View of a grey Derwent River, with cloudy skies. Bruny Island is in the distance.

To Tell the Truth

I’ve been sitting on this post for a few months, writing when I felt the urge. It seems fitting to share this today, which I just learned is the International Day of Happiness, because I am the least happy I have ever felt in my life and I don’t know what to do about it. Admitting that is difficult, because I know my friends and family will want to help me, make things better, do something to make me happy. The reasons for my unhappiness are complex and there are no easy fixes. Trust me, if there were, I would have done them by now.

This has been building since I lost more physical independence after my femur fracture in 2016. That catastrophic event took away my ability to independently drive my van, and increased the number of personal care hours I require. It also caused me to change how I use the bathroom, limiting my ability to pee freely as I described in this post. OK – to be fair, I’ve never been able to pee freely. But, until I broke my leg I was not limited to the use of three bathrooms on the planet.

The loss of independent transportation required me to move – twice – in the past eighteen months. I have been using my local paratransit system for most of my travel to and from work and events. Paratransit is a shared ride system, which means you are not guaranteed a direct ride from your pick up location to your destination. There have been days that I am picked up at my house (which is 15.9 miles from my office) to ride around for two hours, picking up and dropping off other passengers until I am dropped off at work. On average, I spend two and a half hours every day on the bus to travel my 32 mile round-trip commute. This is time I don’t get to write, volunteer, read, work, or just relax.

Last September, my friend and former college roommate Chris surprised me with a phone call. We hadn’t spoken since the start of summer, but our friendship is one where we can pick up exactly where we left off even if it has been months since the last conversation. We we played catch up and traded stories, I admitted that the past several months had been stressful. My exact words were something like, “I’m not really doing well and feel like I’m barely keeping it together most days.”

Chris was quiet for a moment, then responded, “Well, I wouldn’t have known that from your Facebook posts! You’re so busy, and always writing about volunteering with Rotary.”

The truth? I hate being negative all the time. So I don’t share all the crap I’m dealing with on social media.

I am not alone in this. According to a survey conducted in Great Britain, only 1 in 5 people are truthful in how they portray themselves on social media sites like Facebook and Twitter. According to the marketing company Custard, who performed the survey:

When asked how people’s lives differ online, 31% of respondent said that their social page is “pretty accurate, just with all the boring bits removed” and 14% said that their profile makes it look like they have a “much more active social life.” The survey also showed that men are more likely to lie about their lives through social networking sites, with nearly half (43%) of men polled admitting to fabricating facts.

I don’t feel like I’m lying on social media. I am not making up the things I share publicly. In my case, I choose to try to keep complaints to a minimum on Facebook. I am consciously not sharing most of the daily stress that is causing me to slip further into a pit of unhappiness. At least, I try my best to keep the negativity to a minimum.

But I’m struggling. Right now, finding positivity is a chore I force myself to complete each day.

It used to be my natural way of operating. I am an optimist. I see the glass half full. I believe things could always be worse. Yet, recently I don’t feel up to the challenge of maintaining optimism.

I have withdrawn from friends and family who care. I text instead of calling because it requires less energy. Until last week, I hadn’t sent a birthday card to anyone in at least two years. At a time when I should be surrounding myself with other positive people because I’m an extrovert who gets energized in social situations, I am hibernating.

I am not writing as often and when I do it’s not my best work. Writing helps me process what is happening in my world. It is a way for me to maintain balance and emotional stamina. A glance at my blog statistics shows I only posted 55 times in 2017. That may seem like a good number. But when you compare it to 2015, the year before the femur fracture, it pales to the 164 posts I shared.

Before any of you start sending me notes reminding me that you love me and that life is not all bad, I need to tell you something. I KNOW this is temporary. I KNOW what is happening in my life is not the worst thing in the world that could happen. I KNOW there will (eventually) come a day when my new wheelchair doesn’t make me cry in pain. I KNOW I will (someday) get that new wheelchair accessible van with the high tech driving controls which will enable me to participate in my community at will. I KNOW there are millions of disabled people who would love to have the difficulties I am facing right now – people who don’t have accessible housing, access to paratransit, full-time employment, adequate personal care assistance. I KNOW I am speaking from a world of privilege they do not have and would gladly take in a heartbeat.

Knowing those things does not make the challenges I’m facing less real or less of a barrier in my life.

Last week I attended a book reading at my local independent living center. During the community discussion after the reading, someone mentioned the anger disabled people feel – anger that is not acknowledged or validated. Often, well-meaning people will listen to me vent in frustrated anger and respond by saying, “Well, at least it’s not this (insert awful thing here)” or “It could be worse! You could have (insert other disability or illness here).”

Those comments don’t help me feel less angry. They don’t acknowledge that here and now, I am living with levels of fear, anger, and unhappiness which threaten to burst out at inappropriate times. They don’t validate my feelings of discouragement at having to battle and navigate a bureaucratic system which is supposed to be helping me but has not produced anything meaningfully helpful in 18 months (I’m talking about you ACCES-VR).

So, today, on this International Day of Happiness, even a gratitude list doesn’t make me feel happy. I debated whether or not to share this post and eventually decided perhaps there was someone else who is not happy today who could benefit from knowing she is not alone. I edited, deleting swear words and prepared myself for the reaction it will bring.

Tomorrow I’ll be better. That’s the way it’s been for over 2 years. This too shall pass. Periods of happiness can be found, just not for me today.

30 Days of Thanks Day 29: Technology

Today I saw an online video advertisement for a “lazy arm.” This device mounts to a table or headboard and holds a person’s tablet or smartphone. While the advertisement touted it as perfect for “your lazy friend,” I thought of disabled people I know who could find more independence with this device.

This afternoon I used my phone to connect with friends in Texas, Tasmania, and Alaska. I confirmed my doctor appointment and booked my paratransit bus for tomorrow without needing to make a phone call.

Tonight I will sleep using a machine that has a computer chip to record my breathing. When my doctor needs to know about my sleep and breathing patterns I simply eject the child and bring it to the office.

Every day, my life is made more independent by technology. Some advancements are large, and sometimes the simplest technology is the most profound. I am grateful for the increased access, and I look forward to what is coming next.

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.

Prove It!

Monday afternoon, I glanced at Facebook while eating my lunch. A friend of mine who also uses a wheelchair had posted the following, which I am sharing with his permission. I have edited to protect the privacy of everyone involved:

“I just received word that my formal medical appeal to my insurance for my wheelchair has been approved. A bit of history:

I took delivery of my custom ultralight wheelchair last July. My claim was denied by insurance as the wheelchair was deemed medically unnecessary. My provider has been amazing in not sending this to collections and working with me on the $8,000 outstanding bill, even though the invoice is now 9 months old. They have held billing as they knew it was in appeal, and have not sent me past due notices.

With the help of a retained third party, I sent my insurer a packet of medical documentation (over an inch thick!) and crafted a letter with professional legalese accompanying the documentation explaining the provisions they needed to follow, and demanding a neutral board certified neurologist familiar with my condition assess the records.

Thirty days after receiving my letter, they decided they are going to pay after all. I’m grateful for all of the assistance of my third party advocate (he is a former claim reviewer, an attorney, and I could not have done it without him, truly), my equipment provider for holding onto the billing, and my physician office in assisting with medical documentation.

HOWEVER…I am very saddened and disappointed by the state of our healthcare reimbursement system. This is my EIGHTH ultralight chair, I have an incurable genetic condition, and will not see a cure in my lifetime. It is not like my need has, or will ever, change. It took all of my brain power to navigate the spaghetti of the appeal process, and I have three college degrees, am a business executive, and have over six years of experience managing medical insurance programs at large Fortune 500 companies.

If it has taken me nine months, and the assistance of outside professionals, while personally quarterbacking all of the players, what hope does the average person on the street have?

I’m very grateful by the resolution, it’s a great start to the week. I’m a bit disheartened though, as I’m reminded there are many people, with needs far greater than mine, facing equally complex up hill battles, but with not nearly the resources I can bring to bear to resolve them. What of their needs?”

His post struck a chord with me because my Monday morning started with a trip to the doctor. Not because I was sick – well, that’s really not true. I was sick last week and spent several days home in bed with a bad cold and laryngitis. But on Monday morning, I was feeling the best I had felt in a week.

The trip to the doctor was made for one reason: the government made me go. The government makes me go to the doctor every six months to prove I still have a disability.

I rely on a Medicaid-funded (read: funded by tax dollars) program for the personal care I require to live independently in the community. Since I use a publicly-funded program, there are rules. One of the rules requires me to see my doctor every six months. I call it the “prove I’m still disabled” appointment.

I go to the local medical center. I always make an early morning appointment so I can go before work when I have more energy. The nurse takes my blood pressure (114/74) and my temperature (97.4 F), talks to me about preventive screenings and verifies my information is still accurate. The doctor comes in and asks me if anything has changed since my last visit. We discuss life and my health. Monday we talked about Australia. She takes the form certifying my continued need for home care and asks when the completed form must be returned to the local Department of Social Services. During the October visit she performs my annual physical. I make an appointment to return in six months and leave for work.

Every. Six. Months. Whether or not I am sick. Since I began using the program in 2008, I have never been sick for one of these visits.

I have a progressive neuromuscular disability. My need for continued home care has not magically gone away. There is no magic pill I can take to make my mobility impairment disappear. But I have to prove I need assistance and because I am dependent on the program, I resign myself to playing the game.

People with disabilities are used to justifying their needs for adaptive equipment, medical treatment and services. My friend had to prove his need for his specific wheelchair. I have had to do the same, and also justify my continued need for home care.

Why? I suspect it is because somewhere there are people who are telling lies and committing fraud. And the insurance companies are businesses that want to make a profit so they have decided they will save money by making it difficult to access care, services or technology. If they make it difficult and deny a claim, maybe the patient won’t appeal and will just pay it.

I don’t have data to back up that claim. It’s just my opinion, as someone experienced in the game. Much like my friend, I anticipate I will be required to prove my need. I give my doctors specific examples when we are discussing my care so they can use the language in their reports and letters. My friend engaged a third party to assist him in his appeal and it took him NINE MONTHS to get approval for his chair.

A wheelchair is not a toy. It is not an accessory which is convenient to have. Those of us who rely on Personal Assistants literally cannot live or function without them.

My friend’s insurance company thought his independence was not worth $8,000. If my friend does not have access to the chair he needs, he will not work, he will not independently go shopping, do his laundry, make his own meals or any other activity of daily living.

The invoice for my wheelchair listed the value at $33,647. I am pretty sure my insurance company paid a reduced price, but I’m guessing it was still over $20,000.

What is your independence worth? Can you put a price tag on it? Can you prove you deserve it? Should you have to?