Turn on the House Lights!

Well, I skipped a day out of necessity because I knew what I had to write about would occur last night.  And today, I feel like I’ve been run over by a truck.  You know that incredibly tired feeling you have after traveling, when your body is so sore and your legs refuse to move?  That’s what happens to me every time I leave my home for a few hours and engage in an activity.  Even though I prep myself by making sure I have my neck pillow, knowing I have my medications with me, and doing the leg work to know I will have places to lean my head wherever it is I am going, the activity is never going to occur without some degree of pain.  Last night I thought I had  one more positive thing going for me.

Swimming!  I was going to visit a friend who was staying downtown, and I asked if I could use the pool at his hotel before going “out on the town”.  Swimming is the only exercise I can still do, and it’s great because it gives me those precious and rare moments when my head and neck are buoyant.  If I could float on my back in salt water all the time, I would do it.  The Dead Sea around the clock would do me wonders!   Unfortunately, at this particular hotel, the water was way too cold and would’ve done me more harm than good.

By the time I got to the hotel, I had already spent an hour preparing to get downtown on the bus. Since I can drive a few minutes without a lot of pain, I drove three blocks to park my car so I could walk across the street to take the city bus.  This has to be timed just right because the bus comes at 6:14, and there are no benches at the bus stop.  Plus, it’s a very busy street, and I can’t just run from my car as soon as I see the bus coming.  I wish something that should be as simple as taking a bus really was easier to do.  So like most things nowadays, timing is everything!

In fact, I bet most people who take public transportation are more concerned about the behavior of the other passengers on the bus.  In my case, I scour the bus for a seat by the window so I can lean my head against the side of the bus.  This was a crowded one, and I had to settle for sitting in the disability section.  However, I have yet to figure out how the disability area is set up differently to support those of us with disabilities. After listening to the laughter of the kids across from me and watching people come and go, I finally made it to my destination at 6:52.

After testing the pool out and discovering it wasn’t an option, my friend and I engaged in conversation and resorted, at times, to watching a really bad HBO movie.  It didn’t matter.  I was excited about the surprise I had in store for him.  You see, he was my boyfriend in college, and I remembered the music he loved to listen to.  Echo and the Bunnymen was one of those bands.  Since they were scheduled to play at First Ave. last night, I had called up another friend who owns the sound company at the venue and asked him to put us on the guest list.  After a couple hours (timing it just right so I wouldn’t have to stand in the nightclub without any support for my head), he drove us downtown, still not knowing what the surprise was.  As we walked down 7th Street, a poster appeared, advertising Echo and the Bunnymen’s concert for that evening.  “You’re good at giving excellent surprises!” he smiled.  And I knew this would be worth the pain that would reveal itself the next day (Yep!  That’s today.) as a result of all the pieces of the puzzle that I tried so hard to fit together.

Because I am friends with the sound engineer, I usually get to sit on a stool next to him by the sound board or lean on the equipment to hold my head up.  Last night, it was the latter.  It was so fun to see Lee for the first time in 5 months, and I knew my companion was having a great time reliving his youth.  And, thanks to the band for having such short songs, it was an awesome night of music with the tolerable length of 75 minutes at a Standing Room Only show.  Every part of our experience at the show was a blessing!

On this night, two things really struck me!  First, the band requested the omission of house lights during the show.  This meant that you couldn’t see the band, except for their shadows and skeletal frames when the back lights shone down on them.  When I asked Lee why they didn’t want house lights, he joked, “They probably don’t want anyone to see how old they look now.”  For whatever the reason, they didn’t want to be seen.  They wanted to blend in and be invisible.  If I had just wanted to listen to a band, I could’ve stayed in the comfort of my own home where I could recline in my rocking chair with my neck pillow, being somewhat comfortable.

While this band of six who get paid to perform were demanding not to be seen, I thought about my own plight and how I want to be seen.  If it takes visible pain for someone to understand what chronic pain is like, then I want to be able to show them that.  This invisible pain screams out for others to understand that putting one shoe on and then the other is an arduous task.  “Turn the house lights on so others can see how challenging an ordinary task can be!  Please!  See me!  This isn’t easy for any of us with chronic pain!”  Going out on the town requires the same kind of energy most people would need to pack for a trip or actually go on that vacation.  And while I’m shouting to demand increased awareness from the population at large, the band in front of me didn’t want to be seen at all.  I just don’t get it.

The third song of their set was a cover of “People Are Strange.”  So appropos for a number of reasons!

“No one remembers your name, when you’re strange” was the lyric that holds a very powerful meaning for me.  I wouldn’t call myself strange, but when you live in the world of chronic pain, you aren’t like everyone else.  And in my case, I have found that there are some family members and friends who knew me before I was diagnosed four years ago who don’t seem to “remember my name”.  At first, people were offering to give me rides different places, and I appreciated that.  After a few months, though, the help began to dwindle.  Even my own boyfriend at the time didn’t offer to take time off of work to give me rides to my doctors’ appointments.  And we’d been seeing each other for five years.  Was I a stranger in the home we shared together?  How could he not remember my name?  And he isn’t the only one!

Over the years, it has been a process of identifying which friends and family members do remember my name.  Yes, I understand we are all busy.  We all face different challenges.  However, I need support in my life that I can count on at any time, not solely when the other person just happens to think of me.  This doesn’t mean having to spend a lot of time together in a physical sense, but finding those who know that the best place for me to be able to communicate with them is at my house:  visits, Skype, telephone…They understand that even though my new life may be “strange” to them, they will still choose to support me and be empathetic because I need to set boundaries.  Only I know my limitations.  To know that meeting halfway is actually me putting forth 100% of my energy and pain, compared to the 50% the other person is expending.

Of course, you also find blessings in finding new connections when “people come out of the rain” and ask you how you’re doing.  I’ll write more about this at a later time, but suffice it to say that relationships change when you are diagnosed with a disability that is incurable.  Perhaps, that happens with all diseases, but I can only write about what I know.  I want the people who remember my name to be by my side, through the good times and the bad, and finding who they are is all a part of this process of change.

Hope:  My hope is that people I’ve known B.D. (Before Dystonia) will reach out and remember my name.  And if they don’t, I plan to keep an open heart.  In this way, I can attract new people into my life who can be just as supportive to me as I am to them.


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