Those living with chronic conditions often encounter unique daily obstacles and challenges, the gravity of which is hard to fully comprehend to the general public. In these cases, what many regard as mild inconveniences can take a more serious toll on health, comfort and emotional wellness. Read a patient’s account of their daily experiences trying to maneuver through everyday life while living with CKD. 

I like coffee, especially espresso.  Most mornings start with a triple shot, a packet of raw sugar, a few spoonfuls of steamed milk foam and a sprinkle of nutmeg–my version of the perfect macchiato. I don’t make it. Instead, I head to our neighborhood coffee cafe and ask a barista to pour it for me.  Once in hand, I’ll sip and savor it for the next hour.  When I’m with my wife, son or daughter, they’ll listen to my elaborate instructions and snicker until we leave the counter.  Then the eye rolls, and the mocking: “Yes, that will be three shots–not two–in a small cup.” “What, no nutmeg?” “Thanks for asking, but it needs more foam.” I take it in stride and hand a hazelnut latte to Andria, my wife. Sometimes I’ll even laugh along.  

I wasn’t always this guy. Growing up north of metro Detroit in the ’70s, the closest coffee cafe was a donut shop up the street from my house, and at that time, I was more interested in the donuts than the coffee. It was in college that I learned the power of the bean.

I was working on my graduate degree and working full-time when my kidneys rapidly started to shut down.  After four short months of trying to slow the loss, I fell into hemodialysis, as my doctor called it. Among the many changes I experienced was a fluid restriction of 32 ounces a day.  I found that espresso delivered the caffeine punch that I was getting from drinking Big Gulps all day at a fraction of the volume.  Walking into the dialysis center with a smaller amount of water to remove made both my nurse and my heart happy.

In addition to working on volume control, I found the value of a handicap parking sticker. I’d never parked in a handicap space before.  I knew they were there for seniors with walkers, those who drove vans equipped with hydraulic lifts for electric wheelchairs and others with severe mobility issues.  At the time, I was 37 and had been on dialysis for a little over a year.

Why Would I Need a Handicap Sticker?

I didn’t “look” disabled.  At times, I could park in the middle of the parking lot, hop out of my car and quickly walk to the supermarket.  But as I lost the use of my kidneys and began hemodialysis, I soon found that I struggled with anemia.  Anemia occurs when there aren’t enough red blood cells to carry adequate amounts of oxygen to the body’s tissues.  When anemia strikes, I get extremely tired, and that middle parking spot suddenly feels like it is two football fields away from the market’s door.  I get shots at dialysis, which stimulate my red blood cell production, but it takes time for that energy to reappear. Because of this, my social worker suggested I apply for a handicap sticker. Her reasons made sense to me, but I was self-conscious each time I got out of the driver’s seat under the power of my own legs. 

New Realities Affect Old Memories 

When the initial trauma of losing my kidneys had passed, I settled into routine dialysis, and it was time to start enjoying life again.  So, we decided to head to Orlando, Florida.  Andria and I first visited Disney World together with our high school band.  She danced with the drill team, and I played baritone sax as we marched in the Magic Kingdom’s Electric Light Parade–pixie dust settled on our shoulders. Later in college, we took a day away from the beach during spring break to return to the park with friends.  After we married, we always found time to stop by our happy spot as we visited relatives on both Florida coasts.  Now we wanted to share the magic with our kids.

We pulled our rental car into a handicap spot at the front of the park and headed to Guest Services.  I was still uncomfortable asking for a pass, so Andria presented the letter from my doctor and requested one.  The attendant graciously handed it over–no questions asked.  The pass allowed us to walk by the weary parents, their fidgety kids and bored teens and go to the handicap entrance to the ride.  As I passed with my excited children, I felt the eyeballs of those in line piercing the back of my skull. “No line, Dad, this is great.” “Shhh,” I’d reply. 

Soon we’d escape the glaring stares into the darkness of the ride.  

We got to the entrance, and another family was still in the queue.  In that brief holding time, a guy in the nearby regular line asked: “How do you get one of those passes?” “Lost my kidneys is how I got mine,” I answer. “Sorry to hear that,” or “tough break,” may have been his response, but the conversation trailed off quickly as our turn came up, and in we went. Andria elbowed me and said that was rude. I was just stating it like it is. To me, it was like saying I broke my leg.

The Problem with “Just A Minute” 

In general, I keep an eye out for cars parked in the handicap spots.  I look for the hanger inside the windshield or the embossed license plate. When I don’t find one, I feel frustrated, but do nothing. I have mellowed a bit over time and realize there isn’t much that I can do about it.  History has shown me that most people are none too happy about me explaining why they shouldn’t park in one.

On one afternoon, after picking up my son at school, we went to get my daughter, Nia, at daycare. It’s close to our coffee cafe, so we swung by for a needed shot of caffeine for me and a snack for the kids. We pulled in and I saw that a small pickup truck was parked in the handicap spot right in front of the door. I parked across the lot and picked up my daughter  from her car seat, then went to the other side and grabbed my seven-year-old’s hand.  He jumped up and out of his booster.  

It was one of my days off from dialysis, so I had a bit more stamina than usual.  We crossed the snowy parking lot and I inspected the truck.  It was running, but there were no signs of a handicap sticker.  We have a couple of medical schools affiliated with our local hospital, and I saw a hospital parking sticker in the corner of the windshield.  I opened the door and we found a short line.  And standing in it is this dude in scrubs with a stethoscope draped around his neck. “A doctor parked in a handicap spot in the middle of a Michigan winter?” I thought to myself. I just couldn’t ignore it. 

I asked my son to take his sister and find a seat.  I was about to tap the man on the shoulder, but instead, I politely said: “Excuse me, are you handicapped?” “No,” he responds, visibly embarrassed. I’m relieved that he isn’t raging. “I am,” I respond.  “You wouldn’t happen to be a doctor?” He says yes and starts apologizing and explains that he only stopped for a quick cappuccino.  

And there it is; the rationalization.  I’m sure most people who use a handicap parking spot without a permit figure it’s empty and that they’ll just be a minute–no big deal.  The problem is that they don’t know what someone else is doing at or around that same time.  For example,  a person without a sticker pulls into a handicap spot because it is close and they won’t be long.  And soon after that, an anemic man on dialysis with his young family pulls in, looking for that space.  It doesn’t matter if the space is in use for a minute or a half-of-day, once it’s used, it’s unavailable.

He grabs his cup and heads out the door.  The blustery wind slams the door shut.  It’s my turn. I grab my perfect macchiato and two warmed-up brownies and find Jake and Nia. “What took you so long, Dad?  Did they mess up your order?”

About the author:

Erich Ditschman is a national speaker, author, advocate, and blogger. His topics include kidney disease, dialysis, kidney transplant, intimacy with dialysis, coming to terms with chronic illness, getting outside, and discovering one’s best life in the face of adversity.