Cheryl's rose quartz ball: feeding her heart

©My now-deceased friend Cheryl got $100 for Xmas. She knew right away what she wanted to buy:  a ball of rose-quartz. She had just visited Lynn, then my business partner. Lynn owned many crystals. One was a very large rose quartz ball, perhaps 6-7 inches in diameter. It was big.  Cheryl had slept with it during a visit to Lynn's when Lynn still lived in Balltimore. In fact, on my next visit, I insisted on sleeping with that same rose quartz. Lynn tried to talk me out of it. I only realized tonight, as I considered writing this post about Cheryl's rose quartz shopping trip, that Lynn had not really wanted me to sleep with her rose quartz ball. I insisted. Lynn said "it is cold too sleep with it, you won't like it" and I said "Nonsense, I will warm it up." And I did warm it up.  I think Lynn did not want my energy sleeping with her rose quartz.  I missed that cue and insisted on sleeping with it because Cheryl had spoken of how much she had loved sleeping with it. Why Cheryl and not me?

It was cold sleeping with it, but only at first. It warmed up. I never felt any special energy with it.  Lynn was, and I am sure still is, a very powerful woman. She probably put a block on the rose quartz for me!  Cheryl spoke of the great dreams she had, the powerful energy she had felt sleeping with that big rose quartz ball. For me, nothing.

Just after Christmas,  Cheryl asked if I would be willing to drive her to the rock shop in my car. This involved taking her non-motorized wheelchair, with me collapsing it, putting it into the car, taking it out and then lifting Cheryl into it. Work, but work I was happy to do.

To go in her motorized wheelchair, she needed her gigantic delivery van with a ramp. And the only van with with a ramp for her 300 pound electric wheelchair was her van, which meant she would have to drive. The only place to lock down her wheelchair in her van was at the driver's position, which had a tiny steering wheel with a doorknob-like handle on it to facilitate steering. Cheryl had very short arms and she could not manipulate a regular size steering wheel so part of the customizing of her gigantic van involved putting in a tiny steering wheel and then making the gas and breaks accessible near that steering wheel, accessible to her very short arms. Cheryl had explained to me that sometimes she liked to go out in a regular car like regular people.

Cheryl, now deceased, was a deformed dwarf with an extremely rare genetic disorder. The deformity was not merely being a dwarf. She had a regular human's sized head, her arms and legs were too short for her small body. On her tiny body, her head loomed large and many saw her as a freak.  Cheryl could have been in those old, gruesome circus freak shows. She was very strange looking and lived life in  a 300 pound wheelchair. Between her different appearance and the wheelchair, she was isolated from what she imagined was regular people, from ordinary living. She had mostly friends who were also very disabled. I got to know most of her disabled friends. Most of them came to our intensives over time. Quads, paraplegics, lots of cerebral palsies. I learned that all of them longed for social connections with normal people but they rarely achieved such connections. Coming to our intensives, during which participants tended to form deep bonds and then continue in the ongoing weekly community gatherings we held year round, allowed Cheryl's disabled crowd to form some close friendships with people living in normal bodies.  Cheryl and her private care attendant eventually became my main babysitter.  I sometimes wonder what my daughter thinks of that time in her life, from age five to seven or eight when her main babysitter was a deformed dwarf and a young man with mild cerebral palsy. On her own, Cheryl could not babysit because if something had happened to Rosie, Cheryl could not pick her up or tend to a cut. But Tim could.

Her arms were so short that she could not reach anything so she could not reach into the fridge to get a soda. She could not reach a stove to prepare meals. She had a 24/7 365 private care attendant. She could not get in and out of bed on her own. Or in and out of the bathroom on her own.  I believe the unmatched head and limbs were related to her genetic disorder, which was Morquio's Syndrome. The average lifespan for someone with Morquio's Syndrome is 18 years. Cheryl died when she was 32.  With Morquio's Syndrome, the bones in the body very slowly deteriorate, sorta melting away.

Cheryl had multiple spinal fusions in her life because the bone around the spinal cord protects the entire nervous system. People with Morquio's Syndrome usually die when their spinal cord has disintegrated and their spinal cord collapses and the person becomes completely paralyzed. Our spinal cords are fragile, delicate and integral to life.

I drove Cheryl's van a few times. We could put in a regular driver's seat. If Cheryl was on any outing in the van, she had to drive because the only spot for her 300 pound chair was at the driver seat.

For some reason, she asked me to take her out 'like a normal person' in my car. This meant more work for me. I had to lift the regular wheel chair in and out of the car and it was not light. And I had to lift Cheryl in and out of the car. She was not light. Having lived a sedentary life, she was very heavy.  It's not like she could exercise.  She looked like the size of a young child but she weighed over 100 pounds. A lot for me to lift.  I dropped her getting her out of the car at the rock shop. She was very nice about it, especially considering that it was late December in Minnesota. I dropped her onto ice and snow.  She said as long as I didn't mind her weight, she didn't mind getting plopped in the slushy snow.  I felt bad but not for long. Cheryl was too happy to be out on what she called a normal friend outing, in a car, not in her gigantic van.

Nowadays, minivans can be retrofitted to accommodate electric wheelchairs but Cheryl had gotten a retrofitted, jumbo delivery van before the dawn of minivans.  Voc rehab would give disabled folks in wheelchairs retrofitted vans so they could work. Lots of folks told voc rehab they wanted to work, got the vans and then stopped working because all they had really wanted was the van.  I imagine scoring a retrofitted van from voc rehab is a lot harder nowadays.

Anyway.  I could say more about that van, and esp. the surreal experience of navigating a gigantic van with super-hyper-power-steering from a five inch steering wheel. The wheel was so small I had to use the doorknob-like stub on it, too, because the span was too small for me to use as a steering wheel, too small for me to turn it without the knob. The knob was for Cheryl, because her very short arms could not turn the tiny, five-inch steering wheel without the knob.  The gas and brake pedals were hand-operated, right next to the tiny steering wheel. Surprisingly, I got used to the weird driving set up quickly. All cars should have such sharp, easy steering.

We got into  the crystal store. Cheryl knew exactly what she wanted. If the store had any rose quartz ball for $100 or less, she was going to buy it. It had one, one that was about three inches, maybe 3.5 inches, in diameter. It was actually perfect for Cheryl since she was very small. It was about as big, proportionally, to her, as Lynn's big ball was to Lynn. Lynn's rose quartz ball was about six inches in diameter. And that was, ultimately, what Cheryl wanted, to be like Lynn.

That's all we did. I picked her up, loaded, unloaded, loaded, unloaded. The wheelchair was hard to unload and load. Cheryl was hard to unload and unload.  Cheryl's joy at being in my shitty old car -- I think I still had the Geo Metro at that point and it was on its last legs, chugging just barely -- and being out in the world like, as she kept saying, a real person, and spending her $100 Xmas gift from her parents on something they strongly disapproved of was worth the slight burdens.

Cheryl squealed delightedly as she told me her parents would be appalled to learn what she had spent their $100 Christmas gift on. This added, I think, to the joy of owning a rose quartz ball.

I can hear Cheryl laughing, smirking, giggling about how she had told her mother she was going to spend the money on a rose quartz ball. Her mother was upset, said it was a waste of money to buy something Cheryl didn't need.  What was she supposed to do?  Be practical with a present?

She was being practical, I told her.  She was feeding her heart.