I know people mean well. I understand they are being nice. It doesn’t usually offend me. But strangers often say comments to me such as…
”It must be nice to sit while you shop.”
”I wish I had one of those!”
”You are such a good driver.”
”Do you have a license to drive that thing?”
”Don’t run me over.”
I love talking to people and understand that their intentions are good so it doesn’t bother me to hear these comments.
And I must say… it is nice to sit while I shop; my chair is super cool and fun to drive; I am a dang good driver (although a few walls at home say otherwise); I do not have a license but I have 26 years of experience; and I only run over people when they annoy me but I make it look accidental!
These comments, however, do make me want to show people that there is much more to being paralyzed than just sitting. That is the easy part of my disability. But people don’t see the daily struggles and challenges beyond the visual of seeing me sitting.
One of the daily challenges I face are spasticity and non stop muscle spasms! And by non-stop, I mean NON-STOP! Sometimes they are less than one second apart. Spasms are involuntary movements that include muscle tightness, joint stiffness and jerky movements of my legs. If you stabbed me with a knife in my legs, I would not feel it but I feel every second of the spasms. They hurt like heck so I am in pain almost every moment of my life. My legs get so tight and stiff that the strongest of men cannot pull them straight. I take medication to try to control them but honestly, they do not always help. I have tried to have nerve blockers put in, cutting my nerves and even Botox shots but nothing has helped.
My spasms have caused several crazy situations (and feel free to laugh because they are pretty absurd). But I’ve caught my toes on fire from a spasm causing my feet to get stuck between the oven and broiler doors, causing third degree burns. I smelled burning flesh which is how I discovered that they were burning.
I have broken limbs, including an ankle on Christmas Eve. That time I waited 3 days to go to the hospital because I didn’t want to miss the Christmas festivities plus let’s be real… it’s not like I use it so what was the hurry?
I have fallen out of my chair multiple times from a strong spasm, once in the middle of a street and a car saw me and instead of stopping to help, they just drove around me! I also run over my own leg frequently when I do not realize that I have had a spasm and my leg has moved off of my leg rest. There are so many wacky moments but spasticity is one of my biggest frustrations!
Another issue is constant urinary tract infections. I have to use a catheter several times per day plus I have a bladder that was reconstructed from part of my intestines, (Weird, I know!) which both contribute to frequent infections. I don’t have the typical symptoms but instead have increased spasticity, pain in my back, vomiting and extreme fatigue. I try not to call the doctor at every symptom or I would be on antibiotics constantly. But chances are I have an infection brewing in my system.
For the faint at heart, skip this next paragraph, but since I am paralyzed some of my organs do not work correctly. Bathroom issues arise to be totally blunt. I will not get into details but everyone has had a bathroom emergency in their lifetime. Now imagine not knowing there is an emergency because you can’t feel it coming or happening. Enough said… but it is literally a “pain in my butt” to deal with!
Sores and wounds are another constant issue. My skin breaks down easily so I have to be careful or I will have a wound that takes a long time to heal. Once I had a sore on my leg for about 5 years that I could not get healed. I often lose my shoes because they just fall off my feet and that causes a lot of sores on my toes, heals and ankles. Last year I lost five right shoes (never my left shoe which is odd) that I never did find when I was out and about. When I get a deep wound or one that won’t heal, I need to go to a wound center for treatment which often requires appointments a few times per week.
Since my brain and lower extremities do not communicate, I need to remember to move myself so that I do not get sores. This includes turning every two hours throughout the night. And it’s not just rolling over. I have to pull myself up to a sitting position, manually move my body and adjust pillows so there isn’t anything able to rub against my skin. Lack of sleep is another ongoing struggle.
Besides the physical problems, everyone who knows me knows that the issues with my van and wheelchair cause me a plethora of additional stressors. There are way too many stories to share but a few include… my van lift having an electrical fire when I was alone with my 2 year old; the door to my ramp unable to open leaving me trapped inside the van for several hours; my wheelchair tire popping so loudly in the mall that security thought it was a gunshot; and a personal favorite is when my chair just stopped after my shower leaving me naked, stranded and panicked because I was not going to call anyone for help when I was not wearing clothing!
There are more challenges and more stories I could share, but I really just wanted to say that sometimes we see the outside of people but have no idea of what is really going on in their lives.
It is natural to glance at people and make assumptions or judgements (I admit, I do it all the time), but we never know what that person is struggling with or the pain they are having or the fears they have. So to quote Rafiki from Lion King, “Look beyond what you see.”
I believe the best way to do this is to try to look at people as Jesus would see them… using lenses of His love. If we begin to look at people with the love of Jesus, we will start to see past the superficial outward appearance and begin to see their heart!
Look deeper! Go love someone today! ❤️