My enunciation is getting rough. The letter “s” is my particular nemesis. I slur and lisp so badly, I have stopped using plural forms, and I avoid contractions. This afternoon, though, my sloppy “s” saved the day.

By 4:00, it felt like everything that could go wrong had already happened. A scheduling error left me without a caregiver, Pickle threw up after eating too much of the food that our parrot Jasper enjoys tossing to him, and the taxi I had booked way in advance never arrived to take me to a doctor appointment.

However, I didn’t want to end the day this way. I simply refused to let the sun set on this note. You see, I have a mindset that has led to me being labelled naive and unrealistic, but I can’t seem to shake it. I suffer from a relentless optimism, a belief that it is never too late for things to get better. Maybe that really does make me naive, but I like to describe myself with such words as “resilient,” “resourceful,” and “dauntless” instead.

Consequently, when my new cab arrived bearing a kindred spirit, I was delighted but not surprised. Every day holds some shred of happiness if only you remember to look for it. Doju, my driver, also had a rough start to his day. The cab he usually drove was out of commission, so his boss saddled him with the taxi outfitted as a wheelchair van… a vehicle full of equipment Doju had never seen before.

Anxious not to mislead me, as soon as he parked at the curb, he confessed, “I’ve never worked with a wheelchair van. I don’t know exactly what to do.” His anxiety aggravated his speech impediment, and I could tell he was now embarrassed on multiple fronts.

“That’s OK,” I replied, not bothering to hide my slur over the contraction; you have to be willing to give if you’re going to get anywhere important. “Let’s figure it out together.”

And we did. Rather quickly.

We fell right into conversation once we hit the road. His stutter grew less pronounced as I waited with patience to hear him out. He got the hang of my own impediment, and then it was easy to talk and listen. We shared chocolate chip cookies I had in my purse (welcome to my life in the Clinic weight maintenance program; must love calories), and relaxed into one another’s company. It ends up Doju has a wicked sense of humor.

“Rachel, you are just great. Here’s my card. Call anytime,” he said.

“You are so sweet!” I replied, taking his card.

“Oh, no, you misunderstand,” he grinned. “You may call me anytime, but I never promised to answer. I think I will see your number fill my call log and just click delete, delete, delete…”

It ends up both stuttering and slurring disappear in laughter.

Stuck in traffic, I learned he had been born in Tibet, but was whisked away so quickly to a safer patch of earth that he cannot remember his home. Despite this, and knowing he can never return, he chose not to tell his story as a sad one. Instead, the tale he shared was about love and accepting loss. I was amazed, not for the first time, at how deeply our most distant brothers and sisters can speak the language of our own messy hearts.

Traffic crawled, and I knew I would miss my appointment by a half hour, but the day was still salvaged in my eyes. As we sat on the glimmering hot road, Doju marveled at the brilliant sunshine after such a rainy spring. I pointed out the riot of colorful flowers spilling out of gardens lining the street.

There were so many words neither of us could manage to say, but still, we chose to speak to each other. We chose to see roses.

2 thoughts on “Wheels

  1. Melissa D Chambers says:

    This is so awesome. A bright side to what could have been seen as disasterous. I recently (May 26, 2016) was diagnosed with ALS. I originally went in to my doctor in January, about a bit of weakness in my left arm and five months later here I am. I admit to being very much afraid as I read information about it. I knew next to nothing before this about ALS. I have so mucy still to learn. I live in Indiana just southwest of Bloomington where the main campus for Indiana University is. I will read your blog and glean information from that. Is there any advice you can give me?


    • howilivewithals says:

      Hi Melissa! Thanks for reaching out. I am so sorry about your diagnosis, but I have to say, I’m so impressed that you are already taking action. I cried in bed for a month after diagnosis. First, I recommend contacting your local ALS Association if you have not already done so. They will send a care specialist or two to your home and rock your world. In my first visit, I expected to be overwhelmed, but these are pros; this is not their first rodeo. They basically asked how I am feeling and about how I am physically, so I felt like I was venting. They took notes the whole time, and then asked if I had a plan for medical expenses (nope!). Five minutes later, they figured in my budget and major needs, found the best options for me, and before I knew it, I had better insurance and medicare. Next, they listed medical equipment they could loan me indefinitely, naming pieces they thought would help me based on what I was telling them. I’m talking a power wheelchair, bathroom equipment, bed safety gear, and so much more. This is all through the loan closet. They will also help arrange (and finance!) weekly caregivers. I will write more to you later, but my fingers are getting stiff now. Can I give your name to the facilitator of a closed Facebook support group, the Forum for Women with ALS? Once invited, you can ask any question and get at least 30 responses from some amazing women. Looking forward to being in touch with you about healthcare options!


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