Hello again my friends…!
Well, it’s almost the end of August. Where does the time go?
By now many of you know that I did several interviews with a local reporter so that he could write an article for the Tampa Bay Times about my memoir. Those interviews have been completed and I am not waiting for the photographer to come to my home and take some photos to go along with the article. I started thinking about all the information I had passed on to this reporter and was wondering if it might not be helpful for me to put it “out there” for others who are also challenged with anxiety and/or agoraphobia to view. I decided to do a few videos (not finished yet) and put them on youtube.com. The series is called “Coexisting With Agoraphobia, Anxiety and Panic Attacks.” You can find them easy enough by just putting my name in on the youtube site (Ellen Isaksen). I then thought I’d put the main part of the videos here in text form in case anyone want to read some of what I wrote…. Here is the bulk of what I put in the first or introductory video. I hope something will jump out at you and be helpful.
Hi, my name is Ellen and I would like to talk to you about what it is like to live life as an agoraphobic. I am going to make a few videos here on Youtube centering around my life’s experience with this challenge. In this first video I’d like to give you a brief background about myself and what exactly agoraphobia is. Please be advised that anything I mention here is only information about myself that I’d like to share with the hope that some of it might be helpful to you. It’s not meant as a recommendation that you adjust your life in any way. My main qualification is the fact that I have lived personally with anxiety and agoraphobia for decades. Please just take the best and leave the rest.
Agoraphobia is a type of anxiety disorder in which you fear, and usually avoid, places or situations that might cause you to panic or that make you feel trapped or helpless. The reactions in these places may increase in number and intensity over time and become so strong and terrifying that you eventually avoid going to them at all and finally one day you begin to avoid all outside situations for fear that you might have a reaction and you remain within the confines of your home or safe place. Eventually the mere anticipation of having an anxiety reaction or panic attack is enough to keep you from venturing out. This is what Dr. Claire Weakes, a pioneer in the field of agoraphobia calls Second Fear and it adds an additional problem to the original problem of the actual panic or anxiety reaction. There is much written about agoraphobia these days so I won’t spend much time on technical data, but rather would like to share with you what it is actually like to live one’s life as an agoraphobic from the agoraphobic’s point of view. I have plenty of experience with it since, as I said before, I myself have been challenged with severe anxiety, panic and agoraphobic since about age 13. I have also dealt with it from the other side of the desk as a counselor. I am now 66 years old and have managed to live a relatively productive life of co-existence with my challenge, especially since I gave up the idea that I had to be like everyone else in order to have any semblance of a “normal” life. I finally got to a point where I just made peace with my life as it was and decided to just simply play the hand I was dealt in this life.
These videos might not be for all people. While I totally support everyone these days following whatever course of treatment they can get their hands on to overcome their anxieties and fears I am mainly trying to help those challenged with the most severe forms of anxiety and agoraphobia and for whom standard therapies and medications have not helped. I believe the videos will also be extremely helpful to those who need coping skills while undergoing their current method of treatment. I myself fell between the cracks and went over 20 years undiagnosed. That did not help my situation one bit. I had so many years, decades even where I developed conditioned responses to my anxiety and that conditioning can be very difficult to overcome. You need not fear that happening to you, however, as there is so much more known about agoraphobia today, at least from a book point of view and there are always new medications and therapies on the horizon. I unfortunately developed a phobia to medications because I had so many severe adverse reactions to them. One day I may try something new, but for now I choose to rely only on valium if I need it. It is not the best medication, but it is familiar to me and I know how it works in my body. Back in the late 50’s when I had my first MAJOR episode with panic and agoraphobia the disorder was not recognized. I went from a stable, honors student in grammar school and early high school to a homebound child in the blink of an eye! I am here to tell you however, that a full and meaningful life can still be had even after such experiences. While I have never fully “Recovered” I have had a life with many interesting and rewarding twists and turns, and ultimately even ended up having a career as a Psych. SW, I have had many good friends and personal relationships as well. It seemed however, that I’d just work my way into the outside world and then something would happen and I’d end up in the house again. For many years (about 17 I guess) while I was functioning in the “outside world” getting my degree and working full time I relied upon alcohol to function. Thankfully, around 1982 I managed to give up alcohol completely. My book, Behind These Eyes: One Agoraphobic’s Journey To A Meaningful Life chronicles that entire process. I was now forced to face my world with anxiety without any crutches. I knew I’d end up dead if I continued drinking the way I had been.
There has been much trauma and loss in my life from time to time and those are major contributing factors to my inability to stay comfortably in the world beyond my home.** It should be noted here that just because I was IN my home I was not/am not necessarily relaxed and at peace. High anxiety and panic can “hit” anywhere at any time, often seeming to just come “out of the blue.” I have tried many types of therapy including supportive, cognitive and Systematic Desensitization. All of these things helped me get out of my house for certain intervals, but then I’d find myself limited to my home once again. For DECADES I tried putting that key in the car every day just to see if I could get around the corner. Most times I didn’t and then I’d beat myself up and get depressed and feel so much “less than” everyone else. After all, the whole world seemed to define how “normal” you were by what you “did” how much you “had” and where you could GO. If you could not even get to the grocery store surely you were severely mentally ill!
Around the year 2000 I made a conscious decision to try to develop my spirituality. I had never had a strong religious background and was somehow jealous of those who could rely on their faith to get them through tough times. I decided to check out certain beliefs and see if anything was a fit for me. One day, while reading something about Buddhism, I realized that what was truly most important in this world was WHO I was INSIDE. My worth as a human being had nothing to do with where I could or could not go or what I did or did not do. I thought, “If that be true, than I can be a total and complete person even if I never left my chair! I felt so very free from that moment on. I simply gave up the NEED to have to get in the car every day. If I felt like it I did and if I didn’t I simply did not. I decided to focus my days on what I could do and not on what I apparently could not do. It almost seemed like I had been a bit insane for not thinking of this sooner! From that moment on I got up in the morning happily planning what I truly WANTED to do with my day. I began developing an online business doing custom printing. This was a carryover from days gone by when I actually owned a T shirt shop. I learned how to do web page design and made many online contacts. A whole new world opened up for me when I got my first computer. I discovered all kinds of creative talents that I had no idea I had before. I felt alive for the first time in decades! I still continued with my therapy sessions with my counselor(S) but my focus was on so much more than what my anxiety level was and where I could not go and how terrible I felt about myself for not being able to do so. Life began to change as I decided to find my own definition of what “normal” was for my life. I had not given up on my life, I just knew in my heart that to date I had tried everything I could think of to keep myself in the outside world and I was losing myself to that singular goal. Life was passing me by and I was not getting any younger. It was at that point that I created my first “real” life for myself….. just a different kind of life than most people embraced. I never looked back.
Today I still live with high levels of anxiety and am at this moment homebound. I have again recently had many changes and losses in my life and am in the process of reinventing myself. My book was the start of my reinvention, even though I didn’t realize it at the time. Initially I wrote the book because I thought I had a story to tell and also because I hoped that it might help some who could identify with my challenge. My plan was to go back to my life after writing the book and try again to just let my anxiety run in the background and not focus much on it and live my day. Life, however, took an interesting turn.
A reporter from the Tampa Bay Times here in Florida found my book online and asked me if I’d consider being interviewed by him so that he might write an article about the book and my life. We have just recently completed about 7 interviews and it occurred to me that all the information I shared with him might be very helpful to others so I decided to take a stab at making a few videos. I am not a public speaker, so these may be a little rough around the edges, but hopefully the content will more than make up for it. My book (HOLD IT UP) is a very complete account of my life virtually from birth until about 2 years ago. I describe some early childhood neglect and abuse which probably laid the foundation for my insecurities and anxiety about living in this world. From there I describe my first major incident with anxiety and panic at about age 13. From that moment I became immediately homebound and could barely even leave my room. My meals were literally slipped under the door of my bedroom for a long time. The rest of the book is basically about how I learned to live with my anxiety and panic. With the exception of the first two years I spent in college, I have had to deal with severe anxiety and panic almost on a daily basis, along with social phobia and many of the other idiosyncrasies that go along with anxiety disorders.
Doing this article has forced me to think long and hard about how I manage to live my life on a daily basis…..how I manage DESPITE my anxiety to have a fairly big life. Again, as I said previously, I think all this scrutiny may be of help to others so here I am. In upcoming videos I hope to cover in a very detailed manner all the coping skills I have managed to discover and develop. I do not intend to speak too much about symptoms as you all know what yours are and that info is also readily available on the internet and in books. We are very suggestible people and talking about symptoms can cause us to think about them too much and we can even talk ourselves into having new ones we do not currently have. The bottom line here is that they are all just that, SYMPTOMS and can be dealt with in much the same way…by simply ACCEPTING that they are there and working our lives around them. Thinking too much about them just gives them needless power. Much information is also on my website at http://eaisaksen.com where I offer a blog, tools for coping and much more.
In these videos I hope to:
1. Help those who feel that they cannot have any kind of productive life if they are a homebound agoraphobic or are living with high levels of anxiety on a regular basis.
2. Offer real insight from an agoraphobic’s point of view about how it really is living with agoraphobia and anxiety.
3. Help loved ones of those with agoraphobia by allowing them to see how real all these symptoms are and how debilitating they can be. Help them to understand that we are not faking, especially when we can do something one day or even one minute and not the next.
4. Offer specific coping skills for dealing with symptoms to get through certain life situations
5. Offer suggested readings.
6. Offer creative coping tips that just make life easier.
I hope you come along with me for the ride.
Namaste!
Behind These Eyes... Writings From an Empathic Agoraphobic 