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. 

———————-

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. 

You’ve Got This

Huh. It’s been over a month since I last wrote. When we were in the middle of Covid quarantine. All good now! Back to work, feeling fine, and more or less at least temporarily immune to catching it again - depending on who you ask. It’s complicated. 

Anyway - when I started to write this, it was December 20th, 2020, which means it was Sweetie’s 18th birthday! 

You have not been looking forward to this birthday, Sweetie. Turning 18. Becoming an official adult. You still see yourself as a little girl and you don’t think you’re ready for all the responsibilities that come along with being a grown up. 

I can’t say I can blame you, honestly. But I also want to assure you not to worry.

It’s not like a switch has flicked and we are done raising you. “You’re good to go! Be free, my child! You’ve got this - have a great life.” No, it’s not like that at all. 

In fact, nothing has really changed, other than you can now vote, and it’s up to you to sign documents about your own health and personal dealings. But we can still advise you on what you’re signing, if you want our input. It’s up to you. Frankly, though, I’m not all that worried about any decisions you’ll make for yourself. Decisions that require paperwork, or not. You HAVE got this! You’re smarter and more reasonable than you give yourself credit for when it comes to making important choices about what’s best for you. 

You are an extremely careful and cautious person. You do not take any chances when it comes to your own safety or that of those you love. You always err on the side of care and self preservation. Maybe to a fault. And maybe - almost certainly - this has a little to do with the touch of anxiety that twitches in your brain. That alert of fear that makes you just a bit nervous to move ahead on certain uncertain things. It’s not necessarily a bad thing. It’s good to be safe, to be cautious, to take your time. You look at the facts, you take the time for self reflection, you don’t let yourself be swayed by others’ mere, possibly uneducated opinions. You do you, and you are proud of it. And we are proud of you every time you stand up for your own convictions. 

This trait of yours - to do and think as you wish, no matter others’ attempted influence - goes way back. We remember your kindergarten teacher telling us how you always played with the toys and tools you wanted during free time, never following along with what the other kids were doing. Even those kids you had become friendly with. Nope. You stuck to your guns and entertained yourself exactly how you wanted to be entertained. 

You are thoughtful. You sometimes think you have no particular opinion on certain subjects  - especially “grown up” subjects such as politics or finances. But you do have opinions, and understanding! And you can be very mature about what you think and how you express yourself. I remember when you were younger - maybe 4th grade or so - and we surprised you after school by taking you to the space and science museum. There was a gift shop at the museum and you asked us if this was a buying day or a just looking day. It had to be a “just looking” day, we told you. But you put up no fuss, didn’t ask for anything, understood that money could be a struggle for us. You respected and accepted our answer and went on about your surprise treat of an afternoon having the time of your life. Simple as that.  

It may take you a minute or two to collect your thoughts in order to express them in a way that makes sense to you. But when you do speak them... well, those thoughts make sense to anyone listening. You are clear, well spoken and smart about why you believe in a certain thing, why you think a certain way. You clearly state what you need. We are constantly in awe of how well you can express what you’re thinking and why. You are wise beyond your years. 

This may come through the most after you’ve experienced a bit of a meltdown. Meltdowns are something you experience when your senses have been overwhelmed. It’s a common happening for you, or anyone like you, who lives their life managing ADHD and ASD (Autism Spectrum Disorder) symptoms. So, yes, you may melt down, cry, yell, run away and slam doors. But we have learned to let you be when this happens. We give you a few minutes and, sure enough, in just a little bit you will inevitably come back to us, now calmed down, and tell us with a cool head the emotions you’re feeling, why you’re feeling them, and what you need from us to make a change for the better so that maybe this won’t happen again. Your words are wise and well thought out and we are always impressed. You know who you are and what you need from yourself and others to get by. 

You are brave! To be able to voice these thoughts and opinions as clearly as you do, backed up with good reasoning and understanding of the situation at hand - well, it’s just beautiful to watch. And what’s more, you don’t care if others around you feel differently than you do. You know how you feel. You’re fine with - actually encourage - others to know and express their own true hearts. But whatever they all think or do is not going to stop you from trusting your own heart and living your life the best way you see fit for you. Most people your age want so much to fit in, be liked, and do the cool, popular thing. But you! You are bravely living your best life, no matter what others may say or think. And yet, you would never, ever admit to this bravery in this way. It’s just what one should do, how a person should be - true to their own self. You’re just living your life, making the most out of the cards you’ve been dealt - and doing it beautifully, in our opinion.. 

You are kind and loyal. You truly care about others - all people everywhere, but especially those you love. You are a fierce defender not only of your own rights and beliefs, as described above, but also everyone else’s as well. You keep others’ confidences, even if they haven’t expressly asked you to. This, like all your wonderful characteristics, have been a part of you all your life. I remember asking you at some point in middle school if one friend or another of yours had a boyfriend or girlfriend. You wouldn’t tell me because you said it was not your information to share nor my information to know. Fair enough. But on the other hand, you understand when the important secrets need to be shared, and have asked for our help with big issues the few rare times when they have crept into your realm of existence. You just know how to take care of people - including yourself - and do what needs to be done to make sure that happens. Plain and simple. 

Don’t get me wrong - you have your quirks. You do things we don’t like. You could be much more eloquent for our taste in how you get along with others from time to time. But you are you. At least Dad and I know why you sometimes behave in less than desirable ways. You have challenges you struggle with every day - struggles that the rest of us can’t even pretend to fully understand. But we have learned a lot and try to do the best we can to understand for ourselves who you are as a whole person. And we do what we can to educate others when they need a little bit more understanding themselves. We’ve taken care to make sure your particular needs are met. And I think we’ve done a pretty good job. Enough so that you have learned what you need to do for yourself in most cases. You’re doing great! We are so proud. 

So. You are 18. Officially an adult in the eyes of  U.S. law. But this is just the beginning. This is just a small stepping stone towards greater adventures, more adult responsibilities, and your whole life ahead of you. We are still here for you, and will be for as long as you need us. And I have a little secret for you... you will always need us, in one way or another. Just like we need you, now and always. I can’t imagine a world or a time when I won’t worry about you, or think of you, or hope that you are making good decisions for yourself and what will be your own family one day. 

But from what you’ve demonstrated already? I’m not all that concerned, really. Yeah, you’ve got this. You will be - you are - one fine human being. And we love you so much. Happy birthday, Swee. Keep on keepin on. 

Yesterday Didn't Happen

Not the way it was supposed to, anyway.

That is, I did not have the procedure to start my nerve stimulator trial. Because - Covid 19 invaded the house. And quarantine ensued. 

No leaving the house means no procedure. For now. Trying again in mid January.

It’s okay, really. I was actually becoming really sad, even borderline depressed, that I was going to go through this trial and have said trial end the day before Thanksgiving. 

I don’t know that I’ve ever really explained in detail how this trial - vs. the actual procedure - actually works. So let me do that...

When one is chosen as a candidate for a nerve stimulator, there are many steps in the process towards actually getting it done. The main thing being that they first test out, with a trial period, whether or not this stimulator will actually work for you. So you have a procedure done where leads are put into your spine, much like an epidural is placed for a woman in labor. Once the leads are in, there’s a device taped to you back that controls how much your nerves are managed to stop the pain message from getting to your brain. This trial, where the leads are in and the device is taped on you, lasts 5-7 days. Days during which one should experience much less pain, theoretically. If this is, indeed, the case, then you may decide with your doctor that you want to go ahead with the actual procedure. So then you schedule a different time altogether when you will have that done. And that’s when the device that was taped on your back during the trial is placed inside your abdomen via a surgical procedure. 

Basically, you have the trial so you know darn well that this thing you’re having done is actually going to work. 

And so, as you can imagine, one should experience 5-7 days of relatively pain-free living during the trial period, assuming it all works as it should. But then the trial is over, the leads are removed, and you are back to living in pain from that day on until whenever the permanent procedure takes place (which could be weeks to months later.) In fact, I would say you’d most likely experience that returned pain as worse pain than it was in the first place, because you just had several days reprieve from it. So when it comes back it just hurts that much more. 

And my trial was scheduled to start yesterday, the 20th, and end on this coming Wednesday, the 25th. The day before Thanksgiving. Which would have meant an incredibly pained holiday for me. A day that’s supposed to be fun and festive and wonderful would most likely have been anything but, to me. 

I was truly not looking forward to that, as you can imagine. A major bummer.

So, I guess in the end, the fates took care of that worry for me and took the whole thing off the table. Trial now scheduled for January 15. Good to go - looking forward to it!

And I just keep on keeping on. I’ve been in pain this long, what’s a little bit longer? Best to make sure I’m healthy and 100% up for my trial to take place. It’s all for the good, all meant to be. 

And for now, my job - and the job of everyone in the house - is to abide by safe living practices, keep our distance from one another, and get through this as best we can. Hubby and I have been out of work for a week and a half now, with one more week to go. By then our household should be well and truly past this and life can go on. 

The break from work has been nice. But I can think of way more exciting ways to spend a work “vacation” than what’s been going on here. But then again, given the situation we find ourselves in, it could be waaaaaay worse. It’s not that awful. We’re all getting by. Surviving. Thank goodness. 

So, that’s my update. Not the update I was hoping to report today, but an update nonetheless. 

I’m reminded of a comedian’s comment I once heard. Don’t remember who it was, or what else he was talking about in his routine. But he was saying how he always loves when he’s next in line. He’s next! It’s happening! It’s almost his time! After all that waiting in that long line, he is finally next! The anticipation! The excitement! NEXT! Yes!

Well, I’m next, baby. Nerve stimulator trial - I’m coming for ya! I. Am. Next! And nothing’s gonna stop me now. 

All the Feels

I’m here to write, but don’t know what to say. 

I guess I’m just glad for a brand new day. 

All the emotion, the pent up stress, the gloom -

I feel it releasing, yet coming too quick, too soon.

And it’s not just the race - Biden vs Trump. 

Although when I think of it, there’s certainly that lump

of pride in my throat, a weightlessness, a calm

It’s like our whole country has been soothed by a balm.

But aside from that there’s also this COVID-19. 

This thing that has controlled our lives, or so it seems.

And with that, the holidays! And how to proceed.

Do what people want, or what we need.

What I need, and Hubby, and Swee

Despite others saying, “all’s just fine, listen to me.”

Am I crazy taking this seriously, listening to science?

Or is the media and my peers making me biased?

Others say, “Don’t worry, news just tries to scare you.   

It points out the worst, but they really have no clue.

We are safe, there’s really nothing wrong,” 

Yet this virus is sometimes silent and often strong.

It’s not that I don’t trust, don’t love, don’t miss you.

It’s just that I want us all to be safe - that’s the issue.

And not just us, our dear ones, our fam.

But everyone I pass - we’re all on the lam

from Corona, and we just can’t know how to proceed.

It could not affect me, and - God forbid - it could lead

To your death, and I just won’t have that be.

Not on my watch. Keep us all healthy, if not happy. 

Let me stay safe, as I keep you.

And together we’ll gather when we’re truly able to. 

Okay - you think that’s it? I’m not done yet.

See, I’ve got this pain in my back that just won’t get.

But I’ve a date with my doc! November 20th’s the day! 

My trial for relief will begin - hurray! 

Cuz it hurts so much, y’all. It really does. 

To be finally pain-free - can you believe it, Cuz?

Hubby says I’m a martyr, that I just always “take it”

Without others ever knowing how much I can’t make it

another day, another step, another minute. 

Well, the game has arrived and I’m aiming to win it! 

Honestly I just want to go to the store, 

Take a walk in the woods, yeah, and so much more.

Man, I’m hoping this works, so many have had success.

It’s my turn now, yes it is - YES!

I’m betting on a pain-free holiday.

One where I’m truly thankful and can say, 

I’m free at last! I can do! I can live!

Oh, how happy I will be when I can give

all my focus, all my care

To the ones I love. And to not give a tear

to these aches, pulls and pains

Ahhhh, I’m hopeful I’ll see no remains.

Wish me well, please wish me luck. 

That I’m well and promptly pulled from the muck

And the mire, the terrible pit of pain goo. 

And I can let go of the pride that controls my boo hoos.

Tears of joy, of relief, just - you know - relaxation.

That’s what I need now - a new sensation.

My body, my brain, my heart, my soul. 

Just, ya know, no more toll. 

So anyway, that’s it. That’s all. It’s all there.

The country, the virus, myself - I’m aware

Of the changes that are coming! So good. So great!

But all of it still so unsure - so we wait.

There is hope, that’s for sure, but we just can’t know.

Just hope and trust it all - every bad thing - will go.

From the personal to national to worldwide...

So much is at stake. We must set our mind, 

believe in ourselves and do not waiver.

And can I ask just this one small favor?

We may not agree in lots of big things.

But we can get along fine if we all give wings

to love. To trust. To just trying to make things right. 

By working together and saying goodnight

to the struggles and strife that’s lead the way

for so long. Let’s just be done with it, okay.

Let’s come together and support this land, 

Our families, ourselves, and...

Find the peace we can take to our hearts. 

I don’t know - it sounds like a pretty good start

to healing - our country, ourselves, the earth.

That’s my thoughts  I’m done. For whatever it’s worth. 

Nobody Knows Anything...

 ...you really have to look after yourself.

Let's start with my chiropractor (although I have several instances of all sorts of doctors not knowing what they're doing, in terms of what I need...) 

I needed a new back brace. The old one I currently have is not great, but only because the velcro has worn out. It's a brace I got at CVS some years ago. Chiropractor tells me to get a new one. But CVS doesn't have the one I got before as a new model. I don't know what to get. So chiropractor does her own research and tells me her opinion on another brace from some online company. 

Fine. I'll get that.

I don't like it. I think my chiropractor likes it because she thinks it will sit lower on my hips. But it really doesn't. it actually sits higher. So much so that the bottom edge of the brace actually rests at exactly where my "point of spina bifida" lies. Meaning it lies at where my spine was closed when I was a newborn. Which is a very sensitive spot. So it aggravates my initial operation spot. And I hate it. No good at all.

Doctors don't know everything.

In preparation for this post I ran through my memory of all the times doctors advised me to do something, only for that advice to mean nothing to me, or actually ended up being bad advice. I have 11 instances of such times. I'm sure I'm forgetting many others as well. 

The earliest example I can think of (as an adult dealing with my own care) was when I went to the doctor (not my primary, but whomever was in office at the time) with crazy symptoms, and I was promptly admitted to the hospital because "maybe its spinal meningitis" So, to be safe, they admitted me.

Turns out I just had mono.

I guess it was good they were being cautious? But - man! I just had mono. Send me home and to sleep, why doncha!

Back to my chiropractor... I'm just... I don't know. I've known her for about 20 years now. She thinks we're more friendly than I really consider us to be. I've started and stopped chiropractic care with her several times over the years. She did get me through pregnancy, so that's something. 

But right now, with my current situation (and she is fully aware of my current situation) there are, I believe, 3 or 4 major things wrong with my spine right now. And she has admitted that she can't adjust me as she would a "normal" person to solve at least one of these problems, because my spine doesn't even have vertebrae to adjust at the location that needs adjusting! So - what exactly is she doing? I don't know.

And she really wants me to try laser therapy, which is something she offers. It's a slow process... and it may make things actually feel worse before they start to get better... maybe... but it's something to try.

No freakin' thank you. I've tried laser therapy with her before, also at my lower back level. And it seemed to put me in more pain than I started with. And so what did I do at the time? I slowly slinked away into the night, never to be heard from again (until there I was, when I started up with her again this past March.) 

Anyway, I'm not about to do laser therapy with her again right now. It made my pain worse, and I quite frankly can't get any worse right now. I wouldn't be able to take it. And even if it ultimately helps, it's a slow process. I need as fast a fix as possible, which this nerve stimulator would be. But... it's just not happening fast enough. I called yesterday to see if there's any update on when my procedure will happen. Nope. No update. Don't call us, we'll call you. Great. Yippee. Keep on keeping' on. 

As for the last appointment I had with this pain and spine doc who will perform the nerve stimulator procedure... just previous to this appointment, I had an MRI of my thoracic spine. Mid spine. At the appointment, doc asks me if I'm aware that I have (he used the correct scientific term) fluid in my spine. Uh, no. I've since investigated that this is Syringomyelia, which is a condition that can cause increasing pain and deterioration of the spine. Awesome. Anyway, he didn't seem all that concerned about this, and assumed I've "probably" had this all along, and it wasn't going to disrupt what he had to do for the nerve stimuator procedure anyway, so it's all good. But...wait, what?! What the heck! I don't know! Maybe this is a new occurance for me and something important to be aware of. I honestly don't know. I've since tried to look at notes on my past MRIs over the last several years and, no, I don't think I see any evidence of this phenomena before. But, you know, it's all crazy doctor speech that I can't really understand anyway. My point being - maybe fluid in my spine is a relatively new occurrence, but since I'm not sure, my current pain and spine doc is just assuming it's always been there and he's okay with thinking that, but... IT'S NOT COOL TO ASSUME, GUYS!!!! GAH!

So many other times docs have lead me astray...

Let me just say that most primary docs I've ever had haven't had a clue about spina bifida. So they've always erred on the cautious site. Good... but super annoying...

I have always tended to get a ton of UTI's. It's just the way it is for me. And it makes sense, given that I self cath myself. Germs invade. Bacteria collects. UTI's happen. But docs in the past for me have become really concerned that I'm getting too many infections, and have sent me for major testing to figure it all out.

There's nothing to figure out, guys. It's just the way it is.

Another example: when I was pregnant with Sweetie... all was going super well. My OB/GYN admittedly didn't have experience with any other mom with spina bifida, but she was great and happy to work with me and educate herself as we went along. All was well... until she went out on her own maternity leave, and I was left with whomever. I was promptly scheduled an appointment with the anesthesiology team, presumably to see how they were going to handle my labor pains, since I already figured I couldn't have an epidural. Instead, that appointment (at 8 months pregnant, or so) turned in to the local anesthesiology team telling me I actually couldn't come to the local hospital to deliver, as I'd planned to all along, because they said I needed a "tertiary hospital" (which they actually were!) since they couldn't handle any unexpected emergencies that I may present, but a tertiary hospital could. Huh. Interesting. So, at almost full term, I was sent to another hospital, about 1 1/2 hours away, up north, in the winter, because they were better informed to deliver my baby than the local hospital was. 

In the end, I'm not complaining. They were very well informed where I delivered, very experienced with my "type" and my experience all around was great. Couldn't have been better.

And I got my freakin' epidural, thank you very much.

Still. It would have been nice to have my delivery plan in place from the get go, instead of switched on me in the 11th hour because the docs were finally admitting they didn't know how to effectively help me.

Another ill informed medical professional experience... I once got new leg braces because I expressed (as an adult) that I wished I could sometimes wear high heels if I wanted. So - he made me crazy braces that technically would have allowed for this... but I absolutely hated these braces, they didn't help me at all, and I ended up going to get my tried and true style shortly thereafter. Sure, it would have been nice to have the option to wear different heights of heel. But I'd so much more like for an educated brace maker to tell me why it's really best for me to stick with the style I have. Ultimately, that's what I got. But I had to endure crazy "I'll do whatever you want" guy first.

An let's not forget... about 2 1/2 years ago I was referred by my PCP (who, awesomely, actually does have a great knowledge of spina bifida and has been a wonderful resource for me) to a neurosurgeon up north (at the same hospital Sweetie was born at) to investigate and resolve my increasing back pain. Long story short... yes, it was found that I have a tethered spinal cord, which absolutely could be the cause of my pain (just like it was about 20 years prior). But that surgery 20 years prior, while resolving my pain, resulted in much weakened abilities. Prior to that surgery, I only needed my leg braces to get around. Ever since that surgery, I've also needed a walking stick to aid in my mobility. It's a risky surgery. And one I'm not excited to repeat, if I don't have to. Anyway... it was also discovered, at this same time, that my shunt had malfunctioned. And the neurosurgeon (who was a pediatric neurosurgeon, because heaven forbid there actually be a decent amount of docs who can intelligently manage and treat adult spina bifida patients) reasoned that that, too, could be causing me pain in my back, as spinal fluid was building up at the point of my original spine closer. Fixing my shunt functionality, he reasoned, would theoretically take the fluid pressure off my spine and ease my pain. And it wasn't a risky surgery at all.

So - that's the surgery I went with. Heck, my shunt had clearly malfunctioned, for who knows how long, as evidenced by MRIs showing a great build up of spinal fluid in my brain. I HAD to have this corrected, and it may fix my back pain as well...

Well... 2 1/2 years later and my back pain is worse than every, getting worse every day, it seems, and... ever since I came out of that surgery, my head has felt "stuffy" and "full" and I've had non stop, constant ringing in my ears.

Yippy freakin' yay. Yep, came out of that one worse than I went in. Awesome. And what has that doctor said (that doctor who has now moved away to a hospital in Texas) - The stuffiness and ringing "should" get better with time, as I get more and more post op. And also? You know, you're just aging. Things hurt. It's just the way it is. There's not a lot of history with aging spina bifida patients to know what's really going on for them and how to fix.

Awesome.

You know? All of the docs I've every dealt with have been super nice. I've really liked them, personally speaking. But, boy, have they not known what to do for me, health wise.

And all this time, I've been trying. I've been learning. How to self advocate. How to make my own best decisions. But at a certain point... you go to doctors because they are supposed to know what's what. They are supposed to guide you towards best answers. They are the experts in their fields. And so you learn to trust them. You want to trust them. You take their advise, even while investigating yourself and trying to figure out the best for yourself. 

The best answer I'd wish for is that all doctors thoroughly investigate their patients' portfolios and understand, to the best of their knowledge, their patients' full medical history and medical needs. What have their patients' tried before? What has worked? What hasn't? What are their patients' "norm"? And then - go from there with a plan best laid out for success.

But, of course, that's a heck of a lot to ask. Doctors have a lot of patients. They can't possibly keep 100% on track with what every one of them needs all the time. I reasonably know this, and appreciate it. I get it.

But - gosh! - I'm not the doctor. I go to see the doctors. And I want good, useful advice. Not best guesses. I want real answers. And I expect docs to have them.

But I have to always remind myself... I once read, not all that long ago, that med students get about 1 small paragraph worth of textbook info on what spina bifida is all about in their studies. That's it. So....

I'm the best go-to for answers on what's best for me. It's a shame, but I guess it's true. 

I'm learning. I keep trying. I've got to be my own best advocate. I'm the one with pains and problems and questions... I've got to keep fighting for my own best answers. 

Cuz nobody knows anything. 

But I know myself. 

Looking Back, Looking Ahead

When I was a child, I was quite active. 

I've always worn leg braces. Everything from metal braces all the way up to my waist, to the plastic style I wear now, and for most of my life, which are only from below my knees down. But even as a younger child with those full length metal monstrosities, I clearly remember always being reminded to take it easy. Too much activity will break the braces. And, yes, I've broken my fair share of braces over the years. 

I remember being told as a child that I either couldn't run, or at least I shouldn't. My braces could break. I could get sores on my feet. It just wouldn't be good. So I never ran. But there was this one day... I was 2 houses down from my own, playing with a friend. A storm came rolling in. I needed to get home before the rain came down. And, boy, did I get home quick! I ran so fast - like I'd never ran before and have never run since. I felt like I was literally flying. I remember, as I was running, that I couldn't believe I was actually doing this in this very moment. But I kept going. I didn't stop until I was in my house and safe from the impending extreme weather. Wow! I could run! How about that?!

I was young and wanted to have fun! With three able bodied older brothers growing up with me, I wanted to play with them as much as they'd allow (even if they didn't allow it) and do the things they did. I played kick ball with them in our front yard, complete with running the bases all the way to home base. They shot hoops in our driveway, and I did too. We played H.O.R.S.E. all the time and I became very adept at swishing the ball clean into the basket without touching the rim. Loved that sound! I also had my own jump rope and absolutely loved the feeling of hopping over a faster and faster twirling rope. Pure joy! And when my brothers got roller skates, I wanted my own pair too - and I got 'em! That activity, admittedly, was not something I was very good at at all. But my mom or dad, along with one of my brothers, would hold me up and allow me a careful taste of what it must feel like to roll around on tiny wheels. My family has always been great about offering me the opportunities to try out whatever I wanted, no holding back.

As a pre-teen, after we moved from OH to the New England area, my parents joined in with the local Spina Bifida Association. This group offered us many opportunities each year to get together for socializing, information gathering and sharing, and just plain fun. One such fun outing was a ski trip to the nearby beautiful mountains of the area. Wow! Skiing!

Now, my family in general was not a skiing family. I don't recall my parents ever going themselves or offering to take my brothers on a ski day or trip. Yet here I was, the physically disabled family member among us, and I was getting the chance to learn to ski! And indeed I did. I loved it! Spent the morning on the bunny hill, learning the tricks of the trade. And the only difference between me and an able bodied skier was that my poles had small skis on them too. This allowed me to use my poles for balance but also swoop and swish down the slope with ease. By the late morning I was going up with my instructor and dad in the chair lift, high up the mountain, and then flying down on my skies, bobbing this way and that, fast and faster still. This was such a thrill and I had really so, so much fun.

But then it was lunch time and we went in for food. While there, we took off my ski boots to inspect my feet... which had developed an open, bloody blister from all the activity and the rubbing of the ski boot against my foot in a way it was not used to before. And because I can't feel below my knees, I had no idea this sore had formed. Had we not decided to check, I would have gone back out there after lunch. But it was not to be. My fun day of this new, freeing, wonderful activity was cut short. And I've never gotten the chance to go back again.

I've also been horseback riding, both in my youth and in my younger adulthood. Nothing too taxing there, but a nice steady trot either within the riding area of the stable or out for a nice ride in the woods. Relying on this beautiful beast to carry me where otherwise I would not be able to walk. Lovely day, lovely walk, majestic new friend to help me through it all. I really do love horseback riding. 

And then, I as got older, I met my now husband, and adventured with him. Long walks in the woods, countless games of mini golf, even a vacation to France where we walked the Champs Elysees, climbed Notre Dame, explored the main and side streets of the city. All day long. Not a care - or pain - in the world. And we'd arrived there after a week on the Brittany coast, doing much of the same. Walking everywhere we could to discover the beauty and history that our surroundings offered us. And then, at night, dancing with friends at the local night club. Young, free, happy and in love. 

As an employed older teenager and younger adult, one of my first jobs was at a local, large, well-known bookstore. Shifts of at least 4 hours, maybe longer. And if my shift had me at the cash register, that was just fine for me! Tell me to stand in one spot for as long as you ask me to and I was your girl for the job! No problem at all. Chatting with my coworkers and the customers, tallying up purchases, bagging up books and sending people on their way with a cheerful "Have a nice day!" Yep, that was a great job. A little less so if I was put on the info desk, where part of the job was taking customers to the place in the store where their desired book lived. But only because I am a bit slower at walking than the able bodied person. I wasn't in pain, I was just slow. That's okay. Still, they had me on the registers as much as they could and I was happy to be there. A great first job.

Back to my school aged days - particularly high school and college... I wore the heavy backpack on my back, just like every other student had theirs to wear. Yes, I went to a small, private high school, largely because the local public school was way too obnoxiously large for me to get around in a timely way, abiding by the provided bell schedule to get myself from point A at one end of the building to point B at the other and up several flights of stairs, all within the given 3 or so minutes between classes. Sure, they could have and would have made concessions for me, like allowing me to leave class early so I had extra minutes to reach the next. And there were elevators that I could have used, but these were not there for the average student to take advantage of. One could only use the elevators if they were physically incapacitated from using the stairs. And I was not about to allow myself to be pointed out as special. I did not want to be treated differently from my peers. If they have 3 minutes to get to class, then that's what it was for me too, as far as I was concerned. And if other able bodied classmates couldn't ride in the elevators, well then, neither could I.

And so, to avoid all of this all together, and on the advice of my brothers who did go to this monstrously large school, I chose to go to the smaller, private, (all girls, Catholic) school. Me not being Catholic, but that's okay. Much easier to get around, yet still not a cake walk in any way. 3 or 4 stories of classrooms, no elevator, 2 different buildings to move between. Yes, and heavy, heavy backpacks holding me down, But I did it, gladly, relatively easily, and happily. No troubles here. High school was as good of an experience as it could have been. 

As was college. Yes, I was able to secure a first level dorm room, which I was allowed to keep for 2 years in a row. This being easier than walking up and down staircases in our old dorm buildings, again with no elevators. But I walked the campus to each of my classes every day. Sometimes close by, sometimes not so much. But I did it with not much trouble at all. Ah, to be young again. 

I have always been able to walk about as I've pleased, whether we're visiting a large museum, exploring a small town or big city (NYC! Central Park! Time Square! What an adventure!). I've walked miles at once down forest paths, enjoying the time with Hubby and Sweetie as they geocache and I simply cherish the time together. And, yes, with Hubby by my side I've always had the pleasure of having his support as he holds my hand or lets me lean on him as we go on. And, as time marches on and I've suffered the ever increasing displeasure of more and more pain in my back and numbness in my legs, I'd have to increasingly stop, sit, and rest a few minutes before I could carry on. But carry on I always did and always could. Moving on!

No one has ever made me do more than I thought I was able to. And my walking companions - namely, Hubby and Sweetie - have always, always given me the time and space to rest when I needed it and move on when I alone determined I was able to do so. No judgement, no rushing, just me knowing what my body could do and when it could do it, and they graciously abiding by the will of my abilities. All is good, all is well. In my own time.

But now. No. Not anymore. No more forest walks. No more adventurous explorations. Heck, no more grocery (or most any) store.

And yet... the occasional trip to Target now has me tooling through the store using their electric seated carts - and I feel free again. Able to shop as I need without pain, numbness or exhaustion. Yay! Visits to museums (in pre-Covid times, anyway) have me rolling through the hallways and exhibit rooms using loaned wheelchairs from the front desk - and I am thrilled that I could go on forever in this way, not holding myself or anyone I'm with back from seeing anything we wish to see. I don't feel embarrassed or like a spectacle or different or anything I feared to be back in the day. I feel free and able and happy to have these options that can help me live a more full life than without them. 

Hubby doesn't geocache much anymore, but if he were to pick up the hobby again, he'd simply do it on his own or with Sweetie, never expecting me to join along. We haven't really vacationed much lately, and certainly with the current pandemic, we don't have plans for much travel coming up. But when we do get back to adventure as able, we will adapt, adjust, and make sure helps are in place to make the experience work well for me. I'll still get out there, it will just, perhaps, be in a new way. And also, once I have my nerve stimulator placed, that may in itself be all I need to feel young, free and able again, just like I did in my previous years. That will be lovely. I'm hopeful, but we'll just have to see.

But whatever the case may be for me - I'll find my way. I'll keep doing what I want, in a way that is best for me in my current situation. I'm not going to stop. I'm just going to change. Change with the times. It's what we all have to do, right? Getting older has changed me, for sure. It changes everyone. But we adapt. We find our new way. 

And we find the best way to feel as free, able, and happy in the moment as we can. Times change, bodies and abilities change. For all of us. But there is always a way to do as you wish, engaging in loved activities in meaningful ways. 

Carry on. It can be done. No holding back. No looking back...