Rebecca's New Wheelchair

Please take a good look at that photo up there. That smiling emaciated person is Rebecca Wilova, one of the most extraordinary, radiant, and giant-hearted human beings I have ever met -- a person whose goodness and grace I can only aspire to, and against which I measure the goodness of others. If you know her too, you know I'm not exaggerating about how wonderful she is; and if you know her too, you know that she is slowly dying of a disease doctors can't seem to cure. 

We can't fix that on GoFundMe. But she does need our help, and the need is time-sensitive and urgent. We can't cure Rebecca, but we can  reduce the unnecessary suffering currently being inflicted on her by the bureaucratic labyrinth of our healthcare system. She desperately needs a new wheelchair. If we leave it to insurance it could take 3-6 MONTHS just to find out if insurance will cover it. If we help, she can have it in two weeks 2 WEEKS. And when someone is in constant pain and losing weight by the moment, only one of these timeframes makes any sense at all.

Rebecca doesn't like to talk about the gory details of her sickness. Only by twisting her proverbial arm could I get this much detail: "I have a progressive neurological condition that affects my blood pressure, heart rate, and spasticity. Of course, all these affect my ability to walk. When I was prescribed my pink wheelchair in November 2016 I was 150 pounds. I am half that now. The weight loss is also neurologically related: gastroparesis caused by the same thing that’s causing everything else. No medication or treatment has been successful in stopping that. (Not for lack of a lot of trying.)" 

I think a graphic illustration of the point is in order.
Look at the picture up top. Do you see how Rebecca's rail-thin arms and legs are virtually lost in it, how she is at sea in it? The sheer size of this wheelchair causes her considerable physical discomfort on a daily basis. Her partner, Karen, tells me that it is "limiting her ability  to enjoy her life outside as she once did."

Then, in characteristically gleeful pose:
You see it, surely. She's gone from looking like a healthy person with an unidentified disability to a person about whom no one could mistake the truth -- that she is wasting away. She smiles at us anyway, all the time, but there it is. 

Rebecca and her lovely partner, Karen Kerr, are one of those couples that could make anyone say "awwww!" I mean,
And yet the time they have together is perennially vexed by insurance problems -- and this after they relocated to Minnesota, where such problems exist on a smaller scale than in many other places in America. 

"We are trying to get a new custom wheelchair but are getting tangled in the red tape that caused the first wheelchair to not be covered by insurance," Karen explains. "We’ve been told it could take 3-6 months to find out that insurance may or may not cover this wheelchair that everyone on her care team agrees she needs now.  Paying out of pocket they can get us the new wheelchair in only 2 weeks!"

That is unacceptable. Let's fix this.

Those of you who know Rebecca on Quora have seen how her writing has developed. She began as an outspoken advocate for the Deaf community of which she is so proud a member. We have watched her make poetry, or perform ballet, or both and neither, with her hands -- her wonderful hands, speaking her wonderful ASL:

(This is Rebecca discussing deity and religion -- translating a Quora answer of hers on the subject into her true language. Beautiful, no, this elaborate choreography of expression?)

But in more recent days, as she has gotten sicker, Rebecca has taken to writing a kind of prose-poetry, these little shards of light she is good enough to share with anyone who reads her work. When I'd finally persuaded her to  let me try to help, and asked her to write something on her own behalf, here is what she wrote:

"I have dreams.  I have wants.  I have needs.  They all center around this one piece of expensive equipment that’s a customized prosthetic.  I can walk.  A little.  But not very well.  I have a junior walker finally, and it does improve my life to be able to go to the bathroom with equipment.  That’s wonderful.  However, my pink wheelchair, as amazing and as wonderful as it has been for me the last two years, is something that fitted me at 150 pounds, and at half that, really hurts, not to put too fine of a point on it.  Why do I still use it then? Because I have nothing else.  It is still amazing, and liberating, but it is no longer enough.  I have never been able to use it in the apartment, and as I get weaker, this becomes a more serious problem, as I can’t wheel from the bedroom to the kitchen, and I haven’t been in the living room in months.  The junior walker at least makes the trips I make less dangerous, but not foolproof, inside here.  

The real problem, these days, is that I need a wheelchair that is four inches narrower and three inches deeper.  It sounds counterintuitive, but I have the same length legs, with far less thickness.  I don’t have enough support for my legs, and I have a great deal of pain with sitting in my wheelchair these days.  It also increases my stiffness, and that is itself a serious fall risk, especially in public bathrooms. I have been lucky to have lost my balance against the walls so far, but yeah.  I don’t really relish another fall-related hospital stay."

I don't relish that idea either.
I hope you will join me in helping Rebecca get the new wheelchair she so badly needs. If you know her and/or Karen, that will be an easy sell. If you know me, know that you can do me no greater kindness than to help my beloved friend.

Two weeks. We could have the money in two days. Please help if you can. There is no measuring the good you will be doing -- just as there is no way of overstating the goodness of the person you will be helping.

Thank you from the bottom of my heart, Karen's, and Rebecca's.

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Organizer and beneficiary

Michael Masiello 
Bound Brook, NJ
Rebecca Wilova 
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