I never critically stopped to ponder why being a great communicator can also lead to a very lonely existence at times.  Since I was a child, I have always been “perky” as they say and never had a problem in social settings.  I love people, communicating with them, helping them, and always trying to find a middle ground between disagreeing viewpoints.

Since my accident so many people tell me that my patience levels, communication skills, and calm demeanor are extremely admirable.  This is what I’m told to my face anyway.  I believe it’s true though as I have this odd ability to stay unusually calm in stressful situations, and be patient for far longer than I probably should be at times.  

I attribute much of this to Blue Cross and Blue Shield with the hundreds of hours I’ve spent on the phone with folks that are not particularly bright trying to get medically necessary equipment approved.  I recall this one day I spent nearly 7 hours on the phone calling back Blue Cross and Blue Shield trying to find someone who could actually help me or transfer me to the right person.  On that particular day I do recount losing my patience as I started to raise my voice, which is very unlike me.

On a serious note, and I’ve written about this on my social media before, living with a disability where you are physically dependent on other human beings to help physically take care of you each day is a blessing, and a challenge wrapped up in an emotional bow.

It is such a beautiful gift whether that is a family member, friend, spouse, or caregiver to have them dedicate their lives to helping you.  However, you must remember they have a life too.  You are not always their main concern.  People have their own lives, which I respect.  If something goes wrong, whether that be they get sick or have a personal issue in their own lives, we, the ones dependent on others, are usually the ones that get the emotional brunt of whatever might be in store for us that day.

I get that.  I respect that.  However, it’s not easy.  There are moments in many of my relationships where I quite literally want to scream, but I hold it in none-the-less.  Everyone has bad days or bad weeks or bad months.  But when you are NOT dependent another human being you can usually keep to yourself.

I don’t have this luxury.  Except for the thoughts in my head, everything is pretty much public in my entire life.  I can’t get up to eat a sneaky nibble in the middle of the night without asking someone to help me.  I’m certainly not going to wake some up in the middle of the night to get a slice of turkey.  It seems like a fair request, but I constantly have to be cautious of others energy levels, mental states, and moods every day.

People very frequently come to me with their own problems and look to me to be a problem solver or just to listen.  I do both.  I am a great problem solver though.  Whenever I have a problem, I allow myself 5 to 10 minutes internally in my mind to bitch about it, but then I ask myself:

 “Okay Ali, what are we going to do about it?  Talking about it is just going to bring other people into the conversation.”

That age-old expression “Misery loves company,” I find to be very true.  I don’t think people intentionally set out to make each other miserable, but if you each are constantly complaining about your problems throughout the day, then you become that person.  I have to be extremely careful to protect my mental sanity at all costs because anxiety makes my nerve pain go wild.

So, even when I am feeling down, I perk up as they say.  I try to find that one thing in a day that did make me smile and hold onto that.  I really do work very hard at letting the rest go.  It’s a constant daily mental training exercise just as eating right or exercising.

I have worked with nearly a hundred people in my life over the last 12 years and have had to learn to be a great communicator.  I do pride myself on this, but it can be extremely lonely.  As I mentioned above, people do tell me to let it out, but if I do it generally ends up in a winding road of talking about who has a more challenging issue than the other, etc.  This is not who I want to be, nor who I care to become.

This comes with a toll though.  A big one.  I’m surrounded by people all the time, but I still feel so lonely at times.  I do wonder if this is what movie stars and famous folks feel like.  They have all the money in the world, can do anything they want, but they suffer from very serious depression.

I don’t suffer from depression, but I do have anxiety.  I think everyone in the world probably has anxiety in this modern day in age.  I have to be very careful how I control mine because my life hinges upon balancing a delicate ballet of dancers trying to stay in rhythm.

I certainly have some tough relationships in my life, as I think every single one of us do, which I have to navigate gently as to not upset people because they help me in one way or the other.  This causes me to flip-flop on decisions at times, which is very unlike me, because of the fear of abandonment due to my disability.

This is a powerful source of my anxiety at times, which is worth restating – Fear of Abandonment.

I have talked to countless quadriplegics and a fair number of us share the same fear.  It’s terrifying knowing that whoever might be helping you in your life has the ability to walk out because they, too, have their own lives.  You may be special to them, but not a priority.  They have their own families.  Even if your family is the one that takes care of you, they love you, but they also have their own life.

It’s almost a chicken and an egg problem.  To me, it feels like if I am too needy or grumpy then no one will want to help me, but if I don’t express my emotions then folks worry about me and ask me to express them more.  However, if I express my feelings more, they may not want to help me.  Around and around, we go.

I write this today, not for sympathy in the least, but to just offer a different perspective of life.  Many of us with varying disabilities have a different viewpoint on so many issues that are not discussed enough because they are very sensitive. 

I enjoy approaching sensitive topics, but making sure I capture multiple points of view.  Life is messy, relationships are messy, and when you add a disability into it all – “Messy” is a world many of us with our disabilities have had to learn how to navigate.


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