Rising to the Occasion

I had a bed delivered today and faced that awkward moment again:

I answered the door in my power chair & escorted the men down the hallway, showing them which bedroom to put the new frame, box spring and mattress in. Upon entering my bedroom, I realized a trashcan and my PT wedges would be in their way. I said, “Oh, I’ll get those things. Let me get up.” The two guys looked at me with confusion practically dripping off their facial features and one of them spoke up, “You’re able to walk?” That question, that moment in time when I’ve distorted someone’s perception of me simply by using one of my mobility aids; that feeling of being weird, being an oddity to others because they assume I can’t walk, can’t stand up at all and I’ve fooled them. It is always awkward for me, just as I assume it’s awkward for the other person, who may be feeling some shame or guilt for pre-judging me, making me less able-bodied than I am.

I have a shirt that says, “Don’t Make Me Get Up!” It’s a joke – I often revel in the hilarious, the humorous about my situation. It helps me get by. I sometimes make people uncomfortable with my light-hearted, silly comments (“This is how I roll,” “Walking is SOOOO overrated!!,” “Does this wheelchair make my butt look big?”). I know my prognosis and have accepted it. There’s nothing else I can do. Well, I suppose I could wallow in self-pity or bask in the Why-Me’s? but to what useful purpose?? I’d only be harming myself. For me, I view each movement I make, every step I take with gratitude because I’ve had to learn most of it again when I first got sick and I know I’m slowly losing it all once more with no chance of restoration. My faith keeps me going, whether it be slowly gimping along on my legs or zooming down the street in my power chair with my daughter running beside me. I know that He has a plan for me and He loves me very much – His plan for my life is perfect for me and it is good, too. So, what do I have to fear? Why would I need to stress? What would I gain from feeling sorry for myself?

I know there will be a day when I won’t be able to stand up or walk. I wonder if awkward moments such as the one from this morning will still be a part of my life. Most likely, they will, but for other reasons that I can’t foresee. And that’s okay because today, I grabbed my cane, got out of the chair and moved my own trashcan & wedges. I was happy to do so, simply because I could do so… which completely alleviated the awkwardness!!

Letter To My Chronic Illness

Dear IH,

I need to break things off with you. While I realize that we’ve been together now for 8 years, I’m feeling like the time has come for us to call things off and go our separate ways. You see, the problem is your insistence on dominating nearly every aspect of my life. I can’t allow that any longer.

You demand attention by bullying my body with either headaches, migraines &/or increased cranial pressure during times that I’ve promised my young daughter that we’ll go to the park, the library or attend a birthday party. You beat me into a state of exhaustion in which the bones in my body literally feel too heavy to lift and I cannot move well nor get enough sleep to overcome the veil of fatigue which you have caused, but there’s laundry to be done & put away, meals to be cooked, dishes to be washed, grocery shopping to do, a child to bathe & otherwise help get ready for the day or night. I just can’t go on like this anymore!!!

It’s maddening to be going about my day, feeling wonderful and soaking up all the joy that life has to offer and then BAM! You come along with stiffness, pain, fatigue or a head full of mess and try to ruin everything – not just for me but for my daughter, too, which is unacceptable!

So, you see? I need us to part ways. I understand there’s no cure & treatment is only partially satisfactory, but you’ll just have to leave me alone for now. The doctors say your initials stand for “Intracranial Hypertension” but I know better:

IH really means Insistent Hovering, Impairing Happiness, Inconvenient Hassle, Interrupting Harmony, Interminable Hindrance.

I am not fooled. And I want to break up. So, we’re through. We’re finished. We’re over. Excuse the bluntness of it all, but you’ve certainly not been timid in your approach with me!! I’m sure if you have a response, you’ll let me know by this evening – I’ll probably lay down to sleep and feel your disruptive tingling throughout my limbs, your devious, painful throbbing in my feet and hands. You may even cause my pressure to rise to the point of hearing my heartbeat as my eyes jump to its rhythm.

But, whatever you do, just know that you don’t get to win. You might not be done with me, but I’ve given you the last of my worries, my fears, my pains, my aches, my sleepless nights and bedridden weeks. I’m moving forward with focus on the ones who treat me right, who make me feel good and who show me how much I’m loved.

Take it easy (on me!),

Lylly

 

 

This Puts the “Dis” in My Ability For Sure!

I woke up this morning with a Disability Dilemma!

What do you pick up your picker-upper with??? UGH!! I had to call in the Able-Bodied on this one!

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