Taboo

March 19, 2014

by Mark Dunning

I have clinical depression.

I have begun taking anti-depression and anti-anxiety medications. 

I see therapists every week.

I see a psychiatrist regularly.

Those were the four hardest sentences I have ever written.

My son asked me last night what happened to me. He was crying his way to sleep. Again. He says he does so every night because he is worried about me. “You never laugh anymore,” he said, “I don’t understand. I just want things back to the way they were.”

Me too.

I want to make 100% clear that I still believe with all my heart that we are on the right track with Usher syndrome research and that Bella will live a happy life. I’m loath to write this post because I don’t want anyone to read in to my condition as a sign that there is no hope for families with Usher. On the contrary, there has never been more hope. We should all be excited about the future for families with Usher syndrome. This isn’t about Usher syndrome.

But it is.

Since the first of the year a number of illnesses, mishaps, family conflicts, and simple bad luck have befallen my family. Somewhere in that tangled mess I got lost. I can’t find silver linings any longer. I can’t fall asleep. When I do, I pop awake and my thoughts are instantly fixed on a problem that keeps me up for hours. I run the same things over and over again in my mind with no productive results. I’ve stopped enjoying things. Food. Sports. Music. And, God help me, my children. 

I always found time for my kids, always found a way to smile through whatever silly little thing they were excited about at the time. I could always find a reservoir of excitement for them. But I can’t do that any longer for some reason. It’s always “Not now. Maybe later.” So Jack cries himself to sleep at night. He’s twelve years old. I’m his best friend and I’m lost.

What happened to me?

On top of it all is Usher syndrome. My wife is still struggling terribly with the diagnosis. Bella wants to learn to drive a car. The Usher Syndrome Coalition is doing great things and is more successful than ever. But I have trouble making meetings or participating in any meaningful way. The more I withdraw, the more I feel that I let others down, others with bigger problems than mine, and the more depressed I get. I can’t seem to break free.

I just want to run away. I want to hop on a plane and disappear. But I would miss my family too much. I would be more unhappy, more depressed, in a lonely paradise than here in this endless New England winter even though it’s hard to believe there is a rock bottom below this.

Depression and anxiety are a way of life for people with Usher. But it’s not just those with Usher that suffer. Parents do too. And siblings. And grandparents. And friends. Families of people with Usher often deal with care giver depression. When you are caring for someone with a disease, things are never supposed to be 'about you', so you feel selfish when you try to allocate care for yourself. You feel guilty for even having a problem when the problems of the people you are caring for are so much more quantifiable and publicly appreciable. The monster that is pulling me down can get any of us. Many are too embarrassed by the condition to seek help.

So I’m writing this post. Depression can’t be taboo in this community. Usher syndrome is a progressive disease. We all deal with constant loss and anxiety about the future. We all feel an obligation to be strong for ourselves, for our families, for our sanity. Those with Usher want to spare their families pain. Caregivers want to be there as advocates for family members with Usher. As easy as it is to sideline our own self-interest, it's important to recognize that our own health and wellbeing is a prerequisite for being able to do all the things we want to for those we love. When we falter, it feels like shame. 

I know because not only am I the father of a beautiful child with Usher syndrome, I am also the Founder and Chairman of the Usher Syndrome Coalition. An entire Usher syndrome community depends on me. And I am dealing with clinical depression. So even though I know logically that my problems are natural and normal and acceptable, I still feel like I am letting this community, my family, my daughter and my son down. I still feel ashamed.

And so I stand before you today, humiliated and ashamed of what I am. But I also feel a sliver of hope for the first time in months. I can see a purpose in this depression. I can write about it. I can bare it in all its ugliness before this community. You can see that you are not alone and you can watch as I get better. Because I am going to get better. It’s just going to take a long time.

Here’s my story so far, with the details removed to protect the innocent:

I see a therapist once a week. I went initially just to appease my wife. I didn’t really think I needed help. But the more we talked, the more it became clear that I really was dealing with depression. Through our sessions, I have come to realize that I have a history with depression. I have written before that when Bella was diagnosed with Usher syndrome, I could hardly move for months. Previously I had episodes when Julia first became pregnant with Bella (we were married but it was unplanned) and when Bella was diagnosed with hearing loss. Looking back I know of other times in my life when I struggled with depression. I have never sought help before. That’s not uncommon. Men in particular are very reluctant to seek help for depression. In the past I was always able to pull myself free eventually. That’s not happening this time for some reason. This one feels similar to past experiences, but deeper in some ways. I just keep slipping further away. Finally after a number of sessions, the therapist recommended I see a prescribing psychiatrist and consider taking medication. 

I saw the psychiatrist last week. Deciding to make that visit really made me feel like I was nuts. I needed medication just to get through the day? I felt weak. What kind of person can’t handle simple things? I could only imagine what my father would say. Over a two hour visit I told her my whole story and, like the therapist, she feels that I am dealing with clinical depression. She recommended I take an anti-depressant. 

Anti-depressants take 6-12 weeks to have an impact. They change the chemistry of the brain (which sounds really scary). The belief is that depression throws that chemistry out of whack and the medication helps to rebalance it. In the interim, I still have the problem with my sleep. So the psychiatrist also recommended I take an anti-anxiety medication for the short term. The idea is that the anti-anxiety medication will help me sleep during the period before the anti-depressants take effect.

Medication is only part of the solution. It can give me room to deal with the real issues but it can’t resolve them. For that, I am in therapy. It is unbearably slow. I want to be better yesterday but it is helping. Just very, very, very slowly.

I am also under strict orders to live a healthier life. Eight hours of uninterrupted sleep (hence the anti-anxiety meds). Three healthy meals a day. No alcohol. Cardiovascular exercise four times a week. I am supposed to engage myself in distracting activities, preferably with other people. Doing things alone just let’s my mind drift back to the problems. That’s the hardest part. I don’t feel like doing anything and I am irritable when I do. Support groups are the best bet. Sitting and talking with people that understand your problems is the best distraction you can have.

My wife would normally be my go to person for support. She understands me better than anyone and we have a ton of shared experience. But we have two problems. First, shared experience isn’t necessarily a good thing. The act of explaining how I got where I am is cathartic. Julia already knows the story so I don’t go over it again or she gets frustrated when I do. And secondly, Julia is having a very hard time with the Usher diagnosis herself. It seems really unfair of me to bury her with my feelings on the matter when she is already overwhelmed herself. This has led to problems in our marriage. I’m irritable and withdrawn and we are having a hard time finding safe things to talk about. Now we are seeing a marriage counselor once a week. 

So in summary, I am taking two medications, seeing a therapist, a marriage counselor, and a psychiatrist (to monitor the medications). I am trying to eat better, exercise more, and do more wellness activities. According to my therapist, marriage counselor, and psychiatrist I am doing everything I need to do to feel better. And I still don’t. At least not yet.

Yikes. I can’t believe I’m sharing all that publicly. But that is the very reason I am. This is hardly uncommon. The National Institute of Mental Health states that 6.7% of adults in the US deal with major depression every year. That’s 20 million of your closest friends who could benefit from the regiment I am currently on, including medication and therapy. In the Usher syndrome community that percentage is significantly higher. I am decidedly not alone. I shouldn’t feel like a pariah for dealing with something that a huge percentage of my peers deal with as well. Seems we’re all alone in this together.

Hopefully you found this helpful. I know it helped me to write it. I’ll share more when it’s appropriate. Your comments are welcome. I’d love to hear your stories as well. Wish me and my family luck. Here is a link to information on depression from the National Institute of Mental Health.

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