Clymer Research Center doc which I consulted by phone, also said that this is very common in many of his ME/CFS patients. In the end we opted for me to go on full replacement oral hydrocortisone (HC). It took awhile for me to find the right HC dose, at the right times but honestly, Jamison, it made the difference in me being COMPLETELY bedridden as you are and being able to at least get up for 5-10 minutes at a time, fix some food, take a bath, feed my sweet dog, Miss Buttercup (nod to Princess Bride). The Florinef (Fludrocortisone) for Aldosterone replacement (which also tanked) helps somewhat with the POTS, but at least I can also sit up for short periods of time, which is huge as well. So, what I’m saying is that if you haven’t done the 4 part saliva test, I know that money is an issue for you right now. I stopped going to the doctor altogether for this as the site CanaryClub.org uses the SAME lab and you don’t need a doctor’s order and they mail the test right to your home. I’ve used them for many tests at this point, including thyroid and hormones. If you haven’t had this done, I think it’s SO important, that if you e-mail me privately I’ll send you a check for the $119.00 to get the Diurnal 4x Cortisol test done. Normally, insurance doesn’t cover the saliva test so that’s why I’m offering. Blessings…..

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    1. Hi Stephanie, I have had the saliva test done and like you mine started out low and only got lower. I take 10 mg HC in the morning but that’s all I can handle. I’ve also tried fludricortisone but had a bad reaction. Have you had a STIM test for your adrenals? I can’t because you have to go into a lab and I’m stuck in bed but thank you for the reminder about the 24hr urine test. I have to do that still.

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      1. I did have the stim test initially but after my adrenals stopped working altogether and I was tolerating the Florinef it was kind of a mute point. I only take 1/2 a tab a day. And I take potassium (about 100 mg. a day) because the Florinef will deplete it. I also take extra sea salt, which keeps my BP a little higher (I stopped passing out, which was awesome) and that helps the POTS, too, just barely. I had and still have a difficult time tolerating the HC. It overstimulates my heart, as does my Armour Thyroid, but it’s necessary. Finally, we found a compounding pharmacist that put the ‘natural’ hydrocortisone, (which is grown on soy), not synthetic, in timed release formula, in 25 mg. capsules. And the filler is probiotics, even better. It’s Compounding Corner in Sugar Land, TX. The owner, Shannon, is awesome and he’ll ship anywhere. They cost me about $1.25 a capsule. I split the powder into separate capsule doses and take that through the day to save $. At least my Endocrinologist cooperates and just gives me the prescription for the 25 mg. caps, knowing that I split them up. That’s my total daily dose for the most part but I can tell when I need to dose extra because my body temp will fall, sometimes to 96.5 – 97.8. That’s my cue. I routinely take my body temperature 4-5 times a day and if I feel even more crashy. I also have injectable HC for emergencies, but I’ve never had to use it. (Fingers and toes crossed!!) I used to augment with Isocort but Bezwecken took that off the market. It was made with New Zealand lamb adrenals and worked pretty well. I’m just about out of my stash, and I know there are some other (natural) bovine adrenal compounds sold online so I’m going to have to guinea pig myself once again. If you look at the shopping section on the Clymer Healing Research site, it shows what they are recommending for their patients and you can usually find the items on other sites, but cheaper. That’s where I initially learned about Isocort. You’ll see a liquid called ACE. Don’t bother with it. It doesn’t work that well and it’s way too expensive. Mostly just for people with adrenal ‘fatigue’, not failing adrenals. Unfortunately, there aren’t any insurance companies that cover prescription compounded medications, which is absurd. It makes NO sense to me, just a loophole on their part to get out of covering medications. I simply can’t tolerate the synthetic HC in any large doses. About 2.5-3 mg. is max at a time. My guess is that’s what you’re taking? You might try splitting up your HC pills and see if you can tolerate smaller doses, but more times per day. Or maybe you’ve already done that. It’s a complete conundrum for those with failing adrenals as you probably already know. At some point, if your body feels it’s getting ‘enough’ HC, it shuts down your own production and then you have no choice but to be on full replacement.

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  5. Thank you for continuing to bring awareness to the caveats of chronic illness many don’t consider when making blanket statements. I am sorry for everything that you experience daily and for the moments you feel panicked. You are amazing!

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