NOTE: This blog was originally written as a journal entry for my Peer Support Specialist as part of my Wellness Recovery Action Plan. It reads somewhat choppy, but I wanted to share it nonetheless. My children have given me permission to share their medical information as long as I don’t use their names.
(Trigger Warning: Reference to suicide, emotional abuse, and trauma.)
“Hope is the life force that keeps us going and gives us something to live for. Hope is a crucial part of dealing with life’s problems and maintaining resilience in the face of obstacles. Even a glimmer of hope that our situation will turn around can keep us going.” – Joe Wilner (How We Lose Hope and How to Get it Back)
The word “hope” is defined as a feeling of expectation and desire for a certain thing to happen. I sit here staring at my computer monitor trying to think of things that bring me hope. Where is that feeling of expectation and desire for a certain thing to happen? I seem to be lacking it. I am in full-on survival mode and have been for some time. The feeling of hope seems to not be in the equation for me.
I sit here reminding myself it has been bleak before, I mean really bleak. Bleak to the point where I didn’t want to live anymore. I was never suicidal, I just wanted the physical and emotional pain to end and I only saw death as a way to finally escape it all.
What kept me going?
My responsibility to my two young children is what kept me going. I refused to leave them without a mother. They were only a baby and a toddler at the time and they had a father who wasn’t always around and grandparents who only wanted to involve themselves on their terms, which was limited.
This all happened years before I was diagnosed with Autism, years before we knew both my children were also autistic, and years before realizing my daughter also had Bipolar. Medical trauma, grief, chronic pain, post-partum depression, family neglect, emotional abuse, isolation, lack of a proper diagnosis, lack of support from anywhere lead me into the worst autistic burnout I have ever experienced and without a proper diagnosis I had no idea what was happening to me. I thought I was losing my mind. I was diagnosed with PTSD during this time. This diagnosis would eventually grow into Complex-PTSD.
I have experienced burnout many times since, but never to the extent of how it was during those very dark, dark days of my late twenties/early thirties. Unfortunately, I am finding myself horribly burnout out again, more so than I have been in a very long time. I am 41 years old. My daughter will be 16 next month and my son will be 14 two months after that. One October night in 2012, my world once again began to fall apart. My husband, whom I had been with since 1998, sat me down and told me he didn’t want to be married any more, he didn’t want the responsibility of a family any more.
Things continued to get worse and worse. My husband was self-destructing from a life-long struggle with untreated severe clinical depression and he was taking the family down with him. I will not go into detail of the three years of hell that my family went through over this, but I will say that my son developed PTSD from emotional abuse by his father. My daughter grieved like her father had died, yet there was a stranger walking around with his face.
Fast forward three years, my husband finally agreed to get professional help and has since come home. We have spent the last year trying to rebuild our family. Five months ago we moved to a very isolated area with dream. We would build a house together and start our new life as a family, all four of us together. Unfortunately, life happens when you are making other plans.
We have been living in what can be described as a glorified shed with tarps for walls. It is the end of November. We have no plumbing or insulation. What electricity we have comes from heavy duty extension cords that are plugged into the meter outside and drugged into the house. We can’t run much on them or we end up popping circuits. We do have a wood stove, but with no insulation, it can only keep the house just below 50 degrees Fahrenheit, the bedrooms are even colder. We are miserable.
Due to unforeseen financial problems over the last few months, who knows yet when we will have plumbing. My in-laws’ house is about a football field’s length away. We utilize their kitchen and plumbing. They are very caring people, but their house is small and they are very elderly. My mother-in-law has had two strokes, is diabetic, has blood pressure problems, and needs round the clock care which my father-in-law provides. Their house is very unpredictable and stressful. It is hard to explain, but no one can handle being in their house for more than a few hours. We are looking at another six to eight more months without plumbing. It realistically could be longer than that.
Even though I call my husband “my husband”, we are not legally married any more. He made sure of that during those three years of hell. He recently has informed me that he doesn’t know what makes me happy and he doesn’t know how to meet my needs when it comes to our relationship. That really hit me hard. After all these years, he still doesn’t know how to be a husband to me (he has admitted that he has sucked at being a husband and father), but there is a positive note to this. He wants to learn and he is listening. Progress has been at a snail’s pace, though, painfully slow, but for the first time he is putting in real effort. He is committed and is determined to make our relationship work.
Then there is my employment situation. I have been a certified teacher for 18 years in grades Kindergarten – 12th grade. The 2011-2012 school year literally almost killed me with stress. Over the past four years I have slowly been transitioning myself away from working a daily teaching job. I can no longer physically or mentally continue working every day and also care for my two children who cannot attend a regular school day at a school. They are both homeschooled, but are also enrolled in our local Home Link program, and my daughter receives her education services at our local high school by attending only mornings Monday – Friday.
I finished my Master’s degree last April. I now officially have the credentials to say I am both a professional in Autism Education and a Science Teacher, yet I am still under employed and I don’t see how that is going to change anytime soon. As of now I have five invisible disabilities: Autism, Generalized Anxiety Disorder, Ehlers-Danlos Syndrome, Complex-PTSD, and Dyscalculia. I struggle everyday with chronic pain, Misophonia, anxiety mixed with depression, and I struggle to live in a world that is not designed for someone like me. I have been on ten different anti-depressants, five different anti-anxiety medications, and three different sleep aids. I have tried a variety of pain medications as well. I have paradoxical effects with all these types of medications. Nothing works for me and only makes things worse.
My medication is running. I have been a runner for 23 years and I fight every day to stay out of a wheel chair. Due to the continued degradation of my connective tissues all over my body from Ehlers-Danlos Syndrome, it is only a matter of time before running may be taken from me. I have already had to give up weight lifting, backpacking, mowing, gardening in other than large pots, picking boxes up, moving furniture, the list keeps growing every time another injury occurs or another body system begins to fail. I carry on, though. I just brace up my joints, bind up my torso, and continue to persevere. I have to, but it gets harder and harder when the feeling of hope just isn’t there. The chronic pain wears you down.
With all of this, I am still struggling in thinking about what brings me hope.
The first thing that comes to mind as I have been typing all this out are the two young people who kept me going before when I found myself horribly burned out, my two children. They are everything to me and I am determined to persevere above all odds for them, always.
I have been told by my own mother that she would never be able to do what I do. If it had been her raising my children instead of me, my daughter would have been sent away a long time ago. As for my son, his needs would also have been ignored just like mine had growing up, because he is so “high-functioning” in my mother’s eyes. Neither my son nor I are “high-functioning”, but we are quiet enough to be easily ignored.
Both my children have Dysgraphia and both are autistic (my daughter as an accompanying expressive language impairment and my son does not).
My daughter was also diagnosed with Bipolar II (but it may instead be Schizo-affective Disorder – Bipolar Type) with debilitating anxiety. She takes six type of medication either once, twice, or three times a day depending on the type. We have alarms set to help her remember to take her medication. She has been hospitalized once for suicidal thoughts and hallucinations telling her to use knives to kill herself.
My son was also diagnosed with Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, and Social Anxiety as well as Misophonia. He also struggles with re-occurring depression. He takes two types of medication once or twice a day depending on the type. He has been on suicide watch twice.
Then there is the glimmer of hope that comes when I look in my husband’s eyes now and see the man I married in there. In his eyes I see an older, tired, and struggling version, but I see hope there, too. He sees a future for us, a future that I thought we had lost that one October night when he decided to give up on me, our family, and the life we had.
I have not reached the same point where he is, but I want to. This place where we live now is where he grew up. This is his world, but it is not mine. This is why I am not at the same point where he is. This world is so foreign to me. The language is different, the mannerisms are different, the way of life is different, and I am cut off from my world due to our rotten living conditions. No internet and all my belongings, my tools I use to self-regulate and make my environment safe and comfortable, are all locked up in storage.
My senses have been on overdrive since moving here. Everything is too loud and too bright. It hurts here. Then there is the problem of my husband’s recent poor choices haunting us. During those three years of hell he involved himself with four women in ways he shouldn’t have. One of these women he purposely used to rip our family apart and my children and I caught him with her. Neither had feelings for each other, which just made it worse for me. This woman ended up marrying my husband’s first wife and they both show up at my in-laws’ house on a regular basis. They are also both invited to family gatherings, gatherings we can’t go to because of their presence. I am reminded of my recent trauma and loss all the time. I can’t get away from it. This has taken a considerable toll on me.
“Though, when we begin to lose hope, things can seem bleak. When we run into constant resistance and are prevented from reaching our goals we can start to feel like there is nothing to live for. If we can’t get to where we want to be and don’t feel in control of our life, what’s the point?” – Joe Wilner (How We Lose Hope and How to Get it Back)
I have been finding myself asking, “What’s the point?”
What is the point? Why do I keep going when all there seems to be is endless struggle and pain?
Because I must!
My life would be very different if I had been dealt a different set of cards. I know this, but there is no point in lamenting over that fact. I was dealt a certain set of cards and I have to live with what I was given and make the most of it.
Over the years, I have written a lot about persevering and not giving up. I have to keep on fighting. I have to keep moving forward. I have to keep trying to reach that light at the end of the tunnel. When I was at my darkest all those years ago, I kept telling myself that the tunnel will end and light will be reached again. I knew it would happen, because that was the only option available.
I am there again telling myself that this dark, burned out tunnel that I have found myself in will eventually end. It has to. I don’t know what I will find when I reach the light again. My life may once again be transformed into something I wasn’t planning on, but at least I will be there to see that transformation.
I will persevere. I will keep moving forward. I will keep on keeping on. That is the only option I have.
Perhaps that is where my hope really lies, by keep on keeping on . . .
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”
― Martin Luther King Jr.