Control Freak

Being an amputee has it’s challenges. Being a control freak and being an amputee can be much worse. I like to write about the good and the bad, but I try to navigate my words toward the good side of the scale more often. I have written about my time in the hospital, but not overly so.

Something has come to light for me recently that has made me take a hard look at myself, and my psyche. Like I said, I am a control freak. I always have been… I like things done my way, and I like things done on my terms. This part of me made me really great and also really bad at some of the things in my life. Put me in the hospital, though, and you take all of my control away.

I never realized just how horribly this has affected me until I recently had a panic attack while with a friend. It was such a horrible outburst by me that I nearly ended a friendship with someone I respect and think very highly of. But how did my time in the hospital bring this on?

I spent three months in a hospital, lying on my back. I wasn’t allowed to go to the bathroom. I wasn’t allowed to get out of bed. Hell, I couldn’t get out of bed. If I wanted to take care of bodily functions I had to push a button and ask someone if I could…. Then I had to wait for them to come help me do it. The control freak had lost all control of everything that was happening to him.

I experienced a mini-coma after one of my surgeries, and before I was even really awake someone at the hospital tried to get me to drink some water. It went down the wrong way… Heck, I wasn’t even awake yet and had no idea where I was at. I choked on it. This left me with nearly three weeks of drinking coffee the consistency of honey, and getting all my water by sucking it out of a sponge on a stick. Really, if I was thirsty, I had to suck it out of a sponge.

I didn’t even have control over my own hydration.

Actually, the only real decision I had while I served my time in the hospital was when my legs would going to come off. My options were have more tests that were going to tell me my feet were dead and live with more agonizing pain, or go ahead and get it over with. Some choice, eh?

I once had to argue with a nurse about being allowed to have a bowel movement in a hospital bathroom without her standing over me watching. I. Kid. You. Not. I had to be ugly enough with her to make her cry before she would step outside the bathroom. As I look back now, that little outburst was probably a very small panic attack.

For many amputees the hospital stay is not nearly so long and protracted as mine was. That does not make me tougher –or better — but it does make me different.

Before I was a bad passenger in vehicles other people were driving…. Now I am a complete asshole who freaks out when others do even slightly unsafe things…

Before I was a guy who hated having to take my shoes off for airport security…. Now I get so torn up inside abut being made to stand to one side — and have a stranger put their hands on me and search me — that I can’t think straight…

Before I hated not being in control….. Now, my mind literally can not handle when control is taken from me.

I just aced two psychology classes in past semesters at college and it has still taken me until now to realize that I am exhibiting classic signs of agoraphobia and panic disorder. I hope that realizing this is an issue for me will help me recognize when it is happening and keep me from making an ass of myself or hurting the feelings of others in the future.

Why am I blogging about this? Because if it has happened to me, then it will happen to someone else…. And perhaps reading this will help another amputee who had all their control taken away from them… and perhaps they can get help if they need it..

And perhaps I am blogging about this to tell my friends and family that I know I am over the top sometimes, but I will try to be better about it in the future. And maybe this is also an apology to a friend who didn’t deserve to see me freak out on them……

Hello. My name is Neil, and I am a recovering control freak.

Fingers 2.0

Everyone I talked to at the conference seemed to be amazed with my prosthetic fingers that I make in my garage. I am working on a *ahem* “next generation” set of fingers for myself, and lots of people asked me to share…. So, here is my work in progress on my Fingers 2.0


Gina accepts no compromises!

[This is a re-print of a FB post from my friend Gina, who like me is a retired amputee FF/EMT. Gina is an amazing person, and when I read her post I asked her if I could reprint it on my blog.. she of course said yes. I keep telling her she needs her own blog, and she says she doesn’t know how.. well, this post says otherwise to me! Enjoy…. N]gina pic

k, so…by now many of you have realized that I went away to Orlando to an Amputee Coalition Conference. Now, it looks like we just fooled around cutting up and being silly…and at times, we did. What I’d like to speak to next, is when we weren’t.
I met people with lots of heart, nerve, compassion, and yes, comedic genius these past few days. Everyone has a story, some more horrific than others. But each personal and life changing for them, their families, and friends. They came from 42 states and 3 countries (I believe was the stat) . They came alone, with families, and some even brought pets. All for one purpose. To be bigger than what happened to us. To be connected in our journey. To genuinely feel empathy and gather strength and acceptance in numbers.Those who followed my status’ of thankfulness know I learned to swim again, went to yoga, did a handstand, shower without a chair, met some very profoundly unique people who educated me with language and cultural barriers, and the highlight of my trip…wait for it….I RAN! I ran like the friggin’ wind! It was amazing! It was quite possibly my aha moment to jettison me from here. Pretty sure I’m still high on that feeling tonight.

So, why the picture below you ask? Well, those of you who truly know me, are aware of my “Happenstance” theory that people and events that are MEANT to be connected, are. That events, actions, people, run-ins, whatever…exhibit a bigger picture of connectedness that place happenstance in seemingly unrelated situations all leading to a bigger purpose. Well, the theme of this years event was a Sea of PossAbilities. Get it? Clever on their part, I know! So anyway, there was a little whale placed in everyone’s room, and at the dinner their we’re starfish all over the tables. I took this as confirmation of my theory (as if I needed it).

Remember the story of Jonah and the Whale? Jonah was asked to perform God’s will and warn the Ninevites. A task he evaded, hence being swallowed by the whale. While in the belly of the whale, he was thankful for being saved as he was drowning in the ocean. For 3 days and nights he’s thankful. Never questioning his fate. Not so sure I could be as dedicated, but ultimately the whale spews him out to carry on his work. Now, I’m not incredibly religious or preachy, but I’ve always been fascinated by that particular story and the more complex aspects of why he was intimidated to do what he had to do and why, but found it relative to my moment. Just as freaky, is my understanding of the story of the Starfish. From my teaching days, I remember (as perhaps many of you) the story of how a boy walks along tossing starfish washed upon the beach back into the ocean. A man asks him what he’s doing, explains that the beach is several miles long with hundreds of starfish, and that it won’t make a difference. The boy aptly replies as he picks up another starfish tossing it gently back into the ocean, that it makes a difference to THAT ONE.
Now, I’m not sure what my purpose is exactly. I know I’m a mom, wife, daughter, sister, friend, etc. I’ve lost my identity in my career (for now) and spend entirely too much time with chickens. But…if I remain thankful while I anxiously await direction, help those who need saving while on my path, and focus on how the things that lead me here…today…matter now, I’m sure I will be ok. Call it a stretch if you like, but to me…it was dead nuts on. I refuse to compromise who I am because of the limitations I’ve had to face. If the universe has a challenge, I say bring it…and it best wear a cup!

[Authored by Gina Kothe, and reprinted with permission]

Having a blast at the ACA Conference!

So I am walking my butt off, meeting lots of people, and having a generally awesome time!

Lots of Facebook friends are now real friends, and I have met so many inspirational people!

When I have a moment to sit down with my iPad (I’m on my iPhone one thumb tapping right now!) I will give you some of the low down and web links to the great people I am interacting with!

Good stuff, good stuff!

New feet for me.. Perspective for you!

I recently posted this to the Amputee Coalition of America’s facebook page. I want to share this with you all, and then afterwards expand upon it..

Just had to share my excitement! 6 months ago I bought a gently used right side College Park Tru-Step foot on eBay. since then I have found lots and lots of other right sides, but no left side, at least in my price range. so several months ago I was a guinea pig at an OT/PT CEU hours conference. I met a person who is themselves a single BK amputee, and knows how to get feet. I told them what I had, and what I still needed. I pretty much said “gimme a free foot” and they pretty much said “pfft yea right.. I can’t do that.”

Real nice about it, but up front about a no go. So, I continued to search for the left side.. No joy.

Sienna Newman, one of the great people on my prosthetics team, told me to hold out and wait, not buy a left side yet.. and guess what? A few weeks ago, a box was dropped off at KY Prosthetics in Louisville, KY, just chock full ‘o a left side foot, and various parts for my right side I already had!

We have been waiting for my liners to come in, so I can get liners and new feet on all in one shot.. and I go Monday for that. I have been through two sets of liners in six months.. I wear them out!

Why, you might ask, did my prosthetics company just not work a new set out through my insurance? It’s because I don’t have any. My insurance coverage ran out one year and two months ago.

Since then, my prosthetics company has made me 4 sets of sockets, (8 total) with another set coming in July. They are paying for and going to a class to make a new kind of socket for me simply because I want it. Everything I need takes double, as I am a DBK. If I need it, I still get it, regardless of my ability to pay right now. 10 total sockets, and all the supplies I need, without a single question.

I like my CP Velocity feet I have now, but the Tru-Steps are just awesome.

But not nearly as awesome as the person who helped me get the foot, and my prosthetics team from Kentucky Prosthetics and Orthotics in Louisville, KY.

I get asked often why I travel three hours for my prosthetics. This is why.
Can’t wait for Monday!

Pretty groovy, right? Free foot, and still getting support from my prosthetics company for more than a year without insurance.

But, that doesn’t really tell you much, so, let me put it into perspective.

The new foot? the trustep? Let me show it to you…

Now, here is the type of feet I have now.. Also College Park, and great feet.. The Velocity..

See the difference? Again, perspective..

Look at the velocity… I have some friends (best friends, actually) that have a street legal drag race car. It’s a Dodge Demon,, and it is totally badass. totally! (I’m looking at you, Jenny and Bob!) It can be driven on the street, but it is more at home on the straight track. It is built for speed on the flat track. Hopped up motor, beefed up undercarriage, and all the trimmings for go-fast down the track.

More perspective, the “cheetah legs” you see some amputees running in, those are like top fuel dragsters, they are made for one thing.. Going REALLY FAST… those are not regular daily wear feet.. Just like a rail dragster is not meant for daily use on the road.

Now, the trustep? Just scroll back up and look at it. Independent front suspension. Articulating ankle.. This is like a brand new Dodge Ram 4X4 with a turbo diesel. It is meant for on road and off. Hills and valleys. Those tough spots. You can go fast in it, but you can just as easily lock it in 4 low and dive off into the mud hole.

That is what the trustep is.

My walking should improve immensely over tough terrain. Because my current feet are made for high return on flat surfaces. to put it into perspective for all of you, here is my comparison of what things feel like now as opposed to when I still had my legs:
Flat surfaces=flat surfaces
flat grass= walking in river rock- slightly unstable
clumpy grass and/or a gravel driveway= big rip-rap rock
Everyday inclines=super steep slopes

that’s what it feels like. I have no ankle control. It is what it is. But, with the trustep, this should be different.. At least a bit better, and potentially a lot better.

Now, look at the two feet themselves. See the connection parts? Look how much taller the velocity is the trustep. I am set as short as I can be on the Velocity, and I am still two inches taller than I once was. I will lose those two inches with the trustep. That means lower center of gravity, better balance, easier sitting and standing, and easier climbing steps.

I will lose a little height, but I will be gaining so much more.

Now, moving on to other perspectives.

Now, I could potentially BUY A NEW CAR with what this foot costs. Could you imagine your local car salesman at a big dealership handing you the keys to a brand new car and say “Here ya go.. Take off.. No charge!”

Nope, not gonna happen. Not without a reality show and lots of media coverage. And you still paying the taxes on it 😉

Now, to take the analogy a step further. Keep in mind, I have not had insurance since around April of 2011. That’s a year and two months ago!

Imagine buying a car from a dealership that only sells custom made cars. Perspective: for the cost of my legs, I could have bought a new Porsch.

So you get your new custom car from the dealership, and the warranty runs out. the dealership not only gives you brand new tires every six months, but also a full new custom made frame and suspension every time you need it. and they build it by hand!

I am a bilateral below knee amputee. that means I need two of EVERYTHING. I have had about four sets of sockets made for me since my insurance ran out. that’s 8 sockets, people. the process is not simple. it goes like this:
1. Individual molds of my distal ends have to be taken.(office visit one)
2. Exact replicas of my distal ends have to be cast from these molds.
3. Plastic test sockets have to be made from the castings of my legs.
4. I have to be test fit from the test sockets. (office visit two)
5. Corrections have to be made to the test sockets by heating and custom molding to perfection.
6. New plaster castings of the sockets have to be made from the test sockets.
7. Carbon fiber sockets have to be made from the new castings. they have to add all the mounting hardware, make it perfect, or I can’t walk in them.
8. Install, final adjust and tuning. (office visit three)
That is what it takes to get me a new set of sockets. and they have to make TWO OF EVERYTHING.

Under those sockets I have to wear liners. they are supposed to last six months. I have been through TWO SETS of liners in about six months, but I am really active. these things are not free, but when I need them, I get them.

More perspective for you. I want a new design of socket. They are a new concept for BK amputees, and by all accounts, are totally awesome. an evolution in sockets. Google RCR sockets to see them. My prosthetics company has not been through the training to make them. But when I decided I wanted them, they decided to apply for, pay for, and take the educational courses to make them for me.

The classes are in July, and so my sockets will be made shortly after that.

that’s like your custom auto dealership sending their mechanics to a course to make NEW FRAMES and SUSPENSION for your custom out of warranty car. And not charging you. Making the new frame and suspension, and installing it, and just handing it over.

I would not be where I am today without the support of KY Prosthetics and Orthotics. they have stood behind me every step of the way. Insurance or not.

To the person who helped me find a foot…I am simply overwhelmed that you believed in me enough to do this for me.

And Matt, Sienna, Tommy, Mike, and all the rest at KY Prosthetics that have helped me, stood behind me, pushed me, and put up with my stubborn self.. I can’t properly put into words my gratitude for your efforts. It is humbling and overwhelming all at once. Thank you.

I get asked why I travel three hours for my prosthetics care… This is why. All of the determination in the world would not have gotten me out of a wheelchair and walking if not for the efforts of my Prosthetics Team.

I am very lucky, and I wont ever forget why.

And I can’t wait ’till Monday!

School’s out! Bring on the Summer!

My semester is officially over.. and I walked out with a GPA of 3.3.. In layman’s terms that is a B+, or 88%. Not bad, but i think I could have done better..

what shall I do now that I’m off from school for the summer? well, work on stuff for my college PTA program, of course! I have a lot to do to get my application to the PTA program done, so I will be busy!

What else? well I am thinking I might catch up on some camping and fishing with my son, get some squirrel hunting in, and maybe go for a ride on my new bike!

Yep, that’s right, my new bike. A buddy of mine traded me motorcycles, as I can’t get my feet on the pegs of the old ones. I know what your thinking.. good for him! He got himself a trike!

NOPE! This TwoFeetShorter dude is riding up on TWO WHEELS! I have already had several people nay-say me.. Tell me I am making a mistake.. I just don’t understand why.. I am not an invalid, handicapped, or disabled.. I admit, I am challenged.. But I have always enjoyed a challenge. If I can’t ride on two wheels dragging my knees into a curve.. what’s the point?

If I had to ride a trike on the road, I might as well give up the ghost and start riding quads off road… and I don’t much care for riding quads :/

So, nay-say all you want.. I am riding.. ON MY TERMS. And on this new bike! Yea, yea.. It’s a scooter.. But a highway scooter.. Part of the joy for me of owning a bike is working on it, modding it, and making it all my own.. so I have already begun that process.

I may take risks, but I am still playing it safe. this bike will have some custom mods to help me ride.. a new seat that will help me plant my feet better.. Brake mods to keep the rear brake on my good hand, and kickstand extensions to make it easier to park it and reach the stand with my prosthetic legs.


Oh, and I have a few other things in the works, as well.. Power plant mods for go-fast.. Paint in the future (yea, looking at you, Bob, my old friend;) And maybe some new pipes…

Wait.. I already got those! and installed them myself..

I think this almost qualifies as a check-off on my socket List!

Living life.. Enjoying summer.. what are you doing this summer?

Let’s go ride!

Gait 2.0

I have really been working on improving my gait, and have taught myself a few new things in the process! Here is a short video of my much improved gait!

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Life goes on…

Well, it has been a bit since I posted a new blog that I actually wrote, instead of throwing up some new videos. I thought it was time for a real update for all of you!

Just as the title suggests, life goes on, even after triple amputations.

every day I get a little stronger, a little more stable on my legs, and a little more of the feeling that I might be moving on from this disaster that happened to me.

I have had my legs since February, but due to Behcet’s issues, i have only really been on the prosthesis and walking for about two and a half months. I have gone in that short period of time from forearm crutches to cane. Now, in the house, I am forgoing the cane.

When I walk in the door the cane goes in the corner, to be left until I go outside again. Why, you may ask? Why not use it because I might need it? Simple. If I use it, I will rely on it. If I have to rely on myself, and not the cane, I will be forced to walk without aid. Pretty simple, eh?

And so far it is going well. I of course, use the cane outside, as I have some stability issues on uneven ground, but inside is all nice and level.

I also limit my use of the wheelchair to shower time. I used to use it first thing in the morning for that first up of the day bathroom run, but not anymore. The wheelchair is just another version of a cane, if I let myself use it, I always will. So, I don’t. I will always need a chair close by at night, in the event of emergency. I can get my legs on and be walking in about seven minutes now, but, seven minutes is a lifetime if there is a fire or tornado.

So, until I get to the point that I can have “quick on” legs, I will need the chair. In time, I will have a set of legs that i can “pop” on in a few seconds each, but until then, I will keep the chair around. The legs I have now are the best that can be had… But the technology involved also involves prep time before they can be put on.

I am now back to working, part time, at my old fire department. I am a dispatcher. That has helped my head immensely. Feeling like I am doing something productive is nice. And, the people I worked with before at the department are still the same people. And they treat me just the same as they always have. They might might make a nice comment now and again about my walking abilities, but otherwise, they still give me hell like they always have.

I need that. I need to be treated like I am the normal guy I was, the normal guy I am.

I went yesterday and signed up for classes at college. Starting in January, I will be taking 13 credit hours towards a degree in Physical Therapy Assistant. I want to be able to help other amputees, and this is the starting point.

I am also going to be guest speaking to an OTA class soon. One of the kids from the old neighborhood I grew up in, and went to school with, grew up to be a fine OT in her own right, and is teaching at the college. She has asked me if she might use my videos, and blogs in her class, and asked if I might be willing to be a guest speaker to her students.

I really feel honored to help out. My hope is that by helping out the class, I might be helping out an amputee down the road!

See, I have found that both OT and PT have a few set in stone ideas about how things are done. Mostly, they are spot on, but some things are not. As an amputee, you are taught to do things just like a person who is paralyzed from the waist down. Someone who has legs, but cant use them.

Here is the problem. I may not have all my legs anymore, but I sure as hell can use and move what I have!

You also tend to get crammed into the “no movement box” for things such as wheelchair transfers, bathroom usage, and baths/showers.

Here is a good example.. I posted long ago about sitting in the floor of a shower to bath, and not in a handicap shower chair. My OT in Louisville was not pleased with this. Her basic attitude was, “That’s just not how your supposed to do it.”

Well, screw that. why force me to sit in a chair when I am safer, and more comfortable, sitting in the floor?

Oh, right.. You put me in the “box” again.

My shower at home is now set up just the way I want it, and was done all by me. the only handicap aids I use now is a small shower “seat” on legs about an inch tall. I dont use a shower chair, I don’t use any toilet seat helper chairs… Nothing. Just my little seat. Why the seat? well, able bodied people might occasionally stand in that shower to bath.

I don’t want to sit my hind in in someones funky feet fungus… 🙂 I don,t need the seat, but I use it as a precaution. That is now the extent of my “handicap” tools. I’m not handicapped, so why should I use handicap accessories?

Wait! Yes! I did just say that! I~am~not~handicapped! When I have my legs on, and my fingers or glove on, I can do all the things I need to do.

Hell, I don’t even park in handicap parking, or have a tag for my car. Why? Because every time I take the easy way out like that, I miss out on an opportunity to be the normal guy I am. Also, I would hate to take the last handicap parking spot when someone who is wheelchair bound might need the extra space to get their chair out.

thats why those spots are extra wide, people. So, every time YOU use a tag you don’t really need and park there, your taking away from someone who really needs it!

I refuse to be that kind of asshole. Really.

Some may argue that I am being silly, but I am who I am.

Wow, I got a bit off track, but hey, that happens. Maybe I didn’t.. All of this really falls under what happens when life goes on, Doesn’t it?

Life does go on, and I am living it.

Maybe I will see some of y’all around campus!

New Fingers, new walking video.. and T-Shirts!

Because Sienna at wouldn’t leave me alone about a video of my new fingers, I thought I would post two short ones. Sorry, Sienna! I am the king of procrastination!

First up, bare bones, without the gloves on.

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Next up, with the gloves on, and a little show and tell.

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And, last but not least.. me free walking up some inclines!

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Now, if that wasn’t enough of me for ya, how about a T-Shirt! I made these up just for fun, but if you would like to help support my blog and sport a little Two Feet Shorter pride, try these on for size!

Black T

Gray T

Walking one year later….

One year ago tonite I went into the hospital, died, was brought back, and went into a coma…

Mid November I lost my legs and fingers, and the end of January I was first fitted for prosthesis.

Today, I am walking. A bit slow, but walking.


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