(There are SOME exceptions. Like going to see Zakk Wylde play. There’s never a struggle for that one…)
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. 🙂
Some days are good, many are great, and some feel insurmountably uphill. I really do try my best to see the world as “I’m thankful I have a glass” as opposed to “it’s half empty or half full,” because I actually do harbor that much gratitude – life is a gift on every level.
On the tough days, though, I give myself so hard a time it’s nigh unconscionable. While I have uncovered the part I had to play in some disastrous situations of the past, it is also important to remember that I didn’t deserve bad things…and neither was I the cause. It is important that we ALL remember that – we are nothing more than a bundle of experiences and lenses colored by those experiences. It isn’t always easy to step back – recovery takes a lifetime, not just a handful of years.
It’s also important to be gentle with ourselves for our shortcomings – many of which, I daresay, we are neither proud of nor want! Frankly, I’d love to not have some of the conditioned responses I have. As a person who knows I have a choice in everything surrounding ME (my attitude, my actions, my inactions, my REactions, my responses…) it frustrates me to the hilt that I am unable to “will away” the things I do that I can’t stand. That said, I’m also not less of a person because I struggle…and neither are you.
While I am acutely aware that without a “yang” there is no “yin,” I sometimes need a reminder. A friend today gave me one such virtual hug… Without the storms and darkness, we aren’t able to have or appreciate the calm or the light in life. I really believe that both are necessary, and that product of both is a life that is collectively more (far more!) beautiful than it is not. . .
“Progress, not perfection” as it goes… I don’t have a right to judge myself or anyone else – I know deep down that I try to be better each day, and I know (in advance) that I won’t always be able to make that mark. In spite of human flaws and fragility, I see so much good in the world. Through the words and support of others, I also have the comfort of knowing I am not alone, and that the personal difficulties I have weathered in my own life (or how I have been affected and altered by those experiences) are also not so strange and unusual. In fact, far from it…
Some days I need a spiritual hug. Others, I require room to breathe… Overall, though, patience, positivity, and understanding are always welcome, and I’m thankful to have that in my life. What a joy to know that the journey is one we never have to make alone, and that the darkness will always give way to light.
This is so…SO…much easier said than done. But it is – no exaggeration – a key to healthy living.
Me? I’m still working on this nearly 40 years in!
The “could”s and “should”s we impose on ourselves are incredibly damaging, and often the source of a great deal of stress. The other day someone said to me “if only…” and recited a beautiful and perfect scenario (pitted, by the way, against a reality that didn’t turn out exactly that way.)
But my response wasn’t to agree – instead I said, “I believe I am where I am meant to be and that things have happened in this way, with this timing, for a very specific reason. Often in the moment I wonder only to find out down the road that everything fell perfectly into place at the ‘right’ time. I wouldn’t change a thing.”
I guess that means I’m leaning on a whole lot of faith, the belief that magic and miracles exist, and that the Universe does deliver. Now that may feel a lot more “unrealistic” to the naysayer, and definitely to those who land themselves with the “realists.”
No problem! You’re entitled to that view but I – having seen the supernal realm divine a few spells that altered the course of my own life (in very happy ways) – am going to keep airing on the positive side. I also ascribe to the idea that I will attract what I put out – as the kind of person I am, I need to watch this on a regular basis, and shield myself as much as I can from the negative “stuff” floating in the ether.
My skating coach gave me a card when I was just a teenager and it had a picture of someone watching puzzle pieces float down from the sky. . . When he stepped back, he realized he was standing on a vast puzzle beneath him, and everything was fitting perfectly. The card read, “sooner or later, everything falls into place,” and I never forgot it.
I trust in the timing of the Universe because is hope is always an option. The sun rises without fail, whether we see it or we don’t. I therefore believe even in what I cannot see. . .and when you get down to it, that’s where the magic begins. . .
It’s amazing how often I’ve caught myself imposing “should”s in my own life… And it’s a habit that is neither helpful, nor based in reality. But it happens…and I’m especially reminded around the holidays.
For one thing, I feel like every time I check out somewhere I’m asked if I want to make a donation to a charity. For another, it’s holiday season… This time of year comes part and parcel with the ringing of bells. Incessant ringing, and I don’t mean Santa OR his sleigh.
Stationed outside each supermarket (which I frequent nearly every day of the week!) will undoubtedly be a Salvation Army post for a bundled individual and a hanging donation bucket. For whatever the reason – and it’s definitely self-imposed – I always find myself feeling guilty when I pass by…or I say “no thank you, not today.” You probably do the same thing…pour a bucket of guilt over yourself for no good reason…?
We collectively need to STOP doing that!
I find myself reasoning it out – audibly sometimes, though mostly internally….
I don’t really know the charities some places are asking for money in support of. I remind myself that we give to a lot of charities, and physically volunteer. On a regular basis! We do it because we love to help and to make a difference, so that should be enough.
What’s with all the guilt then?! Am I embarrassed that someone will think I’m a cold-hearted person? Is it because I think I don’t do enough? Honestly, I think it’s a little bit of both…but I *try* to stop myself these days because:
- I have come to admit that I’m unjustly punishing myself and feeling guilty for no reason
- I know I give and that is (or, here we go with the s-word, “should” be) enough
- It doesn’t matter what anyone else thinks – I never owe anyone an explanation or justification for my choices. Neither do you!
- We don’t do any of it for the recognition, but rather to make a positive impact…so the audience isn’t necessary, and I don’t have to burden myself with that aspect of it
- We also – and this is a big one – don’t have to spread ourselves thin financially, physically, or otherwise to prove to anyone that we’re a good people! We already know that about ourselves…!
So when you say “no” at the checkout, or pass by the ringing bells… Or if you don’t chose to throw money to a friend raising some for their own favorite cause…BE OKAY WITH THAT. (I’m saying that to myself too!)
You don’t need to feel guilty. . . or wrong. . .or less-than. You do what you can, when you can. You work hard for what you earn and you aren’t a bad person for wanting to save up some of that for yourself, your family, and your future.
So let’s stop with the self-deprecation. We DON’T deserve it.
We all have charities in which we believe…
We all do our part, and our best to help where we can.
And…should we be unable or unwilling, that is perfectly, 1,000% OKAY.
Some days, we just need a little extra self-love and rest. As an active person, sitting around makes me nuts (and ugly!) but if I don’t listen to my body, things will get worse...fast.
We all need to tune in to what our bodies are saying, and to give ourselves the rest we might need from time to time. As I’ve gotten older, I’ve needed more of it…and that’s okay!
It’s important not to beat ourselves up for wanting or needing the respite – as a dear friend once said to me “once I’ve made the choice to rest on a given day, I embrace it and let go of the guilt.” It’s easy to feel like we are doing something wrong but as she – and ancient wisdom (or Gandalf if you’re a Tolkien fan!) points out – we only have the time given to us. To accept and appreciate our decision means we are free to enjoy the present, allowing our body and mind to get what it so richly deserves.