Disability, Grief & Looking Toward the Future

After years of therapy and hard work on the self, I had a certain sense of pride in all I accomplished to overcome so many of the negative childhood thoughts, feelings and behaviors that came from being a neglected child who spent her life as the family scapegoat and caregiver. One particular point of pride for me was choosing to live in truth; the truth about the world around me and the systems that keep us captive to unnatural and untenable lives that are devastatingly unhealthy, the truth about who the people in my life really are and what they’re seeking from me, and above all, the truth about who I am, what I need and how I live my life. My disability has changed some of that, and I realized recently it’s a key part of why I’m having such difficulty making it through the grieving process so important to finding acceptance with being disabled.

In unhealthy families, truth is something that’s denied to each individual in favor of the abuser’s worldview. If you don’t accept that worldview there are heavy consequences to pay. It doesn’t happen at the flip of the switch, it happens gradually over time, through subtle manipulation and constant conditioning and before you know it, your abusers worldview is your own. For children, this training starts at birth, so by the time you’re 8 years old and someone uses your prepubescent body for their twisted pleasure, the word “no” has become unutterable and you’re afraid to tell your parents for fear that they’ll adopt it as a new form of humiliation, or at the very least, blame you. After all, everything has already been your fault for years. By the time you’re 11 years old and taking care of your newborn brother every waking hour and managing the entire household while your 15 year old sister and the adults do their own thing, you no longer question if it’s “right or wrong.” When your mother forces you to live on the street at 16 “for your own protection,” you know enough to question why she refuses to remove the threat she brought into the house in the first place, but you well know your own value and no longer dare question that and long since gave up on the idea that anything is ever fair, at least for you. Concepts like fair and just applied to other people on TV shows. They’re make-believe. They have no place in your reality.

Living in one’s own truth requires a great deal of perseverance for even the healthiest of minds. We humans love to trick ourselves into thinking everything is A-OK. We bury our heads in the sand like ostriches anytime we’re confronted with an inconvenient truth, often to the detriment of our loved ones. My mother was an expert ostrich, who wore blinders just in case she couldn’t get her head in the sand fast enough to avoid the unpleasantness. If she stayed down there long enough, she just might miss the storm altogether. This wasn’t a special power, though. Anyone can be an ostrich and many people go through their lives happily remaining that way.

In fact, we’re hard-wired for it. Our brains try to protect us from certain truths about our lives that seem too painful to deal with. It’s our brain’s job to protect us from pain and it’s clever at keeping us from feeling that pain, which is every bit as real to us as that of a broken arm. Distraction is a great way to attain freedom from that pain. We have plenty to distract us from our misery these days, all packed conveniently into one little hand-held device. We don’t even need the distraction of jobs or people around us anymore. All we need to do is enter a passcode or swipe a fingerprint and we’re off to hours of mind-numbing, emotion-quenching memes of dancing cats and a world full of splendor.

As much as I value living in truth, I too get caught up in this world and find myself playing games. I’ve written many times about the devastating effects of my physical illness on my psyche and how I find myself practicing bad habits that I thought had long since been eradicated and my ability to remain in truth is one of them. Everyone talks about the physical agony of chronic illness, but so few talk about the emotional agony that comes with it. It’s intense and overwhelming and something each of us must go through no matter how we felt about our lives prior to becoming completely disabled. It is something we must also continue to grapple with.

For many of us, disability isn’t necessarily a permanent state. Our health fluctuates and changes, sometimes naturally, sometimes due to new therapies, and sometimes it’s a matter of getting properly diagnosed, treated and learning how to deal with our new bodies. For most of us, our health is in a constant state of flux, as is mine. What this can mean is that we often experience renewed hope, often having those hopes repeatedly dashed against the boulders of failure. Often what we expect to be life-changing turns out to simply make life a little more comfortable, but doesn’t send us back to a life of productivity. It might make us more comfortable or helps us stretch another hour of activity into our days, but it hardly makes us wholly functional. When that reality sets in, we must grieve anew for all we’ve lost and hoped to gain.

As I have found some things that make my life more manageable and more comfortable, I can’t help but fall victim to these dreams. As my cognitive impairment decreases, I begin to think that perhaps whatever connections I’m still missing that relates to creativity and organization will mend, allowing me to get back to creative writing. As my fascia heals and I slowly begin to rebuild much needed muscle, I think I’ll build enough strength and energy to reenter the workforce and we can think about buying a home and having long-term goals again. Maybe we can even still foster or adopt if I get back to work. Suddenly, a slight down-tick in symptoms and up-tick in energy means I can have all those things denied to me by a broken body and a system that devalues the differently abled.

As disabled people, we need hope. We need things to aspire to and look forward to and I’m sure there are a million resources that say “If you only keep a positive attitude…” but these hopes can be equally dangerous things. Dangerous because the human mind doesn’t like to dream in realistic ways. Dangerous because no matter how much we distract ourselves, the moment will always come when we have to admit that they are really nothing more than dreams and our reality belongs in the here and now and then we must turn once again to grieving all those missed opportunities.

Finding acceptance is a critical part of the grieving process, but it’s a lot different to grieve our former selves than it is to grieve a loved one. We must accept that someone is gone, but that is easy when they’re six feet under or a pile of ash. You’re still right here, even if you’re a very different version of the self than you ever knew before. For someone whose health is in constant flux, it feels impossible. It feels dangerous. Accepting feels like giving in, admitting that the fight is over. Perhaps we haven’t lost the war, but we’ve lost the pinnacle battle if we accept our own defeat and it feels like there’s no turning back.

We have to separate what we know from our intentions. What we know is that the life we used to have is one we can never have back. It’s too late. Everyone else has moved on, times have changed and life will never ever be the same as it was no matter how hard we wish it and we are no longer the same people. Someone else has long since taken that old job. Someone else has long since lived the dream we were holding out on for better days that never came. Our childbearing years have left us behind and childless. Our dream homes were long since foreclosed upon. Our friends and family who have abandoned us have long since moved on and why would we want them back, even if they hadn’t?

A refusal to confront these losses, to properly grieve and let them have their place in our lives by taking ownership and allowing ourselves to move through the stages can have very negative consequences on our lives overall. Holding onto these feelings made me incredibly angry and bitter, causing me to revert to old learned, very bad habits of self-protection.  Often, I’ve closed myself off to people and experiences that could have benefited me. I’ve lost time and progress in my own healing and damaged core relationships with my refusal to accept the full brunt of grief. That’s the irony of denial, we practice it to protect ourselves, yet its destructive force will rob us of innumerable gifts if we allow it.

The reality is, we can never go back. We are older and wiser and different. It doesn’t matter how much better we can make ourselves, we are no longer the same people, inside or out, and we shouldn’t try to be. But there is beauty and value in our lives as they are and we can focus on that if we choose. Grieving the loss makes that a lot more possible, and the key to that is accepting that our past selves and lives are gone forever.

It’s a work in progress and a long process. We’re all susceptible to getting caught up in reminiscences and dreams of the past. It’s still difficult for me to see commercials for pregnancy tests and diapers sometimes, difficult to see the many proud pics of little ones from friends on my facebook feed. It’s hard not to let the green-eyed monster take hold every time a former peer celebrates the release of a book. But the key is to allow myself to feel those feelings, examine them and then put them aside, reminding myself that those things are gone for me and that’s alright, because I’m at a different place in my life and I’m working on finding new purposes for that life.

It’s okay to have the feelings. It’s what you do with them that matters the most. If we refuse them altogether, they will still escape through our dreams, our unbidden thoughts and ideas, our secret wishes. It will affect every part of your life and how you feel about everyone and everything, sometimes even causing us to scapegoat someone dear to us who really has no blame whatever in what’s happened to us, simply because we need something visceral to hang our blame on.

That doesn’t mean we have no future and change will never be on the horizon. What it does mean is that you no longer hold onto ideals and dreams of the past, instead forging new, realistic ones for who you are now, based on the present instead of the past. This way, you can look at your life from the perspective of reality rather than dreams of the past, of real accomplishment in the moment instead of comparing yourself to a person that no longer exists. Only once you stop pining for what you’ve lost, can you begin to imagine a future that works with who you are now.


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