Battling My Most Recent Loss

Lynda Arnold
Lynda Arnold

Who knew that losing my driver's license would be such a life changing experience for me in LA? I remember (well ok I don't really remember!) but I have the psychologist reports that suggested I have my license reevaluated nearly 8 years ago due to my cognitive decline ... but I didn't really take them seriously ... I have the multiple speeding tickets and the fact that I imposed limitations on myself to stop driving late at night when I felt less safe behind the wheel due to my issues with visual spatial limitations and night vision. But still even when the young psychiatrist sat across from me in the hospital during my recent summertime 3 and 1/2 week inpatient stay and explained that they had reported me to the DMV for dementia, I had no clue as to the wretched impact that losing my license would have.

I was cavalier with the doctor. She was curt with me. She told me, "This is LA, hire a driver, everyone in LA has drivers". Did she forget that on my disability payments and my husband's teacher salary we were barely able to pay our bills let alone hire anyone to do anything? Did I really think that the not-so-fabulous LA metro and bus system was going to meet my needs for everyday transportation? Somehow I must have thought that this was all going to work out. Somehow I must have thought that taking 3 or 4 buses just to get to one single destination anywhere outside the radius of my immediate home was doable and made sense. Guess I can blame that on the dementia too and its effects of poor judgment and lack of rational thinking or increased impulsivity.

Don't get me wrong. The bus and metro system in LA works for some. In my opinion, it pales in comparison to NY or London or Washington, DC. It also depends where you live. We live in the San Fernando Valley, Earthquake Zone, not a great bus/metro zone. However, I met many people who use it faithfully. They seem to know how and why and can figure out multiple transfers and complicated time lines, routes, schedules; and many don't even speak English!

Eventually, I learned to face the facts. I am a certified bus riding idiot! This is not up for debate, after 6 months of trying to navigate the system it is a proven fact.

I am also a wimp. Call me crazy but spending half or all of my day on buses just to get to one half hour appointment is nothing short of infuriating to me. As I traverse the land from my seat inside the bus I watch out the window as many people zoom carefree down our LA roads, all with the power and magic I believe they hold in their hands -- the freedom to be behind the wheel, the freedom to simply drive to their destination, in full control of their pursuits. Yes I know they fight gridlock, mayhem and traffic bottlenecks.

I've even had friends say to me "Gee taking the bus doesn't seem so bad, I hate driving in LA" ... REALLY, REALLY???, oh my ... let's switch places for a few days, let's just try to reverse roles and see ... I'm a betting gal, I'll put money on the fact that your life with a license, with a vehicle, with the freedom, is tenfold better than mine on a bus ... hmm check yup lost that "friend" ... But I digress ...

Coming up with nifty solutions to try and move beyond the bus lines, the good folks at AIDS Project Los Angeles helped to hook me up with the paratransit transportation services for the disabled known as Access. Access has a fleet of rideshare transportation vehicles, vans, cars, taxis etc that you call for the night before and try to schedule for next day service to get to your destination. You pay a set fee based on distance and you literally share the ride with several other passengers and your times are not exact.

This is a much needed service and one I use for my doctor appointments primarily instead of trying to navigate 4 or 5 bus lines each way. You have to be "qualified" to ride Access. I had to go take a test (with real buses, ramps, people who gave you instructions, walked with you, wear a safety belt, had to follow instructions navigating a pretend route) to see if I passed and needed the service. I wasn't sure if I should be happy or sad that I passed and needed the service. I chose to be satisfied that I had a new option open to me.

However, I soon found that it is embarrassing to have them pull up curbside anywhere and pick me up. I have to walk up the metal ramp to enter the van, and hand the driver my Access ID.

Let me make this clear, I look GREAT for having AIDS after all these years. I look fat and healthy. It's been my downfall for years. I look so good it's hard for even me to believe sometimes I have a disease.

I know the Access drivers, even though they are trained otherwise, must be thinking," What the heck?" "What does she need this service for?" I can't even begin to imagine what the people on the outside think watching me enter or exit the Access van. To solve this dilemma, I started using a cane, not that I truly really needed it, but primarily so when I was traveling by bus or by Access I could at least have some sort of visible indication that there may be something wrong with me. The cane works! It's my crutch and even now months after becoming a more seasoned Access passenger, I still use it on days when I'm feeling especially vulnerable or in a self-loathing mood.

Access is like any other government-run public service; it's got severe limitations. More often than not I am either very early or very late coming or going for my appointments or getting home. The vehicles are crowded and being with other disabled persons is a reminder that life has somehow gone askew here in my world. It's even worse when my son has to ride with me. That's happened a few times. Since I don't have transportation then he doesn't have transportation unless my husband can take him and my husband is now doing all the driving, all the running around and all the carpooling. My son has learned to take the bus home from school but it's two buses, he has to wait in between, gets home late and I fear for his safety at times. It's not an ideal situation by any means.

I'm sharing all of this now because over the next few months I am trying really hard to get my doctors to sign off on my paperwork for the DMV to hold a hearing to consider reinstating my driver's license. It's the first step in the process just getting my doctors to sign off on the medical evaluation paperwork. My husband keeps reminding me that this is the first most important step to trying to get my life back here.

Apparently and for good reason I suppose, the DMV takes the issue of dementia really seriously. However, I do think that neurocognitive decline and AIDS dementia are not the same as other dementias and I shouldn't be put in the same category as ailing, aging adults. I'm sorry but in my opinion there should be levels and degrees and provisions made for people who have some deficits in slower visual spatial processing rather than a rush to judgment to take away their license to drive at 43 years of age, thereby robbing them of their independence and their freedom.

It's not a inconvenience for me to not have my license; it's a major disaster. I've become a recluse. If it wasn't for my husband or my best friend I wouldn't get anywhere except when I am brave enough to tackle the bus or Access. I've tried both. I've done my part. I've kept my sense of humor along the way. I even learned Spanish a little better and have tried to smile along the way each and every time I have to ride.

Hindsight is always 20/20. I'm sorry I was cavalier with that doctor in the hospital. It must have been all the meds they were giving me. I wasn't myself or maybe I was and I thought it would all work out. Either way, dementia or no dementia, neurocognitive decline or no neurocognitive decline, I need, I want, I beg, I plead for my driver's license back so that I can once again be in that crazy LA traffic, I want to be stuck in gridlock, bumper to bumper with anticipation and dread ... so that I can feel alive and just a little more whole!

I'll keep you posted as this battle is ongoing and I don't expect that there will be a speedy resolution. I'm no pollyanna but I am a believer!

Lynda Arnold, RN, BSN, MBA, was one of the first health care workers to go public after her occupational infection with HIV by an accidental needlestick in 1992. After the birth of her youngest son, Lynda chose to step away from the public eye.


Read Lynda's blog, Get Outta My Head, You Crazy Virus!