Continued from My Story – Part 11
By January 2008, I was approved for Medicare coverage since I was receiving SSDI. However, for some reason, Medicare didn’t cover the therapist I was seeing at the time — who I saw for almost an entire year and liked very much. So, I had to switch to someone else. I never connected with the new therapist because she was so much younger than me. I continued therapy with her until the end of May 2008. By that time I was really struggling to go out in public (borderline agoraphobia) even to get to appointments. The bus rides were sometimes frightening. On top of the usual catcalls I experienced anytime I walked to and from bus stops, I witnessed a fist fight at the bus shelter downtown, a few shouting matches, and another day a man became violent when the bus driver told him to get off his bus for being disruptive and rude to other passengers, not to mention this one poor, old woman who was so lost in her own reality — so deeply down the rabbit hole — that she was carrying on a complete conversation with herself. It was a beautifully curious sight to see. No one would sit beside her, so I did. I empathized with her, yet she frightened me at the same time… because I worried I was her.
I scare so easily.
It was around that time that I remember feeling like I could take no more and stopped treatment altogether. I gave myself the break from psychiatry that I felt I needed for my own sanity. I felt that I had been a guinea pig for the industry long enough. I felt that I owed it to myself to find alternatives that would actually work for me rather than trusting another person to figure it out who doesn’t live inside this body. It’s difficult to know when treatment is doing more harm than good; but I sincerely believed that, in my case, the psychiatric medications and even some of the therapy I received in the past did far more damage than I realized. As a result, I simply no longer trusted doctors, psychiatrists, or any use of medication, not even for physical problems. Having been off all of the medications for well over 6 years, I’m not certain that the long-term effects of having taken them for so long will ever completely go away, like problems with memory and concentration; but it is possible that those could be an issue of malnutrition rather than an iatrogenic effect.
It was not my intent to give in to an irrational fear of medicine; but basically, my fear of medicine outweighs my fear of dying. Let me reiterate once again, the very nature of my disability is that I don’t do well under pressure and completely shut down when stressed. I have experienced this reaction since childhood with little to no control over it. I am overly sensitive to the point of non-functioning when I feel like my environment is threatened or I feel overwhelmed. Also, the original problem that sent me into therapy to begin with at the end of 1994 — anxiety — is still a major issue. I have experienced severe anxiety my entire life. It feels like all of my senses are in overload. While the depression comes and goes, the anxiety has worsened over the years. Given many of my life experiences in the past, I can honestly understand why. I do my best to not dwell on the past; but many of these experiences still affect me to this day. Processing the emotions and thoughts that go along with the memories of them is a constant battle.
Most weeks, I struggle to make myself leave the house just to do the shopping or go for a walk at the park. The latter I try to do with some regularity during warmer weather to challenge the anxiety and keep the joint pain to a minimum. In order to deal with a lot of the overwhelming emotions and sensations that I feel, I have many creative outlets that provide distraction. Distraction has been the single most useful tool in managing my mental illness because I am so easily distracted. Through music, art, photography, writing, and blogging, I’ve discovered that I can contribute something to society that helps me at the same time. However, there are times that my distractibility back-fires and works against me, causing a greater lack of concentration and focus. These are usually instances when I am feeling more stressed and overwhelmed; but the biggest problem I face with these creative outlets is motivation. Often, weeks go by with little to no motivation to accomplish anything.
I have no social life outside of the internet; and even on the internet, I find it difficult to carry on conversations with other people. Responding to a comment, writing a short blog post, or an email can take me hours to compose as I constantly second-guess every word I type. A lot of the time, I simply don’t respond at all. KR is the only person I interact with on a regular basis in “real” life. I haven’t really had any close friends for many, many years. Unfortunately, I’ve noticed that I lose patience with people much more quickly than I used to. Being around even a small group of people for any length of time is incredibly exhausting for me. Occasionally, I speak with my son or my mother over the phone; but even those conversations lack any type of regularity.
I have found that it is imperative that my life be as simple as possible and that I must keep my stress level to a minimum in order to function with any type of normalcy. Normal for me looks very different from the expectations others seem to have of me. I’ve struggled my entire life to simply function and survive. It’s been over 9 years since I was last employed, held a “real” paying job. I have good days, and I have bad days; but I still have no consistency with which to give an employer a workable schedule. I really don’t know how to “work” with such fluctuations in my mood, let alone the recuperation time I feel I require when forced to be around other people. It was my hope and intent to support myself financially through my art; but the lack of motivation and inability to develop a consistent routine for myself interfered with my ability to focus on accomplishing career goals.
I’ve often thought the reason why I cannot place value on my artwork and photography is that I lack self-worth. More recently, I had several images published in a variety of different publications, from books, to magazines, to other websites asking permission to use certain images. I’ve never received monetary compensation for any of these uses. It makes me
happy — no, thrilled — for someone to express interest in my work because this gives me a sense of accomplishment and pride; but I have to wonder if by not asking for payment, am I devaluing myself even more? The “business” aspects to having a creative career are lost to me. Unfortunately, I’ve never really considered myself a professional anything. I’m a “Jack of all trades, master of none” kind of gal for the simple reason that there are too many possibilities, too many things I’m interested in to settle on one. And because I get bored easily, I’m constantly moving from one interest to the next.
This struggle became clear to me throughout 2012. For the entire year of 2012, I worked on a photography project using the small point-and-shoot camera that KR bought me for Christmas in 2011 — one photograph for every single day of the year. I had to put forth some serious effort to complete this project; yet it taught me, proved to me, that I could start something and actually finish it. It taught me to pay attention to small details. It gave me a goal and a purpose. It was a creative distraction from a lot of the stress I was feeling from our living situation and the financial insecurities that began early that year.
At the end of January 2012, I learned that my Social Security Disability case was being reviewed. This caused me more anxiety than I could put into words. I didn’t know what to expect and the possibility that I might lose my only source of income was more than I could handle; so I put it out of my mind, didn’t think about it or tried not to think about it as much as I could. I did everything they asked me to, but in October 2012 I found out I would be losing SSDI and Medicare at the end of the year. No tangible reason was given in that dreaded form letter. It only stated in matter-of-fact terms, “After reviewing all of the information carefully, we’ve decided that your health has improved since we last reviewed your case. And you’re now able to work.” I was devastated. I don’t know why I didn’t fight it, appeal the decision. I think I must have been frozen in fear, an all too familiar life theme.
Life went on.
In the spring of 2013, one of KR’s nieces came to stay with us in an attempt to help her through a difficult period in her life. By the time she returned home to Michigan a few weeks later, I found myself emotionally triggered by the circumstances she was facing that were eerily similar to my life in ’98. I began having flashbacks, nightmares, and panic attacks again as my thoughts turned inward and darker, recalling past traumas that I thought I was over. Losing SSDI and depleting my savings account by summer triggered the financial insecurities that I struggled with for so many years. Mine and KR’s relationship began to suffer as we lost hope of moving from the shack we called home, away from neighbors who were causing us more and more stress. Physical problems (e.g. chronic fatigue, joint pain, occasional chest pain, my hair falling out in clumps, hormonal issues that put me into early menopause by the age of 44) worsened as much throughout 2013 as the depression and anxiety I was experiencing.
A bargain I made with myself when I was approved to begin receiving SSDI resurfaced — survive until I can no longer survive. The bargaining chip was my life. Part of me believed that I would follow through with the terms of this bargain, which I’m consciously choosing not to disclose here. I will only say that even though I was surprised by my resilience, my courage to defy, placate the darker side of myself, I feared for my life. Again, I felt like I was suffocating in darkness. By August 2013, not knowing what else to do, I began the Social Security Disability process all over again and reached out for help at a local mental health center. Seeking treatment again terrified me; but by this point, I was desperate.