Even though I had the opportunity to visit with a Certified Peer Visit (CPV) before my amputation – six months in fact – I never took advantage of it. A CPV gave me her name and phone number while I was still at in-patient rehab, eight months into my twelve month stint to get home. She was the first walking-talking-working amputee I had ever met, and whether she knew it or not, and even though I never called her, she was the push that made me decide for elective LBKA. We are good friends now, and her support has been invaluable (more on that later). But why in the world would I pick up the phone and call some stranger I had just met? So I didn’t.
Fast forward to inpatient after my LBKA. Two days in; my case manager asked me if I would like to meet a CPV from the Amputation Coalition. Now I’m positive that first woman also mentioned both, but it didn’t register at the time. The case manager said that she would match me with someone with similar experiences and was also a BK, and that I could ask this person anything I wanted about my new life as an amputee. Sure – why not? Time to jump into the pool, right? I had nothing to lose.
And that’s how I met my CPV – a BK who had also lost his leg due to a motorcycle accident. He brought me some materials from the Amputee Coalition about what to expect and things I should start taking care of – finding a prosthetist, setting up PT and OT when I switched to outpatient, how to talk to my PCP, dealing with insurance, to name a few. We hit it off. When he left, and I started sifting over the materials and our conversation, I realized that I had so many more questions! I think we all go through the “I don’t know what I don’t know” phase at the start of this journey. He was the second amputee (of many) who walked-talked-worked, had a family and kids, and led a very “normal” life. He answered all of my questions without bias, provided materials when I needed them, and offered references when I asked. Through him I started to understand that I could make my life as normal as possible given the other injuries I had sustained. It has been three years since that first meeting, and we still keep in touch. If we ever go back to in-person support groups at my rehab hospital, he has a big hug coming from me.
He kept me from walking into so many snake pits that I decided to ask him how he became a CVP. It was so easy! First, you must be an amputee or living with limb difference for at least one year. Then you apply to the AC, take the training course, get your background check, and then get your nifty badge! Since Covid, they have taken the entire training and adapted it to an online program that can be taken over the course of a weekend. I am not sure at this writing if they will, at some time, continue in-person training. My training was quite easy and fun. I met some great people who, like me, wanted to pay it forward. If this is something that interests you, contact the AC and find out when this will all roll out.
I wondered why people decided to become CPVs. I asked and was able to boil it down to two camps.. The first camp consists of amputees (including limb difference as well) who were very well supported. Their post-amputee doctors and/or therapists made it a point to ask them if they wanted a visit and what it would entail. A very few lucky ones not only had their health professionals ask about a CPV, but also had enough lead time to get a visit before the amputation. (In my opinion, this is a very important next step for this program, beginning with the Hospital Partnership Program). These amputees also had support from families, friends, their communities, and, if veterans, the VA. They realized the importance of paying it forward – to not have to reinvent the wheel – to gain information from those who were farther along the timeline. They couldn’t imagine how difficult it would have been to navigate everything they initially had to deal with, without that help and support.
The second camp consists of amputees who had, unfortunately, the exact opposite experience. These are amputees who were abandoned by families, friends, and their communities, who considered them “broken,” or “damaged goods.” I know of one CPV whose family gave them a deadline, an actual date, by which they had to be both physically and emotionally well, and if they didn’t meet that deadline, they would pull their support. And that’s exactly what happened. (WTH???) These are the folks who had no choice but to navigate their situation and medical issues with very little help, save perhaps a social worker or case manager. They became CPVs because they already knew the pain of going it alone and didn’t wish that on anyone else. These folks reinvented a new family from like-minded amputees who were there to support them and visa-versa.
No matter which camp CPVs come from, another reason they take the training is that as supportive as able-bodied people are, there are just some questions that can only be answered by another amputee, or as one CPV put it, “speaks the language of Planet Amputee.” Paying it forward and helping newbies see that they can move on and be successful (whatever that definition is for them), is universal. CPVs get tremendous satisfaction from helping others, championing success and offering resources and perspectives during both physical and emotional setbacks. If you want to be part of this community, this training is a great way to start.
And you don’t have to know everything about being an amputee or having limb difference. There is no shame in telling a mentee that you don’t know, but you’ll find out and get back to them. That’s when a CPV taps into other CPVs’ experiences and uses the Amputee Coalition as a resource. Every time you are assigned a new mentee, you are exposed to a unique person with a unique story – supporting them allows you to “put more tools in your toolbox,” which then allows you to help both new mentees and new CPVs.
That woman I told you about earlier? She is a CPV and a Support Group Leader for the AC. She has definitely become one of my mentors, as well as a friend. My getting a part-time job and two grants for adaptive equipment happened directly due to her skills as a CPV.
You’ve heard the phrase, “No man is an island.” Sometimes new amputees think that having the support of a CPV (or going to a support group, for that matter) is a sign of weakness. Au contraire, mon ami! “Strength in numbers,” you’ve heard as well. If your car broke down, might you ask your friends or family for a good mechanic? If you lose an arm, might you ask someone who has already lost one what it’s like and what resources could help you? Yes, yes, yes..
CPVs don’t tell another amputee what to do, where to go, or who to see. They help the amputee find answers to those questions with the intention of the amputee finding the best possible resources specific to their own circumstances. They don’t steer the boat, but they do offer the path of least resistance so they can sail into calmer seas. Okay, enough with the metaphors, you get my “drift.”
And remember: You never know how much strength you have until you are called upon to use it.