1st Person: Love Is Greater Than Limb Loss

Yes, amputation changes relationships. But with communication and patience, it might bring you closer to the people you love.

by Alexandra Boutté

A warm welcome back to Alexandra Boutté, one of our favorite bloggers and an occasional contributor to Amplitude‘s website. Alexandra is writing about limb loss and love this month at her site, Limbitless Sunshine, and she’s generously allowing us to share the first pair of articles from that series. She’ll have more to say on the subject later in February, so visit her at her blog and on Instagram.

Ten years ago I was an able-bodied 26-year-old who loved living on my own and had absolutely no desire to find a serious boyfriend. In my last relationship, I had been made to feel I wasn’t enough. I was done dating for a while and happy to spend all my time with my dog and my best girlfriends. Then Victor came along and changed everything. It was easy falling in love with him, and soon enough my dog preferred his lap over mine. On the second anniversary of our relationship, as fireworks sparkled over a St. Augustine dock, he asked me to be his wife. We were crazy happy, and life was like a Hallmark card.

Then came the cancer.

Not long after our wedding planning began, I was diagnosed with parosteal osteosarcoma in my right knee. Focus quickly shifted to my health, and my first surgery was scheduled within weeks of my diagnosis. This is where our greatest challenges began, but certainly not where they ended, as I would later have a recurrence which led to the amputation of my right leg. I lost my independence overnight and had no choice but to count on Victor for almost everything. I couldn’t wash my hair, feed myself, or get to the bathroom without him. I stayed up nights wondering if this would break us—if it would break me. He hadn’t signed up for this. When he proposed, I could do backflips. What now? I hoped and prayed that my life and relationship wouldn’t change in the wake of my cancer.

The thing is, it all changed. To get through it all, I had to become someone much stronger and learn how to cope with my anxiety. Little by little, I became someone who could get through anything. As time went on, my husband’s support shifted, too. When I needed him to be my missing right leg, he was. But as I healed and learned to care for myself, he gave me the encouragement I needed to discover that I could do anything I dared to chase after. He learned to step away and watch me fly.

We have been tested, and tested, and tested again. If just one of us had allowed this to consume us, we would not be where we are. Everything that happened made us feel even more connected.

Finding someone you’re compatible with is like a bad science experiment. Having a disability makes it that much harder, but it’s also clarifying. You’ll spend some Friday nights on the couch with a heating pad and a pain pill, and sometimes you’ll need help cooking dinner or driving to the store. It’s not what every eligible bachelor or bachlorette dreams of—but if someone won’t be there sitting next to you on those rough nights, they aren’t worthy of your love.

Don’t forget, there’s absolutely nothing wrong with being on your own. You don’t need a relationship to feel fulfilled and complete. You’ve been through so much, and you’ve built up strength not many would understand. Learn to love yourself first, just the way you are right now in this moment. You are beautiful.

Family Love: How We Heal Together

Romantic relationships aren’t the only ones that are transformed by limb loss. When you acquire a disability that you didn’t have at birth, it takes practice for you and your family to figure out new ways to support each other.

Something cancer taught me is that no matter how much your loved ones want to understand what you are going through, they just can’t; not fully, anyway. If they haven’t lived it, they will never know what it’s like to be in your shoes. But they do know what it’s like to feel the helpless pain of watching you struggle. When we forget that our family is suffering, too, we push the existing divide between us even further apart.

So how do we help them help us and work on healing together? Two words: communication and patience.

Becoming disabled changes so many aspects of our lives that we often yearn for a sense of normalcy, and the last thing we want is for our families to treat us differently. Without communication, this is impossible. We can’t expect our family to know that phantom pain is worst at night, or that we need to carry stump socks with us in case our limb changes volume throughout the day. They usually want to understand these things, but not everyone will ask the right questions. They might think it’s impolite to ask any questions at all. When my little cousin, who is only eight years old, visited me several months back, she was pretty fearless and asked me at least 50 questions about my prosthesis. I loved it. She genuinely wanted to understand how the device worked and how it felt to walk in it.

Adults often have the same curiosity, but they are usually a bit more afraid to offend us with their questions. So I often take the lead and start the conversation by showing them the basics of my prosthesis and what it helps me accomplish. Once everything is on the table, a weight is lifted on all sides, and you can begin to return to the normalcy that once existed.

I say “begin,” because asking questions is only part of the dynamic. Let’s say you pull up to Target and they assume you need a wheelchair, when in fact you are perfectly capable of walking while pushing a shopping cart to brace yourself with. This is where patience comes in. Take a deep breath and remember that although they know the basics of your disability, they will never know everything. You will have good weeks and bad weeks; your needs will change based on that.

When you remember to understand that they don’t understand, you break the barriers that stand between you and can move forward feeling connected and comforted. This is how we heal together.

Read the original posts at Alexandra’s blog, Limbitless Sunshine.

More Amplitude articles about dating and relationships

The Dating Game: She Said, He Said” (Jan/Feb 2021 issue)
Amputee Relationships: The Partners Speak
Putting Love to the Test” (Mar/Apr 2020 issue)
Fear of Heights
Sex and Intimacy After Amputation” (May/June 2019 issue)
Dating After Limb Loss” (July/August 2018 issue)

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