*** I have been cautioned by some about sharing the truth of my experience right now due to the level of darkness it involves which, of course, is reflected in my writing. While I respect that advice and do want this space to be one of hope and encouragement, I cannot in good conscience, omit significant stops along our journey simply because they many incur judgement or because they are not infused with messages of positivity. Some parts of this voyage Are Not Light. So, after a few days of working through my fears of being stigmatized and judged, I have decided to post this, publicly, to raise awareness of the very real mental health challenges many special needs parents face. I admit fully that I am dwelling in a place that is indeed one of the darkest I’ve ever been, but I also accept it as a temporary, necessary and valuable part of my journey. I share this not for sympathy, advice or support. I share it for those who are here too, for those who seek to fully understand the special needs journey and also, in honor of the opportunities within each step of the Odyssey, no matter how messy or imperfect they may look. Trigger Warnings: Mental Health, Depression, Suicide ***
The COVID Burn
Although I do not have the actual virus, the COVID world is literally suffocating me right now.
The broken sleep, interrupted by fits of anxiety, the non-stop attempts to entertain and engage a child who is 100% at my mercy for his ability to participate in life, and the heavy weight of guilt for not being able to give him enough. With the growing numbers of infections, so too, has grown the heaviness in my heart, facing the prospect of more quarantine, more isolation… more distance everything. As the school districts announced their ongoing closures, another 7 billion pounds of pressure climbed upon my shoulders. I will continue to be, not only Oliver’s mother, but also his nurse and his one-on-one aid and his occupational therapist. I will be his physical therapist, his teacher, his speech therapist. I will be his advocate and his friend, his only playmate and his only hope of physical engagement with his world. I will continue to be his everything. And that burden is unbelievably heavy.
Added to these responsibilities are the pressures of trying to make it out here on our own, the extra support family members require right now and a month-and-a-half of moving that sapped every last ounce of energy left in me. I used to think that I’d reached the burnout out stage before. Turns out I had no idea how many more levels of burnt out I could descend before I actually hit bottom.
I know I’m not alone in feeling the effects of this new world of isolation. Many posts on my support groups have taken a turn from shared messages of hope and joy to questions like “I love my child and want to hold them forever but… does anybody else just wish it could all be over?” When I read those things, I think, “Yeah man, I’m there. I do. I know how you feel.”
I stare into Oliver’s beautiful almond shaped eyes and it seems as if he is willing me to keep going… like he can feel my struggle. I send him back telepathic messages saying, “I’m too tired baby. I can’t do this anymore. I feel like I can’t go on. I’m sorry I can’t be more for you right now.”
Some days, my tears just won’t stop. I am exhausted all day long. My normal coping methods aren’t working, and I feel like I am continuously… Failing. It’s like I’m stumbling through a deep dark forest and roots keep tripping me, one after another. I fall and get up and fall again and get up but each time it gets harder to rise. I just want to lie with my cheek pressed to the cool forest floor and REST. These feelings have been gaining intensity lately, so today, I took a step toward addressing them and made an appointment at a mental health clinic.
The HIE journey and life with Oliver holds endless lessons. One of the most significant, for me, has been the realization that some things in life will never be perfect. They won’t ever be fixed in the ways I’d like them to, and sometimes they require interventions that are outside of my narrow window of preference. My battle with depression has followed this same progression of acceptance and has reached a point now, that I must turn within and be honest, I can’t do it by myself right now. I need help.
Before Oliver, I was obsessed with natural and idealistic living and felt that any departure from that was only a failure of our humanness. Yeah well, a child with a massive brain injury, saved by heroic medical intervention and left with severe disabilities and complete medical dependence, will change those kinds of ideas real quick.
My views regarding what I find acceptable in Oliver’s care have relaxed over the years but the utopian views for my own health have been slow to follow. I approach Oliver’s care with compassion and understanding but learning to care for myself with that same level of kindness has been much harder.
As I cried in my mother’s arms this morning, I whispered, “I feel like a failure. I should be able to do this alone.” As a fully embodied Virgo, subject to lofty ideals and perfectionistic attitudes, struggling with my mental health does not look ideal. This COVID scene, though, is just not my place.
Although I practice presence and acceptance as much as I can, I keep falling back into my desires for a warm and loving world. I hate hiding behind the stupid masks (This is NOT a political statement!). I hate the social distancing and the hypervigilance and the fear in people’s eyes. I hate the isolation and that moment of hesitation when you see a friend but pull back from the hug you can no longer exchange. I love my community and connections. I value deep meaningful in-person interactions. I love to hold my people close. I want to go back 6-months to a time when life felt safer, more secure and so very supported… back when things weren’t easy, but at least they made just a little more sense.
I miss my respite worker and my other besties who always helped me laugh my way through the sorrows. I miss those school hours, during which I set down all the responsibility of Oliver’s care and shook off the fatigue, knowing Aaron had it covered. I miss our days at NAPA, where my toddler ran me ragged but Oliver received the very best therapy imaginable from someone other than me.
Today as I walked into the mental health clinic, despite their smiling faces, I felt ashamed. Ashamed that I am stuck, and I know it. Ashamed that I can’t keep going like this. I felt scared to fill out the paperwork honestly, each checked boxed another broken thing I cannot fix in the way I want.
As I sat with my eyes closed, waiting among the other ‘mentally unwell’ people, for my name to be called, I wondered, ‘Why do I feel so ashamed of this? Why don’t we treat a mental health appointment just the same as any other doctor’s visit? Doesn’t everyone know by now, that we can’t separate our mind, body and soul? Why is there still stigma attached to this part?’
So, maybe it’s the apathy of depression leading the way here but I’m gonna go with it. This post is my contribution to normalizing mental health concerns and acknowledging the interconnectedness of our beings. Are we supposed to be ok right now? Especially those of us who are caregivers without respite or any hope of help in the near future? Should we be ok surrounded with the fear and hypervigilance of our current world and its amplification of the PTSD and ongoing trauma we, as special needs parents, have felt since day 1 of our child’s condition? Was there supposed to be a seamless transition from working with a village to doing all of this alone?
I think the answers to all of these are No! We’re not supposed to be ok right now, feeling nothing, perfectly at peace without a ripple on our water. Our world is swirling around us, each day another horrifying or hopeful or depressing or confusing headline. I feel like I’m trapped in a tornado of transition and honestly it’s fucking killing me.
So today, I went to the clinic. Today I asked for help. Today I checked the box about the suicidal ideations and inability to concentrate and disinterest in activities I normally love. Yup. I’m there, seemingly all of a sudden, at my edge. Every part of me is shutting down and I need help to climb out of the hole.
I must say that I am still a little afraid to put this out there and admit how badly I’m struggling right now. I’d much rather be seen as a pillar of strength than a pile of rubble. But I find that there is a tendency, particularly among those in the special needs community, to sweep the broken shards of our most vulnerable moments under the rug, because let’s be honest, our lives are pretty hard, and a lot of the time we’re just trying to get through the hours, without any extra emotional energy to go willingly into the honesty of our darkness.
But with the high rates of mental health challenges among special needs parents and caregivers alike, this topic desperately needs to be talked about and normalized. So, the best thing… maybe the only thing… I can give right now towards that effort, is not advice or forced positivity. It is my unadulterated experience of each plateau of this journey. Some of them are beautiful and some of them are not. But certainly, each one has its own purpose within the Odyssey.
If you are feeling any of this too, please know you are not alone. I hope you reach out and get the help you need, in whatever form that takes. Families like ours don’t typically thrive in a vacuum. It really does take a village to keep our people strong.