Navigating Life as an Elective Amputee: Insights and Inspirations
A little background on me: I became an “elective amputee” (Strange term) after three years and thirty plus trips to the operating room for attempts to salvage my leg after a series of blood clots and a bleed led to something called compartment syndrome. I had a series of more clots and bleeds and infections after which eventually let me to my vascular team who have guided me through this process as have amazing amputee (and non amputee) mentors, teachers, friends and family. Prior to amputee life, I have worked in pharmacy as a Certified Pharmacy Technician and Patient Advocate for an oncology service. My other specialities are in Critical Care/ Emergency Medicine and Medication Therapy Management. I love dogs, seals, coffee and cheese. Without further ado: some main ideas and I’ll offer a little commentary on each for those who want to read (no hard feelings if you don’t!).
I’m really proud of you - and you should be, too. You have made it this far and look! You’re still reading! I’m not trying to sound like I am placating, nor to be sarcastic. This experience IS HARD. Full Stop. I’m only just over a year out and it is a struggle sometimes. Maybe a lot of times. Take a moment right here, right now to credit yourself for what you have accomplished. How far you’ve come. Remember that first day? Give yourself that pat on the back. You’ve worked hard. Remember that first day after surgery? Take pride in the “small” wins! Cause before you know it, they add up to pretty big wins.
Pain, Anxiety, Depression, Insomnia often go hand in hand. This has been a tough experience: physically, emotionally, mentally, socially. One thing I have learned in years of having Complex Regional Pain Syndrome (CRPS - predating my amp), my head has a pretty significant impact on my pain. If I am stressed, anxious, or frustrated my pain will increase. There is a large body of research ( https://www.psychiatry.org/news-room/apa-blogs/chronic-pain-and-mental-health-interconnected#:~:text=People%20living%20with%20chronic%20pain,with%20chronic%20pain%20experience%20depression.) that discusses the connection between mental health challenges and chronic pain, noting that when we look at someone’s brain in a functional MRI, pain and anxiety/depression etc share biological processes and affect similar areas of the brain. It’s quite fascinating, and there are even some anti-depressants which are used to treat pain (as always - talk to your medical provider).
Leave the Stigma at the Door! Mental health is not an aspect of our lives which needs to live in a closet or be tucked away in a box. Mental health is part of your health. Your feelings are valid and there is no shame in reaching out to professionals for help. Seeing a trained professional - be they a psychiatrist, Psych-Nurse Practitioner, psychologist, therapist, counselor or social worker is a great way to help you feel better, gain coping strategies and skills, and help you grow. Your family/ loved ones might also benefit from this as well. We all have our struggles.
The journey we are on isn’t linear. When I first became an amputee, I thought “I’ll be good once I get to the acceptance stage of grieving.” A year+ out and I still cycle through the phases of denial, anger, bargaining, depression and acceptance. And that is okay. We aren’t at 100% all the time, all day, all night. Moments of insecurity, frustration, and sadness are still there. Living life with limb difference or limb loss is full of ups and downs. As time goes on and you gain more experience and confidence you’ll learn and develop new skills and knowledge which help inform how you respond to this life-change.
You don’t need to be an Amy Purdy, Trischa Zorn-Hudson, Jessica Long, etc. When I became an amputee I was inspired by incredible athletes such as those mentioned and often felt a second wave of depression or frustration when I would compare myself to their level of success and achievement. You don’t have to be them. Instead take their stories as a reminder that there are no limits - the world really is our oyster!
Connect with some friends, mentors, family. Create your support team. Finding and connecting with a team to celebrate the small things, the big things, and call out to for encouragement, support or just an ear to bend is so important. Knowing there are folks who will validate your feelings, appreciate you for who you are and encourage you when the day may be a bit gloomy is so important. Connecting with some amputees is also so validating and refreshing. Knowing someone else has been there, done that, got the t-shirt has been eye opening for me, and has made this process so much easier. Know that you have a crew here at Less Leg More Heart who are rooting for you and in your corner.
Find some escapes/hobbies. Having something to do, whether thats finding adaptive fitness programs near you, heading to the gym, volunteering, or whatever floats your boat is so critical for your mental well-being. I am not the “gym” person - and going to my adaptive fitness class can sometimes feel like pulling teeth when my bed is so comfy! But I push myself to go. And by the time I’m done, even if I am exhausted, the endorphins really do help with the pain and depression. Taking care of yourself cannot be understated. Especially as we have to depend more on what we do have left (arms, legs, your core, endurance) to live our lives. Pick up an instrument, or learn a new one! Take up knitting or painting. Have something you can pick up when waiting for the never-ending doctor/ prosthetist appointments or turn to if the pain is bad, you’re just taking the day to rest and relax or just want something to escape with.
Develop a self-care routine. Maybe you have a morning routine, or a bedtime one. Take care of your body and mind, and they will take care of you.
Take pride in who you are. Wear a prosthesis with pride. Share your story when you are comfortable, and join support groups and if you feel up for it, join advocacy efforts to shine a light on our community and help make positive change.
Add LLMH on Social Media (Here’s our FB, IG) We have weekly peer meetings on Zoom and are always connecting professionals and information to the amputee community!
One last thing.
Please consider adding this number to your cell phone: texting 988, or 1-800-273-TALK (1-800-273-8255)
If you cannot reach your support crew, if you feel lost or in need of help, the National Suicide Prevention Lifeline is available (in the United States) to provide free, confidential support 24/7. You can reach the National Suicide Prevention Lifeline by calling or texting 988, or 1-800-273-TALK (1-800-273-8255). They also have a chat feature on their website at https://988lifeline.org . If you're outside the US, there are similar hotlines available in other countries. If you need immediate assistance, please reach out to them.
Sean E Samitt, AAS, RPhT, CPhT
CC/EPS, MTM-C, SCC, NSCC, MASHP