The Day My Phone Broke: A Profile In Digital Dependency

I’ve heard people say they’re going to “unplug” for vacation, or “disconnect” for a while. I’m in my 50’s and I remember when there was no Internet of Things, let alone an Internet. You couldn’t just say “Okay Google” or “Hey Siri” and have your every fleeting wonder satiated with decisive, immediate answers. “Back in my day,” I can say while actually waving my cane in circles since I use one for my MS, “questions might never be answered and we just lived with that knowledge or looked it up in our Funk and Wagnalls,” which I have so graciously Wikipedia’d for you younger folks. See what I mean? Exactly how long did you need to wonder what that meant? Or how many elderly people did you quiz to find out?

So when someone says they’re going to take a digital vacation, I imagine myself doing the same thing and know deep down it could never happen. My smartphone and I are unified as one until death do us part, which, it turns out, was exactly what happened.

I feel my blood pressure rising and have a general sense of impending doom at the mere memory of just last week in the effort to retell the story…

I was a latecomer to the smartphone world of apps and text messaging and constant updates and time-sucking games, preferring my flip phone because “I don’t get it – I just need to make phone calls. Why on earth do I need all that other crap?” I really didn’t get it. My sister kept saying “You’ll love it! Then we can text each other and stuff.” My response was always “why would I do that when typing is more complicated that talking?”

But when the universe insisted my analog phone wasn’t welcome any more, I succumbed. I bought a Samsung Galaxy S3 and that marked the moment my digital addition began.

That was in 2012. Do you know how I know? I just picked up my Google Pixel XL and asked when that phone came out. I didn’t even miss a beat. There were a couple other phones along the way but when I got the LG G3 in (Googling it again) 2014 I finally had a screen big enough for my aging eyes and didn’t feel compelled to upgrade again.

I just had a conversation with someone 2 weeks ago about the fact that I still love my phone and it enhances my lifestyle perfectly. I can’t see buying another phone until this one craps out.

In retrospect, and not without a little paranoia, I wonder if that is code to tell the ever-listening, omnipresent Google to detonate a digital time bomb and force the new purchase?

However it happened, my LG G3 decided to not connect to Wi-Fi or Bluetooth but also wouldn’t stop trying no matter what I did. The endless loop of failed attempts drained my battery with a quickness.

“What good,” I argued to myself, “is a phone that won’t connect to the Internet??” Low how quickly I’ve changed my stance on “a phone is just a phone”. As it turns out, my phone is actually the hub to every other part of my life. I was still wrestling with the idea of how much I had changed my digital outlook and fighting the urge to replace the phone when next thing I know, the phone powered off and would not come back on.

At time of death, my phone was my lifeline to more than I was consciously aware. Its passing triggered  a cascade of events that directly impacted my own health and that of my family members.

Between the time my phone died and my new one was in-hand the following happened:

  • I missed 2 doses of my medication because my Medisafe app wasn’t reminding me to take it. This wasn’t a Flintstone’s vitamin we’re talking about — it was my MS disease modifying therapy that you cannot miss more than 10 straight doses or you have to be restarted in a hospital setting with a 6-hour observation period due to possible cardiac events.
  • My 93-year old mother missed a dose of her Eliquis (blood thinner) she takes for A-Fib
  • I stopped walking with my Fitbit as much because I couldn’t simultaneously see the updates on my phone and get a deeper dive than the device screen shows
  • I quit tracking my food in MyFitnessPal because exercise from my Fitbit wasn’t syncing and logging food by going to a computer required too much effort
  • Because I wasn’t exercising as much and didn’t have a clue about calorie intake, I gained 2 lbs.
  • I couldn’t use my Iris app to turn the lights on at night along our walkway
  • I overslept and was late for work because I didn’t have Alarm Clock Plus waking me up
  • I missed important calls
  • I stared out the window a lot, wondering how I ever became this dependent on digital technology

It was easy to become so reliant on my phone. I tell myself it’s okay because I have short term memory loss due to MS, so this is a mental crutch that’s helping me, much the same way my cane helps me not trip and land on my face. But would I be so comfortable being this addicted to my phone if I didn’t have a legitimate (in my mind) excuse?

The new phone arrived not a moment too soon – a Google Pixel XL – and I did what any new phone owner (addict) who has just upgraded does: I spent the next couple of days learning the phone, installing apps and wallpapers, fine tuning the settings, and trying out every single ringtone until it was qualified to be the successor to the phone that ran my life, may she rest in peace.

So I’m not going to untether from the Internet any time soon. We are back on schedule with our medications, I’m waking up on time, I can once again light the pathway to the house at night, I’m exercising again, I’m tracking my calories and I’m feeling like I’m once again in control of my life.

As it turns out, that was a lie all along. LG was controlling my life, and now that baton has been passed to Google, until death do us part – and I hope I outlast my Pixel XL.

Running from Matthew: Part 2 of a 2-Part Hurricane Recap

This is the second installment of a story I innocently assumed could be told in 2 parts. Fair warning, this could go on for a long time, so don’t let the deceptive title fool you. We’re barely getting started here, but if you think this is dragging on, you should have lived it. That’s all I can say.

You can find part 1 here.

After a sleepless night in my car with 3 cats, outside the sleazy motel where my elderly mom and son were sleeping, I had finally dozed off from sheer exhaustion when there was a tap on my window. Startled awake, the cats began yowling and I rubbed my bleary eyes to see a most welcome sight. My sister, with coffee. She had slept in her car with 4 dogs the night before and we were both in need of caffeine.

screenshot_2016-10-28-06-31-59I checked my phone to see my request to book the 6-stall horse barn for our evacuation-vacation from Hurricane Matthew had been approved. Despite hotels being booked for hundreds of miles around in all directions, apparently nobody was thinking of AirBNB. We couldn’t believe our good fortune. The host sent me a message to wait until around checkout at the no-tell motel before we headed her way, an hour and a half from our current location and six hours from home. She needed some time to get things freshened up for us.

While we waited, drinking coffee and killing time feeding and watering our animals, I kept an eye on my weather app and text messages. We had made it out ahead of the category 4 storm that was quickly barreling up the coast like a freight train, but my oldest son, his pregnant wife, 13 year old daughter and 2 year old son were staying behind in their block home near the river in Jacksonville. My brother and his wife stayed behind, too, in Orange Park, a half hour inland from Jacksonville. 

Just because we’d be safe didn’t mean we weren’t still terrified for the others. 

camerazoom-20161008184426859My daughter-in-law, Cecilia, texted to ask for the address of the horse barn. She was trying to convince Mark to evacuate. I was so relieved. I quickly told her how to get there and urged them to head out soon. I hadn’t even cleared it with the host, but at this point I’m thinking I could lay the back seats down in my Nissan Rogue and sleep there just fine if it meant knowing more members of the family would be safe. When I told Melodie, our host, she offered up a converted horse trailer to solve the problem of where we’d all sleep. Now, a “converted horse trailer” and “loft over a 6-stall horse barn” don’t really sound like how I pictured a dream getaway, but considering the alternative — weathering a Cat 4 hurricane in the middle of old-growth oak trees right on the river — it sounded like a slice of tranquility to me.

The Google Maps lady took us to a tiny town called Panacea, right on the Gulf of Mexico, where the road twisted and turned, and every home was built on stilts, towering in the air. When my cell phone dramatically announced “you have reached your destination” we were arguably out in the middle of nowhere. Surrounded by fenced-in fields bordered by woods, a small, cheerful wooden structure up ahead beckoned to us.
CameraZOOM-20161008184759500The first thing I noticed as we pulled off in the grass to park were the horses. Four of them watching us from their place in the pasture as they swatted the flies with their tails. They seemed curious, but not especially thrilled to see us. My sister and I got out of our cars just as Melodie and her husband walked out of the barn to greet us. I had been in a panic on the phone when we were working out the details of Mark and his family also joining us, so the first thing our host did was walk right up to Lorraine and give her a big hug saying she was so happy she could help us and not to worry, everyone would be safe here. She then stepped back, looking at me, as if waiting to be introduced. That’s when I realized that my sister looks more like my AirBNB profile picture than I do. We all had a good laugh when we figured that out.

Melodie gave us a whirlwind tour, first of the horse trailer, which was a deceptive name for a really nice, decked out mini travel home, complete with kitchen, bedroom, dinette, and 3/4 bath. “Don’t use the stove as we need to get more propane, and if you have to go number two, use the loft toilet. It’s an eco-friendly toilet.” I was about to learn what she meant.

We all helped Mom, who will be 93 next month, get up the stairs where she would remain until it was time to head home. Every step she took seemed perilous as the handrail was a flat, wide, weathered board designed only for looks and efficient splinter delivery. 

IMG_20161008_183938Top of the staircase was a screened in porch filled with plants and decorated in laid-back quaint country charm. Everywhere you looked was either a pair of spurs, a plaque telling you to “forget the horse, ride the cowboy”, or a horse blanket. From the porch, we entered the loft through a sliding glass door, right into the main living area. Hardwood floors and rough hewn paneling radiated welcoming rustic charm. The first thing I did after getting Mom situated in an overstuffed armchair was to roll up all the throw rugs and stash them along the walls. She and I have a hard enough time picking up our feet without obstacles. 

The place had everything we could ask for — from dishes, glassware and pots and pans in the kitchen to a supply of bathroom amenities rivaling that of any 4 star hotel — except for maybe a conventional toilet. Not since I was 12, when we first moved aboard our 42-foot junk rigged schooner, Gazelle, have I had to have a toilet “explained” to me.

20161009_102032“You put the lid up and this lever works the plate that covers the mechanism. Push the plate aside, do your business, and then paper goes in this metal pot, not in the toilet. Push the lever again to cover things back up and that’s it,” Melodie explained as I stared at her incredulously.

“Oh, and I almost forgot. You have to feed it every 10 or so uses,” she said. And those 15 words rivaled any sentence Stephen King ever labored over trying to evoke sheer terror. I’m going to put my bum over something that apparently eats human waste and has fertilizer in lieu of an after-dinner mint?

It was at the end of our 4-day stay that I found out only a select few of us were actually using this beast. I just remember thinking that everyone seemed to be really forgetful and having to drive to town a lot for “something I forgot, be right back”. Others seemed to enjoy long walks in the woods a little too much.

In defense of this eco-friendly toilet, once you got past the idea of no water being involved and having to “feed” it, it really wasn’t so bad. There was absolutely no odor. I’m assuming that was what the old time-y stove pipe looking thing was for.

20161009_102113The rest of the bathroom was really awesome, complete with a copper tub that came straight from Mexico.

Toilet aside, the biggest inconvenience was actually the fact that there was no TV or internet access. I was staying in touch with the outside world through text messaging and reading the weather alerts on my cellphone. At one point the National Weather Service was warning residents of our home area to expect “complete and utter annihilation” and that the area could be “uninhabitable for weeks or even months”. Hard to enjoy a vacation stay in a loft over a horse barn right on the Gulf of Mexico when you thought you might be homeless after checkout time.

So in pursuit of more information, I went on a quest to purchase a mobile hot spot. The really “knowledgeable” guy at Walmart who insisted I should get the Verizon hot spot versus the one for Straight Talk (even though AT&T is my carrier) would wind up costing me more valuable time since I had to return the next day to exchange it. All the while my stress was building and back at the horse barn we were all pretty much manic. One minute screaming at each other, and the next we were all either laughing or crying…or both.

My brother Dave and his wife probably had it worse than any of us. A large chunk of his extended family was in the path of Matthew and they only knew what they learned through sporadic text messages. All the while they could see it on the news, churning up the Florida coast, headed straight for us.

Stay tuned for the next installment I’ll affectionately call part 3 in the 2-part series. With no editor to reign me in, apparently I’ll never finish this story. Besides, I never claimed to be good at math. 🙂

Running From Matthew: Part 1 of a 2-Part Hurricane Recap

This is the first in a multi-part recap of my family’s evacuation from Hurricane Matthew in October, 2016. 

When you live in Florida, you keep a watchful eye on the weather from June 1st through November 30th during hurricane season. But despite the spaghetti models and (ice cream) cones of uncertainty, there are always last minute changes to a storm’s projected path and strength. So when Matthew formed near the Windward Islands on September 28th, the idea of fleeing northeast Florida was not even on my radar.

Floridians are used to hearing the weathermen work themselves into a frothy frenzy over tropical storms. Obviously lusting for the drama a category 3 storm and above might bring, I blame them for why people choose to stay behind when potentially life-threatening storms really are bearing down on us. Crying wolf repeatedly leaves us all thinking “It’s just another newsroom hype story. It will blow over or peter out just like all the rest of the storms usually do.” After all, it has been 52 years since Hurricane Dora hit this part of Florida, and not many of the current residents recall the devastation first hand.

161004-hurricane-matthew-cr-0517_1090abcfc45fe31e5b9f0e73c31f9a90-nbcnews-fp-1200-800So when my 92-year-old mother was watching the storm head this way on the Weather Channel, worrying as she is wont to do, I didn’t give it much urgency. It was only weeks before that Hurricane Hermine was predicted to pass over the area coming at us from the Gulf. I had taken precautions like making sure the generator was tuned up and we had diesel. I had stocked up on canned goods, water, batteries and flashlights. We were ready, but Hermine passed us by as little more than a windy thunderstorm. Boarding the windows had been overkill.

Matthew was different. When the storm made landfall in Haiti and eastern Cuba on Oct. 4 as a Category 4, the devastation being televised was terrifying. This storm demanded attention. Mom’s fear was both palpable and contagious. So two days before Matthew was predicted to be closest to us, we had to decide. Do we pack up and leave, or do we stay and ride it out?

Seeing someone so fragile and elderly looking to you with fear in her eyes, wanting you to protect her, you do what your gut tells you to do. You pack up and start heading west as fast as your car can take you. Hotel reservations be damned — we’ll figure that out later. It was 7PM when we had 2 cars loaded up with clothes, pillows, blankets, snacks, electronics, bathroom supplies, flashlights, and 3 cats in 2 cages because 2 of them are mortal enemies who would fight to the death.

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I drove one car and my son, Alix, drove the other. We headed out in the dark and rain to go get my sister, Lorraine, and her dogs an hour west of us.  The plan was to keep going west, but the problem was that directly across from us there are no big towns on the Gulf. We’d have to turn north and head for the panhandle. It seemed like we drove forever. Mostly because it was night, we were in unfamiliar territory on miles and miles of two-lane highway that connected tiny towns far apart. It rained for hours, and we were running out of gas. Every station we found had plastic bags on the pump handles — the universal sign that they were sold out.

At midnight we found fuel and took a break to Google hotels within a hundred mile radius. But after calling around it quickly became apparent the nearest vacancies were in Pensacola, over 6 hours from us still. We were exhausted, scared and frustrated. Her dogs were tired of riding and my cats would not quit howling. We had to find a place to stop for the night. We drove another hour to an Econo Lodge in Perry, Florida. Lorraine went in to see if maybe by some miracle they’d had a cancellation. No luck. But they did say we could park in a grassy area off their parking lot and sleep in our cars. Oh boy!

We parked and Lorraine walked her dogs while I tried to clean the mess my cats had made of their cages. Riding in the car had literally scared the crap out of them, and for six hours we’d been been living in a cat box. The smell was overwhelming.

Lorraine was gone for a while, but when she came back she was dangling a key in my face. “Pack up, we’re driving across the street. I got us a room!” It was the biggest dive I’ve ever seen yet ironically they didn’t take animals. I’m pretty sure they had hourly rates. Mom and Alix would sleep in the 2 beds, on top of the covers, fully clothed. Lorraine and I would remain sentinel in our cars, not willing to leave our pets unattended.

I did not sleep a wink but passed the time on Facebook and Twitter and texting with friends.

It was during those wee hours that I got a message from my older son, Mark, who was still in his house in Jacksonville with his pregnant wife, kids and dogs, fully intending to ride out the storm. He wanted to know where we were. I explained the situation and lamented on the lack of available hotel rooms. I told him I wished we could find a place that took animals. Then the light bulb FINALLY went on…

screenshot_2016-10-16-11-55-10I had just stayed in my first AirBNB a couple weeks prior when I went to MedX in California. I had such a wonderful experience I swore I’d never stay in a conventional hotel again. But when you are evacuating ahead of a category 4 storm, you don’t always think clearly. Your mind goes back to what it has been used to for years. I only ever checked on hotels and never gave AirBNB a thought.

So at 3 AM I asked Mark to go online for me and find AirBNB listings within a hundred miles, currently available, and pet friendly. That’s how we discovered Melodie and her loft apartment over a 6-stall horse barn. It would be the turning point that changed everything. We went from panic and fear to having a plan. I booked the place from the AirBNB app on my cellphone sitting in front of that seedy hotel with the cats howling and my legs in a permanent cramp. Then I waited to see if the host accepted. By 8 AM I had confirmation and a plan. Our salvation lie an hour and a half away in a Gulf town that could not have been more aptly named. By checkout time at the no-tell motel, we were on the road, heading for a place called Panacea.

 

Definition of panacea:  a remedy for all ills or difficulties

Read part 2, where the saga continues.

Into the Darkness & Out of My Life

I was rushing to make my connecting flight at Charlotte, only to get to the gate and discover the flight would be delayed by 30 minutes. Passengers crowded around the gate area, reluctant to give up the spot they had staked out in anticipation of the boarding call.

In a line of red seats designated for handicapped, I found an open spot. I had done well, throughout the MedX conference, proud of myself for attending “cane-less” after working for the past several months to strengthen my legs despite MS trying to rob me of mobility. But after the first leg of my journey home caused my spasticity to flare up, I could barely move. My fold up cane came out of my carry on, propping my tired bones up as I hobbled to the handicapped chair.

The half hour went by and the sign had been updated. The flight had been delayed again. Now we weren’t boarding at 8:30 or 9:00 but at 10. The collective indignation and frustration over plans being ruined was palpable. Everyone sighed and moaned and complained in unison. I tried my best to count my blessings. Be happy where you are if you have no other choice. Anger helps nothing.

Then the sign changed again. The flight would now be boarding at 11PM. As the announcement was made that the flight crew for our plane was grounded in Orlando, waiting out terrible thunderstorms, the lady beside me started to shake uncontrollably. Until that moment I hadn’t given her any thought. She was just another warm, miserable body beside me, unhappily waiting out circumstances beyond our control.

But the shaking got worse. I began to think she was having a seizure. I turned to her and put my hand on her arm and asked if she was okay.

She shook her head. “I’m an alcoholic,” she said. “I can’t do this. I was supposed to be there by now.”

“Where are you going?,” I ask. 

“Inpatient rehab in Jacksonville,” she confided, “they said they could save my life. I’m scared. I can’t do this. I can’t make it,” she sobbed, “I haven’t had a drink since this morning.”

Having lived through the loss of two ex-husbands — both due to complicated circumstances that began with addiction — I felt like I “knew” her. Like I knew this ravaged, haunted, struggling soul. I felt like I had to help.

“Are you traveling alone?”, I ask. She nods while wiping away tears with trembling hands.

“Do you want me to keep you company?”

Her eyes light up as if I just threw her a lifeline. I go up to the counter and asked if they could switch my window seat farther back with whoever is in the middle seat beside hers. The ticket agent asks if I knew her. I said I didn’t but she was going through DTs and didn’t need to be so alone.

He checks out the seating chart and tells me, “you’re in luck! That seat is empty and you can just move there.”

I tell her I’m going to be riding in the seat beside her and we start to make small talk. I knew the drill from going through this before in my life. Distract them and calm them. Try to help them focus on something that matters most to them. 

“Do you have any family?”

“No, but I’ve got two dogs and I really miss them a lot.”

“Who is taking care of them?,” I ask.

“My neighbor.”

Then she grabs my hand and says “I’m so happy you’re going with me. I can’t do this alone. My name is Roberta, but people call me Candy”.

Just as the flight crew arrived at our gate and boarded the plane, Candy told me she thought she might throw up. She was getting clammy and still trembling. “I haven’t had anything to eat all day.”

“Do you want me to get the paramedics?” I ask.

“No,” she whimpers, “I’ll never get there if I get stuck here. Those people in Jacksonville are going to save my life. They’re waiting and I just have to make it…” her voice trails off.

I ask the ticket agent if he can sneak onto the plane which had been waiting at the gate all along, and get Candy an airsick bag.

“I’m not allowed to do that,” he stated flatly.

“I just thought it would be easier to clean up than having her vomit all over the carpet, but whatever.”

He disappeared and was back in a moment with a big trash bag, a bottle of water, some ice and a can of Gingerale–all for Candy. I thanked him and he said “Don’t thank me, thank the flight attendant. She’s the one who sent all this up.”

Then a few minutes later they began pre-boarding the people who needed a little extra time. I got up with my cane and hobbled over to the jetway. I looked back at Candy and waved. “I’ll see you on the plane,” I said, “this nice gentleman is going to bring you down in a wheelchair so you don’t have to try to walk.”

I found our row and settled in, but I didn’t bother with the belt, since Candy would be here in a moment and she loves to sit by the window.

But everyone boarded and Candy never came. I worried about her the whole way home. Wondering what happened in the 200 feet between the handicapped chair and her spot on the plane.

When we landed in Jacksonville it was so late the ground crew decided to clock out before fully unloading our luggage. What should have been a matter of grabbing my bag and heading out the door turned into another hour-long wait in the lost luggage line to fill out paperwork that might eventually reunite all the weary travelers with their bags.

I struck up a conversation with the lady ahead of me, commiserating about the whole frustrating ordeal.

“I guess neither of us had it as bad as that one lady,” she said.

“Who are you talking about?” I asked as the hairs on my arms stood up.

“That one poor lady they took out on a stretcher. The one who was shaking so bad.”

I know my path will never cross with Candy’s again, but my heart aches for her, and I only wish her well.

It’s so hard not knowing there is a happy ending.

My Healthcare Relationship Status: It’s Complicated

The following essay is the transcript to the most difficult speech I ever gave. This was delivered on the main stage at Stanford’s Medicine X (MedX) on September 18, 2016 while my mother, sister and son watched via live streaming–the only audience that truly mattered. MedX is a place where everyone – patients, doctors, students, professors, pharma and other industry professionals – come together to discuss healthcare and work together to overcome the hurdles we all face.

I was privileged to work with Hugo Campos as my muse, guide, and therapist to elicit the following story. As hard as it was to share, I feel it is important. Through telling my father’s story I was finally able to give myself permission to let go of the guilt I have felt over not speaking up and demanding better care for him.

After stepping off stage and crumbling to a heap, sobbing in the arms of strangers (who are all now dear friends) the first thing I saw on my phone was this text from my son: “I just watched your speech. Really great Mom! I’m so proud of you!!!” That was the digital hug I needed, right when I needed it most. 

My live speech was prefaced by the following intro video, graciously produced by the Medicine X team and the brilliant Paul R. Shepard.

(Puppy “Trust” photo credit to my grandfather, Mark Jepson, circa 1948)


 

“Every time I’d start to recover, it would hit me again. With a progressive disease, you think, ‘This is what it’s like now, what’s it going to be like in 10 years?’ I don’t want to live like this.” – Jeri Burtchell

#MedX 2016 continues Sunday. Watch live between 8 a.m. and 5 p.m. PT and join the conversation: http://medxlive.stanford.edu/

Posted by Stanford Medicine X on Sunday, September 18, 2016

 

 


My Healthcare Relationship Status: It’s Complicated

img_20160826_0002I’ll never forget feeling numb and blindsided, holding Dad’s hand as he died in a hospice bed where his Lazy Boy sat just the day before.

Dad loved his doctor and trusted him completely. So every time he passed blood in his urine and had to be cauterized to stop the bleeding, he never questioned why. Though the cancer diagnosis would come too late, Dad never blamed his doctor for not being more thorough.

But I did. And the guilt of not insisting on a second opinion still stings.

I was in his hospital room the last time he was cauterized, when the doctor came in, barely looking at his chart, in a hurry to leave. Dad said “Hey doc, can you look at my jaw, it hurts me so bad I can’t eat.”

Without moving from the doorway, he just shook his head, “You’re already on so many meds for your TMJ there’s nothing I can do.”

Inside I screamed, “Take your hand off the doorknob and go feel his face!” because Dad’s beard was covering a huge lump.

But I sat silent, intimidated by the doctor’s white coat and knowing how much Dad respected him. I didn’t speak up and I’ll always regret that.

It was small cell carcinoma and we’ll never know if it was that or the bladder cancer that killed him, but the doctor missed them both.

While Dad was in and out of the hospital, I was fighting my own medical battles.
A strange numbness in my feet had spread to my waist and left me unable to walk. After lots of tests I was shocked to learn I have multiple sclerosis, an incurable autoimmune disease.

My neurologist wrote me a prescription without any discussion. He said, “This is the drug I want you on; the others have too many side effects.” I trusted him because he was the one with the degree, not me.

imag1660But after nearly a decade, the attacks kept coming. I was miserable, barely able to walk. Numb, weak, and depressed, I fantasized about suicide. It felt like the only way out. Maybe an overdose would be painless…

I was exhausted from fighting a disease that my doctor said was the most aggressive case he’d ever seen. Yet when I mentioned the medicine he insisted “Trust me, it’s working. Without it you’d be so much worse.”

It never occurred to me that I could get a second opinion, or explore my options. And then one day my doctor had a stroke. I had to find someone else.

My new doctor was an investigator for a clinical trial of a new MS medicine and he asked if I was interested in joining. Since I was already considering suicide, what did I have to lose? I felt desperate and signed up.

But that hail Mary pass was the best decision I ever made. My relapses all but stopped. Research gave me my life back.

I find it ironic that the one medical decision I thought would be most risky had the most positive outcome.

And that makes me think about all of the complex factors that go into making our healthcare decisions. But most of all, about trust.

When is it deserved? When is it misplaced?

Healthcare, medicine, and research are words that sound so sterile and abstract. But they all define the human race working together to save ourselves from sickness, suffering, and death.

At every step along our healthcare journey, we have human interaction. The nurse hanging an IV bag, the surgeon wielding the knife, the pharmacist dispensing medicine. We are constantly interacting with–and trusting–others because our lives depend on it.

But how do you know who to trust? That’s the conundrum.

For me, sorting it out had to come from within. I had to look hard at my internal dialog, the assumptions I was making in my head. I had to become more assertive and discerning.

I learned all I could about my health so my gut instincts are backed with knowledge. But in the end knowing who to trust is still a crapshoot for patients. Medical degrees are no guarantee of infallibility, and humans make mistakes. They call it “practicing” for a reason.

Until there is a way to objectively measure trust, the best that patients, caregivers, and family members can do is to arm themselves with knowledge and find the courage to speak up. Because the journey to becoming your own healthcare advocate begins with trusting yourself.

Creatures of Habit: The Cat Lady Just Wants Coffee #HAWMC

Today’s writing prompt for Wego Health’s Health Activist Writers’ Challenge #HAWMC is “Creature of Habit”.

There’s no hitting the snooze button because my alarm has very sharp teeth and claws. Weighing in just shy of 20 lbs, she’s a calico named Little Kitty, just one of the four cats that live with us.

A few years ago my son and I moved in with my elderly mom who lives in the house my father built. Not the kind of “house building” where you hire a contractor — he only did that for the plumbing and electric — I mean he built it from foundation to roof with his own two hands. He passed away in 2000 and the last thing I said to him was “It’s okay to go, we’ll take care of Mom.”

Mom is 91 now and she’s doing just fine. In fact, she does more of the caregiving than receiving, truth be told. The cats, on the other hand, are a demanding, needy lot. While Little Kitty was adopted, two others, Mittens and The Original Little Kitty (I know, it’s confusing), are strays that knew a good thing when they saw it. The most recent addition is Tweak, a flame point Siamese that I offered to nurse back to health when he was injured.

The oldest of them, The Original Little Kitty, is my mother’s favorite. She’s an orange tabby that can’t weigh 4 lbs. and is 18 years old. She’s completely deaf after a bad ear infection ruptured her eardrums years ago, and she spends most of her day in my mother’s lap, wrapped in her own sweater.

But I digress. Back to my morning “routine”.

I can’t even begin to think about starting the coffee until everyone with pointy ears and a tail has gotten their bellies full. It’s not that they’re spoiled, it’s just that if Mom’s cat sees the kitchen light come on she’s standing in front of the fridge MEOWing at the top of her lungs. I tell her to “use your inside voice” but she continues until she sees the wet food come out. That has to be the nastiest thing to wake up to, the smell of wet cat food. But I quickly learned, with our blended cat family, that happy cats lead to a productive morning. If you try making your own coffee first, you’ll suffer swift and certain consequences. I choose to follow the script and all the cats nod along as they watch me perform the tricks they taught me.

This one likes paté, that one likes shreds. The two outside cats (Tweak and Mittens, aka “the boys”) get only dry food. If they were to catch on to what goes on inside the house, the pet food bill would skyrocket. 

The cats are grooming themselves and contemplating lunch by the time I catch my first whiff of coffee.

I remind myself of the companionship and comfort they bring to this house, when they aren’t using the furniture as a scratching post or knocking over the lamp on the end table. More than once since all of these cats simultaneously found their way into my life, I have paused to give crazy cat ladies the reverent respect they deserve. I don’t know how they do it, caring for a hundred at a time. If I tried that, I’d probably go, well, crazy.

So to balance out the routine foisted upon me by my feline co-dwellers, I live the rest of my life as spontaneously as I can. Defying their looks of disdain.

At least until supper time.

In Search of Random Acts of Kindness #HAWMC

randomactsToday’s writing prompt for Wego Health‘s Health Activist Writer’s Month Challenge is to recount a random act of kindness, either done for you or by you. At first I was stumped. I couldn’t remember any situation where I was on the giving or receiving end of a random act of kindness.

Then it hit me. It doesn’t have to be a flash mob surprising me, or a chain of cars at Dunkin’ Donuts all “paying it forward”. Random acts of kindness are all around us. It can be a gesture as small as leaving the toilet seat down.

Or it can be something huge, like how the nurse in the emergency holds your hand and says everything will be okay.

Kindness is not an elusive thing to be chased like a monarch butterfly. Quit running after it and open your eyes–it’s all around us.

From the cashier who picks a penny out of the cup instead of giving you 99 cents in change to the person who holds the elevator door, as we interact with other human beings, I think it’s in our nature to be kind.

Back before Christmas I decided to build my own computer from scratch. I bought a lot of the components through Amazon. One of the parts, a card reader, wasn’t compatible with my motherboard, so I had to send it back. But when Amazon got it, instead of crediting my account $42, they gave me over $100 and marked the motherboard as having been returned.

I called customer service and got a young man named Rob who very graciously helped me. As we talked, he listened to me explain my reason for the call. When I was done there was a pause. Rob didn’t say a word for a second or two. Then he admitted he was kind of surprised. 

“Most people would keep the refund and not point out the error,” he said.

“I believe in karma,” I explained. “If I keep what I’m not entitled to, this is going to come back to bite me.”

Rob was really happy to help me and couldn’t get over how a call from someone who insisted on giving money back to Amazon might end up being his favorite call ever. By the end of our conversation, we were sharing funny stories and comparing the differences between our geographic locations. We’d become friends and we were hesitant to hang up. I wished him a good life.

There was no random act of kindness in what should have been a mundane exchange. We were two human beings who connected for a brief time and shared a laugh. It was the best customer service experience I’ve ever had, and likewise he said he’d never forget our call.

Sure, I was $60 down, but my heart was happy. Rob and I were half a world apart, sharing kindness–randomly.

Simply that and nothing more.

Having a Stress-Free Holiday Season When You Have MS

My guest blog post originally appearing on Multiple Sclerosis Association of America’s blog.

By: Jeri Burtchell

Each year, I judge how well prepared I am for the holidays by the way Halloween plays out. When I saw my son donning the same scary mask we bought several years ago, I realized I’m as ill-prepared as ever. We’re lucky it still fits, I think to myself as holiday dread settles squarely on my shoulders.

The problem with his costume is not that we aren’t creative, it’s just that life is busy and time slips through our fingers like greased marbles these days. We end up making last minute plans and this Halloween was no exception: get the plastic pumpkin off the top of the fridge and start searching the house for that mask (two hours before Trick-or-Treat officially kicks off). I’m not creating the perfect childhood memories for my son, I fret to myself as I look under the bed for the face from Scream.

The limitations that my MS fatigue and reduced walking ability have placed on me are showing. I’m not looking forward to Thanksgiving and Christmas with the same enthusiasm as I once did. I’m filled with angst as part of me wants the ultimate “joyful” experience, while the other part just wants it all to be over.

But the holiday season is stressful for everyone. The difference is some people thrive on the stress, which they call “anticipation.” But others like myself are filled with dread. Ever since I was diagnosed with MS in 1999 it seems like I stopped looking forward to the time between Halloween and New Year’s Day. I think it’s because I worry about stress triggering a relapse. And then part of me feels guilty because the children in the family aren’t getting the full “magical” experience.

While I do face physical challenges, my MS isn’t the only factor shaping our family holidays. Mom is 91, and though she’s still undeniably the sharpest knife in the drawer, she doesn’t get around as easily as she once did. Still other family members are living with everything from lactose intolerance to diabetes which influences the dinner menu.

But we are managing. Together our family is learning to adjust to our new collective “normal”. We’re redefining what our get-togethers look like. The emphasis is on comfort and ease while downplaying commercialism. So what if the tree isn’t up or we don’t have a full turkey dinner with all the trimmings? We can define the celebration on our own terms.

The holiday dinners will be potluck so that we can each focus on one dish and prepare it ahead of time. Nobody will be banished to the kitchen and make-ahead dishes can be prepared when the cook (or baker) is feeling up to it.

With dinner prepared in advance, we’ll be free to enjoy each other’s company. The conversations, the laughs, the squealing children, and the photo ops will fill our memories of the day.

If Mom has to take a nap or I have to go lay down for a while, that’s okay. Everyone knows we both have our limits.

At Thanksgiving we’ll draw names for Christmas gift giving. Everyone ends up with a present but only shops for one person instead of ten. With a $20 limit and the convenience of online shopping, we can eliminate the stress of holiday crowds. We’re trying to make it more about the get-together and less about “what-did-I-get?”

Over the past fifteen years, I’ve come to learn a lot about managing my MS. I need plenty of rest, I need to eat right, and I need to exercise. But it’s just as important to reduce the stress in my life. Not only is it bad for MS, but for everyone’s health in general. By reducing the amount of effort (and stress) it takes to pull off a family gathering, we’re really looking out for our health.

The holidays should be about family, love, togetherness, and appreciation for every positive thing in our lives.

So when next year rolls around and my son is reaching for the same old scary mask at Halloween, I’m going to go a little easier on myself. The mask can be a new tradition, a symbol of how we can let go of society’s expectations. It will signal the start of a stress-free holiday season and–with the help of my family–I know we can do this!

References:
http://www.healthline.com/video/managing-multiple-sclerosis

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

Inside My Bubble, Prepared for Anything

My guest blog post originally appearing on Multiple Sclerosis Association of America’s blog.

By: Jeri Burtchell

I like to think of myself as a planner. Now, before those of you who know me collapse into uncontrollable laughter, let me explain. I don’t plan as in “wedding planner” or even use a “day planner.” In truth, I’m a perfect candidate for one of those intervention reality shows.

I never said I plan in a structured, well thought-out manner. No, I’m motivated by more of a panic-driven, deeply troubled, “what-if” thought process I learned from my mother. I have cultivated an emergency response for every possible scenario that could come along in life. I have prepared for catastrophic events that may or may not ever happen.

Mom and I have our fire season evacuation box, our hurricane season supply stash, and when I travel I have a whole suitcase packing ritual designed to make life easier in the event that things go wrong. When connections are missed or there are bathroom emergencies, I know I can count on the contents of my purse or roller bag to rescue me.

I like to think of this as part of my MS Bubble. Since I was diagnosed in 1999 and have come to realize how unpredictable it can be, one small thing that gives me solace is having my MS Bubble.

Jeri blogIt’s a sort of invisible force field I’ve visualized that surrounds me. Inside I have everything I might need to deal with unpredictable events. Things that define my comfort or bring me joy are always close at hand.

Others might say my bubble is nothing more than my “comfort zone,” and in the classic sense, I guess it is. When I’m working, it’s right here at my desk. In my bubble/comfort zone, I keep the necessities of life. I have everything from a box of tissues to device charging cables.

While others look at my workstation and see a chaotic mess, I see a symphony of bubble-friendly instruments, each playing a part in bringing me comfort. I choose to forgo the aesthetic appeal of minimalism. I’d rather have clutter, as long as it’s purposeful clutter. Who can say I won’t need that thermometer mere inches from my keyboard?

My sweater stays on the back of my chair, always at hand in case I get chilled. Slippers are close by.

My smartphone is the most indispensable tool in my bubble. It connects me socially, delivers my mail, reminds me to take medications, tells me what the weather is like outside, and will distract me with games if I let it.

The point is, I have made my life as comfortable as I can, given the unpredictability of MS (and of life itself!). Although my bubble does not appear to be in any semblance of order to the untrained eye, it works for me.

I haven’t “planned” my bubble this way as in planning-a la-Martha-Stewart. It is only an ever-evolving collection of habits and things that aid me in everyday life. So I am soothed by the knowledge that, even when my MS symptoms are acting up, my MS bubble is always there, ready to comfort me.

Perhaps it’s eccentric of me to imagine this “bubble,” but visualization is a coping mechanism that works for me. I once got through the claustrophobia of an un-medicated MRI by imagining I was at the beach. My “vacation” was so enjoyable I was almost sad when the MRI ended. The protective “bubble” just works for me.

If you can develop coping strategies – whether or not they involve visualizing your own bubble – whatever works to keep you calm, centered, comfortable, and in a joyful state of mind is all that matters. So think about your situation and what things bother you the most. Then go about “planning” to deal with them ahead of time.

Create your own comfort zone, your own MS Bubble.

And if you’re a friend or family member of someone coping with MS, you might want to consider memorizing these 12 things you should never say to someone with a chronic condition.

But please add one more: Never say, “I took the liberty of cleaning up your desk. Hope you don’t mind – it was a real MESS!”

Why, that would just burst my bubble!

References:

Photo credit: Jeff Kubina, used with permission under the Creative Commons License

http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

The Empowered Patient: Your Greatest Resource Lies Within

My guest blog post originally appearing on Multiple Sclerosis Association of America’s blog.

By: Jeri Burtchell

I remember feeling like I’d stepped through the looking glass that day in the hospital. My world became distorted and unreal as the words “you have multiple sclerosis” echoed in my brain. I couldn’t make sense of it; this couldn’t be happening. Suddenly my life as I knew it was over and I could either live in the past, or look to a new future.

It may have been over 15 years ago, but I haven’t forgotten that day. Anyone living with MS was once “newly diagnosed.” We’ve all been there.

So this month, in keeping with MSAA’s theme of finding resources, I’d like to introduce the newly diagnosed to what will become their greatest resource of all. It’s the mental approach we take toward living our best life despite MS. I’m talking about being an empowered patient.

The term “empowered patient” has no clear-cut definition, however it encompasses an overall set of characteristics that sets one apart from the average patient. Empowered patients take an active role in making health care decisions, learn all they can about their condition, compile resources, take notes, and strive to improve their own quality of life. There is no set way to accomplish this; each empowered patient discovers their own path.

For eight years after my diagnosis, I was anything but empowered. I felt helpless, overwhelmed, and despondent. My medication wasn’t working for me even though my doctor insisted it was. I had no idea I could get another opinion, and I trusted him when he said I needn’t try any other medicines.

Then one day my neurologist had a stroke. I was suddenly fighting my MS battle alone. That’s when my journey toward empowerment began. My first step was finding another doctor.

I’d never been very sick before MS, so doctor shopping was uncomfortable for me. I had my primary care doctor pick my new neurologist instead. (My path to empowerment began with baby steps.) It turned out the doctor he chose was the lead investigator for a clinical trial studying a pill for MS.

When I met with him we discussed the drug trial, weighing the risks and benefits. He also told me of all the other available options. Again I had to choose. I was terrified of making the wrong decision, and all of the medicines seemed so scary. But I was more afraid of not being on one of the drugs since my MS was so aggressive. I took home the paperwork to read up on the clinical trial. Three days later I took a huge leap. I decided to join.

Up until then I had been miserable, relapsing 3-4 times a year. Really big relapses that had me in a wheelchair, on a walker, or using two canes. The whole time I suffered, I never thought things could ever change. I thought I was destined to be miserable forever.

But the trial changed my life. I happened to get the real study drug and it worked so well for me, it would be another six years before I had a new relapse.

The positive outcome of my choices reinforced the importance of playing a more active role in my health care.

I learned all I could about my disease and took notes about what others found effective for treating the symptoms of MS. I questioned everything and sought to find the answers. As they say, knowledge is power.

But being an empowered patient isn’t just about making treatment decisions and getting second opinions, it’s also about owning your lifestyle choices, too. I took a long hard look at the things I could change. I gave up smoking and junk food and began exercising more. I saw real improvements. My goal is not just to live life, but to feel as good as I can at the same time.

But if giving your whole life a makeover seems like an impossible task, just take baby steps. Find one thing you can do that positively impacts your health and focus on it. If you need help, reach out for support.

Becoming an empowered patient doesn’t happen overnight. It’s a process that evolves over time.

So if you’re newly diagnosed and feeling overwhelmed, don’t despair. Know that there is an ebb and flow to relapsing MS and if you feel bad now, there are better times ahead. Focus on learning all you can and actively participate in your treatment decisions. If you don’t like your doctor, find another one. Don’t wait for them to have a stroke before you start thinking for yourself.

You’ll find that being your own advocate might be your greatest resource of all.

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.