I have Secondary Progressive Multiple Sclerosis and for me every day can be a challenge. The disease has progressed so badly that I can no longer walk or use my hands so I need help every day with daily activities, so I can survive and live life. Everything from eating, dressing, and even using a Hoyer lift to lift me up out of my bed into my power chair so I have mobility. Some independence.
Living like this and getting all of this help can be frustrating and demoralizing. I've had to learn to be very patient and accept all the help. Sometimes it drives me crazy that I cannot help myself do all the daily activities that I used to be able to do. I don't let these frustrations control me or stop me from living my life. I find myself getting up every day with help from home nurses so can live every day the best way I can.
However even when I get up things don't always go as planned and I have to improvise to make things work. Even the simplest of tasks like paying a phone bill can be a challenge. Let me tell you a story of a day that one of my only tasks was to pay the phone bill.
My story begins after getting Hoyer lifted into my power chair with help from Susan. Then, we had to get everything perfectly straightened out on my headset that sits above my head. Since I cannot use my hands to drive my power chair, I have to use the headset with my head to drive myself around by using various sensors. My headset is complicated but once we're finished, I can finally get out and pay my damn phone bill.
I left my apartment in Capitol Hill on 12th and started heading towards Pine by the police station at the corner. It was a beautiful sunny day with clear skies, and I was glad I got outside. When I got to Pine, I crossed over 12th, but the street was bumpy and when I went up on the yellow curb cut my headset suddenly dropped down. Now I couldn't hit the back of the headset making it impossible for me to move forward.
I was completely stuck now sitting next to a tree on the sidewalk and there was nothing I could do. Normally, I would call someone in this situation to rescue me, but my phone was shut off. Oh shit. I was going to have to ask somebody to help me fix my headset.
I looked around and couldn't see anybody nearby except for a police officer in an undercover dark blue Crown Royal Cruiser that was parked in front of me. He got out of his car and was wearing an SPD navy blue polo shirt and had the perfect policeman bushy brown mustache. He opened up the trunk and pulled out five dry-cleaned police uniforms. I tried to get his attention and said, "Excuse me officer", but my words were faint and he didn't hear me as I watched him run across the street to drop the uniforms off at the Precinct. Opportunity lost.
I sat there next to the tree on the sidewalk as people walked by. I tried to get their attention by telling people I needed help, but everyone just nodded their head to greet me or completely ignored me. There were people listening to their headphones or looking at their phones and I couldn't get anyone's attention. I was screwed stuck eight blocks away from the phone company.
After about thirty minutes, I saw the police officer that dropped off the uniforms crossing back over Pine back to his car. This time I was a little more vocal.
"Excuse me officer! Can you help me!?"
"What's going on?" he asked.
"I'm in a little bit of the pickle. My headset fell down and I was wondering if you could help me fix it?"
He agreed and I gave him instructions on what to do. He lifted the back of the headset and made sure everything was back into place so I could drive.
"I think that's good officer. Thanks for all the help!"
He got back into his cruiser and drove off. I was saved by the mustachio Officer! I can finally head to the phone company so I could pay the goddamn phone bill.
I headed back down Pine toward Broadway, the street the phone company was on. For a few blocks my headset was holding up until I reached Broadway. Suddenly I hit a big giant crack in the sidewalk and again my headset fell down. Dammit! I was stuck right in front of Blick Art Supply in front of the rusted bronze Jimmy Hendricks statue. I was going to have to ask for more help.
There wasn't anybody coming out of the store so again I just patiently waited for someone to come by to ask for help. I heard a woman's voice behind me say something to me.
"Beautiful day outside. This is a nice place to sit in the sun."
I turn my head and I saw a stunning redhead with her hair in a ponytail wearing multi-colored yoga pants and a black sports bra. She had her camera out and was taking pictures of the Jimi Hendrix statue.
"Yes! It's a beautiful day and I love this statue. It reminds me of the old rock days," I responded to her.
She smiled and said, "He's a Seattle icon!"
At this point, I couldn't believe that this gorgeous woman was even talking to me. This was my window of opportunity to get some help. I looked at her with puppy dog eyes and asked her politely, "I was wondering if you could help me out. My headset fell down and I'm having trouble driving. Could you help me fix it?"
She raised her arms up and said in a concerned voice, "Oh my goodness! I didn't know this is why you were sitting here. No problem. What can I do?"
She jumped on the opportunity and was eager to help. I gave her instructions on what to do and trained her how to reposition my headset so I could drive again. She double checked to make sure everything was all right until I drove off again ready to pay the fucking phone bill.
I kept driving down Broadway until I got to the phone company. Thankfully, nothing else went wrong and I finally made it! Success! Nothing was going to stop me from paying my phone bill. This was truly a small victory.
So, why the hell did I want to tell you a story about paying a phone bill? Because I wanted you to go through some challenges I may go through every day. I have to accept all the extra help I need throughout the day. Accepting is tough but that is what I need to do to continue enjoying life. I may struggle dealing with my MS at times but that doesn't mean I'm going to give up on life. Even if it's just a simple task like paying my damn phone bill.
Hey, I even got to meet and got help from a beautiful woman. Who knows what tomorrow will bring?
Author: John Mistur
