Why I Chose Elective Amputation
My life changed in an instant when a massive F250 Super Duty truck t-boned the motorcycle I was on the back of. While I only remember bits and pieces of the moments right before and right after the accident, there was one thing that has been my constant since – pain.
There were three different statements my doctors made in the hours after my accident:
- She will probably not live through this
- If she does live through this, she will have her leg amputated
- We saved the leg, but she will likely never walk again
All these years later, I was so happy I defied all three statements. If you tell me I’m not going to be able to do something (or not to do it), I will most certainly make it happen. I’m that stubborn and defiant. I embrace these faults because I know that without them, I wouldn’t be here today.
I went through so much. Physically, mentally, emotionally – the accident, surgeries, abuse, brain injury. I absolutely hate lingering on it, because if I do too long, I will most certainly break down and likely stay down. And I cannot afford to do that. Not with my kids, my passion for transformative travel and with it Phoenyx Travels (formerly Phoenyx Rises), and most importantly for myself. I didn’t make it through all of that, just to break when I look back at it.
So, it’s difficult for me to let one of the predictions come true. Because it feels like if I let one come true, the others may too.
Big exhale. Writing about this is so hard, which is why you don’t see many articles about my journey. But I know to help others going through impossible things, I must do what feels impossible for me.
So why elective amputation now?
- 7 years
- 14 surgeries (on the leg)
- 7 rounds of physical therapy
- 6 jobs
- Missing half of a season of my son’s soccer
- Having to quit being a girl scout leader for my daughter
- 3 missed Ninja Warrior competitions
- Barely being able to walk down the aisle
- Inability to play with my kids
- And more that I can’t remember (thanks brain injury)
The Revelation at TBEX Eau Claire 2023
After seeing another travel blogger at TBEX Eau Claire 2023, I knew it was possible. Not only was Jodie St. Clair a mother who traveled the world with her children in tow, she also did it with an above the knee amputation.
As I tried not to stare being in awe of it all, it dawned on me that the world doesn’t have to stop when you lose a limb. Like sure, I had seen the marathon runners or ninja warriors with prosthetics, but they seem like they are in a league all their own. Having never been super into fitness because I abhor being warm, I could never see myself in them. But having a real person in front of me facing the daily challenges I felt, it was surreal.
Later on down the line, Jodie became my sounding board for all things amputation related. Her patience was the thing of saints and without her, I don’t know if I could have been brave enough to make this decision today. She is truly an inspiration.
Eau Claire also opened my eyes to how poor my condition was. I had done nothing strenuous AT ALL while at the travel conference, but woke up and was unable to walk. Unfortunately I hadn’t thought to bring the wheelchair because it had never gotten that bad before, so I was stuck with my cane.
Nearly everyone asked me what happened – strangers and friends alike. I had no idea what to tell them. Some had known my story, but had no idea it affected me like this. This phenomenon happened so many times after this too with no known trigger.
I joked the following weeks that some days I could literally hike a mountain, while others I can’t even get out of bed.
My psyche was crushed. How could this happen so many years later? I was DONE.
So I began research on elective amputation. The real kicker? Most doctors won’t even touch me because of the amount of work done on my leg because of liability. So when I told my pain doctor my plan, all he could say was “Good luck” in a dismissive tone.
I haven’t shared this before, but it will give some insight into how bad this situation had gotten at one point. My husband had lost his job in Florida due to COVID causing many companies to nearly go under. When he was offered the new position here in North Carolina, I had JUST had my ankle replacement surgery. Like I still had the pain pump in my leg from the surgery and the bandages still on from the hospital.
We moved to North Carolina with my surgeon giving instruction NOT to touch the ankle unless a doctor up here would see me. Weeks went by with every single doctor within a 50 mile radius unwilling to touch me (ER doctors included). So needless to say, it got severely infected which led to me not getting physical therapy, needing another surgery, more pain, and nearly having to amputate anyway.
The Turn Down
ANYWAY. I searched high and low for a doctor willing to help me. Originally, I wanted to get the above the knee osseointegration surgery which is a new kind of prosthetic which doesn’t involve the typical socket because I was afraid my skin wouldn’t do well with prosthetics. I knew it was a newer procedure, but was instantly denied.
Why? You have to have repeated issues and failed prosthetic leg use before they will even touch you. Completely backwards, but that is how insurance and the medical field can be.
My next step? Traditional amputation.
My pain doctors recommended a doctor who was nearby who may or may not be able to do it. I noped out of that idea so fast I made their heads spin. The doctors in the Greenville, NC area had already proven themselves to be negligent, I wasn’t about to trust them for my amputation.
The really good thing about living in North Carolina? One of the best hospitals is less than two hours away – Duke. My first appointment was scheduled for September 19, 2023 with Dr. Rachel Reilly.
In the past, I had doctors tell me that the pain I had didn’t make sense or I was imagining it. It wasn’t until much time had passed and I wouldn’t relent would they even take a peek inside my leg. I’ll never forget the day my doctor promised never to question me and my intuition again after finding a piece of bone lodged in my muscle that never came up on x-rays. But that has always been the norm for me, tell a doctor something, they don’t believe it for a ton of time, they finally look, and look who was right?
God I sound arrogant – but I freaking know my body.
So when I walked into my initial consultation, I was beyond ready for anything she could throw at me. Phantom limb pain? All of my past doctors said my pain severely outdid anything that could happen with phantom limb pain. Plus, I promised I would do extensive mirror therapy. Nerve issues? Already have them – next. Won’t you regret it? Not a chance.
But do you know what I do regret?
- Not being able to play and run with my kids.
- Missing out on quality family time because mom needs to lie down due to pain.
- My four year old daughter thinks going to the hospital is a normal thing.
- Being too afraid to travel at times because what if something happened?
- So much more…
After I gave Dr. Reilly my elevator speech turned monologue about what happened, why I want to do this, and my answers to the questions she hasn’t asked yet, she had one thing to say.
“When do you want to schedule this?”
We picked a date, but she had one disagreement. She wanted to keep the knee. The x-rays we had showed no structural issues with the knee and she thought it could be saved. After listening to her speak about the amount of force and energy it takes the body to recover from, operate, and function with an above the knee amputation, I agreed.
She offered a solution to the problems with the knee with a referral to Dr. Lau. I was hesitant because I had my heart set on November 1, 2023 being D-Day, and she wasn’t sure if his schedule would allow it. So I declined.
And my body was an asshole yet again.
I didn’t know it, but hurricane season is as real for North Carolina as it is for Florida – minus the parties. So when the storms came busting in the following weeks, my knee screamed out in pain. We literally took a trip to the mountains to alleviate the pain because I literally couldn’t get out of bed that morning for four hours.
And so began my journey with Dr. Lau which will be another article for another day.
I sit here post surgery with my knee that makes me want to cry. Not because it hurts. Because this is the first time in nearly seven years that I am not in pain in that area. It gives me hope about what lies ahead with the lower leg amputation.
Am I scared?
Honestly, I don’t give a flying hoot about surgeries anymore. Lower leg amputation would be no different. I am finally able to remove the leg that had been holding me back for so long .
When my mom asked who would be with me when I woke up from it, I shrugged and said alone as if it weren’t a thing. About half of my original surgeries were alone going into it and waking up from it, so I had gotten used to it. My husband always willing, but the pragmatic in me told him it would be no issue and just go to work. But my mom wore me down and led me to ask my husband to stay which he was already planning on.
Did you know that being hyper-independent is a trauma response?
I hadn’t until some of my old psychology colleagues told me. But if it’s not impeding my life, it’s not dysfunction right?
I don’t mourn the potential loss of this leg. Why? Because it feels like it is a cancerous tumor on my life. It has held me back from so much as well as caused me so much physical and emotional pain. If I could, I would cut it off myself. But I need drugs because I am not doing the pain. And have you seen how brutal those surgeries are? I don’t need to witness that.
I digress. Elective amputation isn’t something I ever thought I would be willing to do. I used to laugh at my doctor when he would give that as an option in the beginning.
“Why would anyone ever want to do that?” And he would just give me a look.
Now I am that person doing that thing and I couldn’t be more excited about it.
Have you ever done anything that scared the hell out of you? Let me down in the comments below!