What can I possibly know or say about this subject? I don’t look like I have a disability.
I certainly shouldn’t talk about it on Facebook. Isn’t that where people post all things positive? Give the impression that all is well in their world with smiling faces and carefully selected words?
In fact, I have hardly written anything for the last 6 weeks on this blog, because I have been unable most of the time. ***This is not a rant. I am simply trying to share something very personal with a goal to increase awareness and understanding.***
It’s difficult to share this even with friends, even family – to those who know my small accomplishments, and even the things I talk about eventually accomplishing, despite the amount of dedication and hard work they take, or have taken. What they don’t know is how much I have had to keep lowering my expectations for myself and my future. But I still have big ideas. 🙂
For many reasons, some of which will be expressed below, I have shifted away from pursuits in the academic and intellectual world and have re-entered the arts. Yes, I have returned to my first love, visual art, and I tend to alternate between painting and another of my loves, writing. This has happened gradually, due to an increasing number of challenges that, when combined, became insurmountable.
Gradually, I say, because I didn’t recognize the magnitude of the symptoms of sensory processing disorder (SPD), nor did I have a name for it until more recently. In these days, with so many chemicals we are exposed to daily, I just chalked it up to that, and tried to avoid exposure. That worked well, or so I thought, as long as I was a stay-at-home mom, or when I was a student and spent most of my hours in my own safe, home environment. I could come and go, to school or to play dates, or whatever, being that those were not environments I was exposed to each day, because I had breaks in between. Sure, I was conscious of the debilitating symptoms on and off, but the periods of rest ensured that I could recover, while I was still blissfully ignorant about my limitations or that I was merely “coping”. The fact is: I was always living with disability, which was not only invisible to others, but also to myself.
Friends and family have often spoken to me about being gifted, or blessed, or being a renaissance woman (aka multi-potentialite), and some have rejected me for such things. (If they only knew the curses that have come with the blessings!) Indeed, as I write it, there is no way I can avoid judgment for sounding like a braggart, but I don’t care what people think anymore. I have never profited from any of my talents. Schools will continue take my money for tuition, and I will continue to graduate summa cum laude, but I have learned after 3 degrees that it doesn’t matter. Besides, when a gallery requests my artist’s CV, they don’t care about any degrees or work outside of visual art. I have nothing there, because I’m self-taught, with the exception of the studio course in the first year of my BA.
The Masters degree I earned at seminary only amounted to more requests to volunteer in the church with teaching women or children, at least where I am living now. I have no patience or desire to deal directly with the ongoing issues revolving around women in ministry. It has been emotional heartbreak for me, to say the least, but I’ll stop there on that issue. Ultimately, however, it is the sensory issues which have destroyed my ability to volunteer, along with allergies to the mold in some church buildings, which I cannot even enter without paying for it, healthwise. My disability is such that I don’t get any communication from the church, which is to prove its invisibility and the lack of understanding in the community. People have no idea what I have been through. I’ve never been the recipient of hospitality (meals, visits, etc.), like those who have had other illnesses, not to say I want that at all. But I suppose that the few people I’ve told don’t really understand anything at all about what I deal with 24/7/365. And like Jesus said, “Forgive them… for they do not know…” So, that is what I do. But it’s lonely at times. I’ve lived here for 3 years now, and haven’t really found a church where I can be safe from sensory onslaught, or to use my “gifts”.
Perhaps my degree in education was a waste, because I didn’t know beforehand that it would only amount to a long wait for a permanent job while endlessly supply teaching (I discovered that I wasn’t willing or able to do that). But, even if I knew that teachers’ college was a demanding program, with no real down time away from the classroom, I had convinced myself that I was going to do it anyway. It wasn’t long before I felt exhausted with Mono and Bronchitis, to which I was likely susceptible because of the chronic dis-ease caused from my ongoing sensory issues (greatly increased from classroom triggers of lighting, sounds, smells, etc., etc.). Somehow I still made it through the program, determined to “succeed”, and graduated summa cum laude, but then I “failed” to follow through because of overwhelming fatigue. I ended up doing very little supply teaching, and then I moved farther north, where there are less teaching jobs. I would have made a great teacher, of children or adults, if I didn’t have SPD. I knew I could teach, because I found myself teaching often, but not every single day, and not in challenging environments. Alas, I finally realized it was something out of my control.
Such has been the cycle of my life; my successes eclipsed by my failures. And my failures have ensured that no one will promote me. For a woman who has prided herself in being capable and dependable, I now feel perceived as unreliable and unworthy. One might say that it has all been meaningless.
But that is only a snippet of my life. I don’t believe that is how God sees me. And I don’t believe that people are born with one purpose in life. Just as this world is constantly changing and we need to adapt to it, I am determined to adapt to my circumstances. If there is meaning to be found in all this, then I will also find a way to share it to help others.
I don’t know if I will ever use my education again, except for writing, or as a basis for something else I’m good at, which is research. I will be content that I was once a teacher to the best 3 kiddos when we homeschooled, now years ago. In fact, I am learning contentment in all things. It is a lifelong process. It also involves un-learning some things, like caring about what others think of me.
How can we judge another person, when we have not walked in their shoes?
Now that I am older (goodness, I am approaching a half-century milestone in only weeks!), I have seen how my perceptions and judgments have changed over time. Gone are the days when I blamed my parents for many of my enduring troubles, because I see this is merely history repeating itself, for don’t we all do this to some degree when we are young and think ourselves wiser than we really are? Instead, I can now say that I have walked in their shoes from time to time, even if only in hindsight of memory, and knowing a bit more about the nature vs. nurture influences in their lives that have continued into my own.
This awareness sobers my judgment, and heals over the wounds of the past, increasing my ability to love them more. And not just my parents… but other family members and friends, old and new, as well.
But, am I becoming more lovable? Even in isolation, due to my sensory issues?
If a tree falls in a forest, and no one is around to hear it, does it make a sound? If no one is listening, is it noticed? If I speak, will anyone listen? I suppose that is why I write. But will anyone who reads this comment? Does anyone want to know more about me? About my art? About SPD? Or something else? Will anyone read this to the end?
This is only part one. Part two will follow in a few days. Will there be a part three? I really don’t know. It depends if anyone wants to have a conversation.
But I am not looking for pity or sympathy. I’m looking for kindness, just like everyone else.
Until then, remember how much you are blessed, and be a blessing to others, in whatever small way is possible. It might make someone’s day.