So You Think You Can…

I am fascinated by the mind/body connection. I listen, enthralled, to stories of people whose bodies have betrayed them in one way or another. Either through disease, or accident, or whatever trauma has taken control of their lives and their physical well-being. Intrigued to find out how practices such as hypnosis, or visualization, can aid 10-fold in the physical healing of a body. Yes, do the physical therapy. Do the physical work it takes to make your body physically stronger than it once was. But also take the time to literally see yourself doing what it is you want to get back to doing. It makes a world of difference.

You’ve heard about that study where a group of students were asked to come to the gym and take a number of basketball free throws? As a group, having not really been particularly sporty, nor having had any practice, they only did fairly well at this task. Then they were divided into 3 groups.

The first group was sent away and told not to do anything towards improvement in this for 30 days. No practicing, no nothing. The second group was told that they needed to practice for 30 minutes a day, every day, for the 30 days. And the third group was told to take the time every day to only visualize themselves back at the gym, taking - and making - the shot. No actual practicing. Just the visualization exercise. 

Well, at the end of the 30 days, when tested again, the group who did nothing was just as successful- or not - as they were before. No improvement. But both the group who practiced, and the group who just visualized, increased their success at making baskets by virtually the same percentage! 

Visualization works. I'm tellin' you.

I am also completely in love with watching shows featuring dancers. Especially So You Think You Can Dance and, to a lesser degree in recent years, Dancing With The Stars. Man! The human body is just so fascinating! What a person can learn to do in a week, or less, of intense training and practice. It’s just incredible. SYTYCD does start with contestants already trained in particular styles of dance, yes. But then those dancers are asked to perform in styles completely unfamiliar to them. A tap dancer told to learn the waltz? A crumper performing a modern dance piece? Week after week these dancers train and learn and practice and then perform. Moving their bodies in beautiful ways, just as if they’ve done this their whole lives. 

I’m not trying to discredit the hours upon hours they put in, working their butts off to get to that final performance. But they do only have a week to get there. That’s it. And somehow, every week, they arrive at their performances in beautiful, awe inspiring fashion. 

What I’m saying - the human body is an amazing, complex piece of machinery, able to do so much more than even its keeper might ever think possible. Whether through hard physical practice, hypnosis, or visualization - or all of this together - a person can break through so much pain, stiffness, and physical struggles to ultimately come out movin’ and groovin like the sleekest of top notch dancers, runners, basketball players, or whatever physical prowess it is you have your mind set upon achieving. 

So how does this relate to me? Hello there! Please let me introduce myself. You may think you already know me. I’m Amy! Of course! Yes, this is true. But now I’m post-surgery Amy. You may be more familiar with my pre-surgery persona. 

I gotta admit, I thought my pre and post surgery selves would be instantly and wondrously vastly different from each other. Most noticeably in the area of pain vs. no pain. Two totally separate people! And I thought that pre-pre surgery self, capable of easy movement with little-to-no-pain-or-numbness, would thunder back to me like an avalanche. Just like giving birth. It hurts like hell, but as soon as it’s over, it’s forgotten. Replaced by baby snuggles and love. The same for me, right? Surgery = get up and start getting on with my life. No more leg or back pain. That chapter is over! Time to start getting back to living pain-free.

Uhhh… well, not so much. Alas. My legs still hurt: My back hurts if I sit in the wrong way in the wrong chair, for too long. Getting up from a seated position is still the worst, although maybe slightly better. It all still feels much the same as before, honestly.

But, I’ve learned something.

I’m doing Physical Therapy now and, in going through those motions, I now see how incredibly weak my legs have become. And, more interesting still, I see how much weaker my right leg is compared to my left. My right leg has always been my stronger, more dominant leg! What the heck happened to get to this point, where it is plainly presenting as weaker than my left?! 

I’ll tell you what happened. My pre surgery back pain increasingly got worse and worse, encouraging me to walk and move less and less. My main goal in life, increasingly so over the last 3+ years, was to get myself from one chair to the next. That’s it. So of course my legs got weaker and weaker. My quads, which is all I used to have to keep me moving, are now shot. Now it’s my upper leg muscles on the insides of my legs that are doing all the work. So, fine. This is a main goal of PT. Build up my quads again. Get me back to 3+ years ago Amy as best we can. 

Still. It’s a bit disconcerting, disappointing and dissatisfying to experience all this when I thought for sure this surgery was “the answer” to all my woes. I know the surgery was a success. My surgeon did, in fact, detether my spinal cord, freeing it up to hang loosely as it should. It no longer stretches or pulls or causes me pain in this way. So any remaining pain comes from something else. Like weak muscles. Weak muscles can be built up. That is what my focus is now. 

Historically, I have hated PT. I’m fine to do the exercises when I go, but I’ve been terrible about doing the at-home regimen. And the last time I went, a few years back, even though I liked the therapist herself, she just had me repeat with her what I was supposed to be doing at home. Nothing really extra. But now, I really love my therapist and see that she is pushing me hard during our sessions, in conjunction with the different things I’m doing at home. And I am doing my at home exercises every day as she has laid out the plan. Plus! She is taking time each session (twice a week) to massage my lower back, particularly with the goal of keeping scar tissue in motion. Not settling in one big, spine-tethering clump. This is my favorite part of our sessions. Afterwards, my back feels much less pained for several hours. So much so, that I tend to forget to get up every 30-45 minutes to walk around a bit. My mind isn’t on my back. I forget. But I do ultimately remember and get up to move as often as I can. "Motion is lotion", after all, as my physical therapy location likes to profess.

And by the way, I have noticed now that I generally do want to walk and move. As opposed to my before practice of moving from seat to seat. So, there’s that. 

I’m also interested in this whole mind/body thing, taking the time to picture myself walking and moving easier, much more pain free. I personally have also had the experience of speaking out loud whatever I wish for, and having that come to fruition. Several times in my life, I’ve spoken words out loud for what I want, and by and by, whatever that is I want, happens. So - I am speaking my goals. I am visualizing my movements, I am physically doing the exercises to get me to where I want to be. 

Whatever it takes. I’m there. I’m doing the work - in whatever form it takes. If I can think it, I can do it. That’s really been the way for me my whole like. Screw the doctor who saw my X-rays (but not me) 20+ years ago and just decided, “well, clearly she’s in a wheelchair.”! No, I’m not! I wasn’t then. And I only use one now when needed because of pain and, it turns out, weakness. But, excuse me sir, I can do whatever it is I want! Always have, always will. It may not be as effortlessly as for you. It may take me more time or practice or just having to do whatever thing in the way that works best for me. But I get it done. To watch me do a thing, one might think, “oh, if only she’d just let me do that for her, it would make it so much better for her.” But, no. I do things in the ways that would best for me. To do things the way I do them doesn’t feel challenging to me. It’s just the way. No big deal to me, even though others may perceive it as more challenging than necessary. We all do things the best way we know how. I’m just living my life. I’ll get what I want done. I promise. 

Anyway. Motion. Vision. Practice. Proclamations of goals desired. Adaptation. All of this working in conjunction. Whatever it takes to meet my goals, I’ll do it. I’m like the Little Engine That Could. I think I can, I think I can.

And I will.  

An Open Letter to…

I wrote the following the other day to a couple of old friends who happen to also be living with chronic pain. We 3 have recently kind of formed a little support group of sorts for each other as we deal with what it is we each live through. As I wrote this to them, I just typed. I didn’t read it back or self edit or anything. Now, for this blog post, I have taken that initial spewing of emotions and cultivated it into something more. Edits here, additions there, grammatical fixes everywhere. And now, I submit to you, the following…

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I don’t know what I want or what I’m looking for. To never bring up my chronic pain publicly feels like I’m not being true to myself. Like I’m sparing others from having to take a second and remember that it’s not all rosy over here for me. Or, more probably, I feel like, yes, I actually have brought it up enough already. I should be mindful that it’s not all about me and no one has to keep hearing about it - they know already. God forbid I upset anyone else because I keep talking about how much my situation stinks. I wouldn’t want that. Of course. 

And that leads me to the realization that I really don’t want my writing to be all-pain-all-the-time because… what’s the point in that? It keeps me focused on it, and I get people to remember for a second what I’m dealing with, then they mindlessly (or genuinely, I don’t know) give me a “caring” or “sad” emoji before they continue scrolling on their merry way, soon to be distracted by a funny cat video 4 posts away? So what? 

No one gets it. No one could. Okay, not no one. My husband and daughter get it probably as best anyone could without being in my shoes directly. And I feel like you both get it, too, as you manage your own chronic pains and conditions. Anyone who’s lived with severe chronic pain knows what it’s like. But still. As I’ve said before, pain is a very personal experience. A very lonely, isolating experience. You know what it’s like for you. I know what it’s like for me.

Still, the fact remains… I fancy myself a writer and one of the best ways I know to get my emotions out and to put everything in order for myself is through the process of writing. It helps me. But I just, I guess, I also want to affect people with my writing as deeply as I can to let them know exactly what it is I’m trying to convey. And people everywhere with chronic pain - I want others to know. You are not alone in your solitary journey. To live vicariously through my words so my co-sufferers realize they’ve got a compadre in me. Or for those not in a similar situation, to know what it truly means to live this way.

This is not to say I want everyone to actually feel my pain. But just to understand enough about how this shift in my daily life experience has changed me and what it takes for me to get through a day. How I want to keep as active as I can, but how difficult it is for me to just stand up and walk down the hall. How when I say I’ve got chronic lower back pain, what I really mean more times than not is that it’s my legs that burn with searing, radiating pain. But that my legs also often go all pins and needles as my (literally) tethered nerves try to sort out exactly what’s going on after a big adjustment of position. How so much of my brain space is taken over by this situation I find myself in. There’s no escaping it. And therefore, because of all this, how so much of my brain space is absolutely not dedicated to interacting with people and their own problems (or joys), their passionately felt soap box speeches, their rhetorical questions that yet still seem like an answer is in hot demand. 

Or even just polite, casual conversation. To gather with and be amongst friends and chime in on a conversation about whatever. My brain isn’t there. I’m exhausted. Happy to be amongst friends, of course! But simply not able to contribute meaningfully to any friendly banter going on. Everything else seems so trivial and like someone else’s thing to deal with. Not mine. I’ve got my own thing and it’s just about all I can handle, thank you very much. And, no, I don’t want to talk about it either. I don’t know what I want, like I said at the start of this whole thing. 

And the funny thing is, it’s not that I’m even consciously thinking about my pain, my pain at any given moment. I honestly don’t feel like I’m sitting around feeling sorry for myself all that often. Especially at work. I love my job and my coworkers, and my chair there is as comfortable as I can get. I’m on the phone all day and my mind is distracted. But at home on weekends and evenings, all I’m really able to do these days is sit around. What else do you expect me to do but think about it? So when I get to writing and considering why I am the way that I am… this is what I come up with. 

Anyway… I also don’t wish for others to only “get” the bad parts of what I’m dealing with. As someone who likes to write, I of course want others to be affected by my words no matter what my subject matter and the emotions surrounding it. I want to evoke all emotions as they apply to whatever I’m writing about. It’s just that, right now, this is the big news for me and what I don’t necessarily want to focus on in my writing, but what is choosing me as its writer. 

Phew! I’ve been wanting to blog about this, and tried to with my last post earlier this month. But I don’t think I did justice then to what I want to convey, nor do I feel like I could ever do justice to it. How do I choose just the right words and put them in just the exactly right order to make my readers understand what I want to say…to feel what I’m feeling… All of it?! The frustration, the anger, the bitter sweet nostalgia for all I used to do and no longer can? The way I feel so incredibly disabled in a way that I never have before, even though - to the outside world - I have been disabled all my life? But that label has never stopped me before, you see. I’ve walked, jumped rope, skied, shot hoops, hiked, traveled both by myself and with others, attempted roller skating, ran, driven (and still drive a regular automatic transmission), carried a pregnancy, given birth, raised a child, and on and on and on. My being disabled by Spina Bifida has very rarely, if at all, resulted in my feeling disabled.

But now. Now! I am the very picture of disabled. I am quite literally not able - sidelined, hampered - from doing physical activity of almost any kind. Even just standing in one place. Even just getting out of bed, or rolling over while I’m still in bed. Anything I do causes or exacerbates pain. Period.

Sitting or resting is the closest I can get towards pain free. But I assure you, it is not pain free. Getting up from a seated position is probably the activity that causes the most pain, followed by an ease up of said pain as I walk it off a bit. But continue that walking activity too much (like, 2 +/- minutes) and the pain and leg numbness ramps back up again. It just always is. And always keeps me down. Physically and mentally. Sigh…

I’m sure this feeling of disabledness I am dealing with is a very large part of why I fight so much against it and against receiving help of any kind. Mind you, I do ask for help, and am asking for more and more of it every day. But please don’t ask me if I need help. No! I’ve got this. I’ll let you know if I need anything. But, please, let me be the judge of this. 

Okay. I’ve written enough here. I’m just going to hit “Send” and get it out there. I’m writing to you since I know you can relate. And I’m considering turning this into an actual blog post. But first and foremost, to you both. Before I do something dumb, hit a wrong key, and lose it all. Yeah. Okay. That’s it. Thanks for “listening.”

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Editing to add, and sharing again today, June 16, 2022. Tomorrow is my spinal cord detethering surgery. One more day of pain. Then, of course, pain and discomfort of post surgery and a long recovery. But then, little by little, the feeling of relief. Finally. Literally intensifying for about 18 years. Last 3+ years being the absolute worst and something not able to be ignored. Thanks to all who have seen me through this and will be there through my recovery and beyond. I don’t have the words to thank you enough. I don’t have the brain space to write a whole new post. I just want to share this again. All this pain is soon to be gone, as I can only hope that surgery will go well and do the trick. Thank you all again. It’s a long road ahead. Physical therapy to help me rebuild what I’ve lost, as much as it can be rebuilt. Here’s hoping. So grateful to and for you all. Overwhelmed that our community would even think to start a GoFundMe for us. And what an amazing outpouring we’ve seen already. Thank you all. We love you and feel so humbled to be among your beloved community.

GoFundMe

I Will Survive. And Thrive!

Hi there.

Miss me much?

I've been...surviving.

Yeah, sorry. That's it. Not great. Not even good or okay. Surviving. Sounds about right.

And, yeah, I said I'm “sorry.” But I have no need to be sorry. What am I sorry about? Not sorry that I can't and won't answer the standard greeting of "How's it going! How are you doing?!" with the expected "Great! Everything's great!". I'm not great and I'm allowed to express that. I am.

Not that I want to bring everyone around me down and halt a conversation from moving forward with a long detailed explanation of why I'm not, in fact, great. I guess I tell most people that I’m “hanging in there.” But, to people who know me and whom I consider friends or family - therefore they are already aware that I'm not feeling so great anyway - I feel safe and allowed to give at least a small update on how I really feel and what's going on with me. 

And, yes, dear Reader. I feel like we're friends. I feel like you care. Otherwise, you wouldn't be reading this. Right? Right. 

So, yeah. No. I'm not great. I'm surviving. I live with chronic back pain. Pain so bad that it radiates down my legs. Pain so bad that, even though I can't feel below my knees because of my Spina Bifida, I do in fact feel this pain that radiates from my back all the way down to my feet. Of course, it's much tempered. Below my knees it's just enough pain to notice, not really be bothered by. But I notice it. And that bothers me. 

Even at night, sleeping. If I want to roll over, I now wake up from the extreme pain I feel in the movement I'm trying to make. And often my legs even go numb, so that I have to lift and turn myself with my hands. It's an ordeal. And then I'm awake. Trying to figure out which position is the least of all the evils. Left side? Right side? Back? Who knows. Every time it seems to be different.

Sliding out of bed in the morning hurts. Getting up hurts. Walking hurts. Sitting hurts... but not as much. Sitting is best. As long as it's a good, supportive seat. The chair I'm sitting in now, at our computer, is not great. It always makes my left leg go numb. But I want to write and I'd much rather do it at the desktop than typing with one finger on my small phone. Anyway, I hear Sweetie finishing up what she's doing and so I suspect she'll be wanting to take over this space. Soon enough I'll be kicked out and have to settle in to another seat that’s not so comfortable in its own way. Hmph. 

Yeah. So I hurt. All the time. It used to be that I had to earn the pain and/or numbness. Walk a few aisles in the grocery store. (AISLE, by the way, is my go to starting word for Wordle. Lots of vowels and common consonants. I've not failed yet at getting the word. You're welcome.) Hike a bit in the woods (easy path, of course) with Sweetie and Hubby. Stand in one place for a long time. Something! But now? Nothing. I literally have to do nothing before my body reminds me, loudly and relentlessly, that I am in pain. 

And these memories of walking, hiking, standing... they're from not all that long ago, in the grand scheme of things. 4 years ago? Maybe even 3? And standing! Standing, man. I was the queen of standing in one place. In a time long ago and far away, admittedly, I worked in retail at a large, well known bookstore. And whenever I was assigned to the registers, I was a happy camper. I could stand there all shift long. Walking around behind the counter to retrieve orders for customers. Whatever needed to be done. No problem.

If I was assigned to the info desk, then I wasn’t so thrilled. Then I had to potentially walk around the store, directing customers to their chosen books. That got me tired and, eventually, in a bit of pain. Maybe. I don’t remember. But I definitely remember that I much preferred the registers. 

Anyway. What was I talking about? Oh yeah. Pain.

What is it like to be in pain All. The. Time.? Let me see if I can come up with some adjectives…

Exhausting. Depressing. Maddening. Overwhelming. Hopeless. Sad.

And yet, I am generally a happy, positive person. Or at least I used to be much more so than I am now (stupid pain!) And, as I think about my one chosen word for this year - RESILIENCE - I’m trying to think of some other positive adjectives and phrases that have come out of this experience.

Determination. Mental Strength. Acceptance. 

It’s a short list, but there it is. 

I’ve tried to research others who have written essays on chronic pain. Maybe I didn’t search enough, but I didn’t find much of anything. I specifically remember once listening to the author John Green talk about the aloneness that punctuates chronic pain. I can’t for the life of me find that audio or reading again. But I remember how good it was at defining chronic pain. It basically acknowledged how personal pain is. No one can feel the pain you’re feeling. No one can know exactly what you’re going through. Pain is as deeply personal as it is deeply felt. And one person’s ability to manage aches, twinges, and/or chronic raging pain is very different from anyone else’s ability to manage the same.

I, for instance, believe myself to be able to withstand pain very well. Heck, I’ve been in one form of pain or another for going on two decades now. I’m a pro! And nary a complaint has anyone ever heard from me. Much. Ask me how I am a few years ago and, yes, I was great! You betcha! Couldn’t be better. All the while I was just past experiencing the worst pain ever after accompanying Hubby at the grocery store. Mindset was much more “that was then, this is now”, meaning, sure I was in pain. But it’s over now and forgotten. Moving right along! 

But now. Oof. There’s no escaping it. And I complain more. At least to Hubby, anyway. But others see it too and understand. What’s so maddening is that I don’t know what to do about it. I’ve tried it all. Physical therapy (I hate it. I won’t do it at home). Chiropractic (is it doing anything really? It doesn’t seem to be doing a darn thing. And maybe it’s even harming me). Cold laser therapy (huge wast of money). Nerve stimulator placement (well, I tried for that, but we all remember how that turned out.) Acupuncture (oh, how some of those needles stung! And again, no relief felt). Meds (no med, prescribed or store bought has given me anything more than a mild relief). I’ve even recently been to several appointments with a urologist to see if I could resolve any issues in that department so that I could revisit the idea of the nerve stimulator. Crickets… Anyway. The list goes on. All done in a valiant attempt to avoid major back surgery. 

And so. Here we are. No resolution. Still in pain. Getting worse all the time. I don’t know whether to sit more and rest, since sitting feels like the least painful thing I can do. Or if moving more is the way to go. Sure, it hurts to move, but being active seems like it should keep me strong and ultimately be beneficial to the whole situation. I don’t know.

To move, or not to move. That is the question. I want to keep moving! I do keep moving. Sure, I now own my own wheelchair for use when we three go on adventures so I no longer have to walk. I’m grateful to have this and enjoy the freedom it gives me whenever I use it. BUT. I am not about to transition to using it all the time. I’m still walking. I’m still capable of getting around in small spaces, taking care of my needs. I’m good to go.

Honestly, I feel like if I start using the wheelchair more regularly, that I’ll never get up. That will be it. I’m done for. And that’s not the life I want to lead. Not yet. I’ve got some good days left in me still before I sit down. 

So. Where are we, then? What can I possibly do? Well let me tell ya.

I’m going to move forward with having back surgery. And in my case that means detethering surgery. The very thing I’ve been saying I absolutely want to avoid. Yet here we are. And I’m excited. Well, as excited as I can be to go in for major back surgery that’s known to be risky at best. 

But at this point, as far as I can figure, it’s the only option I’ve got. 

I was excited about the nerve stimulator surgery. But they don’t want to have me. Fine. And at this point I’ve realized that I don’t want to mask the pain anyway. It’s much better to fix something than hide it. Anyway, my main reason for not having the surgery was because I don’t want to lose any of my abilities. But you know what? I’m already losing my abilities, as in I can’t walk without crutches now. I used to be able to walk around the house without a cane or anything. But now I cannot function without the crutches. So, given that, if the surgery effects me so that I need to use crutches from now on, at least I’ll use them pain-free. Or if I’m put in a wheelchair for the rest of my life, I’ll at least be there without pain. And that sounds just fine to me. 

So what’s the next step? I’ve already spoken with my PCP and she’s put in the referral to the neurosurgeon. That appointment is made for later this month. I presume she (Yes! A female neurosurgeon! I love it!) will want me to have updated MRIs done. Once those are done and reviewed, I’d guess it’d be go time. Except that I presume this is considered an elective surgery. So I don’t know, given these Covid times we live in, when I’ll actually have this done. I’m hoping sooner rather than later, but we’ll see. 

And that’s it. I’ve made the decision and I’m looking forward to the other side. 

The day when I will no longer just survive. But a life where I will thrive! 

This is Me

I yelled at my chiropractor today. Like, really yelled. 

Now, I’m a quiet person, and those who know me are probably thinking I don’t even know how to yell. But I did. 

I didn’t yell in anger, mind you (well, kinda.) She was yelling at me... from literally 3 feet away, maybe... out of excitement... over my crutches. 

And I couldn’t take her volume, okay? 

I mean, I knew this was going to happen. It was the first time she’s seen me since I’ve started using the crutches and she all of a sudden realized I had this different mode of mobility (and she was the one to suggest them in the first place.) And, like it does when she’s excited about anything - her voice volume increased exponentially so that she could “properly” express how great I looked! Wow! Look at you! And everything so exciting and wonderful and amazing. And she’s standing right there, using her BIG outside voice, not across a large gymnasium or something, but right there, and I just found myself uncontrollably matching her volume level to let her know, “YOU’RE LOUD!” 

And then she quieted down. And I apologized. And life went on, we had a lovely conversation, I had my adjustment, and all is basically well.

Except that it’s several hours later and I still can’t believe I childishly yelled at my chiropractor like that.

But, man. I really can’t believe how incredibly LOUD she got/gets whenever she’s overly excited. 

And, really. Geez. From my perspective, me using the crutches is so completely not that amazing or wonderful or something that makes me feel (emotionally) great or anything. Sure, my pain is eased a bit, which is the whole point of using them. So, yah, yay. But, from my stance on things, I in no way feel less disabled even with my pain lessened. I actually feel more disabled when using them. 

Sure, my posture while walking is way better than it was than with just the walking stick. But I, as the person doing the walking, have never really felt like I’m walking in one particular way over another. I feel like just using the one, cool, wooden walking stick that Hubby lovingly crafted for me (anyone can use a walking stick, just because, ya know?)  just innately makes me look way less handicapped than I do clunking around with the 2 noisy, clanky, cold metal forearm crutches.

Even using regular under-the-armpit crutches wouldn’t make me feel so - other. People use regular crutches all the time when they hurt their legs or feet. It’s a temporary thing that will correct itself eventually. No big deal.

It’s just something about the forearm crutches, though, that indicates, “that person is disabled. Different. Other. Someone to be careful around. Someone to try to not stare at. Someone to try to act normal around, like ‘nothing to see here, folks.’ But they do wonder and stare and probably want to ask questions, but that would be rude, so they just continue trying to act normal and casual and like everything’s the same as it ever was, no big deal. 

But, really, it’s a pretty big deal to me. I feel like people I know who used to feel comfortable around me, now look at me wondering how to just be, like they used to. And for people who don’t know me at all, that just see this person maneuvering around with these clanky crutches, well... they’re stepping aside, giving me a wide berth, telling their kids not to stare, shushing their questions, trying to be as natural as the day is long, no big deal that an “other” is invading their space. 

Yeah. That’s how I feel. In a nutshell: like everyone is staring at me while trying to act like they’re not. Like everyone is trying to be careful around me, while trying to act like they’re not overly concerned. Trying to act casual and relaxed while clearly they’re at least a little uneasy in my presence.

And all that, to me, makes me feel invisible and other. People try to act like my presence (my crutches) is no big deal by just ignoring the fact that I’m there at all. Or smiling at me quietly while they don’t say the thing or ask the question of me that’s running through their head.

Or, on the other hand, I don’t need or want people to get overly excited for me and want nothing more than to talk at me about how amazing this is and isn’t it so wonderful?! Yeah. Also not great.  

I know. It’s complicated. A few people I know even really do make me feel totally fine and chill, like nothing’s changed at all. I’m so happy to have these people in my life.

And I know some people who know me who are reading this are absolutely thinking this is ridiculous and absolutely not true and all in my head and I should not now, not ever feel this way. Geez! Really, Amy! Get over yourself!

But it is how I feel. I’m the one with the disability. I’m the one with the diminishing abilities. I’m the one trying to adapt to using new aids to help me keep as active as I can. And this is the way I feel. This is the way using these particular crutches make me feel. It’s my truth, even if it’s totally unfounded to everyone else, totally not how anyone else is really perceiving me at all. It’s the way I feel. And to tell me to not feel this way, that I shouldn’t feel this way, that it’s ridiculous for me to feel this way - well, that’s just not fair of anyone else to say. No one else is me but me and I’m allowed to feel however I do. 

No one is going through the particular physical pain and the changes and the adjustments I’m going though but me. Sure, others in my little world have their own adaptations to make regarding my changes, and they have every right to feel however it is they feel about that for themselves. But I’m experiencing this in the one unique-to-me way that I am, the only way I can, and that’s that. I won’t apologize or agree that I should get over it or acknowledge yet that I’m making a mountain out of a molehill, or anything. This is how my world feels to me right now. It may very well change. I bet it will, with time. But for now, this is it and that’s that. Full stop. 

So when my chiropractor suggests I give forearm crutches a try and I tell her I used them years ago but I hated them... and she doesn’t even ask me why I hated them, but I can surmise that she thinks it’s just because they were too heavy or something... and then she gets way, way over-the-top excited (excited for me) to see me use them and look so good and, wow!, isn’t this so wonderful?!... well, really, it’s not. Not so exciting. Sure, yes, helpful for the pain (although now I have different pains, possibly worse, in my legs at times. But that’s a different story), for which I am very grateful. But otherwise? It’s a lot to unpack for me. It just is.

Anyway. I’m sorry I yelled at her. But it needed to be done. Not only to quiet her down, but to make myself be heard. 

I am grateful she listened to me. Thank you for listening, too.

I’ve Been Cancelled

Hi there. Thought I’d check in. I know it’s been way too long. Wanted to say... well, not enough about hardly any of all the things swirling around in my head. 

But y’all deserve at least a bit of an update. I mean, if you’re a friend of mine on Facebook, you may recall that I’ve already reported this. But for anyone who happens to read this and hasn’t otherwise gotten the news...

I did not have my nerve stimulator trial. Nor will I have it, ever. 

I know, right? Shocking. This was not my decision. And I found out 2 days before I was to have the procedure that they were cancelling it. Why, you ask? Because I had - I have, I always have - a UTI. And that infection is likely to lead to infection where the leads are placed into the spine. Even if they treat and cure an infection right before the procedure is done, the next imminent infection will cause the same threat of infection in the area of the leads. And so on and so one.

And what makes this all the more maddening is that I told the doctor about my history with UTIs! Back in September when I was theoretically prepping for the procedure to happen in November. He said I would have to get bloodwork and a urine culture done ahead of the trial and he said jokingly, “So don’t get a UTI!” As he waggled his finger at me. Well, I told him, I always have a UTI! Like, literally always. A urologist told me semi recently that if I am ever randomly tested, it will always come back showing infection. It’s just who I am as someone with Spina Bifida. It’s common for us all in this community. Anyway...at the time, he was like, Oh. Well, maybe if we can get your PCP to sign off on this and approve you going forward, we can still do it. 

Okay. Good. Okay. 

But then here we were in real life and my test comes back showing a “raging” infection and even though my PCP did talk to the doc and try to move things along, he cancelled it. His nurse - the person I’d mostly been talking to these last few months - called to tell me so. And she said he (the doctor) definitely wants to talk to me and will be calling me himself to discuss what other options there are to look at for me. But, for now, he at least wanted her to call and say we’d have to cancel. Not just postpone, mind you. Cancel all together. Because if I’m always likely to have a UTI, there’s always likely to be a threat of infection at the procedure site. 

And here we are a couple weeks later, and he hasn’t called me yet. And I don’t expect he ever will. Done. This and all other options with him are done. He told me last June that the “only” option for my relief of pain was this nerve stimulator. So now that’s off the table. No other options with him. I’m not about to call him. I’m sure he won’t call me,

Maddening. Frustrating. Sad. Extremely Disappointing, depressing, and disheartening. Grrrrr.... 

But! My chiropractor (whom, honestly often makes me angry, herself, in various ways) had suggested something that’s turned out to be useful in the midst of this latest kerfuffle. She suggested I break out my old Canadian crutches (that I hardly ever used and hated so, so much), because they will force me to walk with a different/better posture than I currently do, thus taking pressure off of my back and legs.

Well, I couldn’t find my old crutches, but I ordered some new ones. And they are pretty sleek. And, oh my gosh, do they work! I’m feeling considerably less pain as I walk and, according to Swee and Hubby, I’m zooming around with them like I haven’t zoomed in ages (and unlike the Zooming we’ve all been doing way too much of in this pandemic lifestyle we’ve all gotten used to.) what a relief! Really helpful -more than I ever thought they’d be. 

So, there you are. I will not be cancelled! You can try to break me, but I will not be broken! I will always find a way. Get back up, dust myself off, and try try again. Something has got to work. There is always an answer. You just have to wade through a lot of crap, sometimes to get there. Crap and disappointment. Anger and frustration. But sometimes you need a bit of all that to finally push you to find the best answer you could possibly hope for. The best answer for you. Something will work, even when everything else doesn’t. Even when everyone else says no. You’ve just got to say yes yourself. It just takes one yes to get what you need. That’s it.

I’ve found a great answer for me. Maybe someday there will be an even better answer. But for now, this is my yes. This is my relief. This is what I’ve been waiting for this whole time, and I didn’t even know it. 

Who cares what I can’t do. I can do this. And it works for me. 

I’m back, baby. Zoom zoom...

Help! I Need Somebody.

Uh, no I don’t. 

I am constantly being asked if I need help. Constantly. By my mother. Just her. Mostly around food prep and service. Not her saying, “let me know if you need help.” which I think I would take more kindly to. But, “Do you need help?” 

No. Maybe. I don’t know. But - I promise you - I’ll let you know. 

Dad asks me occasionally, but not nearly as much, and in much more tolerable ways. He asks or tells me specific things, like: “Do you want me to bring your tea in when it’s ready?” or “I will bring in your tea.” “Do you want me to carry that?”, or, “I cleared a path in the snow to your car and cleaned it off for you.” Or even, he might ask a more general question, like, “Can I help you with that?” but he’s asking about a specific task he sees me doing and possibly struggling with a bit. It’s not an all-encompassing, “Need any help?” called from somewhere else in the room by someone who doesn’t even see what I may or may not be doing. 

Most of the time - yeah, sure - some help would probably be nice. But I know what I can do on my own, and I ask for help with the things I need it for. And I usually ask Sweetie. Even if that means walking past my parents, into the other room, and interrupting her from whatever she’s doing. And 99% of the time, she is more than willing to help. She rarely, if ever, asks if I need the assistance. But when I ask her for it, she’s right there for me, no eye rolls, huffs, or whines about it. She might say (kinda usually does say), “Yes, in a minute.” But she finishes the thing she’s quickly doing and does as I’ve asked of her.  

And I think this is important. Super important. Sweetie has learned, by virtue of being my daughter, that some things are difficult for me. And so I need her to help me do them. Hubby obviously helps me out as well. A lot. But neither of them blindly ask me with every move I make if I need any help. Both he and Sweetie know I will ask them when I need them. They trust that I know myself and my boundaries well enough. I will ask. I do ask. Really, I will. 

Sweetie, though. Man. If Mom asks me if I need help, and it’s a situation where I actually do need help, I’ll usually say, “Sweetie will do it.” And Sweetie will be right there and, if Mom protests that, no, she can do it so that Sweetie doesn’t have to get up or stop whatever she’s doing, or whatever...Sweetie actually responds fiercely, “No! I’ll do it!” As if to say, “No. she asked me, she’s my mom. I will be the one to help her. Not you!” 

Or. Or! Mom will do her regularly scheduled ask of whether I need help or not (Seriously. It’s almost like a game at this point. I know she’s going to ask, and she knows I’m going to say no.) I’ll say no. But maybe now mom is actually near me and sees what I’m doing and probably feels that I really would be much better off if she just takes over. So she starts to do just that, or at least ask me again if I’m sure I don’t need help. It’s at this point that Sweetie will chime in with a stern, “She said no. She’s fine. Nana! She doesn’t need any help. Let her do it!” 

I know I should be mad at Sweetie for talking to her grandmother this way. I should tell Sweetie to watch her tone and just stay out of it. But usually? I’m actually kind of impressed with her for knowing me so well, trusting my abilities so well, trusting me so well, and having faith in me that I can do anything I set my mind to and, gosh darn it, wondering why in the world can’t others know the same about me?! 

I know. I know. My mom is my mom and she just doesn’t want me to do anything to exacerbate my pain. She knows I hurt. Probably knows I hurt much more than I let on. She wants to do whatever she can to ease any of this from my life. She’s a mom. She’s my mom. It’s what moms do. 

But, think of it from my point of view.

To me, I hardly ever move. I sit on the couch, get up to go to the bathroom throughout the day, then always right back to the couch. I feel bad about not moving much. I feel like my lack of movement is actually weakening my muscles and ultimately making me hurt more. It’s good for me to move as much as I can! So if lunch or dinner needs to be prepared, even though I’m in pain, I’ll go to the kitchen to make it happen. With Sweetie’s help most of the time, for dinners, anyway. Mind you, Hubby is the family chef. I’m never up and actually working on creating a meal. I’m putting existing food on plates to heat up - because Hubby is at work weekday nights and Sweetie and I need to eat. It’s never a huge chore to make food happen for us cuz it’s already ready already. But it’s enough of a thing to get me on my feet, working through the pain, and doing what I need to do to feed us. 

If I literally just sat on my butt all day, save for trips to the bathroom - which, honestly, that is pretty much my typical weekend anyway - with literally nothing else to do because everything is being done for me and/or brought to me - well, my muscles are just going to get weaker and weaker. My pain will get worse and worse. I will lose my abilities to do anything! And so, I need to continue to do what I can for myself. I need to push on. I need to, or I’ll literally lose all sense of myself. I’ll feel more helpless that I already do. I don’t need constant looking after, constant assistance. I am made to feel like I’m a fragile doll not able to take care of herself.  Let me be me, so I don’t feel like no one at all. 

Really. I do know my limits. I do. I do ask for help, from whomever is around at the time to do it. 

And, sure, the moving I do to complete a chore like dinner preparation is not the significant amount of moving that I need that would truly help me. Exercising would be much, much more helpful. And, with enough exercise, perhaps the other, more trivial moving around I do wouldn’t be nearly as painful. But, right now, I personally see any movement as good movement. I’m not an exerciser. I know I should be. But I’m not. I’ll work on changing this mindset. I know it would be beneficial. 

Anyway. That’s my rant of a post. Sorry. You probably won’t/don’t get what my big problem is, anyway. So what if I’m offered help a lot? That’s nice! People are looking out for me, not wanting me to do more than I should. Yeah. Okay. But it’s the blind asks, I think, that I’m truly upset by. You don’t even see what I’m doing, or you know that I just walked in the kitchen and haven’t had time to do anything yet, but you’re already asking if I need help. I don’t know! I just got here! I don’t know what I’m doing yet. I’ll let you know. I promise. 

And, at any rate, I’ve got my Sweetie to take care of me. My fierce defender. My confident girl who’s confident in me. 

I may not be able to do everything. I definitely know I shouldn’t even try to do everything. But with Sweetie’s help, together we can do anything. 

I Am...

 (Inspired by In and Of Itself, now available on Hulu.) 

... still here.

...still in pain. 

...frustrated.

...angry.

...worried.

...anxious.

...depressed.

...defeated.

..,upset.

(My trial for my nerve stimulator that was supposed to happen in November, but was postponed until January due to Covid, was postponed again because my doctor had to go in for surgery himself. Oh, and insurance denied me anyway. New insurance now, but other patients in line got to sneak ahead of me during the transfer time. Now I’m looking at a procedure date in mid April. Not that they can even schedule it until a month out. But, still, I’m in line for April. Here’s hopin’...)

...bored.

...tired.

...sore.

...quiet.

...useless.

...sad.

...dubious.

...second-guessing.

...over-thinking

(Will my new insurance cover the procedure? What if they don’t? Why did the old insurance deny me? Why hasn’t my related appointment from last July processed through the insurance at all, one way or the other? Does it even matter, since I don’t have that insurance anymore? What if I DO need another psych eval to make the new insurance approve it, but no one is thinking right now that this is the case? Is not moving very much good for me because it at least helps me stay out of more pain? Or is my lack of movement just making everything worse and more painful in the long run? What do I need to do to put me in the best situation possible, given my situation at hand?)

...needing to be left alone.

...needing some assistance.

...craving independence.

...accepting my limits.

...wanting social time with people I love and whom I find interesting.

...not wanting to always be the one who makes the plans for togetherness.

...concerned that if I don’t make something happen myself, nobody will.

...a worrier.

...trying to remember I am a good, fun person people enjoy being around. 

(If I had to pick one word tag off the wall of over 600 tags in the lobby of the Broadway show, In and Of Itself, I would assume the option would be there that said “I Am a Unifier.” Or, “I Am a Gatherer.” Something like that. And that is what I would choose for myself. I am the one who created the book club I was a part of for many years and which now continues without me {my choice - just not into it anymore.} I wanted a group of like-minded moms to come together for a safe place to discuss the trials and tribulations of parenting neuro-diverse kids and so I put that group together. I thought it would be fun to have a monthly game night with friends and arranged for that to happen too. But I am also the person who decided to “test” her friendship with her high school best friend and, at some point during that first year of college, stopped calling her to see if she’d ever be the one to call me instead. And she didn’t. So I am leery. Careful. A bit of a control freak. I bring together those I want to be with and make sure it happens regularly. I am a worrier who, on some level, feels that if I don’t work at keeping friendships going, that they will just fall away.) 

...a wife.

...a daughter.

...a sister.

...an aunt.

...a mother.

...a writer.

...a woman.

...a problem solver.

...myself. 

(I took Sweetie to a local Fall Festival 2 or 3 years ago. She was volunteering there and I was just hanging out enjoying the beautiful day. While there I ran into an old acquaintance and we chatted a bit, she wanting to know what I did for work. Now, what I did for work then is the same as now - I call people who are past due on their medical bills to try to help them resolve them with either payment plans or financial aid. It’s by no means a glamorous job, but I really enjoy it, as well as the people I work with. Still, whenever I’m asked this question- what do you do? - I don’t exactly feel super proud of what I’ve made of myself and the “career” I find myself in. Some of my coworkers are teenagers! I talk to a fair amount of deadbeats who just don’t care. Some angry people. It’s nothing amazing by any means. BUT - I told this person what I did and she said, in a rather impressed way, “So, you’re a problem solver!” Huh. Yes. Yes, I am. I help people solve problems. I like it.) 

...relaxed.

...calm.

...introverted.

...awkward.

...friendly.

...easily over-stimulated.

...prone to snapping.

...a self-preservationist.

...the most pleasant person in New England.

(Yes. All of that. I am a quiet person who often does not know how to engage in small talk or contribute intelligently to conversations. I do not like large, loud groups of people and can not take being a part of such crowds for long stretches of time. But I know when and how to get myself out of these circumstances if I am at all able to. I take care of what I need to do for my own sanity. Self care, man. I’m not trying to be rude. I’m trying not to go crazy. And, yes, an older gentleman coworker of mine many years ago did, in fact, once tell me that I was the most pleasant person in New England.)

...amazing.

...an inspiration. 

...so strong.

...gold.

...incredible.

...stubborn. 

...a beautiful soul.

...beautiful.

...a martyr.

(I have Spina Bifida. I have done things people would have never believed I could have done. I have done things maybe I shouldn’t have done. I do things in ways that work for me, that are not exactly easy ways to get things done. But I get things done. I don’t want help for things I know I could or should be able to get done on my own. I know I’m in pain. I know my way will take longer or not be so “pretty.” But there’s a method to my madness. Let me be. I promise I’ll ask for help if I feel I need it or find that, yeah, my way isn’t working so great after all. I’m getting better at asking for that help. I don’t do things on my own because I want to show what an inspiration I am or how strong I am. I don’t feel I’m those things at all. But others have told me I am, time and time again. Whatever. I’m doing things because they need to get done and I feel I can do the things. If I can’t, I can’t. If my body hurts too much and I just don’t want to, I’ll ask for help. Change is hard. But I know I’m changing and need to slow down. I’ll slow down. But in the meantime, let me be and do - at least try to do - what I think I can do.)

...able.

...disabled.

...capable.

...handicapped.

...smart.

...thoughtful.

...funny.

...willing.

...ready.

(I know “disabled” is the more PC term. I know people-first language matters. But I personally don’t care. I prefer “handicapped” actually because I think it’s more accurate. Disabled to me sounds like I’m not able to do something. Whereas handicapped sounds to me like I can do a thing, I just might do it a little differently or need a bit of help doing it, either by person, machine or equipment. I’m up for trying most things. At least, I was more willing in my less-pained days. But my mind works just fine. I have a sense of humor about things. I can recognize my limits and take heed. But don’t count me out on anything. I’d like to give it a shot, whatever it is. Probably.) 

...multi-faceted. 

...a lot.

...trying.

...a reader.

...a writer.

...a puzzler.

...curious.

...one who appreciates the arts.

...Amy.

I am so many things. On any given day you can find me in a great mood, a blah mood, or a bad mood. Either all day long or changing back and forth multiple times throughout the day. Just like all of us. Who am I? Who are you? To everyone else, sure. But also to yourself. Just who are you and whom do you want the world to see in you? Think about it. Be deliberate. Make a choice. How you see yourself may very well not be how others see you. But is that okay? Does your own self image have to match how others see you? Think about it. I don’t know the answer. I think we can actually learn a lot about ourselves by learning how others perceive us. But it’s not everything. It’s not necessarily the whole truth. Figure out how you want to be seen. That’s a good start. Figure it out and get to actually being that person. But don’t be afraid to change. To falter. To be someone else from time to time. Like I said, we are all multifaceted, multidimensional. And that’s not only okay, that’s great! Just be aware that others most likely see you much differently than you see yourself. Be yourself. Be better than who you think you are. Be everything. And most importantly, be...

...still here. 

Express Yourself

I just finished the book, Life at Hamilton, by Mike Anthony. Anthony is the bar tending manager at the Richard Rodgers Theatre in NYC where Hamilton has been for its entire run. The book showcases Anthony’s many interactions with all sorts of different people - from the very, very famous to the everyday people lucky enough to find themselves attending a performance. It’s a great book! Very interesting, heartwarming, and real. Anthony can get a little long winded, and some of his run-on sentences have run-on sentences themselves. But as far as storytelling goes, he does a great job and it’s a really fun read.  

Anyway...

One of his stories tells of his encounter with a truly giddy little girl, maybe 8 years old, who is positively bursting with joy at her finally attending this amazing show. As he’s done with so many other young ones there to see the show, he excitedly asks this bouncing girl at intermission, “Isn’t it the best show you’ve ever seen?!” 

Which stops this girl in her tracks. No more bouncing. The gleaming beam of a smile instantly morphs into a serious look of consideration. She says nothing for several minutes as Anthony pours and serves her family’s beverages, and gathers the desired snacks her family has asked for. Finally, after much thought, the little girl serves up her answer. “Well, I don’t know if it’s the best show I’ve ever seen. But I do know it’s absolutely wonderful.”

I love this story. And I understand this story. And, as soon as that little girl stopped bouncing and started seriously contemplating, I had a guess about this story. About that little girl.

I thought to myself, “that girl is autistic.”

Now, Anthony never confirms this one way or the other. Heck, it probably never even crossed his mind to consider it. He was simply endeared by this thoughtful little girl who wanted to give an honest answer to an off the cuff question. It is a great story. And, honestly, it makes no difference one way or the other what challenges this child may or may not be living with. Maybe she’s completely neurotypical and is just a thoughtful kid. But, for me, and my experience as the mother of someone on the spectrum, I can tell you - her response seemed very familiar. And a sign that she may just very well be on the spectrum herself. 

You see, Sweetie, and oh so many others who find themselves somewhere on the neuro-diversity spectrum, is unfailingly honest. Very truthful. And I can so easily imagine that if Anthony was asking a younger Sweetie if she thought this was the best show ever, she too would have stopped and pondered and given her most honest answer. 

You see, everyone on the spectrum is different, true. But a pretty common trait among many is experiencing a difficulty with understanding expressions, and communication in general. It’s typically at least a little difficult for an autistic brain to translate a hyperbolic phrase “we all” say, into something more real and relatable. It’s very much a learned skill, and for the autistic brain, it takes more practice than for others.

Sweetie is now a young adult. She’s had years of practice with learning and understanding all sorts of sayings and interesting turns of phrasing. So, for instance, if she were now asked a similar question as this little girl about something equally as thrilling as finally partaking in a long-anticipated treat, Sweetie  would understand and successfully translate the hyperbolic nature of the phrase and answer appropriately. Neuro-typically appropriately. As expected by any neuro-typical inquirer. 

But I can definitely remember some instances in her younger days when she wasn’t so great at interpreting common American phrase...

I once asked a young Sweetie - maybe 4 years old, to go straighten up the bathroom sink area, since I was cleaning the house and this seemed a simple way she could try to help me out. Cut to a few minutes later when she called me in to the bathroom to excitedly show me the great job she did... by taking all the things on the bathroom counter and lining them up, end to end, in a straight line. Ah, yep. “Straightened up.” I guess she at least did do what I asked of her. 

Another time when, around the same age, she wanted me to do something for her or play something with her - I don’t exactly remember. But whatever it was, I told her to, “hold your horses.” And so? She went right over to her horse head-on-a-stick riding toy and, of course, held it. Probably also wondering why in the world this was a thing she’d ever be asked to do, and how it was going to get mommy to do the thing she wanted done. 

And then there was the time, same-ish age, when Hubby and I - lazy parents that we were - asked Sweetie to go to the upstairs bathroom and bring down a roll of toilet paper to the downstairs bathroom. She had many questions for us. We could see that she doubted this instruction very much. But we were clear and insistent. Bring the toilet paper that’s upstairs, downstairs. Well, I’m sure you already know where this is going. In just a few minutes, there Sweetie stood at the top of the stairs with her arms full of unraveled toilet paper from the in-use upstairs roll. 

All of these instances we thought were so funny. So cute. So typical, we guessed, of any little kid learning about what different things mean when they’re said. And, really, maybe that’s all it was. Just a typical kid doing typical little kid goofs in their learning to understand how language is used.

But then again, maybe it was a sign of diagnoses yet to come, some 10 or so years later. Especially that lining things up thing. That is something that kids on the spectrum do like to do. And I think I remember her sometimes doing this with her toys as well.

She was also - still is, pretty much - someone who you could not tease.  She always thought she was being negatively picked on. That whomever was doing the teasing (mostly Daddy, Grampy or Papa D), truly believed whatever they were saying and were trying to convince Sweetie to believe it too. And. You know what? It literally just connected for me. As someone on the spectrum, of course she didn’t like this! She takes everything literally. There is no teasing to get, only truth. So when people she knows, loves,  and trusts start telling her things she knows to be one way are, in fact, another way, of course that’s upsetting! Sigh... it’s tough to be a Sweetie sometimes...

And there’s the fact that we had to go ahead and tell her, at 13 years old, that Santa wasn’t as real as she thought he was. At least not in the way she thought he was real. And she was shocked. She trusted us to always tell her the truth. We had always encouraged her belief in Santa, the person. Why in the world should she have ever thought we were lying to her?! That’s just not a concept - lying and deception - that was in her vocabulary. Nothing she would ever do, and nothing she ever expected from others. Especially from her parents - the most trustworthy people in her life. 

I could go on. Hindsight certainly is 20/20. When Sweetie’s PCP asked Hubby and I, about 3 1/2 years ago, if we ever considered Sweetie has High Functioning Autism, (at the same time I was suggesting to her that I thought Sweetie definitely has ADHD - which her doctor agreed with), well, we were pretty taken aback. “Noooooooo....” was my, “I’ve never considered that, ever” response. 

But then? We 3 got to investigating and learning, testing and figuring out that, “Yeah. Huh. Sweetie totally is autistic. No question about it.” Everything we read or otherwise learned about high functioning autism hit the nail on the head. Explanations for the quirky things Sweetie has always done, and her sometimes over-the-top reactions to what neuro-typicals would mostly consider no-big-deal happenings. 

And that whole “literal” thing. As described above, Sweetie - and many, many others on the spectrum - is very, very literal. She says what she means and means what she says (but maybe not - probably not - in the correct tone in which she’s supposed to say it.) She may think she’s kidding about something, but the way it sounds out of her mouth doesn’t always sound jokey at all, but much more serious. But it’s still the case that the words she’s saying are truthful and what she intends to say. She’s still working on the tone thing. Getting better all the time. She’ll get there. It’s just another of those learned skills that don’t come as easily to understand as it does to many others. We, her parents, understand this. And we’re working on helping others to know better to listen to what Sweetie says, not always how she’s saying it. 

So, yeah. I guess that’s it. Not sure if this was the post I meant to get out today. But it’s the post that came. Beginning with that little girl at Hamilton who so honestly considered her answer to a seemingly simple question, rounding the curve to cute and quirky things Sweetie did as a kid, ending with figuring out what’s really going on in that head of hers even now (as best we can, anyway.) It’s a process. It’s definitely a learning curve. It’s something that not all people are going to pick up on - even those who think they, for sure, know Sweetie and would have never guessed that she’s - gasp - autistic! No way!

Way. Sweetie is High Functioning Autistic, and also has ADHD. We see it, she feels it, it’s a fact that she must deal with. And that she does deal with - beautifully. And getting better everyday about how she can fit herself - as is - more comfortably into the neuro-typical world around her. Not changing herself to fit. Just adjusting herself a little - her reactions, her understandings - to more closely align with what the rest of the world is trying to express to her, and vice versa.

You see, it’s like learning a new language. Her native tongue will always be her own. She’s just learning, at the same time, to communicate her own truth, while also understanding the same from others. 

She may not always be doing that the best way possible ever! But she’s doing it honestly, because that’s the only way she knows how to do things. 

And she’s doing a wonderful job. That’s for sure. 

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Posted with Sweetie’s blessing. I’ve been sharing the link to all my posts of late with her, and will continue to do so. I’ve even invited her to my blog in its entirety, now that she’s 18. She says she doesn’t want to read it all. But she has read the recent links I’ve shared with her. For this post, she was a bit concerned with some of my phrasing, thinking my readers wouldn’t be clear about how some stories from her past went down. I assured her they would understand. But, beyond that, she is good with the overall post.