Sometimes my ideas for a blog post will take on lives of their own, requiring that they be broken up into sections to get the point across in a way that isn’t so overwhelming. That is the case with The Forgotten Ones, and Part 2 is almost ready to be posted. In the meantime, life happens, and my heart needs to focus its attention on those experiences because that’s what this blog is all about. What is it like to live with cervical dystonia? So this will be our 7th inning stretch before I finish writing and posting parts 2 and 3 of The Forgotten Ones.
As a child, I was never very good at softball. Having survived spinal meningitis when I was very young put me at a disadvantage. Since a loss of hearing can be a symptom of this disease, my balance has always been off. As a result, when it came to sports, hitting the ball without it being caught as a fly ball was a rare achievement, and running all the way to first base without being tagged out was even more momentous.
So as I reflect on a day I recently experienced, I feel like I was struggling to get to third base the entire day. You see, for me, having one event planned per day is as challenging as getting to first base and being safe. It requires all of my strength and energy to get through that one thing, whether it be having a friend stop by, talking on the phone, managing my e-mails and responding to them, going out to eat, getting together with family, going to church, driving to the pharmacy to pick up my medications, and of course, getting to my doctors’ appointments (just to name a few). Having only one of those events planned is enough for one day. My body just can’t take it. I don’t allow it to happen very often, but the number of bases I get to in one day is based on how many events I have scheduled.
For this reason, I make sure that I only have one activity planned for each day, and if it requires leaving the house, I will make sure to leave the next day open for me to get some extra rest. As I recently told a friend, needing to have my life planned out in advance on my calendar has become a necessity since I’ve been diagnosed with a neurological movement disorder. Why? Because I know that my body will suffer if I don’t. While I need to listen to my body to tell me whether or not I can follow through with my plans at any particular moment, it’s essential I have the plans in place first. Life wasn’t always like this, but then I never thought I’d be living with an incurable disorder for the rest of my life.
So what’s my point? I’m glad you asked. Last week I had my regular physical therapy appointment in the morning, which is a three hour commitment due to its location and my inability to know how long it will take for Metro Mobility to get me there and back. This was a rare day because I already had something else planned. When my dad and I saw OK Go perform on Letterman during our trip to New York City last November, they told me they were coming to Minneapolis in the spring upon meeting them after the show. Ever since that evening, I’ve had the OK Go concert at First Avenue on my calendar. While excited about going to the show, I knew this was going to be a tough day as I thought about the effort it would take to round first base with my PT in the morning and limp towards second with the show that night. But I was determined to do it. I would be sure to rest from 1:00-8:00, so my body could have some downtime.
At this point, I already had questions and concerns most people don’t have about how I was going to make it through a sold out show at First Avenue, when my last experience had been so painful. Would I be able to sit? Would I be up for driving that far? Would I be able to find someone to go with me after it was confirmed that I had a +1 on the guest list? If so, would the person going with me be able to pick me up? While contemplating all this as I was waiting at second base, slumped over and wishing there was a pinch runner available, I found out last week that one of my nephews was having his first communion that same night down in south Minneapolis. Not only that, but the opening band canceled for the OK Go show, which was an early all ages show, and the venue decided not to find another opening act. All of you concert goers know what that meant: OK Go would be going on early because they were the only ones playing. At one point, I thought I might be able to go to the family event and the concert, but the circumstances were making it impossible for me to do.
Oh my gosh! My anxiety skyrocketed! Now the questions changed. Would I be able to go to the communion at all based on OK Go’s set time that wouldn’t be known until 3:00 on the day of the show? Would my friend going with me be willing to pick me up at the church in south Minneapolis when she lived in St. Paul? Would I even be able to stay for the communion when it wasn’t scheduled until the end of the service? There’s so much more I could say, but the gist of it is that this was a curveball I didn’t see coming, and I had a very stressful time dealing with it.
As it turns out, I made it to the pre-service activities thanks to my parents, the church service only lasted until 7:40, which was the exact same time I had asked my friend to pick me up, and we got to the show with a few minutes to spare. During that time, my friend who also has a disability, asked one of the staff if they had any designated seating for people with disabilities. The employee asked if we’d called ahead, and since neither of us knew we needed to, we told her we hadn’t. But they took care of us as best they could. They set up two stools for us in the back of the club next to the wall and told us to call ahead next time and they would have something reserved for us. That was good to know!
Although being in the back of a huge room didn’t lend itself to much of a viewing of the band, we still enjoyed ourselves. However, I was very close to sliding into third base and could feel the pain surge throughout my entire body. This was just too much for me to do in one day, and I knew it. Not that I didn’t want to be a part of all three activities that day, I just physically couldn’t.
Towards the end of the show, I ambled over to the desolate merchandise table to see what was for sale, and they had a cool poster that looked more like a work of art than a concert poster. It was $10, and I quickly found out the merch guy only took cash. I didn’t have any. My friend didn’t have any. My last chance was to ask my friend whom I was meeting at the end of the show because she had kindly offered to give me a ride home. Thankfully, she pulled out two $5 bills and gave them to me as I headed back over to financially support a band I love and retrieve my cool new poster.
What happened next has stuck with me since it happened, tossing and turning when I went to bed that night, and it has even stirred up frustration as I write this. To preface the event, let me say that yes, we are all technically created equal. Unfortunately, the reality is that we all don’t have the same freedoms. For example, with my dystonia, I don’t have the freedom to drive more than 15 minutes. I don’t have the freedom to be the passenger in a car for more than an hour. And on this night, I didn’t have the freedom to stand in line for half an hour. So as I attempted to wait to buy the poster, with my body leaning against the wall separating the bar from the merch area, I knew I couldn’t wait much longer. I was literally about to slide into third base. Fearing the reality that I was about to collapse, I kindly asked the man in front of me if he would order me a poster when it was his turn to get something. He turned around to look at me and said, “No. That wouldn’t be fair to everyone else waiting.” I explained to him that I had a disability and that I physically couldn’t stand much longer. To which he repeated his initial denial and turned away.
Really? How would two seconds of pulling out a poster interfere with everyone else who actually had the capability to stand around and wait? I wasn’t asking for help because I didn’t want to wait. It was because I physically COULD NOT wait. It also bothered me that his girlfriend remained silent. If someone told me they had a disability and asked if I could help them out, I would let them go in front of me or gladly get them what they wanted. But if you want to bring fairness into all of this, that opens up a much wider topic. Is it fair that I have a disability and he doesn’t? Is it fair that people are diagnosed with terminal illnesses every day? There are so many things that aren’t fair in our world, but it’s how we react in these situations that reveal who we are. I tend to expect the best in people, and when they lack compassion, I know it’s a reflection of them, not me. All I was asking for in the grand scheme of life was two seconds of time and a little kindness. That isn’t too much to ask!
My Hope: Please remember that not all people have the same ability to do things as others. This could mean anything from waiting in a long line to go to the bathroom to waiting in a line to buy anything. My hope is that you will teach your significant others, kids and grandkids to offer to help those who have visible signs of a disability. And when there aren’t visible signs, teach them that the kind thing to do is to help someone who asks for it. Teach acts of compassion by example. If you’re like me and don’t have any human kids, just be that compassionate person because it’s the right thing to be.
Prior to being diagnosed myself, I never would’ve considered the fact that someone truly may not be able to stand in a line because of a disability they were unlucky enough to get through no fault of their own. However, if someone had asked me for help because they needed it, I would have happily given it to them. I have learned a lot of things the hard way with my dystonia and my life experiences that are now viewed through the lens of this disability. Let’s do better and be aware of the people who surround us so that no one turns their back on another in need. If you are that person in need, then you already appreciate this awareness like I do. But we have to teach it, so that if we see someone turn their back on another, then we are right there to offer the helping hand we’re all worthy of. None of us should have to slide dangerously into third base and left by our teammates to be carried off the field.