“I was just looking for someone to talk to about being an amputee.”
And that’s how Armeda Batchler got connected to Brianna Jones. It was that simple. Batchler was about two years post-amputation, working and raising her daughter in Las Vegas. In the immediate aftermath of losing her left leg high above the knee in October 2013, she had stayed busy with rehabilitation and some followup treatment for osteosarcoma. But as those routines receded, she had less and less contact with people who understood her situation, and a stronger yearning to connect with other amputees.
At about the same time, Jones was just beginning her journey as a right hip disarticulation amputee. “I didn’t know nobody,” she says. “I didn’t have any information or any resources. I thought life was over.” When her physical therapist suggested that she attend a session at an amputee support group, Jones decided to give it a shot. “That’s where I met Armeda,” she says. “She was the first person I met after having my amputation.”
They’ve been an inseparable pair ever since, and both women say the friendship has had profound benefits for their mental health. As Mental Health Awareness Month draws to a close, Jones and Batchler have lots of wisdom and experience to share. We met them last month near Denver at the Limb Preservation Foundation’s annual symposium, where the pair had traveled to make new connections and learn about the latest tech innovations. “We want to be advocates for amputees,” Jones told us. “We’ve never been to an event like this, and it’s been really eye-opening.”
This is their story, in their own words.
BRIANNA: I lost my leg in April 2015 due to cancer. I had two jobs, and I was going to college—my major was criminal justice—so I was busy. Just living life and trying to get my career going. One day my foot just kept falling asleep, and that turned into pain in my foot. And then the pain went to my thigh, like if you get a charley horse or pull a hamstring. I started getting pain right there. And so I’m like, dang, it’s hard to sit down. It’s hurting to lay down. It’s hard to do like everyday normal activity. And so I used to wear these like combat boots because I was a security guard. So I had on heavy boots, so I’m asking is it the boots? Some people said told me I had a limp in my walk, and if you look back on a camera and you can kind of see me dragging that right foot just a little bit. It progressed to the point where I couldn’t sleep. After two months or so, I went to the doctor and got all these tests. Finally they did a biopsy, and it took awhile to come back. That was the first time I ever heard the word “malignant.”
They took the mass out, and the hope was that it would stop the cancer overall. But within six months, it came back again, even more aggressive than before. It was like 10 times more pain. And at that point they decided, “We have no other choice. We need to we need to amputate.” I met with Dr. Hillock on a Thursday, and the surgery was Tuesday on the following week. Right on my birthday.
ARMEDA: My tumor first appeared right before I graduated from high school in 2005. My knee was swollen. I wasn’t experiencing any pain or anything, and we thought it was probably fluid because I played basketball and I was in dance. So 2007, I went in for a pap smear, and when I was walking out my OB said, “Why are you limping?” She sent me to get an x-ray, and when it came back she told me it might be cancer and said they’re going to send me for an MRI and a biopsy. “But don’t go on the internet,” she said. Right. So of course I go home and look this up, and the first thing I see is a gentleman with has leg amputated. I’m like, “Oh my god, is this gonna happen to me?”
My first surgery was in 2007, actually on my mother’s birthday, but they did not amputate at that time. They did a full knee replacement and a partial femur. I remember him saying, “25 years ago, we would have just amputated your whole leg.” So, okay, I’m happy, right? I go on about my life. And then in September 2012, three months after I had my daughter, it came back exactly like before. It was like deja vu. Swelling in my leg in the same place. But this time they gave me a CT scan, and I also had nodules on both on my lungs. So I had chemotherapy, and then they did the amputation in October 2013.
I tried to find someone to talk to so I could know what to expect and what’s the best approach to take with this. I did see someone who worked at Hanger, and he was an amputee himself. He was telling me it’s going to be difficult in the beginning, but it will be easier once you get into physical therapy. But there was really no one else I could talk to about other parts of this experience. There was an amputee support group in Las Vegas, but the guy who was in charge had to stop doing it so that had dissolved. I found him online, and he gave me all his contacts and everything. So I started the group back up, and that’s how I met Bree.
BRIANNA: When I went to physical therapy, I asked her if there was a support group around, and she said I might know someone. I didn’t know nobody, I didn’t have any information or any resources. I thought life was over. I lost my entire leg, I’m in pain, and nobody around me knows how I’m feeling. I went to YouTube and started looking at amputees who had the same cut. But to really have somebody sit down with me, that didn’t happen. I already felt like a burden, because I needed a lot of physical help. And so depression came, and anxiety came, and that was hard.
When I met Armeda, she was driving, she was working, she had a daughter. That let me see there are still people out here living, post-limb loss. After that, we became really close friends and never lost contact with each other. And we’ve always bounced off each other and tried to advocate for each other. Amputees just want to see people who look like themselves. You want to hear about how other people are solving problems. Or maybe they don’t even have a solution, but you can still learn from their experience. Just knowing there are other people out there and you’re not alone, that really helps.
ARMEDA: My emotional journey kind of worked backwards. I was doing so much when I had my amputation that I just had to keep going. My daughter was one year old, and parenting doesn’t stop. Mommy has to keep doing things as you normally would. And I did have a strong support system. I had my parents, and my mother-in-law at the time moved in with me and helped me a lot. I worked at a credit union, and every single one of my coworkers was amazing.
But in the middle of 2016, it started to take a toll on me. My daughter was starting school the next year, and I wanted to take that year to prepare her for kindergarten, so I stopped working. And I think that allowed the depression to set in. Because even though it was three years after my amputation, I never took the time to let it work on me. After I had my amputation, when we were going down the hallway to my room, I cried. And I told myself, I’m not ever going to cry about this again. I’ve never yet cried since then. But once it started taking a toll on me, it really took a toll on me. I started feeling like a burden. And I’m very prideful, stubborn person, so I’m not gonna ask for help. So I just secluded myself. My mom used to get scared if I didn’t answer my phone. My best friend used to come around and knock on my door to see if I was ok. It was a really deep, deep, dark hole.
BRIANNA: One thing that I skipped was grieving. Everything changes so fast, boom, boom, boom. But I never really sat down to talk about it and grieve. Every patient should be permitted that. I would see other people would lost a limb, and they’d be doing great. And I’m doing horrible. It takes time to accept it. You just gotta be patient with the process. Give it time—not a day, not a month, not a year. It’s gonna take several years to get back on a level playing field and even itself out.
Little things kept me focused. I made these goals to start seeing what life still has offer. I kept doing stuff that I already loved to do. I love writing. I like decorating. I like doing a lot of physical things, like skating and dancing. I would also definitely recommend therapy. Therapy helped me a lot. I’m a private person, and I don’t want to talk to anybody about my feelings. But I had to learn that I could not go back to being the old me, but you can’t because you’re not the old you anymore. You have to find the new you.
ARMEDA: We all learn from each other and with each other, because we all experience things at different times. And being an amputee, other people don’t always know how to help you when you’re going through things. I don’t always know how to talk to my mother, my brother, or my daughter about some things, and they won’t always understand. But when I was in my dark cloud, I was even embarrassed to reach out to Bree, because I was afraid maybe she won’t look at me the same.
BRIANNA: Life is still hard. And there are still times where I want to give up. Even with the support group, sometimes there are amputees who didn’t go through a rough time at all. They bounce back right after they have their amputation, and it can make you wonder, “What am I missing that I can’t just bounce back to life like this person?”
But I just have to keep finding those little things to keep me focused. We volunteer at the University for the physical therapy students so they can get that experience of working with an actual amputee, so when they go into the field, they actually know what they’re doing. There’s so many different types of amputees out there. It’s a whole community.
ARMEDA: Now that I’m out from under that cloud and I’m feeling good, I want to be able to help other people. Even just one person. My brother just had an amputation in September of last year. He had Berger’s disease, we never knew about it. I just told him, “We have to do this together. I need you to talk to me. I don’t want you to get into that deep hole, because it’s hard to get out of. I’ve been there.” I want to prevent anyone else from going there.
What I know now is that you have to accept your bad days. When you’re having a bad day, embrace it. And embrace the fact that you will have more good days, too. Being advocates for each other and just knowing each other’s survival stories, that’s what is strong about this whole community. That feels like my calling.