Exploring the Term Disabled

I just read “Demystifying Disability” by Emily Ladau. I wish this was required reading for everyone. I was on page 11 of my library copy when I ordered one to own (and loan!)!

I’m not super sensitive with the terms people use and such but I do recognize, as the book hints at, how people can be easily offended. My biggest takeaways? Just ask what people prefer and don’t walk on pins and needles you may offend someone. If you say something wrong? Just apologize and move on!

I understand and am ok with, in the eyes of society, I’m disabled. Some people act like “disabled” is a horrid word; me not so much. I need the accessible stall in the bathroom, have a car placard that lets us park in accessible parking spots, and I use a mobility device, to name a few things many people don’t have to deal with in their own life.

But in my mind I’m not defined by the term disabled…I’m Logan. Mostly because for the first 30 years of my life I was not disabled. I also see, especially after reading this book, how lucky I am. Some people have other, more difficult limitations that I do not.

When I was admitted, my surgeon really under prepared me for how this would impact me. Probably for a year after my surgery when doctors or therapists would explain the length expected I incorrectly thought ok it’s hard now but I’d more easily get back to exactly how I was pre-surgery.

I still daily have bouts of being like “this isn’t fair”. But as it says in the book; “disabled lives are worth living”. So true. I’m not going to NOT continue my life because I’m now disabled. C’mon.

Though I have one qualm. The author chastises the plot of book/move Me Before You for implying life isn’t worth living with a disability. Unlike the author, the main character Will, and me, lived a whole life before being disabled. So is life not worth living? no, of course not. But is it drastically different to the point of not feeling life is worth it? I can attest this is a very real thing to process. Hopefully, like I did, a person can move past that. But what Will grapples with is realistic.

That aside, this a quick must read. Honestly this could be the best thing I’ve read.

SkyRise Chicago-Support Request

The owner of where I work out for years has suggested doing this challenge. This is the first year I’m physically capable, and was feeling confident that I could do this as a part of a team. Yes I would need help but I trust my trainers to keep me safe.

Well…in a world where so often I cannot do something because of my recovery, I suffered from severe knee pain in the Spring that made participating a total no. The whole ordeal was awful; I had to deal with an asshole of a doctor. I’m so glad to be past that but it was a painful and stressful thing in my life. I ended up getting a Cortisone shot.

While the doctor tried to say he saw wear and tear which maybe indicated need for surgery which I disagree with; I have 33 years of use including being overly hard on them with dancing so no shit they have wear and tear, I do need to not overdo it with biking and stepping.

I was therefore thrilled that SkyRise Chicago was offering a virtual option to participate! You can read more on my page, but I’m challenging myself to do a 2+ mile walk twice before November 7th.

Apparently while I was still in the hospital my parents toured Shirley Ryan and my mom said “oh yeah, this is Logan worthy.” I spent 6 weeks there and, even though I was in a horrid state, it really is an outstanding facility. There’s a reason Shirley Ryan is one of the top rehabilitation places in the country.

I’m so happy to FINALLY be in a position to give back to somewhere that really helped me out. It’s truly an honor to participate, and I please ask that you support me!

Explaining My Blogging Break

Hello! I know, I haven’t posted in two weeks. Yup. I needed to temporarily drop something/needed a digital break. I had two big things cause this need to not blog.

First of all I took a long weekend trip with Kevin and Glen to celebrate 5 (!) years together. Kevin was sweet as always, Glen was hilarious (at first he was acting like “where the hell did you bring me?”) but it was very anxiety inducing for me. Unlike my trip this summer, the house wasn’t as user-friendly. I explained here but anything outside my routine is stressful.

I discussed my unease early on with Kevin; he was very understanding and said “you’re just not there yet and that’s ok.”

Unfortunately, being away for a weekend left me feeling like I was scrambling to catch up. It took me a week and a half to feel not stressed and to get things done, even not important things like listening to podcasts. I like to be busy and I do this by spreading things out over the week, so anything different I get temporarily very stressed.

The second thing where I knew I shouldn’t force write posts was my mood; I honestly felt a lot of rage and feeling sorry for myself and I didn’t want that tone to come through in my writing.

I’m not totally better but those negative feelings are a lot more balanced with optimism and drive again.

I hope you enjoy my resumed posting!

Last Week

Last week was A WEEK. I can’t remember the last time I was so stressed. I have two immediate reactions to stress: I’m extra emotional aka anything small can bring on tears and my appetite goes away.

In times of high stress it’s very important to still keep up taking care of yourself. The #1 thing is sleep; if you don’t sleep well overnight plan a nap into your day. Eat well even if, like me, you’re not hungry. If you know a stressful time is upcoming, make and freeze healthy meals you can eat when you don’t or can’t make time to cook. Finally, keep moving. Do not reason “oh I’m busy. It’s ok I can’t workout.” NOPE. Sure you don’t have time for a full blown workout, but you can take a walk or take 10 minutes to stretch.

I’m not writing this as a way to brag but more-so to show “i’m super busy” can still equal being productive. This week I:

-Worked 11.5 hours which included 4 hours of live meetings

-2 1 hour sessions with my personal trainer

-A 1 hour session with my therapist

-A Pilates session

-Going into Hallmark

-A bike workout

-My annual gynecologist appointment

-My weekly 4 hours at my friend’s house

-Starting a blogging self study course

-Watching my 7 (yes 7) weekly shows

-Reading

-Writing my blog posts for this week

What really helped me, especially with work is taking the approach of what must get done now and what can wait. I also started the week by writing a note on my phone of goals for the week that I could delete things as I accomplished them.

Any tips that help you manage a busy schedule?

Current Mood

My momma surprised me with flowers-I love flowers!

My grandma used to say “some days you eat the bear and some days the bear eats you.”

I’m a new Color Street nail fanatic and these have been my favorite by far.

I was very busy last week. I love being social and having plans but I came off those busy days feeling overwhelmed and run ragged.

PSL: I had to, it’s a fall staple!

So I’m saving my longer post ideas and instead putting up some lighter ones this week.

Always makin’ me laugh.

My Voice

If you follow me on Instagram you know I recently posted some videos of me pre-surgery talking. I had someone ask me if I’ve been told I’ll get my old voice back.

Here’s the thing with brain injuries. Unlike say breaking a bone, every case is different. Some people have a tumor and are in many ways how they were before; walking and talking. Some cases are like me; much more devastating and more evident after effects. Because of this no one will (or should) give me a definitive timetable. They do say, and this is consist, past progress is a good indication of future progress.

I have aphasia, a clinical term that means I comprehend totally as I did before but I communicate differently. I have worked with many speech therapists to know strategies so that my intelligibility is there, My research shows that aphasia continues to improve over years if not decades.

So yes it’s heartbreaking to not have my old voice. But the progress is pretty remarkable;I mean in January 2019 when my parents brought me to their house I was pointing to spell out words on a letter board. It’s hard to talk to people with such a slower, weird voice.

This is in no way confirmed by any sort of professional; I’m just assessing the situation logically. I thought for a while I had permanent damage to my vocal cords. After my surgery I was talking in my old voice. However, at one point I had to have a feeding tube…which I pulled out three times before they put cloth restraints on my hands.

People are like “didn’t you understand this was wrong?” No. When you’re in a state like I was, the simplest animalistic behaviors transcend any logic. I absolutely did not want to be in the hospital. So because of that I did “stupid” things, including potentially causing permanent damage.

But: when I got discharged I was on a thickened liquid diet, and had to pass a swallow test from a voice doctor to get off that. This entailed having a camera put down my throat (man the pure shit I’ve had to endure from this). The doctor said everything looked great and I passed. I would think he would have mentioned seeing any damage.

So I don’t know. I probably need to have a voice specialist do a more comprehensive look. I’m cautiously optimistic time is the true key to getting something back I’m happier with.

My Small Victory

It’s extremely easy to assess this recovery as very before and after, and not acknowledge the progress.

I have a small, but really big victory.

In December 2019 I went to see the Star Wars movie in theaters with Kevin and a friend. Because it was in a huge theater and we didn’t realize you could enter on the second level we had to go up like 30+ stairs. I can do stairs no problem, but I remember how exhausted I was after; I felt like I had to spend the whole movie recovering.

Contrast that with last week. I went to my therapist for a session and afterwards my mom said “bad news. The elevator’s not working.” (Her office is on the second floor.) I said no problem, my mom took my rollator down then walked me down the stairs. It’s maybe a 15 step staircase and it was absolutely no big deal and had no impact on my energy level.

That’s proof of building endurance. Yes it takes time but it can be done.

The Huge and Embarrassing Side Effect of My TBI

Every single day I experience many things that are vastly different than my life before surgery. I could (and sometimes do) get hung up on the severity but I try to not and instead just laugh at it and move past it because otherwise it can majorly bum me out.

Thankfully not much in my demeanor has changed. Some may say I get frustrated easier but I think it’s more because I’m having to deal with more stressful things much more frequently.

But I’ll tell you what has changed; I’m much more apt to get emotional, aka tear up. Now I’ve always been on the emotional side. I’m sensitive to an unusual level; I remember several incidents reducing me to tears. But I had the ability to get in an appropriate setting, like a bathroom, before crying. So of course any medical issue would get me emotional.

The embarrassing thing though is most of my appointments with doctors are relating directly to my recovery and even if they aren’t it’s still a topic of conversation. It’s very difficult for me to speak about how I’m doing without getting teary.

While I may be ok with that making me emotional, I also find anything that’s not great runs the risk of getting me upset. Conflict, normal life developments, etc. I prefer written communication because yes I type better than I talk but also that eliminates the chance of me being embarrassingly emotional.