Ten years ago I could not have imagined this silly boy in the Bluey glasses. He's my four year old grandson, who has lived three houses down from me from the time he was six weeks old. And spent almost every work day with me since then too. He's my right hand man. A blessing I never saw coming.
More on where our family has ended up in later posts. So much to write on that topic. But the reason for this post is different.
I'm facing yet another major medical challenge and this one has side tracked me.
If you dont know my story, I electively had my left leg cut off in 2004. One of the first elective amputees that I know of. Fortunately for many, it's becoming more common, and giving new mobility to people who were losing hope. I learned to finally ski on the first anniversary of my surgery. I loved going to the gym. I traveled on adventures with my husband and our four kids, as we moved around the country for his job. Life clipped on, for many years.
We landed in CO. Our perfect state. We loved almost everything about it. But a few years ago my body started falling apart again. I started noticing my right foot deteriorating badly. Repeated infections. Repeated hospitalizations. A round of sepsis, sent home on IV through a port in my chest. Then my foot just fell apart. I think the pictures are too graphic to share online.
I had to make the decision. A familiar one. Spend the rest of my days in and out of hospitals, on crutches, risking more sepsis, or just getting rid of it. It wasn't a hard choice. I wanted to live.
So in 2023 I had my second leg amputated below the knee. As you can imagine, having two missing legs is a bit more complicated than having one, especially after being mostly bed ridden with infection for a few months. I had to slowly start to learn a new life, that now included a wheelchair.
A few months after that huge change I had a serious spell involving my gallbladder, that put me in the ICU with sepsis once again. It just seemed to be one medical event after another.
Once all of that settled down I felt I had to address a medical concern that had been haunting me for over 15 years. My thyroid. It had been growing and growing, showing no signs of cancer, for many years. It was finally making my voice gravelly and making me choke, so it was time to come out.
Of course my ENT said it was the biggest one he'd ever seen. That's me. The one in a million. He had to include a thoracic surgeon in the surgery in case they had to break my sternum to get it out. Fortunately they didn't, but it came with complications I never dreamed possible.
My thyroid had invaded my vocal cords so much that after my surgery they were paralyzed. They ARE paralyzed. It's now 9 months past my surgery and since that day, on July 10, 2025, I have had no voice and severe shortness of breath. You cant imagine how much this affects your life.
First of all, my learning to walk had to stop. I get winded just wheeling to the bathroom. Not using my leg muscles is making them wither away. I refuse to be confined to a wheelchair the rest of my life when I have muscles I could be using.
Second of all, I lost so many precious interactions with my sweet grandson. He is four. He is a chatterbox. He's soaking in ABCs and nursery rhymes and books being read to him. All things I cannot do. We missed a whole season of singing Christmas songs he loved so much last year. I have stacks of fun books I want to share with him while he'll still let me. Every day is flying by as he grows older.
I miss my long discussions about life, and kids, and memories, with my husband. We didnt get to 36 years of marriage without some pretty deep discussions, and I miss them. So many thoughts I want to share that are stuck in my brain.
I thoroughly enjoyed sharing my legs with people in public. Especially children. I used to go into schools and Boy Scout troops and share my leg with them. Being in a wheelchair for a couple of years put me at their eye level so in the stores I wanted to strike up conversations with them, to make them realize my bionic legs were cool. But the little 'voice' I have is whispery, and scary. I dont want to scare them more.
And last but not least, I cannot make phone calls or use drive thrus. Not a five minute phone call to make a doctors appointment, or to check on a bill. I have to rely on Jeff to do all the calls, around his already chaotic work schedule.
So at the last visit to my ENT, he mentioned the next step might be a tracheostomy. Yeah. A hole in my throat. To open up my airway and allow me to breathe more easily, and talk again.
I never in my wildest dreams thought I would ever be considering living with a hole in my throat. Somehow having both legs cut off didnt really alarm me, but having a hole in my throat felt like a punch in the stomach.
I was very against it at first. And I really couldnt figure out why. After some soul searching, and discussions with Jeff, I realized part of it. I am comfortable entering a room with artificial legs. People understand it. 'Oh, she has legs amputated'. In fact, I sense I get points for it, since most of the ways you lose legs are pretty scary, and I seem to have overcome it.
But you enter a room with a hole in your neck and it's confusing. It's creepy to many. I grew up in an age of non-smoking campaigns where people smoked cigarettes out of their hole, and talked like robots. People are going to assume I did this to myself, when I've never smoked a day in my life.
I was afraid of finally being a medical freak.
Then last week Jeff and I drove to MO to check on my dad. I was surprised how much better I felt. With the lower elevation and the warmer moist air, I had a bit more energy, more projection of my little voice, and not as much windedness. It was a peek into 'better'.
As soon as we got home I came down with the family cold, with lots of mucous, which is terrible for my condition. I could barely get to the bathroom several times a day without becoming severely winded. Remember, every trip out of bed meant putting on two prosthetic legs and getting into my wheelchair. I was on my supplemental bedside oxygen almost full time and my oxygen levels still wanted to hit the mid 80s (they are supposed to be above 95).
I felt like a true invalid. And it made me MAD.
While in bed I had been doing deep dives into what life with a trach really looked like. Not the kind hooked to a ventilator. Just a trach. It's not as well understood.
But I found many videos, on TikTok and YouTube, about what everyday life looked like, from young people. In their 20s, just living their lives with it, talking normally, breathing normally, and sharing their stories for people like me.
Just like for so many years I've shared my stories about how living with prosthetic legs isnt so bad. Ironic. I'm the one who needs the help now.
I realized that it's time to move on. To do what I've always done. Do the next thing to get the life I want. Many years ago I wrote a book about my elective amputation. It's all about doing what it takes to get the life you want. Why cant I take my own advice?
Maybe this is part of my purpose on this planet. My life motto, after I deconstructed from the Baptist Church, has been "We're all just here to help each other". And I really believe that. And maybe by getting this surgery, and getting my life back, I can help someone else, once again.
Now that the cold in subsiding, and I have the energy to be at the laptop again, I wanted to get all of this out. To start this journey. I hope to remain faithful, to document this process. The days up to surgery. The days after, the days of finding my voice again. I might have to add to my TikTok videos, for voice samples. I have a couple of videos on TT of my voice before I lost it, and I barely recognize it anymore.
But by summer I want to READ to Eli. I want to SING with Eli. I want to TALK to my husband and kids. I want to have enough breath to start walking up and down the sidewalk in front of my house, with my walker of course, and get my muscles back.
I want to make my own phone calls.
If you've made it this far, thank you. This is a lot for me. For my accountability. If it helps you, as my MO roots say, "that's gravy".
More to come. Here we go......
Judy
