Let’s assume you are a recent amputee whose first thought, like mine, was, “Wow, I will NEVER be able to do anything again!” After a few weeks of PT/OT, you have changed that mindset to, “I WILL be able to do things, just in a different way.” Now you are at home, waiting for the swelling to go down, letting the incision heal, and decreasing your pain meds. And it seems like having one question just seems to lead to….more questions.
I am the adventurous sort, but I must admit, spelunking is not part of my skill set. I love repelling, but once I get to the bottom and look at all the different caves to explore and how easy it would be to get lost, well, just not my thing. You may have that same feeling about your new normal – which questions are more important than others, how do I prioritize, where is the best place to get unbiased and factual, up-to-date information?
I now introduce you to the Amputee Coalition (hereto known as the AC), a “one-stop-shop” that supports all aspects of limb loss/limb difference, from one-on-one mentors to making changes at the federal level. Like spelunking, once you hit any tab on the website, it opens up to a myriad of options and other resources that are easy to get lost in – which ones do you choose first? Where will it lead you? What do I need to know now? What can wait until later? ….more questions!
So let’s repel down and take a quick look-see into a few caves that you may be ready to explore. Go to www.amputee-coalition.org. Start educating yourself about both the resources and the support you can receive from this limb loss/limb difference national non-profit.
We’ll check out a few things that a newbie like yourself may find the most helpful. Look at the five tabs you see directly to the right of the AC logo. First, hit the “New Amputee?” tab. This will take you to a page with three important topics: Request Resources, Education, and Support.
If you have already met with a CPV (Certified Peer Visitor), then you have received some of the information that is in Request Resources. If you don’t have a CPV, hit that tab and have any information packets you want to be sent to you (it’s free). These contain a wealth of preliminary information, including a publication called First Step, which will go a long way in answering questions that you now have.
The Education square lists four resources – feel free to root around in them a bit, as they offer a good introduction and lead to many other resources you may find interesting, depending on your specific needs. (Be careful how far down the cave you go!) If you click the “National Limb Loss Resource Center,” you will get a list of resources. I suggest you click on one tab, go exploring, write down questions that query brings up. Ruminate a day or two. Then click on another tab and go exploring again. The last one, “Ask for an Information Specialist,” will be most beneficial, because it allows you to speak to a real human being. Great if you need an immediate answer to something that is time sensitive.
The Support square is self-explanatory; exploring these resources is one of personal preference. I believe that at some point, every amputee has questions that just cannot be answered by folks who are not amputees themselves. Some amputees are ready for that resource sooner than others. The first time I met my CPV, I was an in-patient at a rehab facility. Here was a guy who had the same kind of amputation for the same reason, and my jaw fell open when he just walked right in. Wow! This amputee could walk! And work! And (fill-in-the-blank)! And, and, and. It caused an instant and momentous shift in my mindset. If you hit the “Talk With Another Amputee” tab, you will be contacted by a CPV; how much contact you have with that individual is up to you. You may only have a few questions and only need to talk to your CPV once or twice, or you may become life-long friends.
If you DO want to join a support group, go back to Home, and move from the “New Amputee?” tab, farther to the right, to the “Find Support Near You” tab. There are over 400 groups listed, so finding one is very easy. If you live in a very rural area, not to worry! Most groups are now virtual; join the one that is closest to your area. You will find a welcoming group of people who not only will help you with any issues that you bring up but also will bring up issues themselves, no matter if they have been amputees for less than a year or over forty years – there is always something new to learn. And there is never any pressure to contribute; you can always just listen in.
Back to Home, look on the orange line below the logo and click on “Calendar.” There you will really get a feel for the extent the AC has regarding outreach to the limb loss/limb difference community. This may help you with your time management, as support/social groups are listed by date and time. How involved you become is up to you.
I met my CPV before receiving my first prosthesis, but it took me almost a year before I could see beyond my own recovery and begin a relationship with this community. Turning to the Amputee Coalition helped me find answers to many of my questions, gave me immeasurable resources, allowed me to make new friends, and helped me decide how involved I wanted to become. As a newbie, I “repelled” into those first few AC tabs. And although spelunking is still not my thing, as a two and a half year member of this elite club, I have become more adventurous and have explored more about what the AC has to offer. As you become more comfortable with your new normal, I hope you do the same. Belay-on!
And remember: “you don’t know how much strength you have until you are called upon to use it.”