“Mom, what’s going on?”
One of my younger sons looked up at me. We had packed up to leave the beach, then stopped.
My oldest son and I were whispering, trying to figure out our next step.
“You know that little boy that bothers mommy?”
He shook his head. I squatted down to look him in the eyes.
“Well, it’s not his fault. We aren’t going to point at him or do anything to make him feel bad, but he’s up there on the boardwalk. We are trying to figure out if we need to go another way back to the hotel because if mommy walks past him, my legs might go.”
I texted my husband.
“They aren’t leaving. They’re hanging out on the board walk. I think I need to walk up the beach to the other boardwalk and walk back down.”
“I can come pick you up in the truck,” he replied.
Just as we were about to turn and leave, the family descended the walk.
This family had been at our hotel all week.
Their little boy in his red wheelchair was probably 8 or 9. He seemed to be small for his age, although I couldn’t get close. He had dark hair and pale skin. And none of this was his fault.
I had to avoid him daily. Not just him, his mom, dad and little sister. If I got too close (close being a relative term since 100 yards could affect me if the wind was blowing in my direction), it felt that my legs would go. I recognized the feeling and I’ve learned to believe it. If he was at the beach, I went to another section of the beach, or the hot tub.
If he was at the pool, beach it was.
As they reached the end of the wheelchair ramp and the father lifted his son’s chair (Hurricane Ian had seen to the fact that there was less sand under the ramp and, therefore, a gap), my oldest son looked at me.
"Ok Mom. Go quickly. Don’t worry about us. I have the stuff. Just go.”
I walked as briskly as possible. As I neared the walk, my vision blurred.
“Just keep going. Do not pass out,” I lectured myself.
I scaled the stairs quickly and impressively considering that this would have had me on the ground just months ago. My oldest son caught up and passed me. As we got further away, it hit me harder.
“Hey bud.”
He turned around to look. I stopped and pointed at my legs. People were walking by me but I didn’t want to be obvious. I recalculated in my brain, willing my legs to just keep going.
He came and I put my arm around his shoulders. Still walking normally but he was there.
Just in case.
We quickly came in and I took a shower. Relief. My legs stopped shaking.
I have thought about getting a service dog at times and this is one of the reasons why. A dog with a brace on his back to help stabilize me during a hard hit appeals to me.
For now, I stay close at all times to either my husband or teenage son.
Unfortunately I did have a few run ins with this family over a few days. It took a toll on me, but I will work hard to reclaim it and gain even further ground.
I praised the Lord when my husband saw them packing up this morning.
I know how strange this all sounds. But yes, some areas, and even some people can cause me to lose the ability to walk, pass out, and even go into convulsions.
“I don’t understand your illness,” a relative recently said in an email to me.
A hint of accusation dripped from the words.
But the fact is, that I don’t perfectly understand it either.
I doubt, however, that most people can explain exactly what is happening in their body when they have Parkinson’s disease, or Multiple Sclerosis, diseases that I have both been cleared of but have some similarities to. My last doctor, a man far more intelligent than I, for all his tests and scans could only offer suggestions at what he was suspected was happening.
It doesn’t matter that I can not explain it.
I can navigate it.
I can build health. I can learn how to live around this illness so that I can be a wife and mother.
So that I can be alive.
In the past week, I have walked over 30 miles. This is an enormous accomplishment considering that, at times, I didn’t look much different than the curled up boy in the wheelchair.
And so I move forward. One step. One mile at a time.
And I will continue to be “weird.”
I am so glad your body has learned to be able to relax again since you have started this journey and that you are able to identify sources and avoid them to help. Its a constant state of panic when your body isn't able to at least identify the sources. People don't believe me when I say my legs go when I go in my kitchen. They think I am exaggerating because they aren't here and witnessing it daily. I'm glad there is someone who understands.