30 Days of Thanks Day 22: Time Alone in the Car

I haven’t been driving much for the past year. There are many reasons why I do not yet own a new van with high tech hand controls for driving, and I will attempt to write about that in a later post.

However, today I am grateful that I DID spend two hours driving by myself in my car. Two blissful hours alone, listening to music and singing at the top of my lungs. Yup, that was me.

I love all types of music, but I get bored listening to the radio. There are too my commercials. They play the same songs over and over and over. IPod playlists help, but as I said, I get bored easily.

Last year I discovered Spotify. I love Spotify because you can listen to, and save entire albums if you wish. Sure, there are arguments for and against this type of streaming service. But today Spotify made my trip a very enjoyable sing-along.

With any luck, when I insert the next bit of text, the playlist of the songs that randomly popped up for my drive will appear. If you’re heading out on the road, give these tunes a try.

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How Do You Measure a Year?

My world changed a year ago on January 13, 2016. That was the day one of my former Personal Assistants (PAs) did not follow my instructions, resulting in her dropping me to the floor during a transfer and fracturing my left femur.

I’ve written many posts about my progress this past year. I explained how it all happened in this post, then provided an update from the rehabilitation hospital in this post. I blogged about my transition home, and the challenges I faced as I struggled to prioritize my needs as I continued to heal.

There have been many gains this year. After months of therapy, I was able to successfully transfer into my driver seat in my van in April. Granted, performing that transfer requires such a high amount of my limited energy so I only drive when absolutely necessary. And I still can’t independently transfer back into my wheelchair when I arrive at my destination, which means I must have someone meet me so I can get out of my van.

That’s not entirely accurate. I CAN transfer out of my driver seat if I am parked on an uphill incline. Gravity still works, and when parked uphill, it gives me a boost when I slide back to my wheelchair. However, if I’m parked on an uphill incline, I can’t get back into my driver seat so I can drive back home. Stupid gravity – who said it was a good thing?!

I am still pursuing a new vehicle which will be modified with a high tech driving system. This will allow me to drive while seated in my wheelchair. The evaluation process is stalled for the moment, thanks to matters that deserve and will get their own blog post. But, eventually I will be fully independent for driving again and it WILL happen in 2017.

Five hundred twenty-five thousand six hundred minutes. Anyone who is a fan of the musical Rent, written by Jonathan Larson, knows a year contains 525,600 minutes. But as the opening song in the show tells us, time is just one way to measure a year.

I can measure the past year in the number of hospital admissions (2), the number of new internal permanent screws in my leg (8), the number of new PAs I’ve hired (4), the number of months absent from work (4) and the number of address changes (1). I can also measure the number of new great nieces and nephews born (2), the number of visits with my best friend (5), the number of blog posts (72) or the number of funerals (thankfully, only 1).

But when I think about this past year, the one word that keeps repeating itself in my head is the one thing Jonathan Larson encourages us to measure most – love. This year, I have been blessed to be the recipient of so much love from friends, family, and readers. When I first started writing about my fracture and rehab, I received cards and letters from around the world. I had at least five visitors every day for the month I was hospitalized. People called, sent Facebook messages and Skyped when I was unable to leave my house.

Although I need assistance every day in order to survive, I am bad at asking for it. I would rather do just about anything else than ask someone to help me when a PA has called in sick or has quit. However, this year I had to repeatedly ask the people in my support network for their assistance and you know what happened? Almost 100% of the time they said yes! Whenever I asked for help, I received it. If that isn’t love, I don’t know what is.

So while 2016 was full of more challenges than I’ve had to face in quite some time, it was also full of love. I’d rather measure the love.

I searched for a good video of this song and was overwhelmed at how many hits came up. Then, I stumbled on this one with ASL interpretation and knew this would be the one to share.

Driving Me Crazy

A few months ago, I shared a post about how excited I was to be driving again after my femur fracture. Several of you responded with excitement and cheered me on in my continued rehabilitation. Then, a couple of weeks ago I casually mentioned how I was not independently driving. This caused several readers to reach out to me with questions about my driving. I have been meaning to write about this but other things interfered. The time seems right now, so let me take some time to explain what is up with driving.

For the past fourteen years, I have driven modified minivans. These vans have ramps on the side, which allow me to wheel my chair directly inside the middle section of the van, behind the driver and front passenger seats. I do not drive from my wheelchair. Instead, I lock my chair in place behind the driver’s seat. My van has a transfer seat base under the driver’s seat which allows the seat to rotate and move forward and back. For fourteen years, I have transferred in and out of my driver’s seat to drive. The only photo I have which somewhat shows this process is this picture snapped by my best friend at the start of a 2012 road trip.

A woman wearing a white shirt sits inside a gray minivan. The passenger side door of the van is open, and the woman is seated on a driver's seat transfer base, which is rotated facing the open door. She is looking out the door as she slides from her wheelchair into the driver's seat.
Half on the driver’s seat, half on the chair – almost ready to hit the road in my van Clyde! Yes, he has a name.

I do not drive from my wheelchair. I do not drive with hand controls. That’s right. I use my feet to operate the gas and brake, and use both hands to operate the steering wheel. If I drive from the driver’s seat, I do not require any further modifications to drive. Most people are surprised to learn this tidbit, and it plays a role in this story.

Things changed when I fractured my femur. As I shared on my blog, transferring in and out of my driver’s seat was difficult, and took time and rehabilitation. I was thrilled when I was able to get in my van and drive – and I still can do that. What I can’t do independently is transfer OUT of my driver’s seat back into my wheelchair.

Right now, I can get in my van and drive myself to my destination. I just can’t be certain I’ll be able to get out when I get there. What’s more, the effort and energy required for me to complete these transfers is frankly, not worth it. I have limited energy, and when I have to transfer repeatedly, I don’t have energy to do the other things I need and want to do in my day. The time has come for me to admit it is time to drive from my wheelchair.

Driving from my wheelchair may sound easy, but it is not just as simple as removing the driver’s seat. Everything changes if I try to drive from my wheelchair. In order to safely drive from my wheelchair I require a complex high-tech driving system. I have not had a new driving evaluation completed yet, but you can see a photo of a “complex high-tech driving system” which I will probably require by visiting this website or searching other sites. The last time I had a driving evaluation completed, the instructor told me I could drive from the driver’s seat without any modifications, or else drive from my wheelchair with “every bell and whistle, high-tech, electronic system known to man.”

Knowing I needed to make a change, understanding that I would not be able to put the system I will need in my current 2003 vehicle, I began the process for getting a new van. For those who are unfamiliar with the steps involved in buying an accessible vehicle in New York (my state), let me fill you in.

  1. Modified vehicles are expensive. The government requires most disabled people to live in poverty, with very little resources and savings, in order to maintain the services they require to meet their daily needs (see prior posts here and here for more information). This is why so many disabled people turn to crowd-funding and other fundraisers when they need to buy new vehicles. Rather than do that right now, I am using my state vocational rehabilitation program (ACCESS-VR) to assist me with the purchase of a new van.
  2. The ACCESS-VR process is a LONG process. I was approved for services in August (yeah!) but have yet to receive any services. On September 20, I received a letter telling me I was approved for a high-tech driving evaluation. I am drafting this post on October 5 and today I just received a phone call about scheduling my evaluation because….
  3. ACCESS-VR is a state agency. Any work the state pays for can only be completed by approved vendors. The state has one vendor – ONE VENDOR – in all of New York that is approved to conduct a high-tech driving evaluation. That vendor is in Rochester – 232 miles away from where I live on the eastern side of the state. I’ve spoken to Brian, the man who conducts these evaluations. He seems like a very nice man. During our conversation he told me he has been traveling almost non-stop. I believe it, because I know I am not the only disabled person in the state of New York who is itching to have her independence back. However, even though Brian is a nice guy, he is still 232 miles away. But….
  4. Brian is going to come to me for my driving evaluation! This is important, because since my femur fracture I can only go to the bathroom using the commode in my house. Well, I can go to the bathroom at my sister’s house because she purchased the same commode for me to use when I visit. Other than at my house and my sister’s house, I don’t use the toilet. This makes travel almost impossible. It makes a 232 mile trek across the state a logistical nightmare. If Brian didn’t come to me, I would have to wait even longer for a driving evaluation.

After this process, I can finally move to the process of actually purchasing the vehicle and equipment. That process deserves its own post, as this one is already over 1,000 words. I haven’t even begun to think about learning to drive with this new equipment, and having to practice for my road test with hand controls. I last took a road test in 1992 when I was 18 years old. I was driving my very first car, Grandpa A – a maroon Chrysler LeBaron with a bench seat in front. The man sent to accompany me on my road test was over six feet tall and had to sit sideways on the front seat because I had it to pull it forward to reach the pedals.

So, that’s the story with driving. If I am lucky, (read – if paperwork gets moved quickly and the process is not slowed down along the way, and I don’t have to wait months for driving instruction, and Scorpio goes in retrograde or something) I will be driving a new van by July of next year. In the meantime, I am rediscovering the joys of the local paratransit system and trying to practice patience. And drinking lots of wine.

On the Road Again

One of the biggest hurdles in my recovery from my broken femur has been driving. I drive an adapted minivan, a sleek silver vehicle I have named Clyde. Clyde has a ramp which allows me to drive my wheelchair in and park it where the middle row of seats would normally be. My driver’s seat is mounted on a transfer seat base which allows it to swivel. I slide out of my wheelchair into the driver’s seat, rotate the seat to the front, slide forward, and drive. At least, that is how the process has worked for the past fourteen years until my orthopedic surgeon restricted me from putting weight on my left leg after surgery.

Since February I have worked in physical therapy to regain strength and function with the goal of being able to independently transfer in and out of my driver’s seat. My apartment is located in an area not served by our local public transportation. The disabled paratransit service does not come to my apartment as I live too far from a fixed bus route.

If I cannot independently drive, I have three options. I can ride as a passenger in my own van while someone else drives. I do this when I have to, but I am a terrible back seat driver in my own vehicle. Another option is to have someone help me get in my van at my starting location and someone else help me get out of my van at my final destination. Or, I can have someone accompany me every time I need to drive somewhere.

I have used each of these methods to remain employed and engaged in my community, and I am appreciative of the friends and family who continue to assist me. But when you are used to the having the ability to get up and go whenever you want, scheduling your activities around someone else is limiting. Like most people who have been driving for decades, I am used to the freedom of movement which comes with the privilege of being a licensed driver who owns a vehicle.

In early April, I reached an important rehabilitation milestone when I successfully transferred in and out of my driver’s seat. I required assistance, but I did it! After a few practice sessions, I began to drive around my neighborhood. Within two weeks, I was driving to and from my office once or twice each week. My knee protested from time to time, and realistically I was unable to drive for more than 45 minutes at a time before the discomfort became too much of a distraction. But I was driving!

Behind the wheel for the first time in April.
Behind the wheel for the first time in April.

This past Tuesday I reached an important milestone when, for the first time since January, I transferred into my driver’s seat and put on my seatbelt completely independently! It took me a good five minutes, and there were a few choice words flying out of my mouth from time to time, but I did it!

I still require assistance to get out of my driver’s seat and get back into my wheelchair, so I am not completely independent with driving. I don’t know if I will reach that status given the changes in my leg. This may be as far as I get with my rehabilitation when it comes to driving. I plan to make the move to driving from my wheelchair using hand controls within a year, so I just have to find a way to function until then.

For now, I know if I had to get somewhere in an emergency, I could get in my van and go. I might not be able to get out when I get there, but that’s a problem for another day.

My experience has given me a new perspective on the transportation difficulties people with disabilities face on a daily basis, particularly those who live in suburban or rural areas. I have not been as strong of an advocate for transportation as I could be. I plan to change that going forward. The push for community living can only be successful if people have access to their community and accessible transportation is a crucial component of independence.

In the days immediately following my discharge from the rehabilitation hospital while I was relearning how to function at home, I wondered if I would ever be able to take a road trip and spend the night anywhere other than my apartment. I enjoy traveling and the prospect of not being able to explore the world was frightening and depressing.

This is Memorial Day Weekend in the United States, the unofficial start of summer. I have spent every Memorial Day Weekend in my hometown except the year I was an exchange student and the year I was in the hospital after my gallbladder surgery. I was determined to find a way to make it home this weekend. Once I transferred into my driver’s seat on Tuesday I knew it would happen.

Yesterday I drove my van down the highway in the bright sunshine. I rolled down the window, cranked the music and sang the songs from my “move it” playlist with the wind blowing on my face. As I rolled to a stop at the end of the exit for Bainbridge, I couldn’t help smiling in triumph.

Sure, there is more work to do in my journey towards independence. But this weekend, I am content to be on the road again.

Clear the Roads!

A week ago I shared my success at transferring in and out of the driver’s seat in my van. I hope you’re sitting down for this update because it’s a big one:

I’M DRIVING!!!!!!

The photo below, which has already garnered 241 ‘likes’ on my personal Facebook page, is proof that I have reached another important milestone in my quest to get back to my usual routine. This also proves I am blessed to have many kind friends who are invested in my recovery. Either that, or they are sick of hearing me gripe about not being able to drive.

Photo of the profile of a woman seated behind the steering wheel of a car. She has brown hair pulled back in a pony tail and is wearing glasses.

It’s not all smiles and sunshine, despite what you see in the photo. I still need assistance to get in and out of my van seat, so I am not completely independent with driving. And transferring takes me at least 5 minutes each direction.

But once I get in the driver’s seat, I can drive! Granted, I am not ready to drive for more than 30-45 minutes at a time. My endurance is reduced and my left knee starts complaining about the position after 20 minutes in the driver’s seat.

But I’m driving! Last week Thursday I drove to and from work during the day, and then to and from my Toastmasters meeting in the evening. Saturday I drove to and from a Rotary training. I didn’t crash – I didn’t even need to slam on the brakes.

Driving has been the critical step. Everything I have done so far has been to get me stronger and healthier so I can return to work. I cannot return to work without being able to drive.

While I am grateful for the progress I have made, I am also more aware of how difficult it is for people with disabilities to engage with their communities when they do not live close enough to access public transportation routes. I know I must continue to work with other advocates to increase transportation options for the disabled, as well as consider a different living location so my routine is not disrupted in the future if I lose my driving privileges. I worry about my elderly parents and how they will cope when they are no longer able to drive in their rural community.

Automobiles have changed my life and I am thrilled to be regaining independence. But I know it is fleeting and I have to begin to prepare for the time when I will no longer be able to get in my van and go.

For now, I’m content to just keep bragging about the fact that I have reached another step in recovery.

Current status: Uncorking a bottle of wine; attempting to get a wine glass down from the cabinet without breaking it; savoring the last of my Australian Cadbury chocolate while I crochet.