Nikki Saltzburg was born three months untimely whereas her mother and father have been vacationing in Bermuda. With Saltzburg weighing simply 2 kilos, 2 ounces, they flew her again to Philadelphia on a Navy aircraft, the entire plane set to 98.8 levels Fahrenheit in order that she’d survive the journey.
Saltzburg is now a 45-year-old workers psychologist at Florida Atlantic College who has been paralyzed from the waist down nearly her entire life. “I wasn’t injured from the circumstances of my beginning,” Saltzburg clarifies. As an alternative, a collection of medical errors, together with a defective prognosis and a medication-induced blood clot, disabled her.
Saltzburg has a T11 incomplete fracture, which means that she has a break in considered one of her mid-back vertebrae, however her spinal twine isn’t fully severed. “I’ve some sensory operate under my stage of harm, like I can really feel issues, strain, excessive sensations, however I can’t transfer in any respect,” Saltzburg explains. One of many key problems of this harm is neurogenic bladder, a situation the place Saltzburg has misplaced management of her means to urinate.
Final 12 months, she had a urostomy, an operation the place urine is diverted from the broken bladder right into a stoma, a beefy purple spout protruding from her stomach. “I’ve named my stoma Freddy,” Saltzburg says with a painful smile, “as a result of it seems to be like an alien to me, like Freddy Krueger.”
STAT spoke with Saltzburg concerning the realities of navigating the well being care system as a disabled particular person and the way she’s needed to advocate for herself. This interview has been edited for brevity and readability.
What was it like going by way of faculty along with your incapacity?
After I was in grade faculty, I walked with crutches and braces; it was actually essential to me as a baby to be as very like my buddies as attainable. So, I might climb up on the playground gear, generally in unconventional methods. Some aide from my faculty known as my mother and father and stated I wasn’t allowed to play on the gear anymore as a result of it was a legal responsibility. That was a type of issues the place you notice, “Oh, I’m not like the opposite children.”
When did you begin utilizing a wheelchair?
After I was 12, I had spinal surgical procedures, so that they put some rods in my again. And that’s once I began utilizing a wheelchair full time as a result of I needed to get well. I discovered that utilizing a wheelchair was a lot simpler and extra practical as a result of once I was strolling on my crutches, I couldn’t carry issues with my palms or do the rest.
All by way of junior highschool, I acquired round on my own. After which once I acquired to ninth grade, it was my first day of highschool, and this girl walked as much as my bus — and I used to be like, “What’s occurring?” Effectively, I had been assigned an aide, which I had no data of and no want for. She met me at my class and defined to me who she was. And I used to be like, “Okay, thanks. That’s good, however I don’t want your assist.”
When you have got a incapacity, folks make assumptions about you, they usually make judgments about your character and your talents. That’s why it’s at all times been personally essential to me to be unbiased, as unbiased as I may be, and show these assumptions mistaken.
What was your most formative expertise rising up?
I performed wheelchair tennis for a lot of my adolescence and early 20s. I traveled internationally; I performed on the U.S. Nationwide Workforce. And that was superb, not solely as a result of I acquired to play tennis on a regular basis and journey to chill locations. But additionally I met so many individuals from everywhere in the world who have been wheelchair customers. It gave me position fashions; listed here are adults which have jobs, households, and regular lives. And that was the primary time I acquired to see that.
It additionally taught me rather a lot about dwelling with a spinal twine harm as a result of all of us speak about issues that I’m not going to with individuals who don’t stay this life. You get a bunch of individuals with spinal twine accidents in a room, and also you’re speaking about peeing, pooing, and intercourse. And also you’re often speaking about intercourse first.
What have been among the challenges you confronted along with your bladder?
After I was youthful, I don’t know the way, however I used to be in a position to urinate alone. I discovered methods to empty my bladder. However each time I might get a chilly or flu, I might get a urinary tract an infection afterwards. So I’ve had a number of antibiotics all through my life and a number of UTIs. However none of them have been notably severe.
All the things began shifting for me once I was 28. I awoke one morning in excruciating ache — actually unhealthy again ache. For a number of days, I used to be feeling like that, after which I began operating a 103.5 fever.
I went to the hospital, my closest native hospital, they usually didn’t know what to do with me. They accused me of drug-seeking, however I used to be in off-the-scales ache, my coronary heart was pounding, my BP was off the charts. They simply principally despatched me house sick as hell with ache medicine.
I went all the way down to UMiami, and the neurosurgeon discovered inside two hours what was mistaken. I had an osteomyelitis an infection at L4/L5 because of a situation known as Charcot backbone. Particularly, I acquired a sort of micro organism that manifests itself harmfully in 0.01% of the inhabitants. I had a weakening of that space as a result of that’s the place my rods ended. It was as a result of I wouldn’t allow them to fuse all the way down to my pelvis after they did the spinal surgical procedure as a result of I needed to have the ability to bend over.
So, I really feel like a medical freak present generally.
Why did you determine to finally get surgical procedure to your bladder issues?
Over the course of 15 years, my bladder began to progressively worsen. I used to be beginning to lose my continence and was additionally having hassle fully emptying my bladder. In order that’s why I saved getting infections and finally ended up having surgical procedure.
In 2017, I acquired a UTI the place I wasn’t responding to oral antibiotics. It turned out I had developed ESBL; it’s like an antibiotic-resistant E. coli an infection. Since I had the primary one, I’ve most likely had six or seven extra, and I’ve ended up within the hospital not less than 5 occasions. I acquired septic a number of occasions as properly.
I additionally acquired into two actually severe automotive accidents in my 30s. And after every automotive accident, it might worsen. Anyone was telling me, “You’re like an eggshell. As soon as one thing’s cracked, one thing else will get cracked.”
What’s it prefer to stay with this new urostomy?
They’ve created a channel to deliver urine from my kidneys to this exterior bag, which is the urostomy pouch. The way in which that it really works is that you simply lower the opening within the pouch to accommodate the dimensions of your stoma, and you employ a particular form of adhesive to place that pouch in your pores and skin and stick it on there. My bladder continues to be in my physique, but it surely’s principally not getting used in any respect. The stoma, the urostomy pouch, principally turns into an exterior bladder.
It was comical to me. It’s an “incontinent diversion,” so urine will come out with no warning. I discovered that it may spray urine. I had some sores and pores and skin irritation that developed across the stoma initially, like blistering, which could be very uncomfortable.
These first six to eight months, I used to be additionally having fecal incontinence a number of occasions a day, and I couldn’t get to the bathroom shortly. Often I used to be having it if I used to be laying in mattress or sitting in my wheelchair, which isn’t simply messy and gross but additionally exhausting for me to get cleaned up. I used to be just a little pissed off at first, like did I simply commerce urinary incontinence for fecal incontinence? I’d slightly have urinary incontinence; it’s simply simpler to handle.
I’ve needed to handle bodily features of my life in unconventional and inventive methods. So, I’m not as postpone by it as most individuals. In some methods, it’s been not as troublesome of an adjustment psychologically by way of physique picture. What was very troublesome psychologically was once I was super-dependent after the surgical procedure. I used to be depressed, just a little bit. As I’ve regained a number of my functioning, it’s gotten higher.
Do you assume your restoration was harder due to your incapacity?
I had bodily remedy every single day within the hospital previous to my discharge. I used to be very fearful about this as a result of in every part I’ve examine this process, I couldn’t discover something about recovering if you’re paralyzed.
All the things I learn was, “The easiest way so that you can facilitate your restoration is to stroll — strolling goes to assist your circulation, get your bowels shifting, show you how to acquire your energy again.” I don’t stroll, and doing every part that you simply do in your day-to-day life sitting versus doing it in your ft is a really completely different expertise.
I additionally keep in mind studying, “No twisting, no lifting heavy objects.” Effectively, my physique is a heavy object; I’ve to carry myself up rather a lot. So, I used to be freaked out about that. I requested my physician about it, and he was similar to, “You’ll be effective.” There was no recognition of how difficult and scary it’s to be fully depending on another person — or frankly not even an consciousness of what among the points may be. It wasn’t coming from a nasty place. I don’t know the way a lot he is aware of concerning the day-to-day lifetime of what it’s prefer to be a paraplegic.
Has your expertise navigating the well being care system gotten higher or worse over time?
It’s at all times been extraordinarily difficult. And I feel as I’ve gotten older and have had extra complicated wants, it’s been much more difficult. As a result of I’m an individual with a spinal twine harm, a number of house well being businesses don’t even need to cope with me, regardless that I’m not even searching for care round my paralysis. In order that’s been actually irritating.
One other factor that’s actually difficult are the assumptions that individuals make about anyone like myself who makes use of a wheelchair full time. Docs typically assume that I’m on incapacity, assume I’m Medicare or Medicaid.
I work full time, I’ve a Ph.D., I’ve a household that I’m supporting. This may be my very own lens that I’m super-sensitive to that, however I can’t inform you what number of occasions it reveals up — that assumption of like, “Effectively, you don’t have to consider driving, otherwise you don’t have to consider exhibiting up at work every single day, otherwise you don’t have a baby that you take care of.” However I do.
After which the idea that my companion’s my caretaker — she’s not my caretaker, she’s my companion. I feel that that results in some actually troublesome dynamics and decision-making. I’ve a number of trauma related to interacting with the well being care system.
What recommendation do you have got for well being care employees on how you can higher take care of folks with paralysis?
Sadly, my expertise has been that many well being care suppliers don’t have any consciousness of paralysis and the affect of spinal twine harm. So, they don’t contemplate it, or they overgeneralize no matter it’s they know. Like they assume that regardless of the subject — it’s possibly associated to the truth that I’m paralyzed. I feel my main piece of recommendation is to get extra training and, if in case you have a affected person who’s paralyzed, studying extra about potential impacts of that.
I’m lucky: I stay about 50 miles away from Miami. The College of Miami Hospital has a widely known Spinal Wire Damage Program, so I’ve been capable of finding some docs there which have extra data than most. However I feel lots of people don’t have entry to care like that.