Believe it! ❤
Some weeks ago I started an ASL (American Sign Language) course online – I regularly volunteer with children with disabilities and had asked a mom (whose four year-old boy both has autism and is deaf) for some ASL resources. Her son additionally suffers from a little bit of separation anxiety, which isn’t horribly uncommon with autism – when he comes to our volunteer play sessions, there are times that he begins to cry and it’s terribly tricky to discern what will make him feel more comfortable. While I was already interested in learning ASL (up to 50% of autistic individuals are non-verbal), this little guy was enough to get me on the road to finding a class…as soon as possible.
The awesome news is that I also volunteer with Special Olympics-driven skating sessions once a week that includes a number of children who are either hard of hearing or completely deaf. There’s nothing quite like being able to communicate with them – being able to sign even a single word is exciting! (I definitely have a way to go!)
A couple of days ago, though, I came down with a cold of some kind – as a result of contagiously coughing, I lost my voice – and I mean completely. Talk about being in someone else’s shoes…
Horribly uncomfortable a “bug” is for any of us, it’s nothing compared to what some children and adults have to deal with on a regular, and life-long basis. In a strange way, I feel thankful that I can’t speak because it’s an exercise in understanding what it *might* be like – while I consider myself to be one of the most empathetic people I know, it is impossible to fully understand anyone’s experience without being in their skin.
I have lost my voice on one other occasion – remarkably, I was 16 spending a month in France, with very little French under my belt. I guess life likes to test my ability to communicate (which – as is clear – is NOT always done with speech.)
In any case, it’s as the saying goes – you don’t always realize what you have until you lose it. I’d never anticipate not having the ability to speak was an easy road…but it is a welcome experience. (Now I’m not exactly encouraging anyone to go out to a concert and scream at the top of his or her lungs to deliberately subdue the vocal chords…I’m just saying, there is good to everything. Yes, including getting sick and losing a primary means of communication.)
Now my husband has a little bit of a challenge playing the guessing game as far as “what is my wife trying to say now?” He’s doing a remarkable job of deciphering, decoding, and understanding what I am trying to say, and that’s not easy to do! So I’m very fortunate to have the support and patience.
Going to the store is also an enlightening experience – I can’t say “thank you,” or “excuse me” as I normally would, nor can I respond vocally to others. That leaves me feeling a little bit awkward as reciprocal speech is one of the key forms of communication many of us learned from infancy. When I indicate with gesture and my lips that I have lost my voice, people either immediately begin to whisper or act altogether more gently – it’s incredibly interesting! (I actually can’t even whisper, as that puts more stress on the vocal chords than speaking does!)
The other side of it is that I’m derailed from my activities – in part I simply don’t feel up to them physically. The pain and discomfort though. . .I think about all the children with autism suffering from sensory sensitivities without the ability to say “those lights are hurting my eyes,” “this fabric makes my skin burn,” “my chest hurts….” What is life like for them? Many “behavioral issues” are a result of such a scenario – they don’t have a means to say what they are feeling.
For the children who are deaf or hard of hearing, thankfully they do have words at their disposal (albeit non-speech, hand / facial /body gestures.) I learned “sick,” “feel,” “bathroom,” and “okay?” as quickly as I could. Fortunately I’m learning many other words too…but knowing that it will take time, it’s important I know some basics.
Even if I was feeling better, my usual day-to-day would still be a substantial challenge – I can’t make a singe phone call, for one. I can’t ask for help locating a medicine at the store. If I were in an office, I’d have to type everything out (doable, but less efficient.) I certainly can’t breakdown a Ninjutsu technique the way I could by asking questions in class, and I definitely can’t teach or volunteer. I have to rely on gestures to talk to others I might run into in my own apartment building because I am utterly devoid of my usual method of communication…
So it’s been a remarkable few days…
While I’m sure it’s not fun to be around me while I’m loudly coughing, slower-moving, and unable to answer even the easiest question, I feel truly thankful for the experience. In fact, I’m taking the opportunity to review videos from the ASL course modules that I’ve already completed – I will hopefully be seeing the Special Olympics kids on Wednesday to skate and I know a few happy ones who use ASL exclusively. 🙂
I can be far too hard on myself at times. It’s landed me in precarious and damaging situations, so much so that I am not only more aware of it – all this time later in Life! – but, despite slipping, I am also more willing to work hard to get to the root of it. (I’m blessed to have the support in so doing also – that makes a world of difference.) Doing so, however, means being more vulnerable, but it’s a necessary part of growth and overcoming hardship – it takes (often uncomfortable) work to get to the other side!
I’ve come a long way, and weathered storms like most human beings (after the age of three!) and it’s important I remember that… It’s important for all of us to remember where we have been, what we have accomplished, and that we have more strength than we think – because it’s so easy to forget and beat ourselves up.
It’s also important to remember that we are works in progress. Recovery is a journey – It doesn’t happen overnight. Sometimes you can sail through the day, and others requires a moment at a time.
What NEVER slips my mind, though, is how grateful I am. No matter my flaws, my moods, my “humanness”…not a day goes by that I am unaware of how blessed I am to be healthy, and to be alive.
I remember that time I fell down the stairs, and had trouble with my legs buckling every so often – my body was eating the muscle from the inside out and I could no longer support my weight at times.
I remember waking up with eyes so swollen – one of many effects of hyponatremia – that I actually staggered back, not recognizing the stranger staring back at me. I stared into a reflective abyss confused, terrified, and wholly unable to see myself. What HAPPENED..?
I remember when getting coffee and adding something to it – even a drop of skim milk – felt like an impossible hurdle. 15 extra calories? Not then…
So when someone offers a kind word – whether of support of my lifestyle or some result of it…or simply asks for health or fitness advice – I feel it profoundly. At times I even want to cry because I am not only touched and honored, but I know what it’s like to NOT have health, to watch myself dying a slow and painful death. . .and what it took to get where I am today. (I am, incidentally, choked up with tears even writing this now…all this time later.)
To be active and fit is a gift I will NEVER take for granted. Not only in remembering my own experiences, but knowing those without the fortune to walk or speak or see. . .my eyes have been opened in a such a way that I cannot UNsee.
I am thankful to each and every person who takes the time to encourage, to ask for help, to offer a kind word – you motivate and inspire me just as much, if not more so. I work incredibly hard at it, and try my best…but I fail plenty too.
To know I’ve potentially lifted one other person – even if only temporarily – is an honor. It reminds me that my suffering was not in vain, and that I can give so much more having known it.
With gratitude. . .
I saw this a long time ago but it recently cropped up again…and I laughed, but with a shadow over my heart at the same time.
Much that there are areas in which I’m sure we all wish things could improve, most of us are a lot better off than we may remember at a given moment…
There are definitely days that instead of dealing with people who simply DON’T think…I’d rather try to dodge flying bats or killer whales. I’m sure bugs and penguins across the globe are not only cringing at my words, but that they might actually sit me down and say “gratitude is a beautiful thing. HAVE MORE, human.”
I can’t say they’d be wrong.