I thought I was being so clever. After a three-week medical leave from writing, during which my focus went from the latest iPhone iteration to the latest iteration of my disability, I suggested to my editor that to ease back in I’d write about how my iPhone and iPad helped me survive a recent hospitalization.
I’m something of a maven when it comes to how these gadgets benefit people with “special needs” because I have some of my own. Technically speaking, I am a paraplegic, or more fully an incomplete paraplegic with spasticity (L3) which was, until September 13th, just a very fancy way of saying I don’t walk well. More to the point, I don’t feel much below the midsection, and my otherwise non-responsive muscles give the rest of me a good shake every now and again just to remind me they’re still there. But, not since the early stages of my recovery has this label meant anything more than limitations that require creative work-arounds.
I work, drive, parent, and play. I use a wheelchair or scooter for distances greater than a few hundred meters, crutches for less and I need to be extra careful as I’m prone to both falling and breaking and I don’t always feel an injury or symptoms of an illness. But the best parts of my life happened post-trauma, so I’m usually a pretty happy-go-lucky gimp. (I’m allowed, you’re not.)
Nothing will spoil my appetite
I’m also usually chock full of app suggestions for getting through tough times. I confess, that’s why I picked this topic; I fully expected it to be the easiest piece I’d ever write. I was mistaken – sorely. I finally put my finger on it a few hours before my deadline. I was trying to write about third-party apps, or even Apple-specific features, but in truth by the time I called an ambulance nearly a month ago I was in such a world of pain I had no time or energy for the sorts of help and amusement I normally “pack” for medical expeditions. Rather it was basic smartphone (and later, tablet) features that served as a first-aid kit for an my sanity during an extended emergency.
I can’t tell you exactly what happened to me because the doctors can’t fully explain it. What I felt I can best describe as wave after wave of something akin to a Charlie-horse (if the equine were a fire-snorting three-headed stallion from the pits of Hell) starting in my lower spine and running down and oddly even up, the length of my body. I live with pain every day. I’m seriously good at it. But this had me howling and only hearing my screams after the fact when the mortar-fire and lightening in my brain subsided. All the hurting made it almost impossible to think, especially when I hit day three without sleeping at all. And, that’s when the iPhone and the early preparation came in handy.
I had to make arrangements before I left, like childcare and transportation, and I managed it lying prone using the most basic of smartphone features: an almost up-to-date address book, Internet search, text messages, and three-way calling. It’s sometimes very simple features – like tapping on a phone number on a web page and being prompted to dial it with one tap – that become life savers. I was able to get my surgeon’s receptionist on one line and the ambulance service on the other talking to each other, while my mother and sister and I coordinated how we’d manage taking care of my son and other logistics via iMessage.
Once I knew I was going where I needed to go, I grabbed my iPad and iPhone and proceeded with some massive downloading. I made sure I had some recent magazines, a couple of books and cached a few playlists and radio stations for offline listening.
Apps for thinking and for breathing, when you are unable to think
This hospital, like many, has free Wi-Fi but it’s unreliable, slow and entirely blocked within the confines of the ER treatment area (along with cell signals) and around sensitive equipment. Accordingly, having some NY Times Monday crosswords (I use CRUX crosswords with my Times subscription) and easy-to-flip-through glossies are nice to have.
But, frankly I was light-years from reading or even thinking at that point. But music is key to my personal pain management regimen. I keep Relax Melodies Premium on my iPhone for ambient noise, a super simple Pranayama app to help me breathe through pain, Spotify to make very mood-specific playlists, and Slacker Radio to put together larger randomized stations in genres that either help me relax or help me stay upbeat. Don’t forget to bring good, comfy headphones. If you are going to stay overnight, noise-cancelling models are great, but keep a more open pair on for times when you need to hear them call your name. And whatever you do, don’t forget a wall charger. If you can concentrate on images and have the storage space, bring along some videos too and for a prolonged stay invest in a month of Netflix.
I like to think I have every facet of my medical life memorized, but on three days sleep deprivation, in excruciating pain, and with a healthy dollop of fear it can be a little hard to keep it all straight and present it all in the linear fashion demanded. I have the toughest time with prior surgeries and their order, often leave off at least one med when I go by rote and invariably forget to address some of my concerns while answering theirs. The solution comes in the form of any of any number of I.C.E. apps including ICE for Family Pro and Emergency Info for Family.
Apps to have on your phone in case of an emergency
I think every smartphone should have this built-in, and it should be accessible to all emergency workers via some reader scanning universal symbol on every lock screen of every phone, but that’s not going to happen. And, assuming you are functional enough to open the app for the EMTs, RN’s and MD’s, these work wonderfully as easy record keepers. I.C.E. stands for in case of emergency (search for in case of emergency in iTunes) – the good ones allow you to enter very detailed health information and even track your whole family.
It’s also a good idea to keep your most recent scans and test results, along with all your doctors’ and test centres’ contact info stored on your phone so new health care professionals can see what your baseline is and what has changed since you were last evaluated. This can save hours and dollars on redundant tests, or trying to track down old records and help them nail down the problem. All this is probably overkill if you don’t have a chronic and/or degenerative condition, but I can’t tell you how grateful everyone is when I present them with a long but well-ordered list they can scan as needed rather than listen to me ramble off the same facts only semi-coherently. Use reminders or any to-do app to make sure you don’t forget to mention symptoms or ask your questions and add new questions to your list as they occur to you.
Expanding your comfort and entertainment options with the iPad
While the iPhone is an invaluable tool to get through triage and prepare you and your doctors for longer-term care, the iPad is your best friend to get you through the healing process. I got some world and local news from Stitcher Radio. Then I touched base with my “social” world through Facebook. I can’t tell you how oddly comforting the commiseration of both close friends and the people you just collect in your online life can be when you are in distress. And, what a great distraction memes and short videos are when you can’t focus your eyeballs for more than a few seconds at a time. I brought a pillow holder for my iPad so I could rest it on the bars of my scooter or on my lap propped up, and I put on a season of a favoritie TV show I found on Netflix (Law & Order, Season 1) and got my first zzz’s in the warm embrace of blue light. I’m not even sure who wheeled me back to bed, but I awoke still clutching my iStuff.
The next day my mother and sister were able to come in from Boston and New York respectively. They arrived after a day of arduous travel to find they were locked out of the ER for another hour or so, but as luck would have it I was right by the door when they got in and a lone iMessage came through from my sister. Just two words jettisoned me towards the door: “We’re here.” Our reunion was emotional for them, reduced me to a sobbing wreck of childlike relief and gratitude and I could swear I saw a few other folks well up just watching us.
After that it was all about waiting, and while I never did muster the concentration for a magazine much less a book, my guests certainly did. I was more than happy to drift in and out listening to quiet nature sounds or The Grateful Dead (don’t miss these great deadicated apps!) while they perused my more interactive content.
But the devices weren’t done helping. In the course of 10 days and two trips to the hospital I was prescribed, not kidding, 13 new medications to go on top of the five I take regularly and supplements. No one meant harm, but when my pharmacist saw the whole list he informed me that had I taken everything they sent me home with I likely would have OD’ed. I had three different narcotics, two completely contra-indicated muscle relaxants, and the calcium and iron regimen I am on is not a good mix with the antibiotics they gave me. Fortunately, I had already figured that out. By keeping my own records, either typing them into my iPad or recording instructions for later and doing some basic research, I easily discovered that I was being heavily over-prescribed by too many well meaning doctors and just said no to bad calls. I was even able to offer good alternatives. I read medical studies, product monographs, and I found a forum with a section dedicated to not only my exact type of partial paraplegia, but to the specific symptoms I was having and was able to get recommendations from other patients, several of which proved invaluable.
Don’t forget the big picture (and I’m not referring to screen size)
I wish this story had a happy ending. It will, in time, but as I type this, the pain has migrated from my spine to my hip, but is only marginally more bearable. For all the high tech imaging and high end specialists the best anyone has come up with for a cause is either an infection I had that got out of hand because I didn’t feel it, or that the increased degeneration and subsequent herniation of the vertebrae and discs above where I was previously fused are encroaching on nerves. The first should have cleared up with the antibiotics by now and the second is inoperable for me. Pain – hopefully to a lesser degree, but always a fair amount – is just part of my life.
If there is one thing shared by chronic pain management and mobile technology it’s that they are both in their infancy. There is no app for effective stem cell therapy or to tell my brain to shut up already. But I’m here writing today because I am an eternal optimist. Rather than look at what we can’t do yet, I prefer to admire where we are or even were two years ago.
We’re all so jaded now, comparing the Galaxy S III to iPhone 5; debating ideal screen size, OS philosophies, content ecosystems, and high-speed data networks. But for five minutes forget brand loyalty and just marvel at how far we’ve come.
I already owed the iPad and to a lesser extent the iPhone a great debt. I was in something of a stupor when I was no longer able to work out of the home and my son started school. First the iPad let me explore old passions in new ways that were a lot easier to manage. Granted, travel can’t be replaced by great travel apps and oil on canvas feels very different from a stylus on glass. But being able to be creative or indulge my wanderlust on any level from a sofa in my living room was revelatory. Then, my enthusiasm and writing degree got together and turned my self-indulgent little tech addictions into something profitable and more important, purposeful.
Mobile technology may not be a miracle exactly, but until I get one, it’s the next best thing.