What are you afraid of, Jules?

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Published on Monday, 10 September 2012 21:46

Written by Jules

It had been a few days... ok I will fess up, a few weeks... since I ventured out alone.

Sure I had gone out with other people, met people in places I was familiar with, never taking a risk, never really putting myself out there, but to be alone in public, yes it had been weeks. So today I did it, I went out. I remember about 10 minutes of the few hours I was out there.

It's always hard to explain to people what it is like to be agoraphobic. There is this preconceived notion that all agoraphobics are the people you see on the television dramas that simply NEVER leave the house, that we can't get past the threshold of our homes without a complete emotional breakdown. Truth be told, there are many levels of agoraphobia, many people with many kinds of social phobia. The definition of Agoraphobia according to the National Institutes of Mental Health reads:

Agoraphobia involves intense fear and anxiety of any place or situation where escape might be difficult, leading to avoidance of situations such as being alone outside of the home; traveling in a car, bus, or airplane; or being in a crowded area.

That could tell you a lot, or not much if you live with a person like me. Even in that definition, you may wonder, "Jules, what the hell do you have to escape from?"

Well, my lovely reader friends, and maybe family who quite possibly read this blog. I am going to try to explain that. And I am going to try to give a voice to the approximately 3.2 million American adults who suffer with some form of Agoraphobia.

My relationship with agoraphobia began in the late 80's, around the same time I was diagnosed with bipolar disorder. I had my first major depressive episode, and I was also dealing with some rather (in hindsight) typical late teen college dorm drama. My solution was to hole up in my room, and wait for the storm to pass. Hiding in that cave of a dorm became very comfortable. That coupled with the depressive episode was a recipe for disaster. Were it not for a big fight with my roommate that sent me packing up and moving in to my grandparents home, I might be hiding in the dorm today, watching new students come and go.

Then came 1992, the year of the regurgitating heart valves and the largest pregnant belly known to man or womankind. When you can't stay relatively conscious while pregnant, they ask you to stop driving. For a period of time I was stuck in the house. I couldn't drive, and I started to worry when I took the bus anywhere alone that I might pass out from those crazy heart valves, and what would happen if I was out there, in public, hugely pregnant, and sick? Safer to stay at home. And once I had the ability to drive again, I held the life of my daughter in my hands. What if we went out and something happened to her? In fact, once while we were out someone broke into our home, they were still there when I returned. Best just to stay home.

When I did go out I would be driving, and I could see out of the corner of my eye, the cars around me ploughing into me, I could see my death and much worse the death of my daughter happening as I was trying to get from one place to the other. By the time I would get to where I was going, I was a wreck. I was so nervous and out of control I would forget why I was going to where I wound up. The only places I started going were places with a known and very direct route, and where the people at the final destination knew me well. This is a trick I keep today.

That brings us back to the original question, which I think you see the answer to, "Jules, what the hell do you have to escape from?" You see, I am not worried so much about escape, I am worried about the bad things that can happen to me when I am out alone, with no one by my side to help me. And now, as a chronicallly ill person, the agoraphobia has come back. I would have to say it has come back with a vengeance tenfold for every chronic condition I have. So that, in my perfect math skills, is like a million.

What if I am out and I get a migraine? What if I am out and I start to pass a kidney stone? Another SVT? What if I get a spasm of pain so badly I hit the deck in the middle of the grocery store? And yes, yes my friends, what if I start one of those giant vaginal bleeding episodes out of nowhere that sometimes happen and I am standing like Carrie in a pool of my own blood in the middle of Ann Taylor at the mall? I could go on and on.

Now, if any of this happens when I am with someone, the probem lessens by (here is my math again) a zillion percent. I have instant help. I know that not all people with agoraphobia feel the same way I do about this, but I do feel better when I am with someone who understands what I am going through.

Now let's talk about the staring. I have a request of the general public. Would you all stop staring at me? I see you doing it everywhere I go. Just knock it off. Is it the cane? The purple hair? The red lipstick? Or is it as many tell me, my freaking imagination? All I know is that when I step into a store with forty billion of you in it, you all seem to be keenly aware of my presence and you must look at me. STOP IT!

Now is the time to point out two very obvious things. The first being my exaggeration of certain things like the number of people in a situation, or the degree or percentage of how much worse or better something can be. You see, that's part of the gig. That's how it feels. Everything is so much bigger out there in the world to me. It's a giant huge place filled with people who can see me do dumb things or get sick in bad places.... ultimately, to witness me being not perfect. To further mirror in their eyes how my life has not turned out as it was supposed to.

So, what do I do? Lately? Hide. I have moved recently and it's pretty much a fucking nightmare. I tried to go out today and I made a good go of it. Don't ask me what I saw, but I made a point to score myself by checking in on FourSquare. But, everything was such a blur, I wandered in and out of shops and I don't remember a single thing I saw, oh except some OPI nail polish I would like to go back and see.

In the past, in the town I loved and remember, I had it so great.  All I could ever need in about a two mile radius. Each place I went I had people who knew my name and knew I was an agoraphobic. They took special care to make me comfortable and make me feel good. They even hugged me if I looked a little rocky. They were my out of the house support team, they would have taken good care of me if I got sick in their store.

I have accepted the fact that I need a support system, and I know that it won't be forever. I know that one day I will feel better about myself and what is going on with me, that this won't always be so hard. New medications help too. So today, I tested that theory. I went out, I got all those feelings and I brushed them off. I felt that blur and remembered that nail polish. I kept it up until I could do it no more. When the tightness in my chest started, it was time to go home.

As I watched the gates open to my underground garage, and some pushy SOB gave me the hurry up wave, that's when I had had it. I burst out into tears and I was just DONE. I found my way to my spot, I trudged my way, hysterically to the elevator, and somehow found my way home. I tried everything I knew how to get it to pass. I tried busy work around the house, I played with the dogs, I watched a funny movie (Stepbrothers, if you must know). I tried to communicate via text answering everyone's questions that I get all day long until my brain exploded and my heart shattered. 

I can't live this life, I can't do THIS. I can't be this person. I took a valium, I went to sleep. I woke up hystercially crying and humiliated that I could not take joy in what I had done, and instead had to be punished for how it worked out in the end.

And that is why I am writing to you tonight, if at over 1500 words you are still with me. I am writing to you to ask you to love your agoraphobic. Find out in a kind and gentle way what he or she is really running from. Maybe they don't even know yet, maybe that is a path you can very gently lead them down, but lead them down that path in a safe place. Don't assume because we are not the agoraphobics you see on TV that we are not real, or that we are faking. Don't assume that we area cowards, or that we don't want lives. You would be surprised at some of the very huge and complex lives we have built right here on our sofas, via our phones and our laptops.

I am writing to you tonight to ask you, no to beg you, to not make assumptions. I am pleading with you for more hugs and less shoves. This doesn't have to be a joke, or a tragedy. This can work out OK. out out out out.... we will get out. Until then, praise what we do before you push us to do more.

And I can only speak for me when I say: I am trying. Every day. In MY way.

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