40 Years of Disability (1984-2024)

I've given a lot of thought about whether I wanted to write this post or not. After a lot of back and forth, I decided to go for it. I have some thoughts and just want to get them out.

First of all, if you want to know this full story of how I became disabled, please see this post. This blog post is not about how I became disabled, so please refer to the link if you want the details. I wrote it in 2013, but the story is still the same. 😀

On December 21 of this year, I will have been disabled for 40 years. 40 years!!!!! Sometimes I have a hard time wrapping my head around it. I was very young when our car accident occurred, and I turned 46 this year. No matter how you count it, that's forty years. Let us walk down the road of a few musings, shall we?

I've gone on record saying that if I was destined to be a paraplegic no matter what, I am grateful I was a child when it happened. I still believe that, for the most part. As I've gotten older, I've embraced the fact that it's ok to say that it wasn't fair. While children adapt quickly and are very resilient, it isn't fair that they should have to. It wasn't easy being a disabled wheelchair user as a kid and it's ok to feel sad for her sometimes. I did miss out on some basic childhood experiences while being in a wheelchair, but I don't feel resentful. 

Public accessibility has always been a thorn in my side. Between local historical buildings that have the bare minimum for wheelchairs, disabled parking, and the fact that the average home has multiple stairs, it's hard to simply exist independently as a wheelchair user. Not to mention the constant "help" not offered, but put upon by well meaning folks. Being "kidnapped" while simply trying to push yourself up a ramp or down a sidewalk, being infantilized by folks who simply don't know how to speak to a disabled adult, to being hailed a hero and an inspiration for simply pushing a cart through the grocery store as you do your weekly food shopping. I'd like to say that ableism has gotten better as folks have become more educated, but that's not the case. That's a blog post for another day.

I do recognize that I'm fortunate in the fact that I do not deal with pain that often comes with having a spinal cord injury. My only aches and pains are those of getting older, and a heating pad and an Advil will usually take care of it. I also have osteoporosis in my lower body due to nonuse. An x-ray of my  legs look like those of a non-ambulatory 90-year-old, and unfortunately, there's nothing I can really do about it. It's one of those things that comes with being a paraplegic. 

I'll end my thoughts with one more point: after 40 years of being disabled, I truly wish that I could keep the wheelchair and ditch the disability. Not being able to walk is just a small window into my world, and I won't go into the details. I assure you, no one wants to hear about them. A Google search of paraplegia can give you the facts. If my day to day was only about sitting and not walking, my life would be a lot simpler. Unfortunately that's not the case so I deal with the cards I've been dealt. 

I know I've come across somewhat bitter in the post, but I will chalk it up to fatigue. Life is busy lately and I've been thinking about this anniversary the past couple of months. So please, be safe out there and please wear a seatbelt.

For reference, this pic was taken of me a few months before our car wreck. I know, I know, it reeks of the eighties.

This is me now 🤓

Anxiety Update

FULL DISCLAIMER: This is my experience. No one has the same struggle and anxiety is different with every individual. Please consult professionals for health advice!

TMI! You've been warned!

2018 was a an interesting year dealing with anxiety. For the most part, I managed it well, but it was still a struggle. Back in November, I gave my problem a lot of thought and thought there had to more I could be doing. The thing I could never get out of my mind was how I seemed to develop anxiety almost overnight. One day I was fine, and the next day the rooms were closing in on me on a regular basis. The best way to describe the feeling is to watch season 3 of Netflix's Daredevil. The character of Dex/Bullseye has was sounds like a beehive in his head during his moments of panic. That is EXACTLY what my anxiety felt like!!!! While watching the show with my husband, I actually paused the show and said, "That! That is anxiety, RIGHT THERE!" Of all places to identify, Daredevil. AWESOME series, you should totally watch it, if you haven't already.

Back to November.

I evaluated everything I was doing to manage and what I could be doing more/differently. I tracked my anxiety back and when it actually started. What was going on in my life? I nailed down when I began to feel panicked and you could have knocked me over with a feather. I started taking Nora-BE back in December of 2015. I was having horrible menstrual cramps and begged my doctor for help. After trying a few kinds, I landed on Nora-BE. Thankfully, it helped my cramps and I could live my life again.

I gave it a lot of thought and decided to come off the pill to see what happens. I told myself that if I got 50% relief from my anxiety but had horrible cramps, I would be perfectly ok with that. That was a trade-off I was willing to make. Within a few days, I began to feel a huge difference. I had reached a point in my life where I couldn't be in a tight, stagnant crowd without the head buzzing, a blinding headache, and the feeling of panic. This horrible feeling was gone. Not lessened, which was my tentative hope, but gone.

I took my last dose of Nora-BE on Thanksgiving evening. I'm feeling so much better, both physically and mentally. Another surprise, my cramps are just fine. I've had 2 cycles since I stopped the pill and they haven't been bad at all. I've also turned 40, so that may make a difference as well. Medication affects people in different ways, and long term, this one made my life very difficult. After coming off the pill, I feel so much more present in my body, if that makes sense. Before stopping the pill, I went and read the side effects/possible side effects of this particular pill. Good grief, no wonder I had anxiety! I really kicked myself for not considering this earlier, but I truly had never thought my anxiety was a result of the pill.  Lesson learned.

Like I started this blog with, this is MY experience. I'm not suggesting that anxiety can be magically cured by coming off a medication. I also believe that meds have helped people with anxiety and depression and I am not anti-meds for these. I'll end this too-long by encouraging anyone who has had anxiety issue like mine to please talk to a doctor. It took me a long time to admit that I was having a problem, a long time to not be embarrassed about it, and a long time to realize and take comfort that I wasn't alone. I isolated myself and didn't participate in a lot of things I normally would have in the past. It really took over my life. If you see a doctor and don't feel heard or understood, see someone else!

One Step Forward, Two Steps Back *le sigh*

I never, EVER had intentions to make this blog a source to write about my disability. That was never my goal. But lately it seems like I am facing more issues not only with people, but with businesses. I feel that in 2019, basic accessibility in public places should be a done deal. Sadly, this is not the case.

I came into my local Starbucks with the intention of blogging. I didn't blog much at all last year and I miss it. Anyway, as I came into the store, I realized I hadn't actually been inside in awhile, just gone through the drive-thru. (You know my sitting and chilling heart belongs to Lasaters, but I digress.) My mouth dropped open as I came in and looked for a place to set up my laptop.

It may not be evident to the average eye looking at the room without being here, so let me explain. There were 4 tables in the store that were accessible, but they were all taken. The rest of the store had been filled with 2 long rectangular tables instead. HIGH tables with stools, no less. Oooooook, I thought. Having no choice, I set up at the end of the table. I ended up sitting to the left of the man in the orange sweater. I make the best of what I've got. Here begins my frustration.

These pictures show the problem. My laptop is in front of me, my webcam at eye level with me. I'm typing on my laptop just a few inches shorter than shoulder level.

Starbucks, I ask you, in what world was this a good idea?! It isn't like I came in here and every available table was taken and I had nowhere to set up. Nothing at all wrong with that. You've made 50% of your establishment inaccessible to wheelchair users! A ton of other wheelchair users have chairs much more closer to the ground than mine. If they wanted to come in and use their laptop, they couldn't. Starbucks. A coffeehouse. Yes, the long, high table makes it possible to fit more people in here. The idea was spot-on, the end result just not wheelchair friendly. 🤦🏻‍♀️x 1,000,000

See you tomorrow, Lasaters. I won't be back inside this Starbucks until these high tables are gone.

Perceived as helpless...what?!?!

I harken back to a blog post I made last year:

A Wee Request

I'm still going through this and am struggling. This past weekend, after a morning of being pushed up a ramp I never asked help for, something came to my mind. It was in the opening lines of our choir singing, "Thou, O Lord." Am I the problem? Am I doing something that makes me come across helpless? Am I carrying myself in a way that screams, "Help this woman!!!!!"

Like the blog I mentioned above, it's killing me people not taking "no" for an answer, then taking over a task for me. I was at a buffet line once and heading back to my table. A man asked me if I needed help, to which declined. He said, "Here, let me take this for you," proceeded to take my plate from my hands, and take it to my table. Situations like that. I may look like I'm struggling doing something, but if I haven't asked anyone for help, I don't need any. If I haven't asked for someone to push me up a ramp, or push me at all, for that matter, I can make it on my own.

Again, like I said in the other post, I believe most people's intentions are kind and well-meaning. I stay quiet and don't really say anything when this happens. I don't mind being offered help, not one bit. It's people not taking "no" for an answer, or just doing it with asking for consent at all, is what I'm struggling with. In the end, they aren't doing me any favors, only making themselves feel good. I know I sound bitter and ungrateful, but this has been happening to me a lot lately. It has gotten to the point that I have been second-guessing myself: is this something I'm doing? Do I actually look helpless and just don't realize it? What do I do, if anything, to change this misconception of me?

At the end of the day, people are going to think what they will about me and my disability, and I'm totally fine with that. Whether they are right or wrong in their perception, I have no issue with that. I do, however, have issues with how I am treated based on that perception, or misconception. Most people with a disability want nothing more than to be treated like any other human being in this world. To not be favored, pitied, separated, infantilized, or condescended to. I am one of these people. I've spent the last few days thinking about this and what it is my power to make this happen less. I honestly have no idea.

Update on My Current Struggle

Before you read any further, please take a moment to read my previous blog post about anxiety, if you haven't already.

http://poohskitten.blogspot.com/2016/09/my-current-struggle.html

I'm really sorry to say that I have still been struggling with this. Outside of church, I've learned how to make it manageable. In most public places, as long as I keep moving, I can deal with the crowds, the noise, and the height of others pretty well. Unfortunately, in tighter situations, I'm still having the same struggle.

As far as what I wrote about in the above blog, the choir room/church, I'm in a bit of a fight or flight point. I am a part of the choir room for, at most, 20 minutes between services on Sunday morning. Sometimes I just stay backstage and join the choir when the come into the worship center. There are times I absolutely have to stay in there because I need to review the music we are performing that morning. In that case, I look at it as I have no choice. If I decide to stay and fight, I get a massive headache, complete with throbbing in my ears and pain all the way down into my teeth and jaw. If there is loud conversation around me competing with the singing, add in tall people around me, that is when I sometimes flee. I either leave the room and go backstage, or I simply exit altogether and go home. My car becomes my sanctuary. The peace, the silence, the cool air blowing in my face. I've been known to absolutely burst into tears when I do this, though: the frustration, the pain, the embarrassment, and the fact that I feel completely out of control of a simple situation.

I worried all Easter weekend that I wasn't going to be able to do all of the choir performances we had scheduled. I managed our Saturday just fine; it was just 2 performances. Easter morning we had 3, back to back. I told myself I'd reevaluate how I felt after second service was over and make a decision about third. I felt I had to try my hardest to make it all three services, for many reasons. The day went pretty well, I made it the entire morning. I have to admit, however, that I was completely mentally and physically exhausted and ended up going to bed at 8:00.

I did a Facebook live video yesterday after walking The Greenway. I mentioned how wonderful it was to get outside and on the path again, and alluded to the fact that I was thinking about quitting certain things because of the anxiety I'm dealing with. Before Easter, I had painfully been thinking about quitting choir. I don't want to, I truly don't want to. I love singing more than anything in this world, and it's something I work hard at and take a lot of pride in doing. I can't walk, but I can wail, you know?

This really started coming to a head last summer. I sat down with Scott after we got home from Chicago and admitted, "I don't think I can do this anymore." To that end, I'm most likely not going on the Atlanta trip our choir is taking this summer. I feel ok with this decision, but it frustrates me. Being disabled/using a wheelchair, you are separated from people in most public situations, just by design. This just pulls me away from people even more. Like most people, I can deal with problems that have a solution. The solution to this problem just hasn't presented itself yet. I'm doing the absolute best that I can, and sometimes I have to say no to doing things.

I think what makes me so down about this situation is that this used to never bother me. People being taller than me, noise, crowds, all of it. I was never claustrophobic, never had anxiety; and now I do. Why? I may never know, but I'm working hard to find a way to deal with it. I've really appreciated those dealing with anxiety talking to me and sharing their experiences. It reminds me that I'm not alone, and that it's ok to feel this way.

A wee request

Something I've had a hard time with lately is people not taking "no" for answer.

For those new to my blog, this is me:

I'm, obviously, a paraplegic. I have been since I was a child. I've been disabled for 32 years and am extremely independent. Back to my semi-rant.

I sometimes feel that I look helpless. Nothing has changed in my health, body, or how I get around at all, but I find more people offering me help lately. That's not a big deal; I appreciate the kindness of others. But people seem to be taking over for me a lot lately. I turn down an offer for help, they insist, and take over a task I'm doing, or take something I'm doing away from me. I know I should probably just lighten up, but it is honestly taking my taking my independence and dignity away. It's frustrating and embarrassing.

For example, I was transferring into my car one day and someone approached me. I had just taken the brakes off of my wheelchair to begin tearing it down. (Note: I have a video on how I do this on my blog. I will link it below.) He asked me if I needed help, to which I cheerfully replied, "No, but thank you!" He then proceeds to take ahold of my wheelchair, move it away from me, and go on to say, "No, really, let me help. What do you need me to do?" Now, mind you, I was tired and had a horrible headache at that time, so I told him, "You can kindly put my wheelchair right back where it was. Thank you!" I was actually livid and drove my tush to Starbucks and got some coffee to calm down, and caffeine for my headache.

Another example, I was at Publix. I had just gotten in line and was unloading my very full cart. I felt someone get in line behind me. A woman comes up to me and asks if I needed help, to which I, again, told her, "no, but thanks!" She said, "Here, I'll do it." There was no stopping her. I was so embarrassed.

I know, I know; I seem really rude, testy, and unkind towards people who are just trying to help me. But think about this: as people get into their Golden Years, we try to do everything we can to help them keep their dignity, correct? Let them do what they are still capable of doing, not talking to them like they are children while they are still quite lucid, etc. The same goes for people like myself. Not taking "no" for answer in these cases is embarrassing. It's saying to someone, "I know you say you can do x,y, z, but I'm going to do it for you anyway." The reason people do this is because it makes themselves feel better. They did a good deed for someone disabled.

I've worked extremely hard to get to where I am now. When I had my car accident, I spent a lot of time in occupational therapy. OT is therapy that teaches you how do to daily tasks that you now have to do in a different way. For example, I had to learn how put on socks and shoes without lifting my feet, how to get dressed while not standing, things everyone does in their daily life. I also had to learn how to open and close doors in a wheelchair, how to go up AND down ramps, and how to acquire balance in a wheelchair. When I got older, I had a therapist teach me how to get in and out of cars. You get the picture.

I'm not shy about asking for help, or accepting help when it's offered and I truly need it. Really, I'm not. I truly don't know what to do in these kind of situations, other than just keep my mouth shut and quietly seethe. I know people's intentions are good and 99% of the time; people are just trying to be nice. But I did need to vent about this. I guess it goes back to my major complaint about being disabled: you are never invisible.

Link to blog about car transfers:
http://poohskitten.blogspot.com/2013/10/ta-da.html

My Current Struggle

As you know,  I'm a paraplegic. I have been a para since I was six years old. I feel that I handle my disability pretty well and accept my limitations, for the most part.

In the past year, I have been struggling with some mild anxiety. It's happened when I am around a group of people in a tight surrounding, mainly when those people are standing. I just get overwhelmed and feel like I'm shrinking. This feeling is intensified by loud noise/voices. If I can get away from the crowd and get fresh air and some silence, I do pretty good. For the longest time I just chalked it up to being introverted and needing my space.

Why am I writing about this? Because this was never an issue with me in the past. I know these things can just develop for no reason, but honestly, I'm simply frustrated with myself. It's a total control thing, I know, but I when you are disabled, a lot of your daily life is regimented. Anxiety, claustrophobia, and panicking was never a part of this equation.

My problem seemed to be manageable until a few weeks ago when I was at church. I was in the choir room with rest of the choir, preparing for the next service. The choir room was absolutely stuffed to the gills with people and no room to spare. I was sitting in my spot and since there were no chairs left, there were a lot of people standing, some near me. With everyone towering over me and the noise level being so loud, I felt the room start to close in on me. We went out and sang the service, and I went back to the choir room for my connect group.

I had fought tears the entire worship service. They were tears of frustration, tears of the feeling I was in the way, and feeling like I was on the verge of just completely breaking down. I didn't hear a word of what was talked about in our class; I just tried to concentrate on my breathing and calm down.

After the class was over, we had another rehearsal before we went to sing in the third service. The crowd and the noise level was even worse. One of my friends got my attention and asked me if I was ok. I just looked at her, raised my hands and told her, "It's just so much." She knew exactly what I meant. At that moment, an individual "woo-hoo'ed" really loud next to me, and it was like the dentist hit a tooth that had not yet been numbed with a drill. I fought everything within me from just bolting from the room and leaving. Honestly, I wish I had.

After singing in that final service, Scott and I left. We went to pick up some lunch to take home and I just waited in the car. He came back to find me sobbing. I felt such a release in crying and it was really hard to stop. He knew what had been going that morning and calmed me down.

I struggled all day with being embarrassed about what happened. Once I was feeling better, I couldn't help thinking that I was being ridiculous. Rooms are crowded and loud, everyone is taller than me, and sometimes life just isn't fair and you need to deal with it. First world problem, Lindsay. After a lot of thought and speaking to people who deal with these kind of feelings every day, I realize I have nothing to be ashamed or embarrassed about. I didn't want to feel this way; it was my body's natural response to a stressful situation.

I'm putting this out there to remind everyone that we are all human, and that we all have things that we struggle with. I also hope that someone reading this has some tips for me to help with these situations. I have solved my choir room problem for the time being, but I will take any and all suggestions.

If you made it through this wall of text, I thank you!