Extraordinary Living

As I wrote in my last post, I know that everyone has busy lives with challenges and joys they experience every day.  In fact, for 39 years, I was one of those people.  The difference now is that I am still one of those people, but I have the additional layers of chronic pain complicating my life.  This is very difficult for someone who hasn’t experienced chronic pain (CP) to understand.  Our challenges, daily responsibilities and joys still exist.  However, the addition of CP makes every one of those things so much harder.  That’s why this website is called Chronic Hope.  Because I want to acknowledge the joys and blessings that exist, amidst all of the pain.

What are those layers CP adds to everything else?  First, I have learned that I have to become the CEO of my life, as Kris Carr stated in her interview about her battle with cancer.  My needs must always come first, because if I can’t meet my needs then I can’t meet anyone else’s.  So when I wake up in the morning, like I did today, I had to decide if my body was capable of going to my class this afternoon.  I love this class and hate the idea of not going.  However, I can hardly walk, and my neck and back are experiencing piercing pains.  So I decided I couldn’t and wouldn’t go, but I would stay home and write during the time I would normally be writing in class.  People who don’t have chronic pain or a debilitating illness don’t have to think about how something as ordinary as going to a class could affect them physically.  How do I know this?  Because I was that person most of my life!

Second, the stress of all the challenges and daily responsibilities we all experience makes my pain even worse.  The effect of the normalcy we all eperience every day is that it limits even more of what I can do when I have to deal with this stress.  My body absorbs it, and fights back each moment of the day.  Yesterday, I had a hands-on healing energy session, and the healer asked me, “Are you one of those people who brace yourself when you know something is about to happen?”  I told him I’m proactive and get everything I need to take with me to help my body if I know I am going to experience more pain.  The perfect example is being in the car.  I need to make sure I have my neck pillow, my icepack, my medications, and as the passenger, the seat needs to be able to recline.  He told me that I was essentially bracing myself for the pain.  In fact, by being proactive I was actually increasing the pain because I was telling my body that more pain was on its way.  “How do I prevent that?” I asked.  He responded by saying I need to remain calm while getting these necessities ready:  to take deep breaths, put on some relaxing music, think of calming colors and peaceful thoughts…Up until then I hadn’t realized I was tripling the pain by being proactive in the way in which I was doing it.  My intention was to avoid the tripling of pain that occurs when I get into a car; I was seeking to have the necessary items ready to go that will “only” double the pain.  Of course, the items themselves don’t cause the pain; it’s the act of being in the car, in this particular case.  Again, this isn’t something most people have to consider as they prepare to do their routine activities throughout each and every day.

The third layer is deciding if I will be able to leave the house at all.  Will I be able to sit with my head againt the wall or a booth at a restaurant?  If invited to a party, will there be a couch where I can lean back and be “comfortable” when I’m talking to others?  What role can I play with my friend who was just diagnoed with breast cancer, since I am unable to give her rides anywhere?  Can I volunteer for an event, depending on its location?    Not only can I get a ride to the location, but will I have access to a high-backed chair that leans back so that I can stay there for more than 10 minutes?  How can I possibly visit a friend who gave birth to a sweet girl in April whom I’ve been yearning to see again?  When I can’t drive, take Metro Mobility or the bus (more on those two entities at a later time), or get a ride from someone, it is impossible for me to travel to them.  Additional stress does accompany all of these questions and more.  A recent example?  I may have to go through a list of restaurants to determine if they have the accomodations necessary for my disability.  And these are just a few of the many considerations I have to make regarding challenges and daily activities.

Last night, I went to see an amazing band down at First Ave.  They’re called Lake Street Dive, and I’ve been looking forward to seeing them for months.  Since one of my friends owns the sound company down there, he always lets me into the area where the soundboard is so that I can either sit down or lean on the sound equipment.  He and I both know this is the only way I can see a show there because it’s Standing Room Only, and I can’t stand for an hour and a half.  It’s torture.  So last night, when I saw him, I asked if I could join him by the soundboard that wasn’t being used.  He looked at me and said, “There’s too many people”.  “Are you serious?” I asked, because there were only 2 people from First Ave. sitting there and one woman who had nothing to do with the show or the staff.  He laughed, shook his head and said, “No.”  I couldn’t believe it.  It felt like a knife stabbing my heart; the loss of a friend whom I thought was supportive.  He wasn’t even doing sound (or anything, for that matter, other than leaning against the covered soundboard) that night, there was plenty of space and 2 stools not being used, and I had made the effort to get myself to the show.  If I had known this was going to happen, I wouldn’t have gone.  Instead, I found myself barely standing for an hour and a half, with my head being held up by both hands.  He knew I was in pain because he kept looking at me.  Normally, he talks to me during the entire show, and last night he didn’t say anything else or even stand by me.  I know I hadn’t done anything to upset him since I’d just seen him a few hours earlier when he stopped by my house before going to work.  So perhaps there was something else eating at him that didn’t involve me at all.  But unfortunately, last evening’s experience is why my legs can’t move today.  

Obviously, I won’t be doing that again, especially now that I know this person isn’t someone I can count on to spend time with at a show and to make sure I can see a show without being in excruciating pain, which is the way we’d always interacted there before.  My job then becomes to be proactive in another way.  I will contact First Ave. to find out if they have any seating for people who have disabilities, so that I can still attend shows.  If not, the bands I’m able to go see will be more limited since many of my favorite bands play that club.  However, I can’t complain about it until I’ve tried talking with the club directly.

These are just a few of the ways that people with chronic pain are affected, in addition to all of the challenges and life experiences everyone in the world encounters daily (and everyone includes people with chronic pain).  As I wrote in my last post, we can’t let the pain define who we are.  But we do have to make decisions based on what our bodies will allow.  These decisions are things I took for granted before my diagnosis of cervical dystonia.   I wouldn’t have thought twice about how these simple activities are very difficult for others to engage in and the extensive thought process they had to use to try to create their desired realities.  Like with me, I imagine sometimes they could do what they wanted and sometimes they couldn’t.  I will never take those years when I could do anything I wanted for granted again.

One of the blessings that has come out of this doesn’t always feel like one.  But I can now empathize with so many more people who do live with chronic pain or a life-threatening illness.  I admire each one of them for waking up each day to a world of uncertainty.  What they experience after waking up is what I’m really interested in hearing about.

My Hopes:  It’s my hope that those people who have chronic pain will share their stories in this safe space.  What are the simple things you used to be able to do that now require a lot of effort and support?  

My hope is also for those who know someone with chronic pain.  To understand that any time we get out of bed, we feel lucky.  To know that the five stages of grief are an ongoing process when you have chronic pain.  To know we aren’t being lazy; it takes 100 times more effort to do something I would have done effortlessly before my diagnosis.  To be supportive in any way you can.  This could mean going to that person’s house just to spend time with him/her, offering to bring meals or food, offering to take that person somewhere, or maybe you change your conversations to Skype so you can still be a part of one another’s visual lives.

My hope for me is that some day soon I will be able to do as my provider recommended:  be calm when preparing to do something so that I’m not causing my level of pain to increase.  Finally, I hope you like this gem of a band as much as I do.  Take a listen.


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