Life with Limb Loss: Building Resiliency

The experience of losing a limb is a complex and encompassing journey and a hard one to describe to those that have no knowledge of what it entails. It is walking a narrow, twisted, winding pathway with oddly placed speed bumps of varying heights, the very act of which everyday literally requires not only balancing physical needs but also mental and emotional needs.

Every step.

Every single day–for the rest of your amputee life.

Physical needs of an amputee are often recognized as the priority. There are ‘fixes’ to help with regaining mobility; there are people trained to get us available prosthetics and moving to the best of our abilities. This alone is a huge mountain to climb, one worthy of recognition and celebration as every step forward is a milestone. However, the mental and emotional aspects of healing as an amputee can be the hardest hurdles to confront and accept, the depth of which are only visible, and felt, by you. Loss and grief in any aspect of being human are where we stumble and fall, crushed by the weight of something so much heavier than believed bearable. Losing a limb through trauma or illness can feel the same as losing a loved one – the gap feels vast and the abyss too deep to comprehend how you will feel whole again.

After losing my leg in a motorcycle accident at 16 and coming out of consciousness to face this new realization, the only coping measure I could employ to survive was to get through one day at a time. I was buoyed up by the never-ending love and support of my family and friends throughout the day, but night times were a different beast altogether. I was alone with my new reality and an overwhelming sense of grief. I sat alone with the loss of who I thought I was growing into and a blatant awareness of now being something entirely different, foreign. On a basic level of recognizing the body that once was mine, who was I now? The hurt was raw, palpable and couldn’t be ignored. Hospital nights were quiet and filled with dimmed lights, my headphones on repeat with songs that resonated and countless tears. This was grief. And unbeknownst to me, it was also the release – the beginning stages of loss and moving towards embracing healing.

I’ve learned much about loss over the span of 30 years and as an amputee, mental health has been a passenger buckled up right next to that grief. It has been on my radar for longer than it hasn’t. Wounds become scars and loss shifts to cycles of depression and anxiety. Anybody who has experienced depression knows how debilitating it can be. I questioned myself during these episodes and wondered what was wrong with me??? There were times when the darkness felt consuming and all I could do was hold on for dear life and ride it out.

However, what I noticed over the years was the patterns of these cycles. It became something I could recognize, like an old acquaintance arriving, to sit with in contemplation of how we might forge ahead together. My demons in darkness evolved over the years to become guides of humility, compassion for my ‘imperfections’, a finer tuned sense of empathy for others and to also remind me when I was beyond ready for a much needed mental breather from amputee life in an able bodied world. But here’s the thing: it took embracing who I was to understand how much energy it took to sit in these dark places where my soul couldn’t breathe and the heaviness of it was more work to carry than the struggle through to lightness and positivity which was where my soul was most at home.

When I would feel my smile strain and the lonely weariness creep in, I knew the downward slide was close. I would retreat in solitude, desperate to ground myself in an essential connectedness to the world around me to feed my soul what it needed most. Staving off the darkness was about learning to read what my soul needed before my mind took over the reigns and steered me downwards. The forest called, the salty ocean air beckoned, the garden tugged at my heart for planting my hands in the soil pulled me down to earth and connected me to something other than the unhelpful messages in my head.

My years as an amputee have shown me that these cycles continue on a much more muted level based on the correlation between physical ability, mobility and independence. Every 3-4 years, I am re-fitted for a new prosthetic and during that time it can take weeks and sometimes months to work out issues with alignment, fit, pressure sores, etc. This is a time consuming process and attention to detail is everything for successful mobility. It takes a huge amount of physical and mental energy to test and plough through the trial and error of finding comfort and functional fit. This process does not include time for what I call ‘tune-ups’ and dealing with little issues that arise from daily wear.

It has become second nature to go into these approaching cycles with a reserve of skills and with an understanding that the physical and emotional discomfort will not last in addition to a reminder to try to practice compassion for self (that which is so much more easily given to others). Remembrance that the sun will push through once again because darkness is countered with light, and because once you know this is possible you realize that your ability to nourish it creates more light. This is the best medicine.

Good mental health belongs to each one of us regardless of abilities and requires the same attention and care that our physical bodies receive. So, how can we find “comfort and functional fit” within our mental and emotional well being while building resiliency?

  • Accepting help. By allowing others to authentically help you in your vulnerable moments of struggle, can affirm that you are not alone. Sometimes our support network needs directives on how to provide the help that you actually want, and it’s okay to be clear and honest about this. Outside of direct support available, consider support groups – there is peace in finding others who understand your experience through their own. Keep in mind, no two support groups are the same in what they offer. Find your people. Connection is everything.
  • Avoid comparing yourself to media’s misrepresentation of what an amputee ‘should’ be achieving. We are individuals with different stories, own yours and do what is best for you. This is a chapter and not your whole story. Limb loss does not define you, it contributes to who you are and is woven into all other experiences within your core.
  • ‘Feel’ your feelings. There is no way around this but through it. Try allowing space for the heavier feelings. The more you sit with these emotions instead of avoiding them, it diminishes the fear or negativity related to them and you will recognize the role it contributes to healing.
  • Advocate for yourself to the best of your ability. It takes strength to ask for what you need and if you need support doing this, find someone you trust to help speak for you. You are worth this. Do not accept less.
  • Look for inspiration. Pay attention to what stirs your soul, fuels your spirit and watch how your body responds to it. Feed it more of those moments.

The journey of life with limb loss is always changing, requires immense adaptability and can be one of the biggest challenges you will ever encounter. The body and mind are incredibly resilient but not without flaws so reach out for support when needed and trust that you can do this. Adversity has its gifts and the human spirit is strong. Be kind to yourself, advocate for your needs and allow yourself the grace to live life to the best of your abilities on your terms. We are in this together.