How does it not? Every aspect of every day. Here are a baker’s dozen ways my life changed…
- Identity – We have many identities, and how we behave in a group always takes that into account. In August of 2018, I added amputee to that list. Other identities are not necessarily physical, but having a prosthesis, mobility aids, or having limb loss draws the eye to what some people might view as a flaw. My amputation gave me back my “new normal” life. That is something to embrace. I identify myself as a wife, a mother, a teacher, an amputee. When I’m with my book club, my other identities take a back seat. I decide when my identity as an amputee is in the forefront.
- Accessibility – If you owned a Ford and then bought a Chevy, you would, suddenly, start noticing all the Chevys that were the same model as yours. Have they always been there? Yes, but they weren’t on your radar. Once you bought one, you started, consciously or unconsciously, seeing them. I now have a much more discriminating eye to accessibility issues, from poorly thought out HC parking spots, to having to pay for HC parking in some municipalities (not necessarily a bad thing, as it discourages able-bodied people from parking in them), to some awesome, well-engineered accessibility. Calling ahead (sometimes I use the satellite setting on Google Maps) is something I do when traveling somewhere new.
- Insurance – It’s crazy the amount of time some of us spend dealing with our insurance companies: claims, complaints, appeals, and the worst (in my opinion) errors. I had one procedure that was miscoded as experimental instead of exploratory. Even with my doctor’s help, they denied my appeal. Although they lowered the price tag considerably, it still pissed me off. Especially when said insurance company approved a more invasive and costly procedure for the same problem. Go figure.
- The “new normal” – Our world has been shaken, and we all have to learn to adjust to our circumstances. I learned so many hacks from my PTs and OTs. Sometimes the simplest things need to be approached differently; that can be frustrating. I personally enjoy the process of problem-solving, but that’s me. If you need help, see #5 below.
- Support – One of the BEST parts of being in a support group is getting ideas for doing something amputee-related. To wear a shrinker or not, to compare components, to vent if necessary (and we all find that necessary at some point), to make friends. And sometimes, you just need to chat with someone who has the same shared experience. Although I am not an upper limb amputee, I recently had hand surgery. I turned to an upper limb loss member of my group who invited me to join an upper limb loss FB page. They were incredibly helpful in preparing me for my one-legged/one-armed stint. In my opinion, support groups are invaluable.
- Body Image – This is a tough one with whom many amputees struggle, especially at the beginning of their “journey.” What does it mean to be a “whole” person, and are we less than whole because of our missing body part(s)? Will other people avoid us because of the way we now look? (yes) Will people make fun of us? (yes), and how do we handle it? Will people avoid us? (yes) and how does that make us feel? I fully admit that I still struggle mightily with body image. Sometimes, if I’m being brutally honest, I think my prosthesis is my most beautiful part, physically speaking. When this becomes a burden, I refer back to #5.
- Clothing – see my post about whether or not to show off your hardware. A very personal decision related to #6 above. I do show mine off for 3 reasons: don’t need a bathroom to change out ply, education for the abled-bodied, and RHO3 is beautiful and part of my identity.
- Falling – when you first got your license, your folks probably told you that “It’s not IF you get into an accident, but WHEN.” Same with falling if you have a lower extremity prosthesis. I was so scared to fall and thought I would break in half. Well, I fell 5 times in 2020 (goes along with it being a shitty year, doesn’t it?), and I didn’t get hurt except some scrapes, black and blues, and a bruised ego. My PT made sure I could get myself up, without anyone’s help, if need be. Invaluable. Learn how to pick yourself up.
- Expenses – The modifications to make our home accessible were extensive. And because prosthetics usually are only covered 80% by insurance and copays for doctor visits and copays for PT/OT and copays for medicine—well, we had to get our finances in order and truly stick to a budget. A financial planner was very helpful; find a reputable one.
- Fitness of Body and Mind – It took me a year and a half to embrace fitness. My routine includes working out, yoga, mindfulness, meditation, connection with the amputee community, and nutrition (nutrition is my weakest link, not gonna lie!). Six days a week I exercise; it took a pandemic to kick my butt in gear. Started out slowly and now it’s just part of my daily routine. 20 minutes a day; that’s all you need!
- Opportunities – look for them and go for it. Michael Jordan said, “You miss 100% of the shots you don’t take.” Search for and apply for grants. Recently I received grants for a custom swim leg and a recumbent trike. They didn’t just fall into my lap. The swim leg was from the Spaulding Rehabilitation Hospital’s Manton Grant Equipment Committee and the bike from Challenged Athletes Foundation. It was definitely worth the effort of the application process! So many nonprofits that can help you; seek them out!
- Nomenclature – prosthesis, prosthetic, orthotics, chopart, disarticulation, gait, proprioception, symes, transpelvic, pylon, shrinker, liner, socket, ply, microprocessor, TMR, osseointegration, residual limb, lamination, K-levels, Amp Pro/Amp no Pro, hydraulic vs.mechanical, phantom pain/phantom sensation, neuroma, transfemoral, transhumeral, transtibial, transradial, transtibial, the ADA, the AC, AE, AK, BE, BK, BAKA – just off the top of my head. There is so much vocabulary you need to add into your lexicon. Know what pertains to your circumstances and learn the language.
- And haven’t all of us, at one time or another, texted the word “prosthetist”, hit send, only to find the damn autocorrect has changed it to “prostitute”? You just have to have a sense of humor :-).
And remember: You never know how much strength you have until you are called upon to use it.
If Beth’s story rings true for you, we’d love to hear about your experience! Get in touch with us at email@example.com.