Community Life

When I first became paralyzed, I wasn’t interested in getting to know anyone else in a wheelchair.  The hospital staff brought around a guy in a wheelchair to give me advice and whatnot.  But, I figured I was different.  I was getting better.  And for the next year after, I immersed myself in physical therapy.  Everything was geared toward my getting better.  But, then I slowly realized that I was alone.  I had this blog to vent or cheer, but no one to compare notes with.  No one to talk to about daily occurrences or freak things.  My family and close friends would try to help, but it just wasn’t the same.

Then I found a group on Facebook for people with spinal cord injuries.  This group was great because now I had a place where people were experiencing exactly what I was going through.  They offered their own advice, asked their own questions, posed their own stories.  And if you had a question, they were quick with advice.  Or if you wanted to brag a bit about something awesome, most were just as quick with words of praise and encouragement.  It’s a really neat group of which I’m a part.

Through that group, I found a group geared specifically toward moms in wheelchairs with spinal cord injuries.  You don’t actually have to be a mom: you can just want to have kids one day and want to join now to learn about the possibilities of that.  The fear of not being able to have and/or raise kids is a big deal for young women with spinal cord injuries.  Yes, it’s going to be hard (I don’t know yet, but should be learning any day now), but it’s definitely doable.  This group of moms in wheelchairs is such a great group to be in!  It’s even better than the general group, because it’s specifically women with similar interests: having a family.  We all offer support, encouragement, advice.  It’s fun to have this group of women who I have never met in real life to be able to talk with for the simple fact that they can relate.  No injury is exactly the same, but we are all mostly going through the same things.  And knowing that I have a community, that I am not some isolated island, is a HUGE part of the healing and recovery process.  I am so glad I found these groups and highly recommend it to any person out there who feels alone in their lives.

Goodbye 2015

2015 was a pretty great year.  It had it’s ups and downs, as any year does.  But I think overall I had a good time.  2015 saw my 2 year mark in the wheelchair.  That hit me harder than the 1 year anniversary.  Sorry, 2015 but 2014* was a better year as far as that went.  The one year anniversary was still full of promise and hope of walking again.  The 2 year anniversary was more solid in the knowledge that walking isn’t likely at this point, though I’ll never give up hope.

The beginning of 2015 brought the pain of a miscarriage, but the joy of the news that we were finally expecting our first child.  And it brought all the fun of shopping that expecting a new child entails as well.  (Any excuse to go shopping is a winner in my book!  And if it’s sanctioned by the hubs, then that’s an even bigger win!)

Work wise, 2015 didn’t really do much.  No huge wins or losses.  But I continued in helping people who found themselves in bad situations.  I think the biggest win of 2015 was one of my favorite longtime clients texting me out of the blue that she was graduating early from drug court.  I had helped get her the tools to get herself clean and she made the most of it.  I had told her I couldn’t go see her graduation, but ended up getting my conflicting cases covered by an awesome colleague and surprised her at graduation.  That was the 2015 work high for sure!

The hubs, dogs and I had an amazing trip to Wyoming which resulted in picking up a couple acres for our someday vacation home.  The trip further solidified our bond to the little piece of Heaven they call Wyoming and to a perfect 960-ish person town.  They have a webcam in the town and I call it “My Happy Place.”  When I need a break, I can instantly go to My Happy Place.  So, thanks for that 2015!

2015, you made me a published writer.  It’s always been my dream to get paid for writing.  And New Mobility Magazine made that happen as I write blogs for them.  That was a huge accomplishment in 2015 which I hope to grow in 2016!

The hubs and I had the joy of welcoming a new niece (born to one of his sisters) and a nephew (born to my sister) this year.  Both were healthy, super adorable and perfect!  And the fact that they will be so close in age to our upcoming bundle of joy is awesome!

Handi-hack wise, we came up with a lot of helpful tricks to make being in a wheelchair work this year.  The hubs rocked the modification of the crib, which he basically just came up with and put into action.  And then he figured out how he could put up new door jams so I could fit through a couple doorways with the doors on.  These doors had been off since I came home in the wheelchair, as it was just slightly too snug a fit.  But, he put on new hinges, and voila!  I can fit!  But, I think the 2015 win was the awesome sink addition that my dad came up with and engineered in my house.  Instead of tearing apart the existing island sink, he dropped the counter overhang and now we have back to back sinks.  I can actually wash things like a normal person now!  So that is the major win of 2015!  (The crib was a close contender, but since I didn’t actually need to use it in 2015, the sink won out.  Sorry crib.  You were just ahead of your time, I suppose.)

handicap sink

2015, you were good to this paralyzed girl.  I really can’t complain about anything.  I’m sorry to see you go, since you were the last of my selfish, kidless years.  But, I’m really not sorry to welcome 2016 and see all the joy, struggle, exhaustion and exuberance that it will bring with it!

 

*2014, otherwise, you’re kind of on my sh*t list: you’re the year that Iggy Azalea came out with “Fancy”, which my husband has recently taken to quoting.  If I hear him say “Who dat, who dat” one more time when my phone rings, 2016 may see me behind bars for murder.  Just kidding.  I know a lot of really good defense attorneys.

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

Fallen ego

You’ve heard the old adage about getting back up if you fall down? Well, I did that today. Literally. Yes, I was “that person” who fell off a piece of equipment at the gym. I had a video, but I make the most unflattering face in it that I deleted it and tried purging it from my memory. It’s the kind of unflattering thing that a person uses to blackmail another person for lots of money.

Let’s go back to yesterday. I had a wild notion that I could use the rowing machine at the gym.  My theory was that the thing slides pretty easy and that my hip muscles kind of work so maybe I could try it out.

rower

The hubs and I went to the gym this afternoon to try it out. It was packed and I almost chickened out. But, I reminded myself that I am not Beyonce and people are probably not staring at me. Getting onto the machine was fairly easy. I just pushed the seat to the back and went at an angle that would keep it pushed back. The hubs put my feet in the foot strap and gave me the handle. Pulling myself in was harder than I thought. My right knee hyper extends, so I had to manually push it into a bent position then use my not so functioning quad muscles to try to actually bend them into the upright position while also pulling myself in. I was actually able to do it!  I mean, I wouldn’t win any rowing championships, but it actually worked somewhat. Pushing back was fairly easy. After about 2 successful rows I convinced the hubs to film me so I could A) see my progress and B) show my mom. (Yes, in all things do I aim for my mother’s praise!)

He stood back and started filming. I pulled in, pushed out. Once. Twice. Three times. What I realized as I kept going is that it actually takes a little (read: A TON) of core strength and balance. These are things I am lacking. You see where this is going? Ok, so there I was. Once, twice, three. Four…whoops! I pulled so hard that I lost balance and fell off the machine, while simultaneously letting go of the handle which crashed back into the machine. The shock and hilarity of it all cracked me up. The hubs was more concerned with the fact that my left ankle was still strapped in place, despite my entire body being to the right of the machine. (Apparently he didn’t think ankles are supposed to bend in that direction.) My telling him it didn’t hurt didn’t seem to carry much weight. But, no, I did not actually hurt it.

After he freed the stuck foot, I was able to get back on the machine and tried a few more rows, this time focusing on not losing my balance. The hubs decided to not film me anymore and instead stand by me like a nervous mother hen.

I talked to the awesome gym owner and we’re going to brainstorm what I can do to keep my knee from hyper-extending so I can get into a rhythm without having to stop to bend it myself every time. He’s motivated to helping me in my recovery. I love the support!

The point of all of this is not to publicly embarrass myself more than I already did. It’s that now my abs are killing me. And it’s only 2 hours later. Tomorrow is going to suck! Ok, that’s not really the point. The point is that I fell down and got back up. I didn’t die from embarrassment. If anyone laughed or judged me, I’m confident they would end up in Hell, cause who could really laugh at a paralyzed person trying to better themselves? Only truly evil people. If you laughed at me (and not with me- there is a difference!) then yes, I’m totally judging you! But if it doesn’t kill you, it will make you stronger. And if you fall, then you need to get back up and try again. That’s more of a reminder to myself than anything else.

My doctor is cooler than yours!

I saw JPJ on Monday. I took the results from my MRI for him to read and translate. I had the CD and probably could have attempted to look at it myself over the weekend. But, have you seen images from an MRI? I’ve seen many from all my years of testing and all I can tell is my spine. That’s pretty distinguishable. The rest looks like a weird, blobby mess. It means nothing to me. So I waited. Let’s just say that the appointment didn’t go quite as well as I had hoped. Cliff notes: I’d better get used to sitting. We’re still holding out hope, but………

Instead of going into details and specifics, I decided to focus on some of the positive. I hereby give you a couple “tops” lists.

Top 5 reasons being in a wheelchair isn’t so bad:

  • I am SOOOO much faster than I was before! I’ve never been a runner. I’ve never been fast. But now I can let the wheels go and feel the wind in my hair as I rush down the street. (Though sometimes I’ll hit a rough patch or a bump and almost unseat myself. But that’s part of the rush, right?)
  • I don’t fall. Ok, to be fair, I am still able to fall. But that’s usually when I’m doing transfers and my locks aren’t tight. But before I used to fall all the time. Right before my surgery I was falling down several times every day. One more fall and my knees would have jumped out of my body and run away on their own. They were over it. (One could argue if they did their job better I wouldn’t have fallen down as often. But have you tried arguing with knees? Very stubborn.)
  • I always have a seat. Like in a crowded place where there are only a couple benches, I don’t have to worry about my legs getting tired. I’m very comfortably seated while others are scrambling for space.
  • My arms are getting so strong that I should probably start entering arm wrestling competitions.
  • People are nicer to me. Usually. People tend to open doors for me. They offer to help me all the time. Some people rush over to my car to see if they can help me with my wheelchair. Complete strangers. I’m always amazed at people and their capacity to be kind. Well, most people. Some are complete jerks who live in their own self-absorbed worlds. But, it’s like 85% good people, 15% dbags. So, I still consider that a win.

Top 5 reasons why my doctor is cooler than yours*:

  • He wears cowboy boots. All the time. In his office. In the hospital. In the OR (that stands for “operating room” for all of you surgery rookies out there). When I was in the hospital, I would hear the slow “clack-clack-clack” of his boots as he walked down the hallway and I’d feel relief as I knew he was coming in to check on me and save the day.
  • He’s a cowboy from Montana. Legit. He has a farm there still. Fancy Beverly Hill neurosurgeon by day, cowboy in his spare time. That just reeks of cool.
  • He has been involved in all of my major spinal surgeries. He was a resident under my neurosurgeon when I was ten and most likely operated on me then. And then he operated on me this past time. There’s something very Zen and full-circley about that.
  • He saved my bladder. The way things were going, a catheter seemed to be in my near future. Like Superman, he swooped in and saved the day. How would that not win Coolest Doctor award?
  • He fills the room like John Wayne. I guess that relates back to number 2. His presence just kind of fills the room. He’s this combination of intelligence and confidence that makes you feel like he’s going to save the day. If my doctor and your doctor were in the same room, your doctor would be quivering in my doctor’s shadow. For real.

See, now wasn’t that more fun than some whiney post about not walking? You’re welcome.

*This list obviously excludes all friends and family who are doctors. You’re all obviously very cool or else I wouldn’t waste my time knowing you.

MRI

Life is super funny sometimes. Today I had to do an MRI because I’m seeing JPJ, my surgeon, on Monday. I didn’t want the MRI. My dad wanted it. JPJ wanted it. 5-0 wanted it. I did not want it. My want apparently didn’t matter. My theory: what does it matter what it says? I’m not having any more surgeries! If there’s something wrong, it will just have to stay wrong. This may seem crazy, but the way I look at it is that I’m in this mess because my spine is pissed that it had to go through another surgery. It threw in the recovery towel. And until there are major breakthroughs where people are walking after years of paralysis, I’m not interested.

But, what JPJ wants, JPJ gets. And I went in for my MRI. Before the appointment, I went to court and had a great result for a new client. In fact, it was so good that I got one of her cases dismissed and amazing resolution on the other. She was so happy she was practically in tears thanking me. The MRI was scheduled during a break in court, as I had to go back for the afternoon session.

I went to the facility where the scan was to take place. I called my mom and texted the hubs along the way to make sure everyone knew how thoroughly displeased I was to have to go alone. This was the first time in my entire life that I’d had to go to a test alone. That may seem weird to people. I’m an adult. A professional adult. A responsible adult. And yet I didn’t want to go to the test alone. I guess that on the surface it seems weird. Immature even. But, when you look deeper, it makes sense. Every time I do something like this, something bad is the result. Surgery. The last time I had surgery I lost the use of my legs. Most x-rays and MRI’s that I’ve had since I was 10 have resulted in my body being cut open by teams of surgeons. So, yeah, I hate going to these things alone.

Another reason is that I had to get an IV. I HATE needles!! I hate them even more each time I encounter one. You’d think it would get easier. You’d be wrong. Today the nurse put in the IV and I teared up. I didn’t full on cry. I was giving myself major kudos for being so strong. The nurse was quick and gentle. Definitely good at her job. She put it in the crook of my elbow. After it was in there, I was afraid to move my arm too much. She told me that I could bend it, that it would be ok. But, I’m really good at isolating body parts and decided to not move it. The only problem: I need to use my arm to wheel myself. Another nurse offered to push me. A) I don’t have push handles, and B) I hate being pushed. I politely declined. But I still tried to push with my straight arm. Do you know how hard it is to use a straight arm to push a 24” diameter round wheel? Answer: very. I looked absolutely ridiculous trying to keep my arm straight and push myself. The nurses literally laughed at me. At. Not with. So finally I gave in and bent my arm. She was right. It didn’t hurt.

I got onto the MRI table and went into the tubey part. I’m not claustrophobic so MRI’s don’t really bother me at all. They’re just loud. The technician put ear plugs in, but it’s still loud. After about 2 minutes of laying perfectly still (I’m also really good at not moving at all during these tests. Years of practice have made perfect) I started crying. My arm was aching where the IV was. My nerves were on overdrive. And I was definitely pitying myself at being alone. I then thought how funny this all was. Here I was an aggressive fighter that morning defending my clients. And now I was laying there with tears running into my ears when nothing at all was happening. There’s literally nothing wrong with me, but I’d gotten myself all worked up. Well, I guess not literally since my arm did hurt from the tiny needle.  But, I realized I was being ridiculous and forced myself to stop.  I realized that I was lying still and had a legitimate excuse to take a nap at 10:30 in the morning!  That was a very freeing realization.

The MRI was over after about 30 minutes. The nurse took the needle out of my arm, which made me want to give her a hug. I made a joke about liking her way better than the one who put in. And then I went back to court and back to being an aggressive fighter, wiping away all scaredy-cat thoughts and remnants of tears. Back to pretending that nothing ever happened. Well, pushing it all away except for the fact that I left the bandage with the small blood spot on until I saw the hubs so he could see the tangible proof of the pain I experienced that day. Hey, if I had to go it alone, I may as well milk the whole sympathy thing!