Having spent the last 13 months in a nursing home, I have gone through a gamut of emotions. For the first two months, I refused to accept that I would stay there, and my desperation reached a pinnacle during a crisis in May of last year (which I have described here and in other writings and won’t take the time to rehash now because it isn’t the point; in fact, to spend time focusing on the depths of despair from my past is the complete opposite of my point in this post). When I was discharged from the hospital stay that resulted from that crisis, I returned to the nursing home and thought I would return to despair. I sobbed throughout the whole car ride (I wonder what the driver thought of me!). When I got back, I began to unpack my things. Though I had no intention and no foresight that it would happen, I became a new person sometime during that unpacking process. I began the process sobbing, and by the time the bag was empty, so was I empty of any sense of despair. Where there had been a feeling of being crushed, there were now two important things in its place… peace in my heart, and sheer determination in my mind.
From May of last year until January of this year, I had reached a sense of personal peace with my circumstances. I knew that my mom goes far beyond having my best interest in her heart; in fact, she would lasso the moon, if I needed it. My mom has her head on straight. She’s quiet, one who takes things in. She is wise, one who wrestles with those things to make sense of them and make them fit into the rest of her knowledge. She is faithful, one who believes in God (though that is only in more recent years) and one who believes in the ability of her kids. I trust her judgment implicitly. So, when she told me, told my doctors, told anyone who needed to know that the “best place for me” was in the nursing home, I trusted her. After all, it wasn’t as if we hadn’t sought out community-based services. I had already applied and been denied. We were told there was absolutely nothing for me “out there,” so I made peace with being “in.” I was generally swept up in pursuing my Master’s (online, from the nursing home), attending social groups at an autism nonprofit we found nearby, and volunteering there, too. I found ways to do what I loved to do and to further my professional career as an autistic advocate. The nurses and aides at the nursing home treat me like their own family and help me to make the best of a less-than-ideal situation… but, I struggle with the doctor–his personality and his view on health and illness. I worry about getting good care while under his care. There was pain in my days; there still is pain, no small amount; heck, there will always be pain due to my medical issues. And yet, the peace in my heart was the predominate force, and I found countless ways not just to bring joy along with me but to make it, ex nihilo, wherever I went.
Sometime in January, I ended up on the phone with an employee of the county’s Center for Independent LIving. I can’t remember why i was talking to her; it wasn’t about community services to start, but that’s where the conversation led. She believed that I should have been approved for those services. She said that I couldn’t appeal as it had been too long, but that I could reapply, and then appeal if needed. She gave me some pointers on where we might have gone wrong before (in fact, it turned out to be at the fault of the nursing home doctor failing to turn in her form!). The employee of DON Services (Disability Options Network, which is the Center for Independent Living in my county) has been instrumental… she was the spark that got me thinking about the possibility of being on my own again. That spark situated right between my shoulder blades. I went through the various interviews with the state, and the spark grew into little buds as I considered things like working with staff again, having access to a shower, devising strategies to stay on top of the veritable plethora of medical supplies I require, and even the thought of not having to say goodbye to the Goose (my kitty) for any more than a few hours. Whereas some of those thoughts would have struck terror in me in the past, the suddenly filled me with something new–hope. The buds grew into wings.
I realized that the last year has changed me. Many young adults are ready to leave home at 18. I was not. Nor was I ready at 22, when I actually did. But now, at 26, I have my wings… and I am ready to fly.
But what good is flying without a destination in mind? When I think about being on my own once again, having room to spread my wings, I think about the ways in which I’ll put my peace, my determination, my strength, hope, joy, and faith into use.
With my peace, I will spread my wings of independence. Whereas I used to feel terrified at the thought of being on my own, I now feel peace. I realize that there will be upsets along the way, but I trust in my internal peace to be the guiding force.
With my determination, I will fly high and, simply, do it. Determination to make more, be more, see more, do more is something I lacked. I didn’t have a force within me to grow increasingly capable in ways other than academics. I wallowed in indifference. I have put my penchant for language into my Master’s, so that I can use my great love in a way that will allow me to find a niche of employment (in teaching online college courses). I seek out professional opportunities, to write and speak and educate the world about autism. There was a hole within me when it came to having dreams and wanting to pursue them; in fact, I thought myself unable so I dared not think on what I wanted to do. Now, I realize that I am capable and I am determined to make a life for myself.
With my strength, I will fly to outward expression as I tell my story with with unashamed truthfulness about where I have been and no pretense–just candor–about God’s role in the person I am today. I will do my part to make sure that my pain and struggle was not purposeless but something from which others will benefit. I live out my life… unashamed about who I am, quirks and all, in the One who makes me who I am.
With my hope, I will fly to confidence in living not with knowledge of what the future holds but with full belief in God’s promise that it involves plans of prosperity (as the Lord defines it, not as humans with the total lack of foresight and imagination).
With my faith, I will believe in myself and my right to a place in this world, in my autistic brothers and sisters and their right to a place here, too, in my family and the rock we are for each other, and in my God who goes before and behind, around and inside, above and below, and most of all, within each of us. I will seek to speak love, act in love, and be love with every word, action, and thought. Those are not words I say lightly.
With my joy, I will fly high, with a life that sings a song… the drummer behind it might be a little different, and the tune might not be one you’ve heard before… but the harmonies are glorious and the melody is all my own.
I used to think that “home” referred to a place; I’ve always been extremely attached to my mom and stepdad’s house, which I have called home since I was just four years old. As I got older, I came to think of “home” as my family… wherever they were, so would home be. But now, I realize that “home” is something in my heart. More accurately, Home is Someone within my heart, Whom I carry everywhere I go. Home brings me peace with my circumstances, determination for my future, strength to be myself, hope for good days ahead, faith in myself and the people around me, faith in my Father, and joy… joy… oh, so much joy.
I cannot wait for what lies ahead.