Dating Dystonia, Part 2


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We’ll top off  our creation that we began cooking yesterday with a heaping spoonful of isolation.  When I go to bed each night, I record at least 3 moments I experienced during the day that were filled with gratitude.  This can include talking to a friend on the phone, having a visit from a family member, meeting someone for dinner or conversation, or even reconnecting with someone over social media.  Why are these social connections so important?

With my limitations, I am socially isolated, like so many others who have a disability.  I haven’t seen one of my closest friends in 2 1/2 months because I can’t make the 25 minute drive to get to her house.  If someone picked me up to take me, that would be ideal.  However, Metro Mobility (more aptly deemed Metro Slowbility by another friend) is not an option because the vehicles weren’t designed for people with Cervical Dystonia.  The discomfort of low-backed seats and the unpredictable length of the ride is enough to make any get together unbearable.  Yes, this sucks.  It also means having to be imaginative in how I communicate with people, while always making sure it isn’t something that exacerbates my pain.

This is why the following information is so important:  getting a reply or any form of acknowledgment of my existence may only feel like a few hours of your life have passed you by, while it can seem like a lifetime on my end.  Even sending a message that says “Thinking about you and will call as soon as I’m done at work” is enough to make me feel visible again.  I am yearning to communicate and talk about my day, just like I did on a regular basis when I was constantly surrounded by people at work.  It’s very hard to go from being with a plethora of  people to none at all.  For the most part, we are all social creatures and have needs in this area that aren’t being met.

These three emotions are just the tip of the iceberg.  Self-esteem, hope, love, happiness, fear, compassion, empathy, sadness…the list goes on and on.  But guess what?  We’re not the only ones who are experiencing these emotions.  So are you, and I’m speaking to our partners/potential partners.  I’m simply explaining how these feelings might look through the lens of someone with a disability and the fact that they inevitably trigger painful symptoms.  None of us are immune to emotions or the desire to experience healing on a regular basis.  WE WANT TO BE THERE FOR YOU TOO!  Our support may not look like what you had in the past, but guess what?  You may just find it’s even better.  Throughout my 20+ years of teaching, I’ve not only become very in tune with my own emotions, but I’m aware of others’ feelings.  That’s a huge benefit (or curse, depending on how aware you really want to be).  The hard part is figuring out what the other person needs when a difficult emotion arises.  The easy part for me is being able to act on it.

During my college days, Walker Percy’s “The Moviegoer” completely changed my life when he distinguished between finding Anyone and finding Someone.  Anyone isn’t special.  He isn’t aware of my needs, nor does he care to be.  He doesn’t share his own, and he moves through life with me as a part of the background.  We all deserve to be with Someone.  The One who is going to understand that I don’t have MORE needs than him, just DIFFERENT needs.  The One who understands that as his partner, I will do everything I can to meet those needs.  The One who recognizes I’m making an effort to do activities with him that he’s passionate about, just as I expect from him.  The One who will do those seemingly little things like wash a few dishes, take out the garbage, or show affection towards my furry kids without me having to ask.  And the One who will take the time to listen and see things from a different perspective, because this is not the way I chose to live the second half of my life.  It’s the life I have, and I’m going to make every moment count.  And wouldn’t it be amazing to have Someone to create those memories with?

So what about you? Once you’ve gotten over the hump of finding Someone you want to explore a relationship with and are in that mysterious land of exclusive dating, what do you ask for so that your needs are met? What specific forms of support does your boyfriend/girlfriend initiate for you, whether it be helping you physically or during a time when you are feeling really down? What kinds of problems do you come up against when the other person has a hard time understanding your life as it is, and how do you solve them?

If you’re one of those lucky people who already have your life partner, you get different questions. What are the most important acts your partner does to support you as you experience your Dystonia symptoms and all the emotions that go with those?  When you first met your significant other, how did you convey the message that you still want to enjoy life with him/her rather than the alternative of doing nothing at all?  And how can that look so both of you are happy?

MY HOPES:  My hope for everyone is that we never settle.  We all deserve to be with someone who truly cares about us.  Be open and honest about what BOTH parties’ needs are.  Most of us can’t read people’s minds.  Communication is the key, and try “your very best” to listen.  One of the symptoms of CD is that I can lose focus or concentration.  While I didn’t experience this when I was first diagnosed, I’ve observed that it’s starting to happen now.  While this can be challenging for me to accept, I do my best.  When my pain consumes me, that may prevent me from hearing what is being said.  Assume positive intentions because I’m working really hard to get this right.  I also know how hard it can be to assume positive intentions based on all the emotions these two posts on dating have explored.  However, my hope is to continue working on this because it’s more harmful to our bodies (no matter what our ability level is) when the negative seeps in.

And consider this.   Why can’t we assume that someone with a disability may actually be the right person, rather than the other way around?  You’ll never know until you try.  It’s not fair to base a decision solely on our thoughts, rather than making the effort to see if it works for both of you.

Lastly, never go to bed angry or sad.  It’s a cliche, yes, but these emotions trigger our symptoms.  When it happens to me, my pain is so bad that I can’t sleep at all.  This is the last thing anyone needs.  Have that conversation early on about the best way to express hurt feelings with one another, and construct a plan for how to do it.  As Horst Rechelbacher wrote in his gem “Alivelihood”, “When we try to understand what another’s needs are and serve them, we are bringing healing and happiness to the whole situation, theirs and ours.”  I never said it would be easy, but that’s my greatest hope for each and every one of us.


One thought on “Dating Dystonia, Part 2

  1. Hey! I sent you an email this morning to your address, and I got a response back that you were over your storage quota. Wanted to let you know I’m coming to town. Do you have my email address?


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