Hanging Upside Down In My Wheelchair

Life of a follower of Jesus, part-time wheelchair user, professional and lover of cheese.

[amethystlouise]

Having Purpose.

Post #5.

I get one question a lot working in the field with people with disabilities. Sometimes from my own clients, sometimes from those on the outside.

Do people with disabilities have purpose?

The short answer is yes.

Hanging upside down in a wheelchair years ago, I started the journey of trying to find my calling as a person with a disability. For the longest time, I swore if I couldn't do something the typical way, I just wouldn't do it. I had a set mission to do everything I could to hide that I had a disability.

But what if God said to do the exact opposite?

Yes, you read that right, God is calling me to be transparent.

Sometimes, I think we think our purpose has to be great big. But, transparency should show Jesus if we are following Him.

Transparency is the key in this journey, friends.

Disability isn't pretty, but life isn't always either.

There will be more on transparency later, and why I still choose to follow Jesus. But for now...

Thrive readers.

[amethystlouise]

Out of Order.

Post #4.

I haven’t posted for a few days, to take time on myself. But this post, woke me up at 2am. And I felt God saying, post it. So out of order or whatever we go, and time for seriousness.

Here’s something I bluntly feel needs to be said. Again, out of order, but here we go. People with disabilities are people. We have lives, relationships, marriages, professions, children, dreams... all the things. During this pandemic, I like many, have been hidden behind computer screens and closed doors in order to quarentine and social distance.

Recently, venturing out to the store, I ran into one of you, my readers. Who immediately looked at me, surprised, eyes beaming and says, ” I know that look, I’ve got many of my own. Congratulations, even though it’s early.”

“You can tell?”, I ask.

“You can if you know what you’re looking at.”

Even then she had no idea what she was looking at. Right now, in this season of life, I’m hanging upside down in my wheelchair, because I’m grieving.

I’m grieving the loss of a future marriage with someone I loved. Our relationship was silent, because he too, is disabled. And even more heartbreaking, I’m grieving the loss of a baby. Yes, it was a baby who was unplanned. And for lack of a better phrase, a lack of judgement on our parts on readiness, and our faith. It’s my second miscarriage, the first conceived in rape, with another guy. Another story for another post or a few. No, our families weren’t told. In fact, they have no idea we were together. We hadn't gotten there yet, as both of us are very quiet and independent people. But we did feel in grief, others needed to know, as readers the transparency of real life disability and love. We didn’t feel comfortable sharing it in person, but we believe written word is more powerful sometimes, anyway.

But all this to say, we have sex, we have jobs, we have relationships, we have successes and make mistakes and we have lives. In all my grief, today and every day, my heart cries...people with disabilities are people.

Until the next post, thrive, readers.

[amethystlouise]

Hanging Upside Down.

Post #3

It’s been a long day. But, let’s dive into story time. So you know how I fell over and was trapped upside down, but how did I escape? I remember, dangling upside down muttering cuss words and phrases like:

“I don’t have time for this. “

“Nothing better be broken.”

“ADA compliant, my ass.”

“To hell with this chair. I’m not living this life.”

You see, the wheelchair wasn’t even mine. It was a loaner I was testing. I had silently been talking to the doctor about more aches and pains and decreased energy, which is when he recommended supplementing walking with the wheelchair. I was in college (undergrad) at the time and I wasn’t having it. And I didn’t go back to a wheelchair until years after that tip over, but it eventually did happen. Again, another post for another time.

But as I’m dangling in an empty parking lot, I cry out to Jesus in anger:

“What did I ever do to deserve this? Why do You hate me? If You loved me like You say You do, You’d heal me.”

Spoiler alert: He hasn’t healed my physical body, at the moment. But He has promised to. And the more you follow my story, hopefully, you’ll see how true His promises are.

I struggle to pull myself up to pull the straps apart, which are securing my legs. But I know once I do, I will slam my head against concrete. Or so I think. Somehow I managed to not hit my head on the way down. So I close my eyes, and right before I pull the last strap, I hear...

“It is you, that must prove your faithfulness, not I.”

I pull the last strap, and to my amazement, my head has remained upright, in a sit-up position. I gently lay my head back on the ground, and swing my legs to the side, rolling over the tire.

I’m free.

I get myself and the wheelchair back upright. To which I look up and say,

“If You promise to lead the way, I’ll follow You. I’ll let You use my disability, if that calling brings one more person to You, besides me. But only then. “

That one moment was the starting point to the shaping of the woman, disability activist, writer and ministry leader you know. That’s only the start, though.

On a side note, when I got my phone in my hands, I realize my then significant other texted me. "Making dinner...requests?"

I reply..."wine."

"Rough time in front of the mic?"

"No. I swear, I just learned how to fly and lived to tell the tale. Congrats. You're spending the rest of your life with freaking superwoman."

"Superwoman, or humpty dumpty? I need to know what color tie for the wedding."😂

For now, thrive.

[amethystlouise]

My Diagnosis.

Post #2

So, why do I use a wheelchair part-time? My diagnosis is spastic diplagia cerebral palsy. I also have a severe, potentially life threatening, rare form of asthma.

CP is a form of paralysis caused by lack of oxygen to the brain shortly after, or during the birth process. It's most common in premature babies. Different parts of the brain can be affected, causing delay in multiple parts of the body- potentially mental and physical. Mine is only physical, with my two legs being the body parts most affected. Although, my whole body is affected. Spastic means that due to the paralysis, some of my muscles are tighter than they should be. There are four types of CP that encompass different symptoms: diskinetic, ataxic, spastic and mixed.

CP can cause many symptoms such as: abnormal gait (the stance a person uses when they stand/walk),siezures, muscle spasm, muscle pain, stiffness, speech difficulty, balance/coordination issues, swallowing difficulty, incontinence, mobility issues, muscle weakness, and cognitive delay. Symptoms vary in degree and intensity from person to person. My case of CP is considered mild.

No two cases of CP are identical, and the above list is not fully inclusive. Most of us don't have all those symptoms either- I don't. CP is also not progressive or degenerative. A person's condition, however, will become more difficult as the aging process continues throughout life. Feel free to learn more on your own.

Probably doesn't sound pleasant. And honestly, it's not. BUT, it is a tool I use all the time to reach others for the sake of the Gospel. Suffering, even in its most intense forms, has purpose.

And it's that suffering that has brought me right to the cross and Jesus. Do I believe God created me this way? No.

But why? How do I trust God in such devastating circumstances? How can I trust someone I can't see or touch, hanging upside down in my wheelchair?

That's for another post. Until then, thrive, readers.

[amethystlouise]

Laughing Through Panic.

Post #1

If you're reading this, then I have invited you to join me in my journey. Some of you barely know me, others have known me all my life. And some of you are somewhere in between. Whether this is your first invitation, a re-invitation, or a way for you to more consistently follow my story, I have several goals through this blog. I hope it brings you perspective on the challenges of living with a disability both in every day life and professionally. But most of all, I hope it reminds you to laugh endlessly, and that you would see more of Jesus along the way.

This first blog, I am going to talk about the title that I chose for my blog and future book: Hanging Upside Down in my Wheelchair. Yes, this title comes from a story. Some of you are perplexed, some of you don't know whether you want to scroll down further, and those of you that really know me have coffee coming out your nose because you know the story I'm about to tell. I see all of you.

Later on in the bIog, I will explain more about my medical diagnosis. But for this story all you need to know is I am a person with a physical disability, that uses a  manual wheelchair part time. 

The story begins after leaving a speaking engagement years ago.  I was weaving through a parking lot getting to my vehicle, that I drove to the event. All handicapped spots were taken, so I had to weave up and down many ramps to get to my parking spot. The last ramp I had to cross, the payment wasn’t completely level. It was about 1/2 inch off the ground. So my front wheels caught on the bump, and I tipped backwards. My legs are strapped to the footrests, and my phone flew out of my pocket. I’m upside down and stuck. 

So, I look around. I see no in one sight. The one time I fall and no one sees. I eventually break myself free. But dangling there, I realize one thing. Humor is best. And I could let my disability entrap me, or I can choose to embrace it and laugh. I won’t tell the full story of my escape now. Yes, I’m the jerk that just sucked you in and left you hanging until another post. But know, hanging upside down in my wheelchair is exactly where I found the calling on my life.

Until next time...thrive.