Do you ever feel lonely?  Or maybe it’s a matter of not fitting in.  I was talking with a friend earlier today, and she made the comment that she really didn’t know her new colleagues well enough to ask them if they could carpool to a training together.  In previous years, she knew she fit in with her colleagues, but changing jobs is a whole new ballgame.  This made me think about the big move my family made over 30 years ago, when we moved from Forest Lake, Minnesota, (almost a suburb of Minneapolis) to Luverne, Minnesota (nowhere close to being a suburb in the southwestern part of the state).  A population of 4500 people. I hated it!  Who wouldn’t?  I was eleven years old and in the middle of my 7th grade year.  I had friends I had known since the 3rd grade and was getting used to the chaos and incredible responsibilities that accompanied going to a large jr. high.  I felt grown up, and I looked forward to catching up with my friends at lunch.

When we moved to Luverne, I was all alone.  My classmates stabbed one another in the back all the time, and I didn’t want any part of it.  Now I know that’s what jr. high is all about, but back then, I chose to be alone.  The kids were either related somehow or had known each other since kindergarten.  Can you imagine the agony of going to the cafeteria every day in a new school and not feeling comfortable (or welcome) enough to sit with anyone?  That’s how it was for me for three years; most definitely one of the worst periods of my life.  So this idea of being alone is not new to me.  Whether it be changing jobs, going to a new school, or just being in a funk, it is depressing to be in that state of mind where you feel like a misfit.  To be more blunt, it really sucks!!!

Changes are difficult, and I find that the most challenging area for me is that of relationships.  Friendships, significant others, family members who once cared about you but then stopped for some unknown reason…When I was diagnosed with dystonia, I didn’t realize what kind of impact my disorder would have on any of these relationships.  The family members who had stopped caring had done so long before I was diagnosed, so that wasn’t an issue.  Although, it would’ve been nice if they had surprised me by extending a hand to support me with my new reality, with the possibility of having them in my life again (at least make the effort to see or communicate with one another more than once a year at Thanksgiving).  In an ideal world, I would have appreciated all of my family members to offer support in some way.  But as the Rolling Stones say, “You can’t always get what you want.”

Of course, my parents have been there to help me every step of the way:  taking me to the doctor, taking out the garbage, helping with my gardening, picking me up to drive the hour to their home and back…I appreciate all of this and more.  Sometimes, though, my family changes plans on me and don’t realize these last minute changes do add a gigantic layer of stress that worsens my pain.  I don’t think they mean to dismiss me, but I would like to be consulted about the possibility of a last minute change so that I feel my needs are taken into consideration too.

At the time I was diagnosed with cervical dystonia in 2009, just before my 39th birthday, my significant other (actually my former fiance) never offered to take time off of work to take me to my appointments.  In fact, I don’t even know if he understood what it meant for me to have a neurological movement disorder; he always expected everything to be normal.  No, I couldn’t walk the dogs anymore.  I couldn’t really drive anymore.  I couldn’t cook unless my head was supported.  I couldn’t do a number of things, and he attributed it to a dwindling interest in him, rather than hearing me when I said I was in pain.  Could he give me a massage to make my neck feel better?  Even that was too much to ask.  Needless to say, a year and a half into my diagnosis, I finally broke it off.  Why I waited so long, I’ll never know.  But I just kept hoping he would start to care and show it.  CARE…is that really too much to ask from anyone?

So I counted on my friends and my parents to help me.  During the first year, I was blessed to have a number of acquaintances and friends offer to drive me to my weekly physical therapy appointment that was 40 minutes away.  And a few friends drove up to visit me at my house a couple times.  After that first year, though, it was tough.  Most of my friends were teachers, so they couldn’t take time off to drive me anywhere.  And my parents lived an hour away.  I’m not sure what happened to the others.  For some reason, it made me feel forgotten.  I still had cervical dystonia.  I still had weekly physical therapy appointments.  I still had a hard time standing long enough to cook.  I still needed to be able to visit with my friends and share what I was going through.  But my support system was falling apart.  Who could I call on to help me?  The friends I had before were either teachers or musicians.  When I wasn’t driving to see them every day at work or when they played at a concert venue, the connection was severed.

I expected some groups of friends and acquaintances to be more helpful and understanding.  For example,  I asked for help with rides and requested that we have a discussion for selecting a new location to meet with one of my professional development groups I had been a part of for years. I was surprised by the response I received when sharing my new limitations with them. “Why can’t you take the bus or even apply for Metro Mobility?” they’d inquire.  While I can go into the pain levels and stress these modes of transportation cause at another time, let me just say that taking either one causes me more pain than just about anything else.

I really did feel rejected and wasn’t able to go to our meetings for a while because I simply can’t drive that far.  I understand we are all busy, but even helping someone twice a year or changing the location so it was more centrally located wasn’t that much to ask.  If I had the capability, I would love to be able to pick someone up and take them home once or twice throughout the year.  This giving would feel good to me, and I would be helping someone who needed it.  How awful it is to feel estranged!  None of my friends or colleagues could understand the pain and spasming I was living with every day.   There was no “new normal”.  And there never will be.  My life experience changes from moment to moment.  The unknown is a place I have never been comfortable with, but it’s the place where I will continue to exist until neurologists start searching for a cure.

The unknown of who will still be in my life now that I’m not going TO people. They have to come to me.  The unknown of  what time I will be able to get out of bed tomorrow morning.  The unknown of whether or not my body will feel “well” enough to volunteer for something I signed up for.  The unknown of whether my body will allow me to watch my two nephews.  The unknown of how long I will be able to stay at a concert if it’s a standing room only show.  These are just a few of my unknowns.

The unknown that has been the most challenging has been the inevitability of changing friendships.  While there are those people who come in and out of my life when they can, my lack of regular companionship with one or two close friends was really hard to accept.  I felt so alone and longed for my old friends who lived out of state, because I knew they would be here next to me if they could.  When you go on disability and accept the presence of the unknown in your life, it is inevitable that you will feel like you are being sucked into a vacuum and kept there until someone comes along to dump you out.

That’s what Pathways is for me.  One year ago today, I went for my orientation at Pathways Healing Center in Minneapolis and have been blessed with meeting new people ever since.  Finally, I found a place where some people understand all of these changes.  We find comradery in our suffering, yet it is found in our healing too.  I feel at home here.

It’s often like watching Norm walk into Cheers, and everyone shouts, “Norm!”  I definitely want to go where everyone knows my name, and this is one of those places.  While there are a couple people I have grown close to here, there are others I know intimately enough to hug when we see each other.  I know there is a part of me still stuck in that vacuum, but I’m still trying to find my way.  However, I at least know that I have a few constants in my life, which is a huge gift when living in a world of the unknown.  Cheers!

Hope:  I hope that my relationships with new friends will continue to grow and, when the time is right, that some of my old friends may be able to return and be more present in my life, based on where life takes them.  My hope for people who have chronic pain is that people from your different factions of friends will step up to help when you ask them to.  Asking for help is a big step, bigger than most people realize.  Help them be able to understand that you would do the same for them if you were physically capable of it.  Like it or not, this is how we discover who our true friends are.  They give what they can, and we can acknowledge the extra effort it takes for them to remain a part of our new realities.  But never feel guilty about it.  We have enough stress in our lives to feel guilty about asking for things to change.  For most of us, these are changes for life!


One thought on “Changes

  1. Hello, warrior. This post is very profound and touching. It’s also a bit sad that you have felt forgotten at times because I am sure that many people you know continue to care about you and love you and they did not forget about you. I think you are right that a disability changes some things because the main core of regular companionship is doing things together and having common interests and preoccupations personally and/ or professionally and especially being in similar stages of life. Some people are consumed by other imminent things and life experiences, but the core of the friendship stays the same. A true friendship ebbs and flows on the outside, dependent on these life circumstances that affect your every day living, but a true friendship is still there on the inside. Keep your head high and your heart open. We love you and we care.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s