Living as Half a Person

My story of living with limb loss wasn’t a choice – it was mandatory in order to live. I’ve lost over half of my body, bit by bit. Yes, it’s been hard but overall I’ve adjusted to this situation. Through a series of complications, I lost my right leg, first below the knee, then above the knee; then I lost my left leg above the knee. After more complications I had a left hip disarticulation, followed by a right hip disarticulation a few months later.

This limb loss is especially hard because I’ve been put in a position to have to totally depend on someone. I have an awesome nurse; she is compassionate and very informed of my medical needs. I need a doctor who makes house calls because I’m not able to go to an office right now. I’m working toward getting a power chair, which is a desperately needed item because the manual chair is hard on my body.

My doctor was very informative on the issue of losing my limbs while I was in the hospital. I had two different doctors in a year’s span; each advised me of what was going to transpire and what the outcome would be. My community isn’t up to date on limb loss. My resources have been quite limited, so I feel alone at times. My support group is my children. There’s not much in the way of support groups here in Detroit, Michigan; the ones that I’ve found are in other cities that are too far away.

Some people are born with limb loss, some have accidents, and others have medical conditions that lead to limb loss, but we all have to learn to live with it and learn to maintain. I’ve had to maintain in ways that the average individual wouldn’t be able to endure. It takes mental and physical strength to deal with losing what you’ve grown accustomed to having. Some fall by the wayside, some struggle, and others learn to manage and cope, which is sometimes the hardest thing to do. I’ve had to be resourceful and fend for myself due to being new to this world. I really need more resources for better living and communication with the limb loss world. I need my home updated for better accessibility, and transportation for getting about in the city.

Overall, I’ve just been trying to cope with the idea that I’ll never have my limbs back and I just have to maintain my stability in society to continue to live and try to be normal as possible. It’s not an easy task, and mental strength is a major tool for living with limb loss. I even struggle as I write this, hashing up the memory of all I’ve encountered over the past seven years of my life.

I’m homebound due to the lack of home modifications or transportation but I still make the best of it, regardless. Not everyone that isn’t an amputee knows how to relate to someone with limb loss; they don’t have the patience or know how to support the person or show compassion. It’s like the amputee has to educate the people around them and teach them how not to feel like they’re walking around on eggshells, which can make you feel that you’re unwanted or a bother. You have to help them learn how to help you with mobility and physical attributes and mental capability so they can be on the same level as you are. So many people tell me how inspiring I am to them and how strong I am, but I don’t see it because I’m still in the learning process myself.

So, my advice to those who aren’t familiar with limb loss issues: Learn how to be there for the person who has to deal with limb loss; learn their mental strengths and weaknesses; learn what their real needs are and try to be compassionate for them, because limb loss is a struggle. The amputee is in a grieving state of mind, so there are a lot of areas that need to be processed and talked about and understood for all involved. I’m praying that awareness and knowledge about limb loss will grow around the world and among our families, friends and legislators and we can come up with real solutions to help us continue to maintain and not feel like an outcast. The notion that having a disability means you have a lot of financial and insured assistance is a myth, because it’s not been roses for me at all.

Alicia Arrington