Support is key for amputees: A hidden, diverse population

March 02, 2022 | by Edward-Elmhurst Health

Photo by Cassandra Leigh Photography

Diversity, Equity and Inclusion Council of Edward-Elmhurst Health: We are DRIVEN to create a culture in which all races, ethnicities, religions, sexual orientations, physical abilities and socio-economic backgrounds can meet, share, learn and flourish in an accepting environment. By creating platforms and opportunities that allow us to come together, we can begin to know and understand each other. And through better understanding, we can effectively meet the needs of our diverse patients and deliver on our mission.

When patients walk into the Edward-Elmhurst Health outpatient testing center in Plainfield, they’re often greeted by Tom Carlson, who registers them for their procedure.

They likely have no idea he has a prosthetic leg. Carlson, 52, has been an amputee for six years, having lost one leg below the knee after a severe infection.

“When patients see my prosthetic leg, which has the University of Michigan logo on it, they say, ‘I didn’t know you were an amputee!’” Carlson says. “I don’t like to be treated any differently from anybody else.”

That said, he isn’t upset when someone notices. And he isn’t shy about sharing his story. In fact, he runs an online support group for amputees and has been working to get more resources in Edward-Elmhurst hospitals for patients who have had amputations, so they don’t experience the same confusion and isolation he did.

Infection led to amputation

Carlson’s amputation occurred while he was hospitalized in Tennessee, where he lived at the time, for an infection that had spread through his foot to his calf.

When physicians told him the infection had eaten away the bone in his foot, he agreed to amputate the affected part of his right leg below the knee.

“I said let’s just do the surgery, let’s do it right away,” Carlson says. “They did it the next day.”

The hard part, however, was just beginning. In addition to dealing with the hardship of an amputation, Carlson was left largely on his own to navigate the abrupt, substantial life change.

“I was a little nervous at first, because I thought, ‘How am I going to adjust or get help?’” Carlson says. “I wasn’t finding any information about support groups, so I went to social media.”

He found a website for the Amputee Coalition that offered peer visitors, though none were located near his home in Tennessee at the time.

“I fell into a depression. Not having that support, not having those resources,” Carlson says. “I didn’t want to go on about it or feel sorry for myself, I just wanted to move on with my life.”

Finding support

Support after amputation was a big missing piece of Carlson’s experience, and he vowed to do something to help other amputees.

He decided to become a peer visitor when he went to the 2019 National Amputee Coalition Conference in San Antonio. Not only did he learn how to help other amputees, he met his wife, Kim, who had her left leg amputated above the knee in 2015, at the peer visitor training class. Soon after, in May 2020, the couple moved to Illinois.

Carlson started working for Edward-Elmhurst Health in July 2020. His personal experience motivated him to start a support group for amputees on Facebook and to push for more involvement from the Amputee Coalition at Edward-Elmhurst hospitals.

The Facebook group has been a good place for people to get information and support without having to publicly declare they are an amputee.

“A lot of people don’t talk to others about their amputation,” Carlson says. “I don’t have a problem showing my prosthetic leg, but there are people who are self-conscious.”

With all the uncertainty and upheaval that an amputation can bring into someone’s life, having support and guidance can make the transition to a “new normal” more manageable.

“You can get pretty close to your life before the amputation. Maybe not 100 percent, but you can get pretty close,” Carlson says. “As an amputee you have good days and you have bad days. People struggle with it. But there is support out there for people who are amputees.”

Carlson is open to contact from amputees or their friends or family who are looking for information or support. Email him at hockeytiny@hotmail.com.

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