Visiting Disability – What is it like to be disabled?

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Living with a disability is more than just learning new coping strategies. Everything changes. Truth is I’ve gained a lot of compassion for those living with a permanent disability or chronic illness through this injury & months of recovery.

Visiting disability is scarier the second time around. I’m concerned I might end up having to stay, and it’s no vacation. I’ve realized how much I took being healthy for granted and how little I’ve truly understood struggling with disability.

I’ve been temporarily disabled for twelve weeks so far. Possibly, I may need further surgery, but someday, I hope to leave my house without a walker, cane, brace, and fear . . . someday, but not today.

As a Christian, I know nothing happens in my life that God cannot use to grow me spiritually, nothing that is without a greater purpose, so I’ve been developing a deeper prayer life and richer compassion for those struggling with chronic illnesses and disabilities. Life is never the same.

So, what is living with a disability like?

Everyday life is challenging. It’s more than just being sick. It’s feeling awful and managing an obstacle course just to get dressed. Things that were never challenging are minefields. Ever try carrying a glass of water while using a walker?

Visiting disability is hard. It's no vacation to live with a disability. Click To Tweet

Quick background – Almost five years ago, I began a downhill journey with my arthritic hips. Three surgeries and two dislocations later, I’m in a brace that prevents me from dislocating my hip, laying flat, sitting up straight, or bending over.

A million activities I took for granted are impossible or difficult for me now. While I’m grateful to be alive and for all I can do, sometimes I just want to cry when something simple is now a three-step process, when changing positions in bed wears me out, when my brace wore holes in my favorite sheets, when I can’t sit up over the table to eat.

Disability steals independence.

Asking for help is constant. Most of my normal activities are beyond my ability. I can’t reach anything lower than my knees, and can’t clean house or vacuum the floor. While I’ve learned to admit my needs and accept help, the longer this goes on, the harder it is to be dependent on others. At some point, people need to go back to their own lives and often can’t focus on doing things for an injured or disabled friend.

If I lived alone, this would be devastating.

I can’t drive. I miss being able to hop in the car, have lunch with a friend, or attend church. So far, even quick errands are out of the question. I have to rely on my husband for all the shopping. And do my best to not complain when he buys the wrong orange juice.

Thank heavens for Amazon Prime for everything else.

I am stuck at home, but can’t be left alone for more than a few hours. Everything must be within grabbers reach so I’m not risking a dislocation getting up and down too often. Thank goodness my daughter is homeschooled and wonderfully helpful.

It’s not just physical.

I thought that a few weeks of couch time would be restful. I could read a few books, catch up on blogging, maybe start writing the book I keep talking about. But I didn’t expect the brain fog.

Constantly being physically tired means my mind is overwhelmed. I struggle to find words and can’t always communicate clearly, which is extra stressful when asking someone to care for you.

Raw emotions and depression hover around my heart. I still have hope that I’ll be able to be mostly functional again, but after five years, I know that long-term, I’m likely facing disability at some point. I’m scared and sad. Life has changed forever, and I’m not quite sure how to find joy here.

Again, as a Christian, God has me, this isn’t wasted and I’m using every second to try to understand His will for my life, for me as a mother and wife. But I fight back fear and sadness often. I have scriptures to remind me not to be afraid, but my human nature wants to dive into self-pity.

Hygiene is hard.

Showering is tiring and slightly terrifying. I can’t wear the brace that’s holding my leg in place. I mentally hold my breath until it is back on, simultaneously enjoying the freedom to move and fearing injury. I’ve never showered so quickly in my life.

The pain and discomfort of dislocating my hip is horrifying enough, but the idea of doing it naked is too much. While I can laugh about it, there is an element of trauma to thinking about going through a third dislocation.

So if I’ve showered and made an attempt at looking presentable, it took most of my energy for the day. I hate being embarrassed about how I look all the time, but I can’t do it more than a few times a week. Dry shampoo is my new best friend.

But, I’ve had to give up a lot of privacy, pride, and vanity.

I can’t shave my legs. My husband has to trim my toenails, so forget painting them. I can’t even wash my feet or put lotion below my knees. While I have some devices that help, they don’t replace actual function.

Devices and aides help with disabilities, but nothing replaces natural function. Read more Click To Tweet

The sock puller was too hard and time consuming. After laying on the bed crying and exhausted with a sock hanging nicely off one toe, I gave up wearing socks.

I’ve had to accept being embarrassed.

Peeing on the floor because my raised toilet wasn’t aligned properly or because I have to sit at a bizarre angle is still embarrassing, but at some point, you have to accept this new normal.

In fact, just working around using the bathroom takes up a large portion of my day. Standing up is risky and painful, so I tend to wait as long as possible. Working around the brace is time-consuming and difficult.

Trying to preserve my dignity is a losing proposition.

Leaving the house means planning around my restroom needs. I need a raised seat with close support bars. I can’t guarantee that even a handicapped stall will be truly accessible for me. I don’t want to dislocate my hip because I had to pee.

Not having access to my own toilet and risking embarrassment over it is emotional. I don’t want to have an accident. I feel old before my time and reduced to being a child.

Disability affects everything, including my marriage and family.

My marriage dynamic has changed. It’s hard to feel attractive and sexy after asking my husband to wipe up my pee. We both struggle to deal with my physical limitations as a woman and wife.

He is working full-time and doing 90% of the housework. But instead of his partner, I’ve been reduced to someone whose every need is on his shoulders. This disability has become a third (very unwelcome) member of our marriage.

A disability has become a third, very unwelcome, member of our marriage. Click To Tweet

In some ways, we’ve grown closer because I see how much he loves me, his gentleness, the quiet way he helps me function, how he works 12 hours and still cooks, cleans and physically cares for me. But over time, I feel like a burden.

He struggles seeing me in pain. I get frustrated when I can’t do things for myself. He feels guilty having any life outside of our family when I can’t leave the house and that he sometimes gets angry at the situation because my limitations limit him too.

Being a mother struggling with disability reverses roles. Having to ask your six year old to put your socks on for you is emotional. We all expect our children will to some degree care for us at some point, but the emotional weight of watching my six year old learn to navigate my (temporary?) disability at 45 is heavy. I should be getting to play tag with her, teach her to run, ride bikes, play hopscotch.

I shouldn't be asking her to help with my socks - I should be playing hopscotch.

When my child often sees me in desperate pain, it changes her. Every time I say OW!, she rushes into the room wild-eyed, asking if I need an ambulance again. It breaks my heart to see her fear, and yet my need has pushed her to be more independent and mature.

These are just a few of the ways I’ve realized living with a disability is more than just learning a few new coping strategies. It really changes everything. I’ve grown to have such compassion for people facing life altering medical crises or disabilities, to truly see the need for people to just show up during a time of difficulty.

I don’t know if I’m going to heal, be headed for more surgery, or have a permanent disability. Some of my EDS friends suggested that Ehlers Danlos might explain many of my symptoms. I may seek genetic testing for such a connective tissue disorder, which means I’m also dealing with a potential frightening diagnosis. So, I don’t know if I’m in the homestretch or just getting started.

I do know that I believe nothing happens in my life without purpose. For today, I’m resting in that – with my feet up and my grabbers handy.

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