TLDR; My doctors say I’m not going to be able to succeed with life in a normative manner, which I’ve feared for years. Thank you for supporting me while I’ve tried and I’m deeply sorry it hasn’t worked out.
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This is something I’ve been avoiding writing for weeks. One of those, if I don’t write about it, if I don’t talk about it, then it’s not true. Admitting the truth to myself hurts far more than admitting it to anyone else.
A few months ago, I took another neurorehabilitative evaluation, administered by a neurologist at my local vocational rehabilitation (VR) office. The test shows that my neurocognitive abilities have sharply decreased since my last evaluation, in 2013. My neurocog profile, particularly my memory skills, yields that I am impaired — mild in some skills, severe in others.
We don’t know why this is happening. We don’t know if it’s tied to the brain damage that was discovered in early 2016. The neurologists that I’ve consulted with have no answers. My overall neurocognitive profile reads like someone with early (very early — I’m only 35) onset dementia, but the neurologists aren’t sure that’s what is causing it.
There are no answers, only questions and confused emotions.
The evaluation I had for VR a few months ago was to determine if my neurocog had reached the point of not being viable for school or employment. The neurologist who administered the exams wrote in my evaluation that he was not confident that I could be successful at school or with employment, even with accommodations. That was based upon only my neurocognitive abilities: “she will likely have difficulty in any job or training program…” He wrote that when the medical and emotional (PTSD) factors were added to the neurocognitive, my likelihood of success in school or employment is not good.
I’ve discussed this evaluation with several of my medical providers. The overall consensus is agreement with the assessment: the combination of my neurocognitive abilities with my medical and emotional conditions is not conducive to normative success. As such, I’m no longer looking for employment and I won’t be returning to college.
When my life since my adolescence is evaluated, this makes sense. It’s something I’ve been grappling with since coming off disability in 2008 (I was no longer eligible due to marriage). What am I capable of? How do I maintain? What are my limits? In the five years that I’ve been working on this in earnest, I’ve come up with no answers.
My limits are always in flux, which constantly changes what I am capable of. And maintaining has been impossible. Since 2008, I have had a major surgery or hospitalization every year. That doesn’t include the multiple sicknesses, injuries, and flare-ups that haven’t required time in a hospital. My body is a battleground. Ditto my brain and mind. While I’m making progress on the mind aspect — hell, I’m kicking ass on that — I’m losing with my brain. Or maybe I’ve already lost.
For the past nine years, I have struggled to prove that I am capable of “overcoming my circumstances,” of “being in control of my disabilities,” and of doing everything needed to take care of myself *and* succeed in our society. I’ve tried to prove it to VR, to University of Maryland and community college, to my doctors, to my family, to my social network. Mostly, I’ve tried to prove it to myself. But there’s always been that voice in my head that I’ve tried to shush, the one that’s said I’m lying — pretending that success will happen simply because I’ve wanted it so badly, because I’m a fighter, because if anyone can bootstrap themselves it will be me.
Every time I’ve had a setback, I’ve taken a bit of time to get myself together and then come raging back on track. “Oh, problem X is solved, so that won’t happen again. Don’t lose faith in me. I just need to overcome situational circumstances. It’ll work out.” Time and again. But it’s been a lie, or at least an omission of truth which I’ve refused to admit to myself, let alone to others. It’s been one of my greatest fears, which I have fought with everything in me to not admit the reality of. My health conditions (neurocog, mental, emotional) are not going to go away (emotional is improving, but the other factors won’t go away — that’s fact) and they make me unreliable. They make it impossible for me to succeed in normative ways. They make a normal life trajectory impossible.
Time and again, I have asked my social network for support. They have always come through for me. Through the financial help given to me, I’ve been able to pay off medical bills, buy my medication with cash when I had no insurance/insurance wouldn’t cover it, attend college when I had no financial aid backing me, and in short, to just keep trying to succeed. It’s always been a matter of “we think you’re going to succeed, so we will help you.”
It’s been several years since the first time my network came together and helped me. I haven’t been normatively successful in that time. I’ve tried with everything I have in me, but I can’t maintain. A lot of people have given up on me because they don’t understand why it hasn’t happened yet. Sometimes, I think I’ve given up on me, too.
I want to apologize to everyone who has given money to me and not seen the results we were aiming for. For years I have worried that I won’t be able to maintain, to succeed, but I always kept that locked away in my mind — forbidden to acknowledge, let alone entertain the thought — and I kept trying. I want so badly to succeed — at college, with employment, with taking care of myself — you have no idea how much I want that. So I’ve kept trying, for myself and for everyone who has believed in me (and that’s been a lot of people). But it’s time to stop. My medical providers all admitted relief that I’m finally coming to this conclusion. But I’m not relieved. I’m more upset than I know how to express with words.
Thank you, to everyone who has encouraged me, to everyone who has given me money to help me move forward, to everyone who has believed in me. I’m sorry I lead you (and myself) on about my ability. I just wanted it so much, maybe too much. Admitting the truth to myself hurts more than any other loss I’ve had in my life.
I don’t know what the future looks like for me now. School and employment are no longer options. My disability case with Social Security is pending and I won’t have an answer for months. I’m still trying to secure a Section 8 housing voucher so that I’ll have stable housing.
I’m trying to figure out a way that I can make money that involves others as little as possible. Normative means of employment won’t work for me. More than fifty percent of the time I have to cancel work plans (speaking gigs, workshops, meetings, etc.) and the instability of my health makes having deadlines a nightmare for all parties involved. My health is unpredictable and that makes me unreliable. There’s not much I can do to change that. It’s time I started admitting it to myself and others.
For the rest of 2017, I have some conferences lined up. I also have some articles I’m working on. Determination has not helped me complete commitments in the past — it’s always been up to chance as to what life throws at me that will impact my health and how strong the impact will be. Relying on me/my health is a risk. It’s not one that I feel comfortable asking people to take anymore.
In answer to the question I keep getting when I’ve had this conversation one on one with select people, no, I’m not suicidal. No, I’m not giving up on living. I am giving up on the normative path to success. I’m going to spend more time taking care of my health instead of fighting it. And I’m going to keep writing, speaking, and organizing, because I think that’s my best bet.
If you got this far, you are a very committed friend. Thank you.
