So tell me what happened the first time you lost the ability to walk.
I was at the grocery store, and I felt queasy out of nowhere, so I went to go sit on a bench while my boyfriend finished shopping. By the time he came to get me I could barely walk. Getting to the parking lot felt like sprinting a mile.
Then over the next few days I developed this full-body exhaustion that made it almost impossible even to sit up. I would be lying on the couch staring at something I needed to get, five or six steps away, and just steeling myself to do it and not being able to move at all. One time I stood up and was trying so hard to communicate with my legs and I just fell over.
How long did this last, and how immobile were you?
I could shuffle very slowly to the bathroom and back, and I’m talking two-inch steps at best. The episode lasted about a month, and I spent all my time on the couch or in bed.
How did this affect your life? What did doctors say?
I was working for Cornell as a software developer, and my job was good about it—I went on sick leave and then on short-term disability. I just thought I had a weird virus, because that’s what the doctors said. It was weird and scary and definitely annoying, but I thought it was temporary and a one-time thing, and I could feel myself slowly getting better.
After you regained movement, how much time passed until the next episode?
Six months. I’ve had five episodes total, all either six months or a year apart; all the episodes lasted about a month, except for the last one, which was for about eight months.
I remember when it happened the second time it felt very familiar. I knew it was back.
Were you scared to feel it come back?
Yeah. I got more and more scared the more it happened. I was worried it was multiple sclerosis, because that can cause heavy fatigue and comes in this same relapsing, remitting form. I was never worried that it was fatal or anything, but I was worried.
Did you go down a WebMD rabbit hole?
I did definitely spend a lot of time looking up fatigue stuff.
That was the only feeling, extreme fatigue? Was there any pain, any mental symptoms?
Just fatigue. I could feel everything in my legs, had no pain, no other symptoms—was never in a mental fog or anything. But the fatigue was debilitating. I couldn’t brush my hair or hold my arms up to type on the computer. I got tired holding the phone against my ear, moving my mouth to talk. And fatigue is a non-specific symptom, so it took a long time even to narrow it down to the four major possibilities the doctors were telling me: MS, chronic Lyme disease, chronic fatigue syndrome, or chronic mono.
You’ve been with your boyfriend throughout all of this. What was it like for him?
I know it was scary for him, but mostly he says it was frustrating to see so many doctors and have no one give us an answer. We were living together, so he did absolutely everything: he brought me water every two minutes, brought me my toothbrush so I could brush my teeth on the couch. He’d carry me down the stairs and lay me on a blanket outside so I could get fresh air. During one of my episodes we actually got to go to Hawaii—we’d had the trip planned for forever, and decided we’d give it a shot even though I was sick—and I was in a wheelchair, and when places weren’t accessible he’d just carry me on his back.
How many doctors did you go through?
My PCP, two pulmonologists, two cardiologists, two neurologists, two infectious disease specialists, a rheumatologist, and a few more—maybe about a dozen in total.
Was this expensive? Were you mad?
It was a shock for me to realize that doctors didn’t have an absolute handle on everything medical. I thought the first specialist I went to would be able to solve it, because I’d never been to a specialist before—and I remember he was just like, “I don’t think you have an infectious disease,” and walked out to send me back to my primary care doctor. I was like, “Wait! Wait! Help?”
And I had good health insurance throughout this whole thing. I can’t imagine doing it otherwise. There were copays, and a few big expenses when we didn’t get pre-approval, but otherwise it was okay.
The worst thing really was when I saw the EMTs had written on my chart—during my fifth and last episode—that the reason for my admittance was “behavioral/psychological.” I’d had to be taken there in an ambulance after my parents found me on the floor during Thanksgiving because I just couldn’t move at all. My boyfriend and I laughed about it, but it made me really angry, too.
Did you get that a lot? People telling you that you were imagining it?
Oh, sure. One of the doctors told me that I was only experiencing stress from being away from my boyfriend, who by then was my husband. He put me on two different antidepressants.
Did you ever start to buy that you actually might be imagining it?
I did wonder sometimes, am I making this happen? Am I doing this to myself? Then I decided, if I am, it’s so far in my subconscious that I can’t possibly do anything about it. And my husband and family saw that it was medical—not something I was doing for attention or anything like that—and that helped a lot.
The antidepressants had no perceptible effect on me, other than one of them making it easier to sleep. I'd been having some insomnia.
I can imagine it would be easy to develop insomnia when you can’t move your body. What did you do during these episodes mostly?
I got a tablet, I played lots of games, I tried to learn how to meditate, I learned some Spanish, I watched a lot of TV, I started a blog, I wrote. I really hated being stuck on the couch.
Did you feel guilty about your boyfriend having to do everything?
Very guilty. I was living entirely on the help and good graces of other people, and that’s a hard way to live. I had to ask so much of him, all the time—I would go through this excruciating decision-making process of thinking, “Can I really ask him to get me my toothbrush when I could do it myself, even if it would take twenty times longer and it would exhaust me for the rest of the day?”
And then you got married in the middle of all of this, before you got your correct diagnosis. What was the discussion like about the future, and what might happen with your health?
We’d sort of decided that this would be something we’d have to deal with once or twice a year, and that it was okay. But when I got sick the fifth time, and it lasted for so long without me getting better, I felt like my body had betrayed both of us—broken the agreement.
There were some dark bits in there, lots of crying in public. One time we tried to go to the movies and I couldn’t even sit up, and afterwards I was waiting in the lobby for him to get the car, and everyone was just walking by so effortlessly, and I was so jealous of how they could move wherever they wanted, however fast they wanted to. I remember on the way to Hawaii, I cried in the plane because I couldn’t make my legs walk down the aisle, and a woman thought I was afraid and tried to give me Xanax.
Tell me about the final episode.
It lasted June 2011 to February 2012, and it started when one of my friends from high school came over and we got drunk for the first time—I was kind of a late bloomer on that—and it was pleasant and fun and great, and then the next day I had a massive episode and it never ended.
How did you feel at, say, month five?
I remember picturing being in a hallway and watching all the doors just closing and closing. I thought, or hoped, that I could continue my career as a software developer—maybe someone could rig up a computer at the right position so I could use it lying down. But I felt like the door of having kids was closing, and that was something I’d wanted so badly. There was no way I could imagine taking care of someone without being able to get off the couch.
You essentially experienced what it’s like to be very elderly at a very young age, and that’s not a physical state that many of us can even imagine.
Yeah. I think a lot of people our age are so afraid of physical debilitation or even just being old. I remember seeing someone on a TV show say she wanted to die before her body started to break down. And yeah, it’s very very bad to not be able to function well in your body—but I could still experience happiness, still be glad to be alive. It’s not better to die than to be debilitated, I don’t think. Even if all you can do is lie there, lying on the beach is still pretty good.
How did you finally get the diagnosis, and what is it?
I went to the ER at Thanksgiving because I was on the floor unable to get up. I stayed overnight on a bunch of IV fluids, and in the morning I could take three-inch steps, which was a massive improvement. One of the characteristics of my illness was that I improved almost imperceptibly normally, so picking up even an inch overnight was unheard of for me.
So, my engineer husband, who had been trying to isolate the malfunctioning system the whole time, looked up what was in the IV—and it was just a bunch of concentrated saline. He talked to a friend in med school, who suggested that I just try to eat as much salt as I possibly could for a week. I did—I swallowed handfuls of it, which is gross and burns your mouth—and I could immediately tell that I was getting better, even though it was still slow.
I went to a new neurologist and told him about my fatigue, and that salt had made it better—and he told me about POTS.
What does POTS stand for?
Postural Orthostatic Tachycardia Syndrome. Basically, my blood vessels dilate too much and my blood pools at the bottom of my body—and I didn’t have enough blood, so my heart was beating too fast trying to get the blood anywhere at all. Triggers for it are anything that dilates the blood vessels: heat, alcohol, exercise, illness. The test for it is strange—they strap you to a table and tilt you from flat to standing up, and they wait to see how long it takes you to pass out and what your heart rate is.
I took that test at the office of one of the only doctors on the East Coast who specializes in POTS, and the staff were standing around me looking frightened because usually kids are the ones who have POTS, and it’s easy to catch a kid that’s passing out but less easy to catch an adult. But the test verified that I had it, and the doctor looked at me with this very wizardly manner and pressed my hand and told me that I had it.
He put me on this medication, something they used to give to astronauts to regulate their blood pressure coming back from space. That, combined with the salt, has put me back on my feet—and it’s been amazing.
And you said you’re pregnant now! Congratulations—have you had to do anything differently?
I did a lot of research before I got pregnant, wanting to see if this was something I would pass down, but there’s not a lot of information out there—no one really knows what causes POTS. But often pregnancy can temporarily make POTS better because when you’re pregnant your blood volume almost doubles. I had some non-POTS fatigue my first trimester and thought it was almost pleasant because I could still walk. I’ve had a smooth pregnancy otherwise, though!
What do you have to avoid now?
Alcohol—anything more than a drink and a half will certainly set off an episode—and baths, and showers hotter than lukewarm. I walk a lot, now that I can, but I don’t exercise vigorously. I still take so much pleasure in being able to walk, just go to the store, do whatever I want. When I first started walking normally I felt like I was flying around everywhere.
So that aspect of gratitude has not worn off.
Not at all. Even not being able to go out in the heat, that limitation seems so tiny now.
I remember in the later months of the last episode, I was thinking a lot about hope: whether it’s useful or harmful. I began to think it was a barrier to acceptance, and it was better to let go of hope and go for acceptance. So I did, and it was peaceful in its own way.
But then we figured out the salt thing and immediately I started to hope again. So now I think hope is just involuntary. And those times were dark, but the last five years was not a hole in my life. Even the months that I was sick, that wasn’t a total loss. Like, there was this one time in Hawaii when I rolled up to the beach in my wheelchair, and the lifeguards just ran over to me and brought me this balloon-wheeled beach wheelchair, which I didn’t even know existed. These two old guys were watching me and just yelling, “Good for you, sweetheart! Good for you!”
Photo credit NToster/flickr