It was just supposed to be a routine dual procedure. Two simple operations that are done ten or twenty times a day. Maybe not together, but still. But then, there was the accident at the stop light, followed by a screw up or two during that double op surgery. And after all that, there was the other problem.
But I’m getting ahead of things, let me back up and start from the beginning ...
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
I think I was five when I saw it for the first time. What I remember the most was seeing these plastic hoses that looked like they were attached to this woman’s neck. They came up from behind and across her chest where they came together at, and went into, the front of her neck. I think that she was in a big wheelchair with a motor that maybe rolled around on its own? Hey, I was five and Mom kept me at a distance so I couldn’t see too much.
But what I did see, that image stuck with me and I’ll never forget it. I was deeply intrigued and at the same time repulsed. In the intervening years I would always keep an eye out for it, not like I saw it hardly at all in public. You just didn’t see all that many high level quadriplegics with ventilator dependency rolling around. Even now, when the idea that the disabled should be hidden away in remote facilities is fading, you still don’t see that many high level quads going out. It’s probably difficult for a lot of them to plan for all of the gear and equipment they need to have on hand just to sustain the basics of life.
Still, there were the odd sightings that sustained my curiosity. I mean, I didn’t understand back then how it was even possible to keep living with a plastic hose shoved into your neck? Could you take it out to shower? How would you sleep like that? Did anyone even want to play with you? Could you even play at all? I just could not imagine how it could possibly work, and even back then I never wanted it to happen to me.
Once the internet showed up, it was simply a matter of doing a search to pull up images and information on what someone wanted to find. In time I learned the proper nomenclature for all the possible accidents, injuries, parts, equipment, and procedures that led up to having those hoses hanging from a neck. And even knowing some of the ugly truths I remained fascinated.
As a young child I did go through a phase were I did want to have my own breathing hose. I was still repulsed by it, but I was also in a bit of a rebellious phase and tried to do things that were not normal to gain popularity. I thought I’d be popular and the other kids would want to be near me if I had one to show off. The first time I asked my parents if I could get my own breathing tubes was a shock for them, and their response was a shock to me. I’d never been denied a reasonable request before, and I thought it perfectly reasonable as a seven year old that I should get my very own.
Mom and Dad were busy working in our little vegetable garden in the back yard when I came running out. Just the day before we had been out shopping and I’d sighted my second person with those cool plastic hoses. That time it was a boy closer to my own age in a motorized wheelchair that rolled past following his parents through the shopping center. I had pointed and called out to my mother which of course embarrassed my parents to no end. They had explained to me only the very simplified basics of what I had seen so at that time I didn’t know what it all entailed to actually have something like that. I thought it was some awesome toy or accessory that you could go down to the store and pick up.
“Dad, Mom, where can we get a ven- ven-tuh- ... breathing hose?”
Startled, my father asked, “Why do you want to know?”
“Because I want to get one for myself,” I stated with great authority.
“Honey, you can’t just go to a store and buy those things,” Mom replied in shock.
“Why not?” I wanted to know. “I’d be the first one in the whole block to get one and all my friends would come see it.”
“Oh sweetie. It’s so much more complicated having a ventilator and breathing hose. It’s not a fun, play time toy.”
“But why not?” I demanded. It didn’t seem like such a hard thing to have to a seven year old.
Mom looked to Dad and he wiped off his hands and sat me in his lap.
“That boy you saw yesterday has to have a ventilator just so he can breathe. It’s not a status symbol, or a toy to pick up and then discard when he is tired of it. If he takes it off then chances are that he will stop breathing and could die.”
“But, I remember seeing a lady one time with something just like it and she was an adult. I want one too,” I started to cry.
“That boy and woman probably were hurt very badly and need those devices just to keep them alive. Along with having a machine and hose, they also have a hole cut in their neck with another type of tube stuck in the hole leading to their lungs which lets them get the air they need to breathe.”
Heartbroken and scared, I ran up to my room where I threw myself on my bed and sobbed. Why couldn’t I have a breathing hose without having to get in an accident and getting hurt? It just didn’t seem fair. Ah, the innocence of youth.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
When I was around nine years old in the fourth grade my family went on a Christmas season road trip. The trip out to our relatives in the north-eastern parts of the country went well, and the holidays were about as great as any child could expect with treats, presents, and good times with extended family. It was the trip home that got us, and me, into a bit of trouble.
We encountered a snowstorm on the freeway, and Dad felt that he had a good handle on things. He did fine driving in the blowing snow, carefully keeping his speed down and maintaining a good distance from other vehicles. It was the other drivers that became the problem. Dad kept tabs on the local AM radio stations as we drove to stay abreast of any traffic issues. Hearing about a new pile up ahead of us on the road we were on he knew to slow down even more and take it easy. He still had to brake hard when a driver in front of him slid and bounced their car around in the snow drifts to either side of the road, and narrowly missed a collision from the front. The driver behind him however, did not do so well and plowed right into our rear bumper with a great deal of force.
We all got knocked around a good bit, but it seems I got the worst of it. Mom and Dad, of course sitting up front, were both leaning back against the headrests when the hit happened. My older sister, who was in the backseat with me, was sitting up to look forwards but with her back against the bench seat. I on the other hand, had my seatbelt pulled looser and was sitting forwards about to ask Dad a question when we got hit. My seatbelt did immediately contract and pull me back, but it could not stop my head from whipping back and forward from the impact.
The guy hit us hard, and all of us were complaining from some level of pain in our necks. We were taken out of our car in emergency neck braces by the EMT’s who showed up and we got transferred to the local hospital to be checked out. My parents were mostly protected by the headrests it seems, and got diagnosed with relatively simple level one whiplash. They were given over the counter pain relief and soft foam collars to use for a week or so until they felt better.
My sister didn’t have a headrest and was diagnosed with a grade two whiplash. She got some low prescription pain relief and a soft foam collar she was to wear for two or three weeks then start to use it less as she was able to.
As for me, well, I didn’t fare nearly as well as the rest of my family. I had a grade three whiplash and had to stay in the hospital for three days. I got put in a hard collar for a month, got told that I had to rest and take it very slow and easy for that same month, then I was able to downgrade to a softer foam collar for a couple weeks and then less and less as needed along with slowly increased activity levels. I also got some pretty good pain killers prescribed for me to start out with. All that was probably due to the fact that I was experiencing a lot of pain, definite numb spots in my neck, a constant ‘pins and needles’ sensation in my shoulders and upper arms, and trouble with both talking and swallowing. Not to mention the dizziness trying to sit up straight that for the first three days literally had the room spinning.
None of us felt like doing anything for two or three days right after the accident, but Dad toughed it out and was able to determine our car was still drivable and could get us home. How he managed to drive with his whiplash I don’t know, but he did it and we got home safely and the car went to the dealers for repairs after that. Once I was released from that hospital I still had to travel with my head in my sister’s lap on a pillow as I quickly got dizzy and car sick otherwise.
Once we got home I didn’t want to do anything for the rest of the initial two weeks following the accident. After that I began feeling better and before the end of the month that I was supposed to be quiet and in that hard collar I was chaffing at the restrictions. Mom kept me pinned down though and made sure my teacher at school understood my restrictions clearly so I couldn’t get away with anything there when I did go back to school. My sis is pretty good to me, and even kept wearing her soft collar with me until I got out of the hard collar. Then around home she’d put hers back on fastened loosely so she could still move so there would be two of us instead of just me in a collar. When I went down to my soft collar hers mostly disappeared unless her neck was actually bothering her.
My Dad was always proud to say “I don’t care how many cars the company makes in a year. Make it with quality and I’ll come buy it.” That car probably saved us from worse injuries all told, and back then it was not written off by the insurance either I learned later in life. We kept if after repairs for many years until we finally traded it in on a newer car.
I will admit, the experience of being kept in the hospital and the months of recovery afterwards for my neck pretty much took care of any lingering need to have a ventilator and air hose of my own to show off. It still did little to remove my curiosity though, but my searches were slowed. Little did any of us know just how far reaching the injury to my neck would go.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
Of course as I continued to grow older my intellectual understanding increased which helped to gain knowledge. Which in turn gave me a better understanding about what these things were and what normally transpired in gaining the assistive breathing devices.
In the majority of cases a traumatic injury occurred resulting in high level of paralysis where the individual was left unable to breathe on their own without mechanical assistance. In a smaller percentage of cases the person was born with a genetic abnormality that either resulted in requiring help breathing from birth, or led to a weakness or deficiency later in life. There were even a rare few that developed an inability to breathe for unknown reasons that made up a very small percentage. I learned that was called an idiopathic disability. What ever the mechanics of being unable to breathe on their own, the end result was the same with only minor differences in the equipment used and at what level they were needed.
In most cases, an endotracheal tube would initially be inserted through the mouth, past the larynx – or vocal cords – and into the trachea for a limited time usually lasting around two weeks. Once approximately fourteen days have gone by with the person still unable to take sufficient breaths on their own, then a tracheotomy would usually be performed to insert a tube through the neck and into the trachea bypassing the larynx and upper airways altogether. Single or dual oxygen hoses would be connected to the trach tube allowing mechanical intervention with a ventilator to either assist with or fully provide the necessary air to breathe. Assessments would be done on a regular basis at first in an attempt to get the individual off the ventilator, but as time passed some would settle down into a more permanent requirement of ventilator dependency.
Now, one of the things that managed to slip past us, us being me and my family and the doctors since it never got reported, was that I suffered some lasting damage from that whiplash accident as a nine year old. Once I was allowed to be a kid again I experienced trouble breathing under increased physical activities; be it extremely stressful or prolonged activity.
I was energetic, but I’d never been one of those ‘child hopped up on sugar to an eleven’ types. While I ran around with my friends I had generally been a little more sedate and didn’t tend to push myself like the others did. After the accident I’d take more rest stops to ‘take a breather’ so to speak, and it just kind of went under everybody’s radar that I was slowing down more than usual as I didn’t complain about it. Looking back I can remember that I found it harder to get a good deep breath if I’d been exerting myself, and it felt like I needed to force my tongue forward out of my mouth so I could actually pant better. As I had issues with running around continuously, and I was a gentler child to begin with, I wound up spending more time sitting with the girls participating in their more sedate activities and got to know and be known by them better.
All this is to say that my eyes were opened to the reality of neck injuries to some degree, and what life on a ventilator might actually be like. But having no direct contact with someone who had to live with a vent I still didn’t fully grasp what it was like. As I learned and aged I still felt a deep curiosity about what it would be like, but my desire for popularity by having one of my own was properly quashed. In my lack of proper understanding I figured needing to carry around a ventilator would be doable and not that bad, but it was no longer something to try for.
Then things changed when I turned thirteen.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
When I started seventh grade we had a new girl start at our middle school. The family had just moved into town a couple weeks before school started so nobody really knew who they were yet. The girl’s name was Andrea Stapleton. They moved into town to get away from their old home and start over in a new place according to her. Andrea was special as she didn’t have to do anything to pass her P.E. requirement other than show up. That’s because she was in a wheelchair. A motorized wheelchair to be precise.
I learned from talking with her that Andrea had been in a diving accident. She broke her neck trying to dive into too shallow of water and damaged her C-four vertebrate the worst. Her C-three, C-five, and C-six also were damaged, but the C-four took the hardest hit. It resulted in a burst vertebrate and to fix it she had her neck fused from the C-two to C-seven, leaving her with an obvious scar down the back of her neck when she pulled her hair up in a ponytail – which wasn’t often.
Because she had zero feeling or movement from the bottom of her ribs down she needed the power wheelchair to get around in. She had a manual wheelchair she could use, but it was such a big effort to push herself around in it that she stayed with the power chair most of the time. From her ribs up the feeling basically faded in degrees until it got to almost normal at her shoulders. Her muscle control was not as good so it was easy for her to tip over sideways if she forgot to use her chest strap. Her neck was weaker than normal but she only used her headrest infrequently.
Her hands and arms were affected to differing and lesser degrees. She had reasonable control and feeling at the top of her arms that faded going down, with her hands having the most reduced sensation and control. She would use adaptive aides so she could read a book or write down her own homework and test answers; writing was just a bit slower for her than the rest of us. Eating was the same; she had adaptive utensils to use so she could eat with the rest of us. She’d just give her plate to the lunch person behind the serving line so they could put her selections into the right compartments of the plate. She was also able to self cath on her own most of the time unless she was really tired, and the nurse took care of it when she couldn’t. Her bowel routine was done at home in private.
From day one it was explained that while she had a daily attendant around the school for assistance, they would be staying in the nurse’s office to help out there most of the time unless Andrea was having some type of emergency (which did happen from time to time). Most of the time she greatly preferred to try to do things for her self as much as possible and preferred to ask for help from other students as needed.
Her ‘student aides’ did get split up amongst ourselves so the same person was always available to her depending on which class she was in at the time. To my satisfaction I was selected early on as a volunteer to be one of those aides, and the only boy selected as well. I mean, how could I not do so? Despite being moderately repulsed on a personal level by her disability, my intellectual curiosity was stronger and overrode my ‘heebie-jeebies’. I would be able to talk with her and learn even more about what it was like to live her life like she did.
The greatest factor for me was that Andrea had a permanent tracheostomy in her throat. She was able to speak almost normally using either a fenestrated trach tube, or a speaking valve. It would change back and forth over time between the two choices, apparently to her own personal whim. When it was time to change her trach, apparently she’d choose to go with a fenestrated or non-fenestrated tube depending on how she was feeling at the time. I think that she always used a cuffed trach tube though, as I recall. I don’t ever remember her without the tell-tale cuff inflation balloon hanging down below the trach.
For those not in the know, a fenestrated trach tube has either one large hole, or several smaller ones, on the top of the curved portion of the tube that goes into the neck. Obviously a non-fenestrated tube has no holes in it. The holes allow air to flow up the windpipe above the level of the tracheostomy and pass through the vocal cords to allow for better self respiration and speech. For the types of tubes that have an inner tube, or cannula, in them those can also be fenestrated or not. With a cuffed but fenestrated tube the air will still be able to pass upwards even with the cuff inflated, it just all has to go through the tube that way.
Andrea’s voice was easily understandable, she’d apparently had a lot of practice with it, but it was a little light and she did have to take breaks to breathe more often than other people did from time to time. Nor could she yell with any increased volume at all. If there was a loud crowd or loud noises around then it could get hard to hear and understand her.
As an accepted student aide, I got to switch my seat around so that I sat next to Andrea every time in all the classes we shared, which that first year was three. She quickly taught me that I just needed to sit back and relax and do my own thing until she asked for help. We did eventually fall into a basic routine though.
Depending on who got to the room first, I’d automatically get her backpack out from behind her seat so she could get out what ever books and/or supplies she wanted to use for the class. Most of the time I was there first, and I’d just grab the bag as she rolled around to get her chair in position to look at the front of the room. If she got to the room first I’d usually find her trying to pull the bag around and I’d reach over and give her a hand with just a simple look.
We got to know each other fairly well that first semester, and by the end of those three months I’d be going over to her home fairly frequently after school so we could study together. There were usually two to five other girls that showed up each day as well, and we formed a regular study group that helped everyone to keep up a better grade average that year.
Andrea got to know me so well that she even noticed my little breathing issues, and she asked me about it one day.
“Jeri, mind if I ask you something?”
I was Jeri to the girls we knew and they considered me one of their inner group. I had always been a bit smaller than the other boys, and having been much less into the rough-n-tumble style of play favored by the rest of them, I got along with the girls better most of the time. That held true on through both middle- and high-school. Heck, I was even able to form words into complete sentences instead of simply vocalizing via cursing and grunts. (The conversations those girls had at times with me around made me blush; and I learned a good bit about how they view quite a few of the boys in school.) Hehe
“Sure, ask away,” I told her.
“I’ve noticed that – you need to slow down and breathe more often than – some people do. What’s up with that?”
“Uh, not sure really. I’ve kinda always had to do that ever since I was around nine. We had a bad car wreck one Christmas and all of us had to wear a neck collar for a bit. I got it the worst and my collar started out as a hard one for like a month and I was forced to be quiet and take it easy while I healed. After that I just didn’t ever seem to have as much breath in me and I have to slow down or stop to take some breaths.”
“But, I’ve seen you panting like a dog with your tongue hanging out!”
“Haha! Yeah. When it gets bad I have to push my tongue out of my mouth to get it out of the way so I can breathe better. It kinda sucks but that’s just the way it is I guess. It’s no big deal, not like I’m on the track and field teams, or out on the field with one of the sports teams. The coaches know and they give me some slack.”
“Alright. If it’s not a real problem for you and the school knows – then it’s none of my business. I just though you may have had a spine injury like me.”
Oh how the Fates love to play with and torture us mortals.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
There’s another thing about me that becomes very important to this part of the tale. Ever since I was about six or seven, I’d been experiencing chronic bouts of tonsillitis. It could be as simple as having a sore throat and a little trouble swallowing for a week, to having a majorly sore throat, unable to swallow anything, and total laryngitis for up to a month – though that long was rare. If it did get that bad then in would go a feeding tube up my nose until I could start swallowing on my own again.
The last bout of tonsillitis had hit me during that first semester of middle-school hard enough to require a feeding tube again, but it only lasted for two weeks that time around. My Mom had enough of these constant problems and demanded my doctor do something about it. He finally gave up and scheduled a tonsillectomy early during the third semester of school in the spring. I still had to suffer through fall and winter, and had yet two more, albeit lesser, bouts through the winter.
Since the surgery was not due for a while, I had time to work on convincing Mom that I needed to get rid of the ugly skin tags that I had growing on the tops of my ears. They were getting big and unless I just covered my ears completely I really didn’t have any way of hiding the nasty things. I wore her down until she eventually relented, and I got the addition of having the ugly things removed at the same time as my tonsils during the same operation. Both procedures were deemed fairly simple, run of the mill operations, and the Ear/Nose/Throat surgeon doing the job chose to do it all in one go which was fine by me.
As the date got close we received further instructions for what to expect and do leading up to the surgery, and what to expect the day of and afterwards. Since I was going to have two procedures done together which would extend my time in the OR, the surgeon was going to use an ‘Intermediate Cervical Plexus Block’ along with light general anesthesia during the operation. The light anesthesia would not put me fully to sleep; instead I’d be in a twilight dream where I’d still be awake but not really aware of what was going on. The Plexus Block would be there to block all of the pain from having both my throat and ears cut on and sewed up.
I learned just two days prior to the surgery, during a final consultation with the surgeon and anesthetist, that they’d inject some of the drugs in an IV, use a mask to give me oxygen and other gases, and once I was ‘out’ shove an airway up my nose and down my throat into my windpipe so I could still breathe during the operation. Once everything was done then I’d be weaned off the imitation airway during post-op and before leaving recovery have the tube removed prior to going to a room for the night. I’d probably still have a mask for a few hours to supply some extra air and by the next morning I’d be breathing all on my own again.
If only it had worked out like they said.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
I didn’t ‘wake up’ again for a week. And even then I was still so out of it I don’t remember anything at all that happened for another week. I had to be told about what was going on for the following four weeks after that operation. My memory does start about two weeks after I went in to the OR, but for those two weeks where some type of memory did start up again they are so jumbled and broken up that I don’t trust my memories of that time. What I’ve been told is that the ‘Intermediate’ block that I had got screwed up, badly. Not only did the needle go deeper than it should have, but the anesthetist also injected more of the drugs than they were supposed to as well. About twice as much from what I’ve been told.
The mess up caused the stuff to spread further and deeper than intended which affected my ability to breathe on my own. Due to the infusion of twice the amount that was supposed to be used, my body also went into a kind of toxic shock. The drugs did their job, but my body essentially went to sleep and failed to wake up again. When I came out of the operation I could not breathe at all and it did not get better. This left me dependant on a ventilator to breathe for as long as I was asleep, and I was not waking up.
I had dropped into a coma.
(On a side note, mine was one of many cases from those times used to get these types of injections done with the assistance of a fluoroscope or ultrasound to see where the needle was being placed instead of ‘by feel’).
On top of that they had to wait until I started to wake up and could follow basic commands to figure out if there were further effects from the failed and screwed up nerve block. By the time I have regular memories again I was already more than a month into being vent dependant and they had already gone and done a tracheotomy on me and I had a tube stuck in my neck so I could breathe instead of going up my nose like had been used in the operation and subsequently left in for two weeks afterwards.
While I was still dubiously remembering anything, I was apparently responding well enough they started running tests on me to see if and/or what else had been messed up. And there were several problems found.
Again, once I can actually remember everything, I found out through my own trial and error as well as being told, that I had suffered a ‘cervical lesion’ from those drugs begin injected into my neck and inadvertently my spine. I was initially classified with a Complete C-three Spinal Cord Injury (or SCI). In short I could not feel or move anything from the neck down, and I was unable to breathe on my own. Basically, the drugs they used caused a reaction with my spinal cord and nerve roots completely paralyzing me from that level down and my body was unable to respond to any commands that were sent from my brain.
The doctors were hoping that the effect would start reversing itself soon and wear off over time. They were not, however, giving us any answers as to just how much this was going to affect me both short and long term, nor how long it would last. They were taking a wait and see attitude and we got told to just “take it day by day and see what happens”.
Obviously this frustrated all of us (my family), and my parents did not take it lying down like I had to. At first it was simply trying to figure out what was going on with me and wanting, and then demanding, answers. When that seemed to run into a brick wall my Dad made good on his threat and got a legal firm involved. When the lawyers started talking lawsuits the doctors suddenly opened up and we began to get some answers.
We learned about the mistakes, and their tests and exams they ran found the nerve damage to both my Phrenic and Vargus nerves that I’d been living with ever since the whiplash I suffered at nine years old. They tried to say that the unknown but pre-existing nerve damage was at fault but the lawyers were having none of it and rightly so, pointing out that the anesthetist had majorly screwed up and my body had an adverse reaction to the excessive flood of anesthetic drugs that had entered my system. The existing nerve damage simply exacerbated the situation but in no way absolved them of the actual cause of my paralysis. With the lawyers pushing back they eventually relented and honest talks took place about what compensation and expected treatments we, and I, would be receiving going forwards.
I was still thirteen, my fourteenth birthday was a month away, and now I was basically just a head stuck on top of a column of warm, unresponsive flesh that had to be taken care of like a baby. I didn’t take it well, but there was nothing I could do about it for myself. The only thing that helped relieve a little of the stress this caused me was my deep curiosity about how someone could live like this. I was going to find out for myself with an upfront and personal seat to the show that my life was going to become. My birthday passed by quietly with everyone forgetting about it until the very day. I somehow conveyed that they should not try to make any fuss out of it at the time and I just got some heart felt happy birthday wishes and hugs from my parents and sister. Years later when I look back I kind of wish they had made a bigger deal out of it, but as they say, hindsight is twenty-twenty.
With little apparent change to my situation six weeks after the botched operation – the tonsillectomy and ear tag removal went fine, but I think with the overall results from that time in the operating room it can officially be considered a failure – they moved me to an inpatient rehab hospital to begin teaching my parents what needed to be done to take care of me. I’d need twenty-four/seven monitoring and assistance for everything seeing as how I was unable to move anything besides my head and still had to be on a ventilator to breathe. That would probably mean hiring an agency to provide assistance with one or two full time attendants, depending on me and my parents’ wishes. They had to learn about my ventilator settings to keep me breathing normally, how to suction the slime out of my tube and trachea to keep my airway cleared, how to feed me, how to maintain my bladder, and how to perform my bowel routine which would be properly established in rehab. And that’s just a quick over-view of some of the major requirements for my care needs.
The hospital had put an indwelling catheter in me and a diaper around my crotch to handle my urinary and bowel outputs. They would basically just let me shit myself and then clean me up afterwards with a wipe down and a new diaper. The catheter drained my piss into a bag they would come in and empty when it got filled up to a certain point. That Bee Ess stopped once I got into rehab, and the team there did some tests and began trying to teach my body how to perform bowel movements on a set schedule.
My bladder decided it was going to be a leaky little twit so the indwelling cath remained the go-to for a while. My bowels did a good bit better and soon learned that evacuating between the times they began to impose on it was not necessary. In due course, and a short one at that, I was having a bowel routine with a stimulated bowel movement just once every two days. Over time I’d learn what foods and medications would upset my bowels and cause the dreaded diarrhea. Let me be the first to say that it is better for all to avoid that happening. Just, eww.
It took noticeably longer for my bladder to get with the program, and really, it was a toss up if I ever got better in that regard. I did get the constant Foley cath out, but I still dribbled enough, and had enough frequent small accidents, that I could never get rid of some type of absorbent undergarment; either a thick pad between my legs during the day or an adult diaper at night. A regular intermittent cath routine eventually got worked out and maintained which did help reduce the amount of leakage and decrease the frequency of accidents at least. A few years later I had a revision surgery done to switch me to a suprapubic catheter setup and close off the original sphincter to my bladder that stopped the constant leaking and (most of) the accidents for good.
It took months, but my paralysis did eventually get lower, to an extent. Once someone realized my motor control and sensation were gaining ground going down my previously unresponsive body, I’d have regular assessments done to see where I was at. Slowly my official ‘rating’ went from C-three Complete to a C-three Incomplete, and an A to a C on the AISA scale. Andrea was a C-four Incomplete ASIA C for comparison.
Now this may not seem to be that big of a change, and on paper it’s not. But, being an Incomplete SCI means so much more in practice. The C-three denotes the upper limit of my injury level, or where the SCI starts to affect me. But Incomplete means there is some detectable level of sensation and/or motor control below that point. My level of sensation took it’s time but over about six months I regained feeling down to the middle of my ribs at about the level of just below the pectoral muscles, or the T-five T-six thoracic level of the spine. That also meant I regained something in my arms, hands, and most of my fingers.
What I have sensation wise is limited, but I’ve got it. From my neck down to the T-six level I can feel touch, but it’s fuzzy, or distant. It is at the best up along my shoulders and base of my neck and it slowly fades going down to where I finally lose it completely. Still absolutely nothing at all below the T-five/six level to this day.
Going down my arms it is surprisingly more consistent and more ‘there’ if you get my meaning. It’s not like my torso which is distant and fuzzy, instead it’s a lot closer to actual touch and I can feel the difference between dull and sharp objects at the top. Hot and cold still frustrate me, with those sensations not showing up right away if at all, and when they do it’s still dull and hard to tell just how hot or cold something is. My hands are similar to my arms, just less so it’s harder to differentiate sharp and dull and a couple of my fingers remain unfeeling no matter what. That is just my ring finger and pinky for both hands, so at least in a way it remains consistent. The hot/cold perception remains dangerous in that I can still get burned or frozen and not know I’ve suffered a serious injury until I or someone else looks at it.
Motor control is a different matter. It’s taken me a lot longer and an uncountable number of hours of physical therapy to get to where I’m at right now. My core control has regained some usefulness, but it’s weak and the assistance those muscles are able to give is minimal at best. That same T-five/six level applies here too. I’ve got no control of anything below there.
I’ve ultimately gotten to where I can move my arms around along with my hands and some fingers, but I chose to stay with my sip-n-puff controls on my power chair instead of hand controls to this day. I can contract the fingers I can move (my pinky is dead, but I do have some control over the ring finger), but I can’t extend them on my own. Normally, my fingers remain curled into my palms and to get them to stretch out takes an act of dragging my hands against something – be it the opposite hand, a table, wall, armrest, etc – to get those digits to open up. I can do this so I can get them to curl around something which can help to drag that item towards me, but they don’t do a whole lot when it comes to being able to pick something up. I can press my wrists together which causes my hands to bend back if there is something between then like a cup or mug, but that doesn’t exactly mean I’ve got a good hold of said item. My available arm and hand strength limits me to fairly light items like an empty plastic mug at best, around about just three or so pounds max using both hands together. I am still working out the needed coordination for controlling an adapted U-shaped joystick with my hands/arms, but it is something I may never get to. It’s been years and I still haven’t got it, so I don’t really expect it to happening anymore. Doesn’t hurt to try, and regular PT still happens, but not counting on it.
Something else I learned about early on through direct experience, and which Andrea had tried to explain to me a few times before my own injury, was AD or Autonomic Dysreflexia. Those two word or little letters are a hot spot of trouble for anyone with an injury at or above the T-six line. AD can still be an issue for those with injuries lower than that, but it is a lot less common in that case and less of a concern about potential fatality. I’ve experienced it multiple times up to now, and usually it’s from some seemingly minor little issue that can be easily resolved. I’ll just say that I make sure that I perform my regularly scheduled cathing as close to on time as I can, without fail.
AD is generally caused by something below the injury level going ‘wrong’. A full bladder that needs to be emptied and is spasming, any type of injury to the body that goes unnoticed like deep cuts stabs or even bruises, broken bones that go unnoticed, or being too hot or too cold are just a few examples. Basically, any problem that would get a regular person’s blood pressure elevated. What generally happens is the heart rate drops, blood pressure shoots up, the person begins to sweat above their injury line, the face goes red and blotchy, and they can suddenly develop a pounding headache among other things. The blood pressure is the biggest concern, and can have fatal consequences if not lowered quickly. After getting the blood pressure under control then the underlying problem can be resolved.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
At about the five month point or so post injury I was able to return home again, but I was still going back to rehab on a daily basis. With all of the doctor and PT appointments I went to, I learned to recognize several of the other patients I encountered on a regular basis. Now, due to how things would get scheduled, I ran into kids around my age range more often than I did younger children or adults, which I learned was by design. It let us all see someone else like us in similar situations and we could begin to build friendships if we chose to.
My ‘regular’ doctor, or what most people call their PCP, was my doctor -only- as far as it came to my family. My new doc was Doctor Aubrey Hicks, MD with specializations in para- quadriplegic disciplines. She didn’t see ‘normal’ people for a general practice. My family still had a regular GP who they’d go see, and had been seeing for years, but I needed a more specialized doctor who was familiar with all of the issues that a high-dependant quad like me had to deal with. My old doctor who still saw the rest of my family was made aware of my situation and on-going health care, but he pretty much never got directly involved with my care again for the most part.
To my joyful surprise, Andrea turned out to be a patient with the same doctor and rehab group that I wound up seeing. She knew what was going on with me as there had been visitors from my class, primarily girls, who had kept her informed of my progress. From this Andrea had put word out amongst her medical professional community that if someone with my name were to show up then she’d like to know as we were friends. So it was just my surprise the first time that I encountered her in PT one day; she knew it was coming and even which day it would happen about three days in advance. It was about a week or so after I got moved to rehab that I found out.
I had been in the main torture chamber, other wise known as the therapy exercise gym, for maybe five minutes when I heard a power chair enter the room. Nothing new considering where I was and since I was laid out on an exercise table having my legs and arms worked through passive range of motion I couldn’t exactly turn to look around. Imagine my surprise when I heard the chair stop nearby and a voice that sounded -really- familiar called my name.
“Hey Jeri. Imagine meeting you here.”
My eyes must have gotten pretty big as my Spanish Inquisitor (“Nobody expects the Spanish Inquisition!”), my Therapist actually, laughed at me.
“Yes Jericho, it’s Andrea,” they informed me. “We knew that she’d be in today for her regular fill up of torture and set you up for a surprise.”
“I come in once every two weeks for PT and OT therapy for half a day,” Andrea told me while I continued to get stretched. “We are seeing the same doc as our Primary Doctor too, so we might bump into each other there also.”
I assumed she could see me better than I could see her and I gave a big smile. I was still stuck on full time vent support so I couldn’t exactly respond in kind. Having someone I knew showing up at the same place for the same things helped me more those first few months than I think Andrea could ever know. While I didn’t make it back to school that year, we did go back to school together during our second year of middle school.
However, before making it to my second year of middle school a problem that happened early that summer made yet another major change in my life. It also helped solidify my circle of friends for the better part of high school as well.
-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-*-
I’ve already mentioned that there was something about me that was very important to this tale, and I’ve gone over how a childhood car accident and chronic tonsillitis combined to really screw up my life to this point in the story. Well, there was another ‘thing’ also waiting to play merry hell in my life. Nobody in my entire family knew about it because we had been lied to. By doctors. Again. Or really, for the first time.
The second or third month I had been back home from the rehab hospital was when a major problem occurred and brought this other thing to light in a drastic way. I thank the gods that I was in PT when it started up.
I was going through my usual routines of stretching and working on what control I was trying to rebuild when I began to feel off. I indicated I needed a rest for a minute, but while I lay there I quickly got worse. I began to sweat profusely on my face and scalp, yet when they therapist checked for a temp he said I felt cold and clammy. The room began to spin and I think my eyes started to roll up behind my eyelids to only show the whites while an incredibly horrid headache assaulted me. It only took a minute for them to realize I was experiencing a major AD attack and the place just about exploded into action.
It was quickly determined that my cath and drainage line were not kinked, I was still getting plenty of air through my trach which was not plugged, and within a few more minutes a fast test with an irrigation syringe showed I was not retaining any urine so the Foley I had in was not clogged. They even did a basic test for, and ruled out, possibly impacted stool. Let’s just say that leaves ones butt-cheeks feeling a bit greasy (if they can feel them) and leave it at that. This got all of the therapists and a couple of doctors confused as the primary and usual triggers were not present from what they could tell, and as I was still fairly new to my SCI I didn’t really have any personal triggers on record yet.
Not knowing a better course of action and having a patient still experiencing a major episode, one doctor pushed for and got an emergency ultrasound ordered for me. They were looking for anything with my bladder and in the lower colon their previous tests may have missed. What got found though was completely unexpected.
You see, as a toddler, when I went through potty training of course I learned to pee sitting on a baby toilet like most other children did. As I grew up, I never did “learn” to use a toilet or urinal standing up. My urine flow was messy to be honest and sitting down just made things so much easier and left a lot less to wipe off once I was done. Not seeing any need to change my own habits it did not feel like that big of a deal to me anyways so that’s just the way I always used the bathroom if I needed to pee.
When the ultrasound tech ran their scan they encountered a ... how did they put it in my records ... a discrepancy. Yeah, pretty small word for a major life changing event, for the second time in less than six months, that scan was about to set off. That ultrasound got me bumped to the front of the line for an emergency MRI scan. And the results of that scan got me sent straight into emergency surgery.
My family and I thought that I’d yet to start puberty even though I was now fourteen. My testicles had yet to drop, I’d not begun to grow any facial hair, my voice still had not changed, blah blah blah. All the things that a boy experiences either before or when his body starts to flood with testosterone and other chemicals at the onset of male puberty. Wrong.
It would seem that in fact, yes, I did start puberty. Just not how nor the one we expected. I’d finally begun a -female- puberty during the last month or two and due to my SCI nobody realized what was happening before it became critical and life threatening. My uterus was trying to have its first menses and there was no exit path for the ‘flow’ to exit my body. They had to cut me open and surgically create a vaginal pathway for everything to come out. This also meant that I was quite possibly fertile seeing as how it normally took ovulation of an egg to float around until it became implanted in the lining of my uterine wall without becoming impregnated for ‘Aunt Flow’ to show up. It’s not a guarantee mind you, but a pretty good indication all the same.
Of course I got yet another hospital stay due to this. And a short bit down the road even more follow up surgeries to look forward to since this ‘first’ one was just to keep me from dying from something nasty like a stroke, or an aneurism, or sepsis. Once I was stable again they had me back into the OR with plastic surgeons to actually give me a more natural feminine look down there.
Being a ‘late bloomer’ had nearly done me in. Thankfully, both the skilled hands of the surgeon and the hands of nature worked together to turn what was originally thought as a proto-scrotum into a more natural, and working, vagina. The surgeon was also tasked with doing a bit of re-routing of my urethra seeing as how the exit that existed at that time was misplaced right below what was really my clitoris. It got moved down a bit to a more normal location somewhere in the outer folds of my newly created vagina.
Nobody had noticed that what I was calling my ‘penis’ was not even big enough to count as that male organ. Fairly understandable in hindsight, seeing as how I had not actually taken any health classes yet; and since I was quite small I had not had opportunity to compare mine to other boys. Of course, everyone wanted to know how something like this had been missed or was not in my medical history. More blood got drawn to do genetic testing along with a few other tests, and medical records began to be scoured over going all the way back to my birth records. The hospital records where I had been born had to be requisitioned from another state and took a little while to arrive.
Once those blood tests and old records were reviewed we learned I had never been a ‘boy’. My genes showed a definite XX chromosome with a little ‘y’ addition. This caused my genitals to be ambiguous in appearance. The blood work though showed that I had the hormone levels for a female going through puberty, albeit a little on the low side of the scale. The recent scans with ultrasound and MRI, not to mention the emergency and follow up surgeries, gave a hard lie to any attempt at referring to me as male any more after that. I not only have ovaries and a uterus, which are all fully functional, but now post-surgery I have a vagina.
The requested birth records showed that there was a disagreement between two doctors over my birth. But, due to his opinion at the time based on what appears to be a case of congenital Clitoromegaly, or an enlarged clitoris, the primary physician overseeing my birth chose to call it a boy and even performed a minor surgery on a not yet twenty-four hour old baby to make it that way. In short, there may have been a faux vaginal opening present that got closed up which accounts for the poor location of the end of my urethra winding up where it did. All of this was done and recorded in secret from my parents. They were told nothing other than they had a healthy baby boy, so I was raised as such. Due to my chromosomal discrepancies I had experienced a delayed, late puberty – and all of this combined damn near killed me.
With my physical problems once again ‘fixed’ my continued life was better assured for the foreseeable future. That did nothing however to assuage my mental problems that were just hitting me one after the other. I mean, seriously.
First I get hit all at once with finding out a childhood accident most likely caused a minor paralysis to my diaphragm to some extent leaving me constantly short of breath that went undiagnosed, along with a supposedly routine and simple surgery going south and leaving me suddenly paralyzed to the extent that I was unable to do anything to take care of myself anymore probably for the rest of my life. Now you want to throw in to the mix the fact that I’ve been raised a male of the species for fourteen years of my life only to be told “No, sorry, but you’re actually female” and I’m going to have to live as one and deal with what nature normally gives the female of the species every twenty-eight days plus the hormonal imbalances that go along with it.
Talk about screwing with someone’s head. I was already in counseling due to the trauma of going in to an operation ‘healthy’ and coming out a fully dependant quadriplegic on a ventilator, now I had to find a shrink that could handle my sudden gender dysphoria issues on top of being newly crippled. My current shrink, who I’d only just started seeing at the time of that wonderful new revelation, had no clue when it came to the gender thing. At least they did help to find someone who was able to handle everything altogether. Her name was Dr. Patricia VanHorne. I don’t think I’ll ever forget her. I spent years with that lady and she did help me to rebuild myself again pretty much from the ground up. We got down and dirty and got the major groundwork laid out in the first few months that I started seeing her because one of my goals was to try and get ready to go back to school again in the fall of that year.
Once the word got out, my circle of girl friends quickly banded together and gave me some much, much needed emotional support. They were great. It was more through them that I think I was at least able to pull myself together enough to go back to school on time my eighth-grade year. With me no longer being able to help Andrea in school, and in fact now being someone who very much needed the same help and more, they circled the wagons around the two of us even tighter and made sure that, along with my new day to day care assistant who was always present, they had someone from our tight-knit group there to cover both Andrea and myself at all times. Even for several hours after school too. Weekends were the same, and while Andrea and I did not always get together on weekends, there were always at least two, and quite frequently more, of my girl friends who showed up every single day, if to do nothing more than sit and visit.
In school, for regular class work one of the girls would do the note taking and handwritten assignments or I would dictate via a spoken PC app into a Word document. Initially this caused a bit of an issue when my work and that of my friends work started to look too close to the same thing. Once the teachers figured out that it was because we were all doing our own study group together and one of my friends was doing the written portions of my homework for me, they backed off a bit and simply asked us to make an attempt to make our work appear less similar. Tests on the other hand were always handled by whomever was my care assistant of the day and done in a separate room where I had more time to finish said exams since it took me longer.
I did get a name change quickly processed before going back to school again. Since it had already been in use as a nick-name I just went with Jeri. It was short, sweet, kinda cute really, and I was already used to it. No sense in rocking my boat any more than it already had been. So I officially and legally became Jeri Andrea Winslow. Getting the gender marker changed took slightly longer due to having to get the appropriate paperwork from our doctors pulled together as proof.
It’s been five years since all of that mess tried to do away with me, but I came through it all and I’m still here. Thankfully it seems that whatever gods, Fate, or powers that be decided to stop messing around with my life too much more after that. Not much has changed and it looks like I’ve stabilized at where I’ll be from now on. I am continuing on through life at an easy pace, dealing with things as they come up on a day-to-day basis. There’s the usual drama of being a female teen in high school, or dealing with restrictions put on me by the parents and wanting to push my boundaries, or getting along with my older sister, or boy and girl friend issues, and thrown into the mix the occasional problems my paralysis causes on top of what are my normal routines to keep this mostly unresponsive body rolling along smoothly.
In a nutshell, that’s about it. That’s my story about how I went from a seemingly normal little boy called Jericho Winslow (I never had a middle name originally), to a vent-dependant, quadriplegic, teenage girl named Jeri Andrea Winslow who is going to graduate high school in a week with all of her friends.
