Parents – nothin' specialtb

Learning To Tread Water

It was maybe ’83 or ’84, puts me at around nine or ten, my family & I were heading back from fishing well past James island. It was a bright sunny, summer day, the chop was mild so the boat was in full throttle. I recall my Mom & Sister were sitting in the back two seats, my Father was driving & I was standing on the passenger seat holding onto the windshield feeling the wind hit my body (as I liked to do when it was somewhat calm & going that fast).

We were just coming up on James Island to head around the bend to Taylors Island (Yes the two islands were named James & Taylor, how my Grandfather & Parents found it is another story for another time), anyways James Island was where the campground we stayed it was and where we docked my Grandfathers boat. I don’t believe we had caught anything that day so we were simply taking a joy ride around the islands.

(See it’s a real place & apparently the camp ground is still there hahaha)

Anyway, everyone was happy, the sun was shining bright, I was having a ball standing up on the seat feeling the wind hit me when before I even knew what was going on, I was suddenly weightless hurdling through the air. I hit the water on my back and sank to the bottom, (it was well over my head). I remember feeling the sand on my backside & opened my eyes to nothing but mud and salt water (this was off the Chesapeake Bay, so the water was not clear by any means). Panic instantly took over & luckily enough it was sunny out or I wouldn’t have known which way to go, saw the sunlight blurringly piercing through the muddy water, a ways away, stood up and pushed towards it. Kicking & what seemed like clawing my way towards the light, all under water which now seemed like minutes (it wasn’t, it was prob 5 seconds). I burst out of the water taking my first breath since all this took place, bobbing my head up and down because I hadn’t quite figured out treading water yet (my grandfather had begun trying to teach me how to swim and tread water & i hadn’t actually figured it on the beach).

I managed to actually get it under control enough to see that I couldn’t see the boat, like at all and i was facing the bay. I think at this point, the panic had set in so much that not seeing the boat or my family made me instantly figure out how to tread water and turn. I managed to spin around completely and saw the boat about 15-20 feet behind, drifting, the engine was off. My Mom was holding onto my Sister in the back and my Father was frantically looking around the water. I was so terrified that when I tried to scream, not a single sound came out of my mouth. So i managed to begin slapping the water as hard as I could while keeping my head above water.

The way i recall it was, my Mom seeing me first and pointing me out to my Father, to which he instantly jumped in and began swimming towards me. Which to me, at that point felt like an eternity, and I was beginning to get super tired, since I was fully dressed with shoes and socks on, treading water for what seemed like forever (this may have honestly been all within 5 minutes, maybe less).

My Father got me and scooped me up and began swimming back to the boat, telling me it will be alright but he was also in panic mode, we all were. He gets me to the boat, my Mom grabs me up as he lifts me and then he climbs in. At this point the boat is drifting, the engine is off and the stirring cable on the drivers side was completely snapped in half. They checked me over as I was shaking like a damn leaf, still couldn’t even speak yet, my father was helping my sister who had caught a fish hook in her leg.

Apparently while we were at full speed, the stirring cable snapped which caused the outboard engine to fully run to one side. Now anyone that’s been on a boat & knows how outboard engines were setup, knows that when that happens, it will put 24 foot boat into a complete tail spin & that’s exactly what happened. Since I was standing up on the passenger side, it launched my little 90 pound @ss into the air into the water. (hence the sudden feeling of weightlessness and then SPLASH)

So my Father began calling the coast guard on the CB Radio & I was on my moms lap, in a towel, trying to get my head together enough to realize what had just happened. As I’m sitting there, in full blown tears mind you, i began to giggle & my Mom goes Teddy what are you laughing at. To which I said, my shoe just floated by, I think the other one sank. It took maybe an hour or so for the coast guard to finally get to us and prob another 45 minutes to tow us in.

We get all the way back into the marina, where my Grandparents met us, since by then they had caught news about what had happened. Well, my Grandfather had called the repair guy on the island, to be there when we came in & had the boat fixed immediately. At this point, I was back in the trailer sitting on my Grandmom’s lap, my mom and dad were making sure my sister was alright after they had removed the hook she caught from the fishing rods flying around during the accident & my Grandfather comes walking up to the trailer, tells my Grandmom to let me go, that we were going back out on that boat.

To which i went into a complete melt down screaming no, and he scooped me up like a sack of potatoes, carrying me on his side and started walking towards the boat in the marina. I’m screaming my head off, kicking, punching, nothing was working he had me. My parents come out from around the main store going “Dad what are you doing?!” to which he replies “No grandson of mine is going to be afraid of the water” (Mind you, this was the early – mid eighties so this type of stuff was a-ok 🙂 )

He gets me in the boat, grabs the cooler, throws it in the back, starts the engine which completely nulls out my cries and begins to navigate back out onto the water. Now, he doesn’t take me back to where the accident happened between the two islands, no no… he takes us straight out into the channel of the Chesapeake Bay, turns off the engine, walks to the back of the boat, opens the cooler, cracks open beer and goes “Well Teddy-Bear (he coined that one for my father and then since I’m a jr, for me & still to this day only a very select few have said that to me without bothering me & telling them not to), if you wanna get off this boat, you better drive it back into the marina and dock it”

It definitely took my a minute or so to actually grasp what he just said because I was completely terrified. I managed to muster up “What?” as we are now drifting down the channel, in the middle of the Chesapeake Bay. He goes “I have this cooler full of ice cold beer and I plan on drinking them until we get in, which means, I can’t drive it but I can show you how” Now I’m beginning to get it and being nine or ten years old and told you can drive your grandfathers boat all the way into the marina and dock it, that was simply the coolest thing I could have ever wanted to do at that age.

So I very slowly slinked from the passenger seat into the drivers seat and he showed me what all the controls did. I turned up at him and said, “ready, you better sit down”, turn the key, the engine kicks on, I grabbed the steering wheel and threw the throttle ALL the way down to which he predominantly yelled “SLOW DOWN!” I don’t know about anyone else’s grandfather but when he yelled, you just about shit your pants every time, even though it wasn’t a negative yelling, he simply had that kind of voice where you would literally, nearly shit your pants when he did yell (& it wasn’t that often) To which I jumped and automatically turned the key off and cut the engine, put the throttle back into neutral & we were then drifting again, in the channel. I apologized, but damn that was awesome.

He mutters the famous muttering word whenever something happened that he didn’t like under his breathe “BALLS” Then goes, ok start her back up and slowly use the throttle forward, keeping your other hand on the steering wheel. This time I wasn’t about to gun it, knowing very well I didn’t want to make him mad again. Matter of fact, I was going so slow this time, he even said “Are we even moving, give it some juice”, as he cracked open another beer. So gradually I begin to bring it up to full throttle and this thing could move. He’s showing my how to navigate threw the crab lines that the crabbers left out, see if you ran over them, it could either cut their lines or get spun up into the engine essentially causing you to cut the line (which was very illegal)

I asked if we could go across the Bay to the other side to which he asked “how much gas do we have in the tank?” it was full, he knew it was, he had it filled up before taking me back out & i’m pretty sure he wanted to kill all those beers on the cooler, so we did & then headed back in.

As we got closer to Taylors Island, you can see my parents behind the main store facing us they waved and couldn’t believe that my grandfather was sitting in the back of the boat and I was steering her into the marina. It had been maybe a coupe of hours since he had carried my (90 pound @ss soaking wet) kicking & screaming into the boat, so I’m sure they were not too happy about it.

I get her docked into our slip and my Grandfather ties her up, then lifts me out and we get back to the trailer and he goes “See now he’s not afraid of the boat or the water” since i was all smiles, telling them about what we had done.

After that I was a fish-in-water ¯\_(ツ)_/¯

~ True Story, Dedicated to my Father & Grandfather Houser ~

~Ted

Appreciation

So it’s been a while since I wrote in this, guess I have been busy figuring things out and I finally feel like it’s time to fully appreciate everything that I have. Especially all the important people in my life who have been there during my most recent situation in life with AMC.

It’s rare that you actually have the best support team of friends and family in this world where there is so much going on. I can truthfully say that I do, without their support, their effort to help me through the most difficult of experiences that literally almost had me checking out twice during the early stages of the process. The pain was that intense, that it mentally wore me down to the point of not even thinking of others anymore and seriously considering checking out, because I knew the pain would stop. Having the group of people around me during that time, constantly checking in on me, always letting me know they were there, even though I was so out of it on the planets strongest narcotics & opioids was an essential key.

My Mom had to see her son go through what even she said was up there for going through situations with AMC, although she said, since I went through it as an infant then I can survive it as an adult. Accept she liked me better then dealing with it then because I wasn’t as much a pain in the ass, mostly because I was an infant hahaha.

J & his entire family fully supported me during the entire process from the moment I noticed something wasn’t right in the elevator in Chicago with J, to where it has brought me now. Helping me through every hurdle from learning to deal with the intense pain I was in, to helping me escape the opioids & narcotics that had me trapped within my own head.

My roommate, Tom, at the time was the everyday person that saw me go from life at 100 miles an hour to barely being able to walk down the stairs. A saint by any means that’s for damn sure.

Reenee for being the key player in all of this that helped me get to the right Dr and actually find one that was confident enough to help me and did an amazing job, hence being able to type up this entry of appreciation.

Being there with me through each phase of it must not have been easy on anyone that saw me, or dealt with me and I am truly grateful for all of them. Each phase was a hurdle that I was sort is familiar with, just not as intense and certainly not my entire spine and it was about 30 yrs since I had been in a situation that difficult to pull out of.

The phases: ( or seven layers of hell, I like to refer them to)

1: The realization that something is drastically wrong, before any of the Drs even knew, having AMC, my physical awareness is ridiculously through the roof.

2: Going through the process s, upon tests, upon tests, then repeated tests, upon tests and still hold it together. Hailing the conversation in the beginning with my main Dr, that I didn’t want to go on pills, but the pain was so intense and after he saw my results he even said we will always use the lowest dosage but you are going to need something strong in order to help you through this because of your tolerance to pain and the fact that you are in so much pain it literally appears on your face, even when you laugh.

3: After months and months of tests, hearing from top spinal Drs, that their was nothing they could do, literally and almost giving up. I reached out to people who were involved with me younger years, they helped me get to the correct people because I was on intense mess, not by choice mind you, and was beginning to have difficulty seeing things clearly. Due to pain, the lack of finding help, the mess, my life quickly was deteriorating right in front of my eyes.

4: Coming to terms with the idea that surgery was my last and only hope, the pain was so intense that I was already set to checkout had it not worked. Having the last spinal injection procedure and literally telling them, they need to stop the pain because I couldn’t handle it anymore. They even left me in the room by myself with mess sitting out as if to test to see if I was junking out. I literally was in tears by the time they returned and when he said he was sending me back to the surgeon, I clearly remember saying “please tell him I don’t want to feel this anymore, I can’t take the pain any longer, that I don’t want to feel it at all even afterwards”

5: Having the surgery, now this was a place I was familiar with, the mental preparation of going back under that deeply for the 17th time was a massive undertaking to handle. I was more upset about possibly loosing memories, because whether people actually notice or not, it literally is the most difficult part for me, when coming back out (waking back up). I definitely notice it now, I’m not as sharpe as I was, I can literally almost feel the wheels turning sometimes before answering or showing a reaction. I will take that anyway over where I was.

6: Recovery, physically I’m perfectly fine with, I can be stretched, pulled, cracked, whatever that was not the problem. The problem was literally remembering relationships, this I absolutely lost. If I hadn’t seen or heard from you recently after surgery then I was very unaware of the relationship that we had before and upon seeing people again, it either clicked or I just went with it because I didn’t have much of a choice. There are people I totally do not remember and I have to explain to them why, because there have been a few that have seen me recently and I literally went blank. It’s not fun place to be, but I’m here and I’m back, so I can always explain things and create the connections again.

7: The final hell phase and one that not many can get through. Getting out of the mental trap f the medication, especially when you go through something so intense it requires the worlds strongest meds to help you through it. Once out though, it changes and it changes in such a way that I was literally trapped inside my mind. Watching me go through the motions, and literally not being able to control ANY of it is probably the most mentally scary place to ever be. Literally felt like I was inside those very old under water suites but I couldn’t control any of my actions, reactions, decisions, or lack there of. The only thing I had was control over my breathing and again having my Mom and J there to listen to me attempt to reach out through this suit, that I needed help because I felt trapped within my own head because the day before I was sitting in the living room and all four walls literally fell in on me like a house or cards falling down, Literally.

Finding Ann, my attorny who helped me get on SSD, because this has left me, physically not in the same shape I was before it all started. Having met her and knowing she was fully behind me in helping me get over this last real mental hurdle, once my mind was clear from all medications and accepting the fact that I cannot do things like I used to. Not an easy thing for me to accept, by any means. I always took a lot of pride in being able to do everything on my own. Now that simply is not the reality in my life and it took a lot but with her help, I am now able to move forward without the weight of that on my shoulders.

So that is my processing of this last experience, it’s not me complaining or reaching for a poor me type of thing, AT ALL. It’s simply what happens when my body is failing and the mentality it takes to fall that far and get back up again. With the support I had around me and the constant reaching out from friends & family far and near, I would not be here today to appreciate how much everyone means to me.

This entire procedure has literally changed my life, for the better, THAT however is another entry for another time, maybe. I may also just leave that where it is, behind me 😉

This was to show my appreciation and gratitude for everyone in life and to show how much they truly mean to me.

Thank you,
~ Ted

Being “Fixed” vs. Being Self Aware And Listened To

This is a touchy subject, on many levels, especially when it comes to Arthrogryposis and people NOT living with it. This is a very important article for Doctors, Parents and anyone who deals with anyone else with Arthrogryposis and thinks they need to be “fixed” based simply off of how they might do things, or even worse off, how they ‘look’.

As I wrote in a previous article, what everyone needs to understand is that those of us with muscle control have learned how to do things our own way. Which to everyday people that may seem odd, strange or as if we need help all the time. Well, here’s a some insight, from my perspective, if I need help I will ask. I first will try every technique I can do do something, like tying my shoes, taking off a shirt, etc. before asking for help because I know damn well I can do anything I put my mind to.

I had an issue once, when I was in my upper teens, I was learning how to clip my toe nails. As anyone knows, when you first learn to do this and clip them too short, or slightly off, they bleed, A LOT. Well I did that to my one toe, which happened to go under my big toe and the doctor at the time saw this. The shit literally hit the fan with them all, they were convinced my toe was always like that and went on this rant about how I needed to “fix” it with a surgery. Regardless of me explaining that I just clipped my toe nail wrong, that it will heal and it is never like that. Even at 17/18 yrs old I was ignored, apparently I didn’t know shit about my own body, so we went through with it.

I had the surgery, scheduled the appointment to have the pin removed from my toe after it was in there for 7 weeks. They wanted me to wait and see the doctor at the time again to go over it but at that point I had made up my mind as was finished with ALL of it. Because they had proven beyond a doubt that the direction they were going in was WRONG, “fixing” things that were not broken because they wanted to try a surgery to fix a toe, that went under my big toe, to see if it worked, was WRONG. Or even worse yet to treat someone, a human being, like they are not aware of their own bodies is WRONG. My toe, by the way, is worse then it was, still under my big toe and now the nail is all sorts of jacked up and is now really tricky to cut.

So I can not stress enough to Doctors and Parents out their dealing with kids with Arthrogryposis, that they need to clearly evaluate their situation and if that person is coherent enough and is aware of their situation, then they NEED to listen to them. If they are saying they do not want to be “fixed” then listen to them. If they are explaining any situation, about what ever it may be, that they are being told that part of their bodies need to be “fixed” and do not feel the same way, then LISTEN. Unless the Doctors are suggesting a procedure that will benefit them down the road, and not cosmetically, but actually help them remain a contributing person in society then, by all means pursue that. But this need/desire for Doctors/Parents/Society to “fix” a persons body, because it doesn’t ‘look’ like everyone elses, is wrong to do to people who live with it that way and don’t feel like it’s wrong.