Schizoaffective Mama

Trusting others can be difficult if you have been hurt before, but trusting yourself after a brain-disorder diagnosis? Forget about it.

That’s what I used to think. I was diagnosed with a disability and I will have the disorder until I die. I don’t tell everyone I meet about it but I have it, and it has wreaked havoc on my life in the past because I didn’t know I had it until it was out of control, and then it took time, medication, and therapy to get it under control.

I’m blessed that I had access to therapy and medication. Time is also a gift I had on my side-many with my disorder succumb to suicide as a side-effect of the depressive aspect of the disease. I wake every morning grateful to be alive.

I had to relearn to trust my own judgement, which is no small task - it seemed for a long time that the only decisions I was capable of making were all the wrong ones. It’s hard to describe what it feels like not to trust your own brain.

Can one trust others if they do not know how to trust themselves first and foremost? That’s a question I ponder at times. For me, I had to trust my doctor and my family above myself for a while, and I might have to again if I get sick - that’s humbling. I have a master’s degree that I fought tooth and nail to earn.

I was in a really bad pattern for a long time of functioning ok, then slipping back, then functioning ok, then slipping further back or bottoming out for the longest time. This had a horrendous affect on not only me but everyone around me. I’m writing this not to incite pity or sympathy but to try to work through what the feeling of learning to trust yourself again is like… because if I can do it, anyone in a similar situation can dig themselves out and get back on top given time and treatment.

I’ve been homeless, penniless, and lost my kids. It’s a rags to riches story in a way, because I literally bottomed out with my disorder and spent two weeks in jail, time in two psychiatric wards, then in a half-way house for months healing and fighting for disability before I was able to move forward with my life. My disorder is Schizoaffective disorder - it used to run my life but now I manage it, and manage it well. I also have Complex Post Traumatic Stress Disorder, which I am also managing, some days better than others.

I am always going to be grateful to the Social Security Disability program, because I was able to get the help I needed when I needed it, and now I am using the ticket to work program to get back to work.

My family and friends have been amazing as well- some have fallen away because it’s been really hard on them over the years when my disorder was in the driver’s seat and I made poor decisions and said and did awful things. I have made new friends along the way, and I treasure each and every one of them who is by my side, even the ones who are no longer with me.

I’m learning to trust myself again now because I am learning to talk through decisions with people I trust, instead of jumping off the deep end head first. It’s been a cha cha of one step forward, two steps back, and so forth.

For me this is a victory. I am earning enough money to support my family on my own. It’s a huge step. There is a safety net built in that if I lose employment due to my diagnosis in the next five years, I can get the SSDI back in an expedited fashion, but I am proud of myself.

I am not what I used to be. I know that. I have less of an attention span for reading for long periods of time because I get distracted. I have gained weight. I might never be the writer I dreamed of being when I was younger - and I am ok with that. I am still creative and I still have fun with words.

My kids are everything to me. I was really grateful to be able to travel to visit my daughter at graduate school a couple years ago - I am going to treasure that memory forever. I made the trip solo and it was a fantastic experience with her. I’m so glad to have been building positive relationships with my kids - even if they make fun of my music and old-fashioned ways. We butt heads sometimes but at the end of every day I know that they realize how treasured they are.

I used to dread social situations and now I treasure my time with my people. I’ve had some significant medication changes, along with EMDR for the C-PTSD, and life is much better and easier now.

I have been in the pits of abysmal depression in the past, and part of schizoaffective disorder includes schizophrenia, so I have obviously had the hallucinations that go along with that. I’m not trying to whitewash my present by saying all is perfect. I still have a tendency to ask for a lot of reassurance- I kind of call it a little bit of paranoia. At the end of the day life is far more sweet than sour.