Amanda was a 33 year old working mother to two young children in the early phases of a new relationship, when an infection completely changed her life. She had been searching for signs to pursue meaningful community-driven work and in a scary turn of events, experienced life-saving surgeries that included multiple amputations and relearning how to live her life.
“Mommies aren’t really allowed to get sick because there’s too much to do and the world would fall apart” led to pushing an ongoing illness away. As an otherwise young, healthy, fit person who had never really been ill before except for perhaps one bout of the flu, the severity of the illness, caught Amanda by surprise. She experienced hallucinations that blended with reality. Now, she’s nearly the 10-year anniversary of her alive-day. To save her life, the difficult decision to amputate all four of her limbs was made. “Do I have a job” and “Where are the kids” were her first questions and remained her priority throughout her recovery.
She approached rehabilitation and relearning how to live by believing in a need to ‘buckle down and figure it out’. Now it sometimes looks easy from the outside looking in, the first few years were extremely difficult. The good, bad, and ugly was terrifying because she didn’t know what her life would look like, not only for herself, but for her children, and her then-boyfriend. From the very-real suicidal thoughts because of not being able to care for herself, to choosing ‘fight’ when presented with the flight or fight options, Amanda made the ‘easy’ choice as she had kids who didn’t choose to be here and depended on her. She felt it was the only option she really had.
Hanger Clinic hosts several events annually for individuals with limb loss and limb difference to learn new skills, connect with others with similar experiences, and work with expert clinicians focused on enhancing mobility., Amanda attributes attending those events early in her rehabilitation as critical moments for when her attitude and experiences changed from survival to thriving. When she started traveling, she was initially still dependent on others, but independence increasingly became possible as she became comfortable with getting over her pride and figuring out the accommodations needed to navigate travel. First the goal was learning how to travel, then it became about giving back to the community and teaching others, and now with a sense of confidence in travel, goal is to enjoy the experience, destination, and be relaxation time.
In Maryland, where Amanda lives, the state requires the use of prosthetic arms to regain a driver’s license, which became the reason Amanda heavily pursued becoming proficient with prosthetic arms not only for her activities of daily living (ADLs), but for being able to transport her kids to and from therapy, school, after-school activities and more. While early-on in her rehabilitation, Amanda found cosmetic arms easier to accept. After taking the time to heal, she ultimately found that she preferred the function of the electric hooks (which she continues to use to this day), because they allow her to do all the same things that she did as an able-bodied person prior to amputation.
Right after the National Conference, Amanda and a friend are headed to Cancun in celebration of her 10-year alive day and it’ll be a fully independent trip, without her now-husband who has helped and supported her throughout her journey. “The jig is up, you have a disability… accept the help when you need it. If you need help, ask, there’s always a way out of a bad situation. Learn to laugh at the really embarrassing stuff.” These are mottos Amanda lives by and offers to others for accepting what cannot be changed and for pursuing what is in a person’s control. She shared that once she even “clocked out in the middle of Walmart and punched one of my kids on the way down with my metal hook,” which is terrifying because of how it may be perceived in public, but it is the reality of what happened. The embarrassment of that situation along with stress and anxiety were valid emotions, but eventually being able to move past them and laughing at them to not only cope, but accept, have helped Amanda gain confidence with each day.
Amanda’s most helpful thought process for making travel successful and positive, especially when traveling independently, is “how can I make this room work for me?” She continues to ask herself that question and the answer often requires managing the fear of germs, which is extremely nerve-racking given an infection led to the amputations in the first place and being okay getting on hotel room floors. She initially traveled wheelchair-free with only her prosthetic limbs to learn how to make adaptations. Some tricks and accommodations she depends upon:
- Requesting extra towels to put on the floor helps to create a barrier between the hotel room floor and her body.
- When the shower knob is too high and unreachable, she found herself turning the shower on first, then putting a towel down to help prevent infection and contamination from any germs on the ground, then removing the prosthetic devices, then getting into the shower.
- Bathtubs are easier than showers in some cases, because of being able to use the spout to wash her hair. The downside to a tub is sitting in the tub while the water warms up, but it’s a tradeoff she was willing to make when needed.
- Traveling with electrical extension cables and multi-charge ports has helped with overcoming issues when hotel rooms have limited charging ports for recharging all electrical devices including prosthetic limbs.
- Building extra time to get ready into the daily travel itinerary and having extra time for each activity helped and continues to help from becoming overwhelmed from being late or in a rush.
As a quad amputee, one of the struggles with recharging her prosthetic legs was needing to keep her prosthetic arms on to plug in and unplug the charging cables, so she recently discovered a hack to be more efficient by opening a dresser drawer, propping her prosthetic legs in them to have easy access to the charging ports, and having the electrical extension port nearby. This helps from having to find the little itty-bitty port to charge the legs.
Amanda has learned how to do most everything for her activities of daily living (ADLs) without prosthetic limbs, which is extremely helpful for nighttime and spontaneous/unexpected emergencies. Prosthetic devices for her do make ADLs easier but having the fundamental understanding of how to maneuver her body for bathing and using the restroom especially, have helped to instill confidence in being able to navigate unexpected circumstances. The trial-and-error approach allowed her to unlock creative ways to figure out how best to do all that she needed to do. Just because of having always done something a certain type of way or a preference to do a task how she did it prior to her disability, doesn’t mean that is always possible in the exact same way anymore, and that is what Amanda has accepted.
First, Amanda became comfortable with her disabilities and reality in her home with a caregiver and support system, then she began becoming increasingly comfortable with her disabilities in transit, public, and during her travels both domestically and internationally. 
Check out the video on YouTube below or via the QR code to watch and hear Amanda share some travel hacks to help you prepare to attend the 2024 Amputee Coalition National Conference. She’ll be attending ACNC24, would love to meet you, and answer any questions you have for her. Then, stay tuned for part 2 of this story coming soon!