Own the Equinox: My Old Self
August 18, 2016
By Mark Dunning
We live with Usher syndrome, and I mean live with it. Every day it is there, always there. It hovers over you at night. It follows you on vacation. It seeps in to hot baths and lingers as an aftertaste after a good meal. Sometimes it’s just a shadow or scent on the breeze, other times it is suffocating and crippling. It has been all of these things to me at one time or another.
I write fairly frequently about mental health issues because I believe that mental health issues should be considered one of the symptoms of Usher syndrome, taken every bit as seriously as hearing loss, vision loss, and vestibular issues. In fact, I would suggest that it is THE biggest problem that people with Usher syndrome face for a couple of reasons.
First and foremost, mental health issues amplify the effect of the other symptoms. Blindness is not debilitating. Hearing loss is not isolating. They are absolutely challenging and make simple tasks more difficult, but if you can find the energy to persevere, you can accomplish pretty much anything. But depression saps that energy and makes it much much harder to put in the effort it takes to do things that are already much much harder than what the average person faces. It is the combination of depression and/or anxiety that makes blindness debilitating and makes hearing loss isolating.
The other reason mental health issues are arguably the biggest problem people with Usher face is because they are the only symptom that is, effectively, contagious. I know. I don’t have Usher syndrome but Usher syndrome has contributed greatly to my own problems with depression.
And, yes, when I say contagious I don’t mean that literally. My daughter didn’t sneeze on me and give me depression. In fact, it’s not clear to me if she even has that symptom. Bella is amazingly resilient and has grown up with an uncanny ability to live firmly in the present. That has its pros and cons, but one of the big pros is that she rarely gets depressed. A rainy day is just a rainy day to her. It’s not global warming or a sign of the apocalypse. It’s just a reason to stay inside under a blanket and watch a movie.
Yet it is true that my depression is harder to deal with because of her Usher syndrome. The impact of the disease on her makes me depressed. This is true for many, many parents and caregivers. When we talk about the prevalence rates of Usher syndrome, we are dramatically understating the impact because the mental health impact of Usher syndrome spreads way beyond those who are genetically impacted by the disease.
Because I deal with depression, I have written about my experiences in the hope that a) it will make the subject less taboo and b) it will allow others to see that what they are experiencing is not abnormal. Since my first post I have been pleasantly surprised by the large number of people who have talked to me about their own issues with depression and anxiety. It is heartening to see people open up about it and let it see the light of day. I find depression is like mold. It tends to dry up and blow away when shown the sun.
Recently several people have told me that I seem like my old self. It’s funny that they noticed before I did. But, yeah, I am feeling demonstrably better. There are a number of reasons for that. I thought that maybe I would share some of the personal details around why things have improved, but in cataloging them I realized that none of them would be really all that relevant to the community as a whole. They are personal in that they are specific to me and recreating them probably wouldn’t help anyone other than me. So instead I thought I’d group them together in to some broader categories. Hopefully those help.
I think uncertainty, more than anything else, triggers my depression. It’s part of the reason I got involved with the Usher Syndrome Coalition in the first place. I needed to know other people with Usher syndrome, to have some sense of the normal disease progression. And I needed to meet researchers to understand, really, honestly, how research was progressing. I didn’t need someone to tell me it was going to be alright. I needed honesty so I could fully understand what my family was facing.
I don’t mind bad news. I don’t seek it, mind you, but I can adjust to bad things. Bella got her resiliency from Julia and me, after all. It’s suspecting bad news but not knowing the form it will take that drags me down. The run up to an eye exam, for instance, is always dreadful. And waiting for the results of a test is the worst. Some people collapse after the report but for me, it’s liberating. Oh sure, it takes time to adjust and sometimes the adjustments can be frustrating in themselves, but at least I can do…something. It’s being forced to wait, my mind chewing on all the possibilities, that tips me in to depression. That’s why the Usher Syndrome Coalition helped me. It gave me information and diminished uncertainty.
In my life, some certainty has returned. My marriage status and home life have solidified. The kids and I are still working on a routine, but the process for working out the routine is at least clear. Bella’s vision and balance are deteriorating and I worry about her heading off to college (yes, she’s a high school senior now. You are free to join me in feeling old.). But there is a certainty in that. She has taken the SATs and done well. I don’t know where she is going to college, but she is going to college. Her vision and her hearing and her balance will not deter her from going. She’ll get through it. Beyond that, who knows, but you could say that about pretty much any kid going off to college.
So how do you eliminate uncertainty from your life when you are dealing with a progressive disease? Start by shortening your timeline. The shorter the timeframe, the more control you have. For instance, you have complete control over what you are going to do when you’re done reading this blog post. You are going to stand up and go in the kitchen, or you are going to go fold your socks, or you are going to flip over to CNN, or go back to working. Whatever it is, you can be certain of it. The trick is then stretching that horizon a little further, a little further, a little further, for as far out as you can. But when it starts to shake and you are no longer sure of what the future holds, then back off and focus again on those things you can control nearer to the present.
Second, seek information. Lots of information. From everyone everywhere. The more you know, the more you can understand the realm of possibilities. Usher syndrome is bad but it’s not fatal, for instance. And Bella is not going to wake up blind tomorrow. It’s progressive. It takes time. Another thing I can stop worrying about. Those certainties may sound silly now that I am armed with a basic understanding of Usher syndrome, but they were once uncertainties to me and those fed my tendency to slip in to depression.
The worst part about depression for me is that it saps my energy. I just don’t want to do anything. Getting out and doing something, anything, is an incredible treatment for depression. It is amazing how liberating a small accomplishment, like replying to an e-mail that has been sitting in an inbox, can be. I remember very clearly a point this spring where I finally found the strength to blow through my inbox and reply to e-mails that had been sitting there, in some instances, for months. By the end of the last e-mail I could have danced on my desk. It was like shedding cinder blocks.
This leads me to the Own the Equinox tie-in. The Own the Equinox campaign runs 26 days from August 23 rd until Usher Syndrome Awareness Day on September 17 th . We run it for 26 days because it gives people an extended opportunity to get involved. A single day can be ignored in the fog of depression. But hopefully the 26 days of constant reminders can break the inertia and get everyone out and participating.
Depression can be isolating. Joining the Own the Equinox campaign combats that isolation. You are part of a large community, jointly sharing your experiences globally. It’s a way not only to push yourself but also to connect.
And remember, while this is a fund raiser and an opportunity to raise awareness, it’s mostly a celebration of this community and an excuse to get out and do…something. Whatever it is. Go for a walk every day. Go fishing every day. The point is to get a new, productive, positive routine. That, more than anything, is the value in the Own the Equinox campaign.
So there are a lot of reasons to participate in the Own the Equinox campaign that begins August 23rd and culminates in Usher Syndrome Awareness Day on September 17th . But the most important reason is you and your mental health. Get involved. You don’t need to raise a dime or tell a soul and it will still make a difference for you and your family.