Don’t be so hard on yourself

Life is hard.  Like, really, really hard.  Work, bills, loss, stress…it all adds up.  Life is also beautiful.  Friends, family, kind deeds, thoughtful words, the beauty of a sunset.  It can all be beautiful.  It’s not one or the other.  It’s not so black and white.  But sometimes, it’s hard to see that.  When you’re on a high it’s hard to remember that life can have it’s downs.  And when you’re down, it’s hard to think you’ll ever get back to a happy, or even normal, place.

I try to be a positive person.  I am good at finding silver linings and positive twists on things.  And I try to share that positivity, both on this blog and with people I know.  But it’s also really easy for me to go to a negative place.  You know, the place that’s filled with “I can’ts” and “I miss” and all the other things that one should try to keep at bay.  But, why should you keep those negative thoughts away?  If you ignore the negative I think they creep back up and overwhelm you.  And it’s easier to swim in the shallow end of a pool than in a tsunami.  (I don’t know if that exactly made sense, but I think you’re getting what I’m saying.)

Loss of mobility is hard to deal with.  Yes, I can adapt (and have) pretty well.  But it’s still tough.  There are things I can’t do anymore.  That’s something I have accepted.  I do my best to find a positive side to things I can’t do (i.e. I can’t walk, but at least I don’t fall and scrape my knees up like I used to) when I can.  But there are still times when the sadness creeps up and I get emotional.  And then I look at everything I can do and recover from the sadness.

Recently I wrote an article for a magazine and I tried to cover this very topic in it.  I talked about how the first time my son went in a pool, I wasn’t able to be in it with him.  We were at my aunt’s house for a family party and there is no lift at her house.  My husband and mom took my son in the pool and baby boy had a blast!  But it was really, really hard for me to not be a part of that.  Sure, I could have gotten in the pool (you know, gravity) but it would have been hard to get out (again, gravity).  And then it would have been about me and my safety which would have taken away from the Little Mister’s first pool experience.  In the article I wrote about how sometimes you just have to accept that there are some things you can’t do and find ways to turn them into a positive.  In the pool example, I mentioned that I took one million photos of the Little Mister in the pool to commemorate his first swim.  If I had been in the pool we would have missed out on those photos.  See, positive outlook!  I was still super sad, but at least there was some positivity that allowed me to move on and not be overwhelmed.

The editor told me that I was being negative and said something along the lines of “where is your can-do attitude?! There are public pools with lifts that you can use.” That wasn’t the point.  I do use public pools with lifts.  I love swimming.  I’m part mermaid.  And I appreciate that the editor wants to portray a positive image.  But the point is that I was in a place that didn’t have a lift and I missed out and I was sad.  But I dealt with it and moved on.

And I guess the point of this blog is that if all people do is portray positivity it makes the people going through hard times feel alone.  Or misunderstood.  Or unrelateable.  We all have down days.  We all have things that hit us the wrong way and make us sad.  It’s human nature.  And when you have a disability there are things that will come up that you can’t do that will make you sad.  And yes, there are ways to adapt.  But sometimes that isn’t an option.  And to ignore this publicly is to make others feel that they are all alone.  I’m here to say that you are not alone.  We all struggle at times.  We all get down at times.  And, even when you’re in the thick of it and feel that life is going to overwhelm you, it will get better.

And acknowledging that isn’t negative. It’s real.

First wheeled trial

Last week was big for me: I did my first jury trial in a wheelchair.  It’s crazy that I’ve been in a wheelchair for 2.5 years and it was my first one.  I say it’s because I am really good at pleading out cases (which is true).  But, I’ve also been hesitant.  The ones that I knew for sure were going to trial I was kind of pushing off.  And then the ones that I wanted to go to trial sooner ended up getting pushed for reasons beyond my control.  Such is the chaos that is the legal profession.

But last week, a case was ready, and away we went.  I was nervous.  Not for the case.  I felt as prepared as possible for that.  I had a whole other set of worries.  Would the jury be preoccupied with my wheelchair to listen to my arguments?  How was I going to take notes and address them at the same time?  I can’t use the podium because they’re wooden and set to a standing person’s height.  Not very wheelchair user friendly.  And things like standing as a way to show respect to the judge or jury.  Those were out the window.  Would they understand that I was still trying to be respectful?  Before my so called wheeled life, I would stand every time I addressed the judge.  And I would stand when asking questions.  It was professional.

But, I pushed all that aside so I wouldn’t be distracted from the main goal: winning.  The jury didn’t seem to react outwardly to my wheelchair.  They seemed to be focusing on the facts, which is exactly right.  Though, in my closing arguments, my investigator said a few of them were watching intrigued as I put my pointer and whatnot in my cup holder (I call it my “holster”).  Apparently they thought that was clever.  I hope they’re as amused by my arguments as they were by my cup holder.

Overall, it wasn’t that different from when I was walking.

Negatives:

-Couldn’t stand for the jury or judge

-Couldn’t use the podium

-Couldn’t bring in my normal wheelie bag to carry all my stuff, so I was limited on what I could bring in.  I have some big cases coming up with way more files.  I’m going to have to figure something else out.

Positives:

I love my job and I’m doing it.  Nothing can stop me.

Ladies and gentlemen, the positives win.  Now I go back to waiting for my jury to return a verdict.

P.S. Shout out to the hubs who taught me the difference between an ax and a hatchet.  There was one involved in this case and that was actually a pretty big difference.  I was able to educate the judge and DA.  So, thanks hubs!

Abilities Expo 2016 (Los Angeles)

This past weekend was the Abilities Expo at the Convention Center in downtown Los Angeles.  This was my first year going, though to be fair, I’m not really sure if there were any before.  I’m assuming there were by the way people were talking.  But either way, it was my first time going.  I’m glad I did.

The hubs, the little mister and I went.  This was the first time taking the baby on any sort of road trip and excursion.  He did well, which was a huge plus!  Parking at the convention center was a nightmare.  There was a designated lot for the Abilities Expo.  However, there weren’t any additional handicapped parking spaces.  Doesn’t it seem like common sense to increase the number of wheelchair spaces when there is a convention aimed at people in wheelchairs?  We were lucky enough to find a space on the opposite end of the elevator that was next to another empty space.  So, at least I was able to get out of the car OK.

The other downside was that the configuration needed a little work.  Checking in, there were long tables and two rows on the pre-registered side and three rows on the on-site registration side.  The tables were next to each other.  The entrances were on the opposite ends of the tables.  So, if you were on any of the inside rows, you had to backtrack and cut through the lines of people.  This was super hectic for us, with me being in a wheelchair and the hubs pushing the stroller.  And, given that a majority of the people were in wheelchairs or with wheelchairs, it was hectic.  The aisles inside the convention were fairly narrow too.  For a normal convention, I’m sure they were fine.  But, again, factor in the amount of wheelchairs, and it was jammed.  There were tons of traffic jams on the inside.

Ok, those were the negatives.  Now for the positives.  It was amazing to see so many people in wheelchairs in one place.  All ages and walks of life.  All different levels of functionality.  It was pretty cool.  I overheard people who were friends on Facebook meeting in real life.  That was pretty cool, and a testament to the benefit that the community groups on Facebook provides.

I had gone looking to talk to a representative of Tilite, the wheelchair company that I currently use, as I want to order a new wheelchair.  But, then I met a representative from Colours, another wheelchair maker.  I’d heard of them, but didn’t know much about their chairs.  Within seconds of my going up there, the man identified the 3 main things that I hate about my wheelchair and told me how they would fix it on a new wheelchair.  An added benefit is that they are manufactured about 45 minutes from my house, so I can go there to get measured and have it repaired if it gets fixed.  So, that was a huge benefit of going to the Abilities Expo!  Opened my horizons, for sure!

I picked up a FreeWheel, which I’d been thinking about for quite a while.  I’d already bought the Dragonfly wheelchair attachment, which turns my wheelchair into a handcycle.  That was a pretty great investment!  If a person is looking for a great way to exercise, I recommend this!  I’d been looking to add the FreeWheel to my collection which will be amazing for my trips to Wyoming.  It’s going to open up more outdoor areas: grass, dirt roads, etc.  And I’m looking to use it in my own backyard so I can finally start a garden!  I was stoked that they were selling these at the Abilities Expo and can’t wait to try it out!

The coolest part of the Abilities Expo may have been the bikes.  There was an exhibitor showcasing their bikes which had been specifically designed for people with disabilities.  The pedals were held up in the front, which is huge for a person with drop foot, like myself.  (In the video, you can see at the end how my feet are inclined to point down.)  The bikes had a handle on the back so an able bodied person can help give you a push if needed, or a stop, I suppose if you’re picking up too much speed.  The bikes are custom made in Canada, and built to the individual’s specifications.  They told me to jump on, but I was reluctant.  After the hubs gave me some encouragement, I decided to give it a try.  I am so glad that I did!  I actually pedaled two small laps!  Being an incomplete paraplegic, I do have some functionality in my legs.  My hips have managed to come back pretty strong, which allows for the pedaling.  My left quads are fairly strong (not like pre-paralysis strong, but compared to no movement, they’re strong) which allowed my left leg to pedal pretty well.  My right quads are kind of there but not as strong.  The problem was with bringing the leg back up and around.  So, I just use my hand to help my right leg along and was able to go!  It was exhilarating!!  I always say that not being able to ride my bike anymore is the biggest hardship from being paralyzed.  This gave me that joy back.  And sweat.  It gave me a lot of sweat.  I’m not sure that I will pick one up, as it was on the pricey side, and I live in a hilly area.  If I lived in the flat lands, I would pay for it without even second guessing!  But for now I have the video of my adventure.

 

I am so glad that I went to the Abilities Expo!  I didn’t attend any of the workshops or panels.  And I didn’t see the dancing girls or participate in the world’s largest wheelchair painting.  But I made the most of the exhibits that I did want to see.  I got better access to my backyard by purchasing my FreeWheel.  And I can’t wait to make use of it in Wyoming!  And I found my new wheelchair, which I hope to get in the works in the next few days.  And I got to experience the joy of riding a bike again.  I would consider all of that a win!

Welcome baby boy

Holy crap, I’m a mom!  That was my initial thought when we were on our way to the hospital.  Well, it was actually “Hubs, what did we do?!”  He told me it was a little late for that.  From what I’ve heard from my friends who are parents, most new parents think the same thing.  I’m glad to know I wasn’t alone there.  But still.

Surromom called us to say she was in labor around 8:30 on Tuesday night.  The hubs and I drove the nearly 2 hour drive to the hospital to meet her.  The length of the drive gave me plenty of time to freak out.  We got to the hospital after receiving a few “hurry, they’re going to break my water soon” texts and calls.  My mom was there, so I felt better.  But I didn’t want to miss his birth.  (Well, to be fair, I thought that wouldn’t have been the exact worst thing in my mind due to my hatred and fear hospitals and all things medical after all my time spent in them.  Special shout out and thanks to my medical history.)  The hubs drove like the wind, as best we could on a night where it seemed like every cop was on the freeway, thwarting our attempts!

We go to the hospital just in time!  Well… just in time to wait.  And wait.  And wait.  And not sleep.  And wait.  We got to the hospital at 10:30pm.  They broke her water the next morning at 10:00am.  The baby was born at 12:54pm.  So, in retrospect, we could have stayed home and gotten one more good night’s sleep, had a hearty breakfast, pet the dogs a little longer for their last one-on-one time and taken a shower.  All of those things sounded wonderful at 4am when we were still awake!

Sleepiness in the hospital hallway at 2:35am

Sleepiness in the hospital hallway at 2:35am

My parents stayed at the hospital all night with us (something they’re used to do, thanks again to my wonderful medical past), though my dad did abandon ship and go to sleep in his car.  But my mom, the dependable trooper, stayed with us.

Funny side story: around 3:30am we tried to go down to the lobby where they had loveseat couches to sleep.  We all chose a couch and laid down.  The security guard immediately came over and told my mom and the hubs they couldn’t put their feet up, but that I was ok.  Hey wheelchair, you finally paid off!  I get to lounge while the others have to be upright!  Score!  Screw you equality, I’m using this to my advantage.  Well, about 10 minutes later, another guard came over and said to put my feet down.  “But, the other guys said it was OK!”  I said, in more of a sleepy stammer than my normal Italian bluster.  “Put them down.” He repeated.  I was too tired to argue.  But security guard 1 then shouted across the room that it was OK.  Not wanting to cause a scene in a hospital lobby,  and sensing that my mom was getting riled up to protect my right to lounge, I I just said it was OK.  It was loud and cold anyway, and not like I was sleeping.  We gave up and went back up the room.

Another side story: Around 12:20, our surromom’s nurse went on lunch break and there was a replacement nurse tending to her.  She noticed a weird noise from the monitors which we had all been annoyed by but at this point, had become background noise.  The nurse called IT to fix the problem.  At the same time, the anesthesiologist had come to check on her epidural.  The IT guy disconnected the monitor to replace the unit, when Surromom announced that she felt pressure and that the baby was coming.  You’ve never seen an IT guy move so quickly installing equipment before, as I’m sure witnessing the miracle of life was way outside of his paygrade!  The anesthesiologist told Surromom that he didn’t want to give her more medication if she was about to deliver, which he should know better than to tell a woman who has been in labor for over 14 hours.  Suffice it to say, she got her meds and he escaped with his life.  I was texting my mom to hurry, as she had been down in the cafeteria to get some rest and give us some space.  At about 12:50, the nurse was back, the doctor was there.  The nurse made room for me and my wheelchair (which felt huge and awkward and space consuming at that time) next to the incubator.  It was go time.  And I started crying.  Holy crap, I’m about to become a mom!

And then he was here.  All 8 pounds 2 ounces of him.  And they placed his tiny, goopy body on me.  And there were no more tears.  It was just this overwhelming sense of “I’ve got this, little man.”  Well, I had that feeling until the first time he tried to move his head and I shrieked to the nurse “What do I do?!”  And she showed me how to hold him and that he wasn’t all that fragile (something I’ve heard but didn’t quite believe).  Then, the calm came back over me.  The wheelchair disappeared.  My fear disappeared.  And I realized, that I do have this.  Little Mister and I will figure this out together.  He’s never been a baby before and I’ve never been a mom.  So we will figure this out together!  Plus, it helps that the hubs is such a naturally amazing dad.  So, what I can’t do, or what is hard, he is there to help with.  (I’m mostly saying this now because last night I was exhausting and he took 2 of the 3 night feedings and got up with him this morning so I could get more sleep.  Such a good dad and a great hubs!)

So in sum, holy crap, I’m a mom!  I will get through this.  And I look forward to sharing tips and stories of what it’s like to be a mom in a wheelchair!

mom in a wheelchair

Get Over It!

I recently read this article “15 things wheelchair users hate hearing.”  I found the article to be so much more annoying, more than I found any of the 15 things to be.  People in wheelchairs this goes out to you: get over it.  We aren’t a common occurrence.  There are far too many of us, but we aren’t common.  Most people aren’t around paraplegics, quadriplegics or any other type of wheelchair user.  They are curious.  They are trying to be nice and relate.  Why can’t you just acknowledge that people who ask questions or start conversations are trying to be polite.  They’re trying to make you feel comfortable or trying to understand better. Start a dialogue.  Don’t shoot them down.  Kylie didn’t hurt you by posing in a wheelchair.  The nice woman at the grocery store didn’t try to piss on your parade by telling you she’d pray for you.  Get over yourselves and pass on knowledge instead of more judgement!

Here is my 15 responses to those 15 things the author claimed bug all wheelchair users:

 

1)      “I’ll pray for you”

 

Why would this bother someone?  I pray daily that I will walk someday.  I pray for a cure for paralysis.  I talk about cures for paralysis.  Why would it be offensive for someone else to pray too?

 

 

2)      “What happened to you?”

 

If someone is genuinely curious why would that be bad?  If it’s too personal, then say that.  I like sharing my story so I would never mind.  This especially cracks me up when reporters and bloggers complain about this because you’re publically putting yourself out there!  Get over it!

 

 

3)      “Congratulations”

 

Thank you!  Life in a wheelchair is hard.  And I’m out there conquering life.  A little acknowledgement and support is awesome!
 

4)      “How fast does that thing go?”

 

Whenever I can, I am racing around in my wheelchair.  If it’s level and there aren’t too many people, I’m flying.  I think it’s funny when people ask this or when they challenge me to a race.  Heck, I challenge other people to a race!
 

5)      “Stay positive”

 

Again, life in a wheelchair is hard.  And overwhelming at times.  It does take work to stay positive every now and then.  Why would I not want encouragement?  That’s not offensive!

 

6)      “I’m so glad I don’t have to be in a wheelchair.” I’ve never heard anyone over the age of 11 say this.  But, if they do, then yes, I’m glad you don’t have to be also!  It sucks.  I wouldn’t wish it on anyone else.
 

7)      “Is your significant other in a wheelchair too?”

People always ask me if my hubs is a lawyer too.  They ask him if his wife is a teacher.  It isn’t uncommon to be with someone who has something major in common with you.  That’s not a weird question.
 

8)      “You are too good looking for a wheelchair user”

Thank you, I think so too.  And I take enough selfies to show that I agree with you.  But I’m in this darn thing (for now) and I will rock it to the best of my abilities and make it look good. 
 

9)      “It’s good to see you are so productive”

 

SO many people in wheelchairs aren’t productive, so I get why this is a stereotype.  I’m out there killing life and it’s good for people to take notice of that to break stereotypes. 
 

10)  “Do you know Brian?”

 

No.  Is he cool?  No need to be annoyed by that question.  The way support groups and online forums work, maybe I do know him. 
 

11)  “Can you be cured?”

 

If it’s too personal, then tell them. But some people aren’t permanently in wheelchairs. And some people do have things that are fixable. Wanting to know if it’s a permanent thing shows concern and compassion, so why would you not like that question? 

 

 

12)  “I had to use a wheelchair once”

 

If a person is trying to find common ground, then who cares.  I’m sorry that they had to use a wheelchair at all.  And they’re better now, so tell me what you went through or what you did because maybe that will make me feel better.
 

13)  “You are inspirational”

 

Thank you.  I am inspirational.  I lost the ability to walk at 32 years old, 4 months after getting married.  And I didn’t fall into a pit of despair.  If I can help just one person get through the same thing, then I will be happy! 

 

 

14)  “I don’t know how you do it?”

 

People think they can’t get through something life shattering.  They are genuinely impressed.  A lot of people don’t make it through and give up.  I usually respond with “what other choice do I have?”
 

15)  “My grandma uses a wheelchair”

 

When I was 10 and used a walker, I used to think everyone would tease me because only grandmas use walkers.  Then I grew up.  If you have a family member in a wheelchair, even an elderly one, then you probably know some of the issues I face and we can chat about it.  They’re not calling me an old lady.  They’re relating.  Not offensive!

If anyone has questions about my wheelchair, why I’m in it, or wants to race, I welcome you!

Paraple-pancake

Today I almost became a paraple-pancake in the Target shopping center near my house.  (I hope that you’re picturing Wile E. Coyote after the large boulder meant for the road runner lands on him and he walks away like a smooshed pancake on legs. Cause that’s what could have happened!!)  Let me set the scene.  I had gone into Target to get some things, like a toy to donate to a 6 year old boy through my church.  (And some ugly Christmas sweaters and nail polish, but the toy makes me sound way more angelic which makes almost getting run over even sadder!  People would probably care more about the Pope being hit by a car than Kim K.)  The way the Target parking lot is set up there is a row closest to the entrance that has about 10 disabled spaces.  And there’s a slight decline away from the store.

So there I was, rolling toward my car with one hand on my wheel and one hand holding the basket with all my newly purchased wares.  I passed a couple parked cars.  Then all of a sudden, this dbag in an SUV throws his car into reverse and hits the gas without even looking.  I was seriously INCHES from his bumper.  I always watch for reverse lights because I never trust that people will see me.  There was seriously no pause between light coming in and car backing out at a very fast speed!  I immediately yank on the wheel, but since I only had 1 hand on my wheel, it throws my chair into a gnarly 360 spin.  My other hand is clutching the basket which is about to go spilling.  The spin I do in my chair causes me to go out of control and nearly hit the car next to the dbag in the SUV.  He looks at me like “Whoops, sorry” and points to the car I almost splattered against to see if that’s where I am going.  He’s lucky that my hands were on my wheels and basket or else I would have been pointing with a very specific finger!  So he stops and I keep going behind him to my car, which was parked on the other side of him.  His girlfriend is staring at me with this look of complete amusement on her face.  I nearly LOST IT!  I’m hoping they were lip readers, because while my hands were occupied, my mouth was spewing some very colorful and choice words which I will not repeat, lest I lose my “PG” rating on this blog.  I called the hubs, but he was working and couldn’t answer.  So then I called my mom, because after you’re nearly smooshed into the pavement, you have to call someone!  And, do you know how hard it is to edit the colorful language out of a story when half of it involves directing said language toward a person?  Just like on this blog, I try to not cuss around my parents.  But, I think I used the word dbag like 50 times in the retelling of the story to her.  I said I tried to clean up the language, not that I was able.

The burn of it is that this JERK was parked in a disabled space too.  So either he’s the most selfish dbag on the planet who can’t watch out for anyone else.  Or, he’s not really supposed to be parking there.  I find that most handicapped people tend to be a little more cautious because we know how scary it can be to not be seen as easily by people.  At least, I know that’s how I drive.  When I back out of a space, I turn my head in true Exorcist fashion 25 times to make sure no one is behind me.  And I watch my mirrors and back up camera.  It might seem extreme, but I never want to be like the dbag in the SUV today.

The moral of the story ladies and gents: please, please, please be cautious in parking lots.  Not just in the handicapped area, but everywhere.  There’s always a chance that you may miss seeing a kid or a wheelchair.  And if it weren’t for my cat like reflexes and the a couple guardian angels, I could be all kinds of hurt right now! (But, my wheelchair would be OK, cause it’s titanium and that beyotch is indestructible!)

This is why I can’t have nice things!

One of the most unfortunate things about being in a wheelchair is that my beautiful, beautiful, beautiful clothes take a thrashing on the wheels.  I have wheel guards, which are plastic barriers between me and the wheels.  However, with the constant moving of my arms, shirts, sweaters and jackets come out from the barrier and rub on the wheels.  No matter how many times I tuck the errant shirt down, it inevitably comes out and rubs on the wheel.  Most of my clothes end up having smudges and streaks on the bottoms.  Sometimes they end up on the back which takes a bit of pondering to figure out how that comes about!

One of the options could be to wear only form fitting clothes which wouldn’t hang far from the body and drag upon the wheels.  But, with the whole “weight gain” combined with “para belly” [read: weak core = weak belly muscles = organs and what not dropping into the lower belly when seated] makes tight clothes not the best option.  (Though as my mom points out, if I lost weight then I wouldn’t have as much that would hang out.)  So then if becomes battle of narcissism and vanity versus ruined clothing.  That’s a tough one!

There’s also some things that can’t be tight: like my suit coats.  When I wear a suit to court, the jacket always comes out and rubs on the wheels.  Those aren’t tight.  I don’t even button them.  They have to hang open.  So then I’m back to square one with having marks on my clothes and hoping people are more oblivious and less judgmental about it than I am.

This may seem petty and very first world problemy.  And I acknowledge that there are WAY bigger things to worry about (like, getting back to that whole para belly thing with slipping organs and whatnot).  But, when you’re forced into a situation that you don’t have much control over, sometimes it’s the small things that you remember from your previous life that cause the biggest issues.  Having non-streaked clothes are something that shouldn’t be an issue but are sometimes unavoidable.  And sometimes a girl just wants to wear a white sweater without completely destroying it!

white sweater