Sweet troubles

I got it!

Last week, a large package came in the mail. This week, two more, smaller boxes arrived. I had been told a few days earlier to expect the deliveries, and they did indeed turn out to be my Vmax - the wonderful, spectacularly high-tech speech device that I’ve been posting about in recent months and looking forward to getting - and the accompanying camera and stand that attaches to my wheelchair.

I should be ecstatic. I should be brimming over with unmitigated joy. After all, I’ve been waiting for this for about a year, and it will supposedly make things easier for me and for others and change my life for the better.

Then why aren’t I?

Don’t get me wrong. I’m very excited. I’m thrilled. But I’m also full of questions and worries. And I’m scared.

For one thing, I’m mystified. In late May, I learned that my doctor had not sent in the prescription for the device to be submitted to Medi-Cal. This means that not only did Medi-Cal approve - which I had serious doubts about - but it approved this extravagant machine, which, I’ve learned, costs $8,000, in two or three weeks. This almost doesn’t make sense, when Medi-Cal won’t cover dental work and I have to wait months for my wheelchair to be repaired. I guess my dad’s theory is correct - the more common a request, the more likely it will get bogged down or be questioned. There aren’t many people asking for a Vmax.

But, more than this and perhaps feeling guilty about it, I am worried - and, yes, scared - about how I’ll do at using it. It may be that, in a sense and despite my griping about it, I was expecting the long Medi-Cal approval process to enable me to put off dealing with these concerns.

I am afraid of breaking the device once it is attached to my chair. Yes, I’ve been assured that it’s quite durable, but the camera which tracks the sticker on my forehead looks pretty delicate. I go over many rough bumps when I’m out, and what if I’m not as careful as I always should be when going through a narrow doorway or by a table?

I am concerned that I won’t be able to operate the device fast enough, especially for those who know me who may be impatient or are expecting too much. I am realizing that I may well be included in this group. Will I find the balance between having the device function slowly enough for me to effectively use and between quick enough for whoever is waiting to hear what I’m saying?

Perhaps most interestingly, I am anxious about how I’ll be speaking spontaneously or "on my feet," so to say. All my life, I have thought out what I will say when I speak - sometimes to a lesser extent when a person is more familiar with my speech - picking words that are simpler and easier to understand. A result is that my mind sometimes goes blank when it’s time for a quick comment - perhaps a sharp, witty interjection - or I need to quickly answer a question requiring more than the simplest of answer. Sometimes, because of this, I just take a pass and don’t speak. How much will all this change with the Vmax? Will people expect me to rattle off spontaneously? Will I become known for having a quick wit? Will it be any easier to chat with a guy, face to face, who I meet through an on-line hook-up ad? Or will it change any of this at all?

There is also the question of when and with whom to use the device or not use it. I still want to speak and have people try to and get to understand my speech. I don’t want to be mute and have people always rely on the Vmax. (This was also an issue for me when I got the LightWriter, the small typewriter/speech device that I used for a while, but I imagine this will be more of an issue with this device, since it is significantly easier to use.)

Another thought that I’ve been having lately is that I wish I had gotten the Vmax years ago when I had more energy to deal with the changes it will bring. Then again, isn’t it supposed to make things easier, especially now that I have less energy?

It occurs to me that all these concerns and worries (and others like how long does the battery last? and what happens when I’m out in the rain?) aren’t really that much more than the usual anxiety when facing a big change, even when it’s for the best. I have no doubt that if I was told I would be able-bodied tomorrow, I would be on Cloud 9 but also totally freaked and scared shitless. And maybe having to be more careful when driving my wheelchair will force me to slow down and take it easier - like I really should and (sometimes) want to.

It also occurs to me that the Vmax came at the right time. I now have, with the support of "my team" at Casa Colina Hospital at least for right now, a great summer project.