On the road again

10 months ago today, I lost my freedom. I went in for surgery and woke up 8 hours later unable to move my legs. I don’t blame anyone. There was no major screw-up. No law suits pending. My neurosurgeon is one of the most capable and knowledgeable surgeons in the world. Literally. My back just had enough. This was the 5th spinal surgery I’d had. Each one posed new threats with scar tissue and other medical things I don’t quite understand. It was a risk that there would be complications. But I truly had no alternatives. Avoiding surgery was a surefire way to end up permanently in a wheelchair. Right before my surgery, I could barely walk. My knees were raw from falling so often. I could barely take a few steps. It was miserable. And my bladder would have gone too. So I had to have surgery. And I chose the man who I think was the best at the job. My neurosurgeon, JPJ, is one of the best in the business. And, he trained under my pediatric neurosurgeon who truly was the best in the business. Number 1 guy. In fact, JPJ may have operated on me when I was 10 and had my first major, life changing spine surgery. He was a resident then. Funny how 23 year later, he was likely operating on the same back as he did when he was a resident. So while the outcome is momentarily unfortunate, I don’t regret it. I walked in to the hospital, and 8 hours later, I couldn’t move my legs.

Today I regained my freedom. No, I’m not walking. But, I did get hand controls on my car. 10 months of no driving. Of waiting for people to take me places. Of hoping that there was no emergency which required me to get somewhere, and hoping that if there were, someone was around to take me. I joked to my dad that I could just get a 3-wheeled motorcycle cause you don’t need legs for that. But he pointed out that I had nowhere to put my wheelchair. Curtains on that idea. 5 o’clock shadow told me about a local mechanic shop that only modifies cars. I called them and they had me immediately come down to chat. The guys who own the place were so friendly and reassuring. They could literally modify any car to fit any need. I have a little sedan and I want to keep it. They were able to put in hand controls that will fit my needs there. Now a bigger car could hold a lift to put my wheelchair in the car itself. Now I will be forced to get a lighter wheelchair to put in myself. But, to keep the car that I love, that’s all worth it to me! And the coolest part is that the pedals still work. So, the hubs or anyone else can still drive my car regularly.

The owner of the shop picked up my car this morning and then brought it back tonight. He then gave me an almost 2 hour driving lesson on how to use them. I thought that it wouldn’t be that hard. And it’s not. But it does take getting used to. My brain thinks that my right leg is going to just hit the gas or the brake. But, then it doesn’t move. So I have to train my body to think that the left hand now controls the brake and the gas. Brake- push. Gas- pull back. It seems pretty easy. And again, it is. But when you’re actually driving, it takes some getting used to. The hubs sat in the back seat the whole time watching. Apparently he also took a secret photo of me. I was so focused on not killing pedestrians that I didn’t even notice.


(Note: no people or animals were ever in harm’s way- we were in an empty parking lot.) The mechanic would tell me “kid runs out, stop!” to get me to see what it was like to slam on my brakes. Or he’d have me park between two imaginary cars and tell me that I hit one if I parked crooked. No pressure.

I was a natural! I met all of his tests and managed to pass without giving us whiplash. Yes, I did hit the brake hard once or twice. But that’s bound to happen. And it was weird to remember to push the brakes while changing from reverse to drive. It was all very awkward at first. But also weirdly easy. The hardest part was probably on the hubs who had to get my wheelchair in and out of the trunk like 8 times. Unfortunately every time I had to change seats, he had to get it in and out. But, he was a trooper and didn’t complain. Instead he took secret photos and sent them to my folks unbeknownst to me. I’m not going to lie, if I had known all that was going on, I may have “accidentally” hit the brakes once more. Maybe next time I drive.

Next time.

Those words, and the fact that they mean I am mobile again now and have regained my freedom, make me so happy on this Friday the 13th. This 10 month paralysis anniversary.

As the great Willie Nelson says: On the road again/Goin’ places that I’ve never been/Seein’ things that I may never see again/And I can’t wait to get on the road again.

I definitely can’t wait to get back out on that road again!

Today was a great day!

Today was a great day! A lot of days are good days. I can honestly say that most days are good days. I’m alive. The sun is shining. I have a career I love, an amazing hubs and two great dogs. I’m very lucky in life! I love life! Sometimes I’m annoyingly optimistic. My neurosurgeon told me at my last visit that he wished he could bottle my energy and give it to his other patients. Apparently I’m adapting well to my transitional phase of no walking. (Yes, transitional because I don’t plan on being here permanently!)

Am I always so chipper? Of course not! Some days it sucks. It really sucks! Those usually correspond to times when I can’t do something I really want to do, like go to someone’s house for a party for fear that I won’t fit in their bathrooms. Or, when my baby niece wants me to follow her up the one stair into my sister’s house to go play inside and says “come” and I can’t. My heart breaks so completely that I’m surprised I don’t burst into tears right then and there. Those little one and a half year old eyes looking at me as if I don’t want to follow her and go play, and not old enough to understand why I’m not. Yes, those situations get me down. A couple weeks ago I broke into tears on a random evening because I hadn’t left the house in two days and felt trapped because I couldn’t just go run errands if I wanted. Poor hubs was completely bewildered because I hadn’t even asked to leave the house. I don’t know what brought it on. And like a tropical storm swiftly moving through, I was fine after a couple minutes. My “freak outs” are few and far in between. And for that, I am grateful!

But back to my day. It started out with a visit from my folks. My mom was coming down to take me to physical therapy. My dad surprised me by showing up as well. He had told me yesterday he had an appointment and had to sit this week’s visit out. Apparently he rearranged so he could come too. That was a very nice surprise!

Then came the surprise paint color in my new office. The office I’m in now is not ADA compliant. I have the world’s smallest bathroom. The door is 15 inches wide. That’s almost half the width of my wheelchair. Because of that, I can’t use my office as anything other than a place to meet clients for a few minutes. So, on July 1, I’m moving to a new office. The landlord is painting and giving me new carpet, both of which I got to choose. The paint color I chose was a silver color with a blue tone, with a brighter blue for an accent wall. The painter had a question regarding my accent wall, so I stopped by to show him. The paint color was much more of a sky blue and so much prettier than I had hoped! The color literally made me happy! I’m so excited to spend time in my new office! And yes, I do acknowledge that I am easily excited.

Next came my physical therapy. Today was the start of aqua therapy with my PT, 5 O’clock Shadow. I hadn’t seen 5-O in a few weeks as I’d just been focusing on walking and standing at home. I also hadn’t been to the pool for a few weeks for the very same reason. It was nice to reunite with both after the hiatus. I loved being in the pool. And 5-O couldn’t be quite as hard on me when I could simply float away from him or dunk under the water to ignore him. I did threaten to pull him in if he was too mean. Maybe that helped. But the session was amazing and I feel great. Sore, but great! I’m excited for this new experiment of aqua therapy with 5-O.

And the final excitement, which is probably the biggest excitement of all: I went to the mechanic who does the car modifications! I learned about all the amazing options for modifying my car so I can drive. If I had unlimited money, the guys there could do so much! They could turn any car into a car with suicide doors and a lift and a moving chair that could drop to get me. It’s unreal what they can do! All I really need now are hand pedals and a lighter wheelchair. I love my car and don’t really want to try to trade it in for a different one. But, it’s amazing to know the options. They showed me one car that belonged to a woman with polio. The seat comes out and lowers to a foot off the ground for easy transfer. Then the wheelchair crane comes out of the back seat, scoops up the folded wheelchair and takes it into the car. The doors are automated as well, so after the seat takes her into the car, the doors automatically swing shut. It’s amazing! I, on the other hand, have pretty good upper mobility and strength, so I don’t need something quite that extensive. (Sidenote: I would love all of that, however to do that would cost 15,000-45,000 at least, depending on the car.) So for now, I’ll stick with just the hand pedals and fly high on the knowledge that I can start driving myself places! After 10 months of relying on people for rides and feeling like a high school freshman, waiting for mom to come take me to the mall, the feeling of my soon-to-be-had freedom is overwhelming!

And that, ladies and gents, was my great, amazing, wonderful day!