Switching It Up: DP Weekly Challenge

A line had developed for early voting, so there were twenty or more people in a staggered line down the hallway at the courthouse.  Emergency people were responding to a medical crisis inside the polling area, so everyone else who was waiting to vote had to stay in the main hall.

I spotted a young woman about half-way back in the line.  She was no ordinary woman as she seemed to have drawn a crowd around her in the line.  She was sitting in one of those motorized wheelchairs with the words Jazzy on the side.

I couldn’t imagine what could be wrong with her that she needed that chair as I watched her almost develop her own following with people who were initially strangers.

Her dark hair kept getting pushed back from her face by her hands as she talked.  I could see her eyes sparkling in the dimly lit hall and she seemed to be talking about something very interesting to the others.   I stood watching her in awe for several minutes.

Her new fans were completely focused on her words and I wondered how she was able to have such social confidence, especially considering she was in a wheelchair.

As a poll volunteer, I am really just supposed to stand at my post at the entrance to the polling area, and hand out information if asked.  I was intrigued by this woman and needed some excuse to go over there to the line.

Considering it made my heart start beating out of my chest.  The sweat began to bead on my forehead.  I am not social.  Thinking about it can make me have a panic attack, but there is something about this woman that makes me want to do it anyway.

I decided to leave my post, and offer her some information about the amendments on the ballot as my excuse.

As I approach her, the crowd around her seems to part noticing that I am there.  I think I might have stopped breathing as I got closer.  She noticed me too and stopped talking when I excused my interruption.  My throat was so dry all the sudden, so my words came out like a sputter—slowly and almost loudly, I spoke, using all my effort just to get them said.

“Would you like…information on, er, uh, the…amendments on…the ballot?”  I finally get out.

She was gracious when she thanked me and turned me down.  She said she had already researched them before coming out to vote.  Of course she had, I thought.  She was even more beautiful up close than she was from afar, and I lingered with the crowd around her for just a moment.  My knees were shaking and I needed a drink of water, so I returned to my post.

 ——————

This week’s Daily Post writing challenge (hosted by the lovely WordPress Dino Rara) asked us to write something from someone else’s perspective.

I was the woman in the wheelchair in real life.  My perception of that man was that he was being patronizing by singling me out from the line of voters—this was my fellow voters’ perception as well.  He spoke slowly and loudly to me as if sitting in a wheelchair meant that I had diminished cognitive capacities.

It was a rather horrible experience for me, but one that I turned into a teaching moment for the folks standing around me.  I shared with them I was living at the local homeless program, about my illness, about stem cell research, about the amendments on the ballot, etc.

They spent the rest of the time looking out for how I was treated through the voting line.  When they were taking walking people ahead of me, they charged right in to right the wrong to make sure I was treated with respect.  I didn’t need them to do that, but they needed to do it.

I like the shift in perspective for this event in my life.  It is certainly an alternative to how I experienced it.  This was the first scenario that popped into my mind when considering this challenge, although there are certainly many others.

 

 

 

Conflicting Tawny’s

There are two opposing Tawny’s in my brain as I think about my hearing tomorrow.  One Tawny is tired of dealing with governmental bureaucracy and wants to throw in the towel.

The other one is a ridiculous pain-in-the-ass cheerleader who is trying to remind me of the fact that I am not a quitter.  She says I at least have to make my best effort, but each time that Tawny wins for just a bit, and the other one gets to work on it, it all becomes exhausting and confusing.

Decisions made by Social Security’s Administrative Law Judges are rarely overturned, so tomorrow’s appearance may well be my final shot at the buzzer.  The problem is that I am ill-prepared because of the other Tawny, who is ready to hold up the pole with the white flag.  In addition, the Social Security Law reads worse than Shakespeare, and I never really enjoyed reading Shakespeare much.

Legal help is hard to find when there is no money at stake.  I don’t want money.  I just want to have continued health care through Medicare to manage my illness.  I do not live by the label disabled, so it is also hard for me to go into such a formal setting to argue that am that label.

It is hard for either Tawny in my head to muster up entitlement, which incidentally is how they categorize people receiving any government-sponsored aid here in the US.  I have been an entitlement.

Because I have had significant medical improvement since I first applied for disability, I am essentially arguing that I continue to meet the criteria for disability under the Shakespearean law.

Even as I am writing one sentence after the other, both Tawny’s are at conflict in my mind.  I want to write a sentence that says, “Who cares?!  Screw ‘em!”  Then the other Tawny says, “You care!!  It will only screw you!”

The tired Tawny wants all of this to end.  The harassing letters from Social Security, the anxiety about going to the mailbox, the forms, the hoops, the sleepless nights…

Cheerleader  Tawny is not about to give up, but even she has had a harder than usual day and wishes to rest instead of making notes about what to say tomorrow to attempt to get a continuance since my circumstances have changed.  The appeal decisions so far have been made with my functioning level with the pump.

I am sure the conflict between my Tawny’s will continue as the evening wears on.  I sure do hope that it is the pain-in-the-ass Cheerleading Tawny who shows up for the hearing tomorrow.

 

 

What does it mean?

I have been asked a few times since my last blog, “What does this decision mean?”

My best answer is simply, “I am not sure exactly.”

My bathroom mirror message.

The truth is, I have no idea what will happen once the intrathecal baclofen pump is removed.  I only have the week I had without it in 2011 as a clue.

While that wasn’t a swell time, I was able to manage.  I could hobble around my own house, use a walker in open spaces for a while and did the wheelchair for distances.

Since my body is in worse shape now than it was in 2011, I have to presume that it might take a bit more of my own physical therapy to be there.

I still have many questions for two of my doctors.  I need to know if we can wean me down on the baclofen dose in the pump leading up to its removal, and I need to know what the plan might be for medication management in absence of the pump’s magical delivery system.

Since I cannot get appointments any time soon to ask these questions, I am going to try my hand at going through nurses and phone messages.  As I know more, I will share more.

In the meantime, I am making preparations.  I finally have my own washer and dryer right here at home.  I have a friend who is going to reinforce my wheelchair ramp out back.  I have to sand and paint my raised potty chair, along with various other little things.

I plan to continue to walk my dogs, but will need to get a power wheelchair or scooter to do so.  There are some logistical things to figure out also since I am not likely going to be able to drive my car.

All of that being said, an opportunity awaits to see how well I can rehabilitate my body once the pump is out.  I am ready!

Book Excerpt–Vulnerability

As promised, here is an edited excerpt from what will be my book!  It is quite challenging to give you the full story in a shortened version…I think enough is included to give you the full picture.  I hope you will share your thoughts!

Once I was approved for wheelchair transport (technically called demand response transportation or DART), I was assigned the same driver to, and from work, nearly every day I was scheduled.  I still lived in Safety Harbor, so I was going from home to work and then from work to home with the same wheelchair transport driver.

Over the course several months, I probably got a little too comfortable with my driver.  On the way home from work, I was always exhausted, vulnerable and probably shared way too much.  He would often challenge me to get out more than just going to work.  I would share how challenging it was to just get to work, but it didn’t matter to him.  He finally talked me into going out to eat with him.  I didn’t realize until a few weeks after I went to eat with him that he was actually hitting on me.  I thought he was just being nice.  I didn’t realize until years later that he had capitalized on the weaknesses within what I shared.

I found him often harsh when he was trying to convince me to do things I simply didn’t have the energy to do, but since I was so overly sensitive about everything, I thought sometimes he had valid points.  Essentially, he was bullying me into hooking up with him. 

He often said things like how much easier it would be to have someone around to keep me company and to do things for me.  I was not at all interested in him romantically and for the longest time, I just thought he was trying to get me to stop thinking about limitations.  Perhaps on some level he was, but he did have an ulterior motive.

I was really too tired to analyze it too much as it was happening.  I didn’t want to presume he had ulterior motives and I had nothing concrete to base that line of thinking on really.  His bullying was often subtle and he often spoke in generalities.  One day, he came to pick me up from work. 

As he was lowering the lift of the van for me to load onto it, he started trying to bully me into doing something with him.  I was tired and was tired of him always trying to wear me down with his bullying.  I blurted out a pretty rigid boundary for him—I was very clear that he and I were never going to happen.  I did this as he was raising the wheelchair lift to get into the van.  As I saw his reaction, I knew it was a mistake.

You see, the driver controls the lift.  You and the chair are on a piece of metal that the driver controls electrically to make it go up and down.  If you are not all the way up or all the way down, you cannot go anywhere in your wheelchair.  Once you are in the van, the driver straps in your wheelchair.  All four wheels of the chair are strapped to a hook on the floor of the van. 

Image from wheelchairliftbest website

He stopped the lift, looked at me with anger boiling in his eyes, and said, “You won’t have much of a choice since I am the one strapping you into this van.”  I said, “Excuse me?!  Lower this lift, I will call and get another ride home from a different driver.”    He said, “What?  You think you can call and report me?  No one is going to believe you.  I am the golden boy of all the drivers.  Besides, you can’t get another driver tonight.  You are at my mercy.” I was really tired and wasn’t going to continue to engage him in this drama, but I also had absolutely no way of getting out of this situation either.  I had experienced various degrees of vulnerability since this illness began, but now I was the most vulnerable I think I had been so far. 

I was on the lift.  I could not get off the lift even if I had needed to, so basically, I was indeed at his mercy. 

This realization sent some serious chills through my body and I needed to try to use the only thing I had to help me in this situation—my brain.  I changed my outward approach to one of quiet resignation.  I let him think he had worn me down, even though I was scrambling my brain trying to come up with some way to defend myself should this continue to escalate.  I dealt with clients in crisis all the time, but this was a little different.

I essentially apologized to him for upsetting him, acted as if I was the one in the wrong, and hoped that approach would work.  Since he felt he had won something (not sure what), he seemed to calm down.  My heart was still racing and I was still sitting at the edge of the inside of the van on the wheelchair lift.  I felt like I would shake out of my skin, but was able to appear calm. 

He said he was not serious about his threats and wanted us to be friends.  I simply said, “Please just take me home, I am really tired.”

It was too late in the day when I got home to talk to a supervisor for the DART drivers, which meant that the same driver would be picking me up the following morning as well.  Once I got into work, assuming that I got home safely on this evening, then I could call and report him.

…This added a completely new dimension to being vulnerable.  I was a sitting duck in that chair and I was struggling with the notion that I was not even safe in the wheelchair transport van.  These drivers literally could do anything they wanted and there wasn’t anything I could do about it.  It had never occurred to me before.

Me with my boys in 2005.

I could not get myself down off a wheelchair lift operated by the wheelchair transport driver.  I had no way of defending myself against this sort of assault at all.  I did not like this feeling.  I had been overpowered only twice in my life, and had learned in my nonviolent crisis intervention courses for work how to never let that happen again. 

…  I had been overpowered only twice in my life, and had learned in my nonviolent crisis intervention courses for work, how to never let that happen again.  But, I didn’t know how to prevent that or stop that from a wheelchair, with legs that didn’t work right and arms that couldn’t even wheel me in a manual chair.

He was right about his supervisors not believing me.  They did not, and I wondered if they even filed the report.  I had a sneaky suspicion that my name was somehow tagged with this information now, but it had to be done.  The consequences of other drivers not liking me was better than the alternative of being at this driver’s mercy for safety. 

The most I could get from the supervisor was to have this driver never be allowed to transport me again.  I was assigned a new driver effective that afternoon to take me home from work.  It took a while to get a regular driver for the trips to work and I spent a lot of time waiting for late drivers.  I never knew if this was by design and was my punishment or not.