One morning in Maine

How nice to wake up in the morning (my favorite way to start the day) to find that my mind wasn’t racing off in anxiety driven confusion, my legs weren’t cramping, my arms weren’t numb, my back, or neck, or shoulders weren’t aching, and I didn’t have to get up RIGHT NOW to pee. I was actually able to lie back and close my eyes and breathe for an hour. A rare treat.

This sings me to sleep, and often plays on repeat all night. It is a comfort, somehow, to wake in the middle of the night and hear is softly playing in my ear. And to wake up with it repeating in my mind.


Not Done by a Long Chalk

I have borrowed this well written open letter from Ricky Buchanan, who writes the blog Not Done Living. He writes, “Here’s my main theory on life: I have disabilities and problems and troubles and stuff that holds me back, but dammit I’m Not Done Living! Not by a long chalk.” I repost this without Ricky’s permission. I encourage you to visit Not Done Living and sample his  positive attitude and busy life. The letter falls into the category of Stuff I Wish Other People Would Read. For most of you, this is preaching to the choir. Pass this along – with the proper attribution – to those who need to read it.

Open Letter To Those Without An Invisible Disability Or Chronic Illness

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

Thanks, Ricky. Keep doing what you do!


Not Safe For the World. I have recently re-discovered dancing, if I may be so bold as to call it that. More like spazzing around while holding onto the edge of a sturdy piece of furniture. I’ve not attempted it in front of anyone -I make Elaine Bennis look like these folks. Needless to say, I only do it in the privacy of my own home, as a part of my PT routine. I’m not so much concerned about what other people will think of me, as I am about frightening them, and inspiring them to sedate me for my own protection. My current dance mix (and, mind you, one of these tracks usually finishes me off for the day.): All About The Bass, That’s Not my Name, Tightrope, Save It For Later, Down, Down, Down, Rocket Scentist. Trust me, I’m nothing like this dude. Anywho, I have fun, and it feels good. Even if it might be terrifying to look at. (No mirrors in my living room…)

And another thing. I mentioned The Firefly, a power attachment for a manual wheelchair, which I thought at the time was not available in the US. I was wrong. It, and several other gizmos, can be had from Rio Mobility. They also offer – and this item I am even more interested in – The Pivot, a lever-drive system that replaces the wheels of the chair, and affords the driver a much more efficient way to drive a wheelchair. It’s priced a bit over my head, but it is on my wish list, waiting for my ship to come in.

Now, I am getting away from my desk and going to sit on the stoop and enjoy this lovely summer day. We in Maine wait all year for days like this one. Or maybe I’ll pull the curtains and dance!

Jamboxx lets us all join in

For many people with progressive disabilities, playing a musical instrument might be a thing of the past. As hands lose strength and small-muscle coordination fades, playing a guitar or piano becomes increasingly difficult, and often, eventually, impossible. For others, being able to manipulate a musical instrument was never possible.

Along comes Jamboxx, a small, easily portable, plug-and-play midi controller that is operated by the breath. Looking and operating something like a harmonica, the Jamboxx controller allows anyone to easily enter the unlimited world of music. Initially conceived to allow people without the use of their hands to play digital musical instruments, it can be used by anyone regardless of ability, age, or musical skill. Simply plug the device into your computer, and you’re ready to go. It can be used in the recording studio, in live performance, as an educational tool, even as a game controller or computer mouse. The possibilities are limitless.

Jamboxx is currently seeking funding through You can visit their page to make a contribution to help make this amazing advance in musical creation a reality.