March 24, 2013


A mountain feels like a most appropriate photo. I feel like I remember what its like to be at the top of the mountain. But there’s been a “steady, systematic decline” – Nine Inch Nails. This is how I would think many people with MS feel – – especially with a progressive type. With bits and pieces of one’s self slipping away sometimes it feels insurmountable but, alas, there’s hope. Fortunately, I didn’t wake up one day with everything gone: being able to walk, being able to use my hands, not having double vision. It happened over a 15 year period. Now, the reason why I say fortunately, is because I have been able to adjust to each loss as it occurred. If it had been sudden I’m not sure how I would have handled it, but because it’s been a slow, prolonged process I’ve been able to adjust accordingly. 

     The picture of the mountain has trees in front of it which require one to adjust to the hike with the eyes peering up at the top. There’s no cure, but the “top” of this disease, at this stage, is being able to make it to a doctor’s appointment or another outing; such as visiting a relative or even through a shower. It seems trivial but now it’s the little things that are really big. 

             It may sound crazy but I feel incredibly fortunate. I’ve heard of people with MS who are blind. But, (even with my perennial double vision) I’m very pleased to see a beautiful sunset or even watch programs on my television. I can taste, smell and, with help, I can touch, with no sensation lost. I can feel, I can taste delicious food: I can still speak with relative clarity, and people understand  what I am saying, for the most part. Hearing music is a blast from the past.  

Seeing this keyboard reminds me of all the emails I sent and typing I’ve done. I’m going to rap up for now and we’ll continue later.


March 11, 2013

This blog is in the process of development. I am digging out a picture of myself that is fairly recent, and relatively complimentary. I don’t want to write something that only my mother would be interested in reading. I would like to write about what it’s like to be a quadriplegic wondering “is anybody is out there?”~ Pink Floyd. It’s very easy to feel locked up inside my own head and agonized, at times, over how easy it once was to hop into the car and take off. This blog for example is a reminder of the reliance that I have on the people around me.  It requires my trust and patience, and their trust and patience with me, and all of my “snarkiness”. Tara for example is one of my PCA’s (Personal Care Attendants) who is typing this out as I dictate it, and putting up with my demands. I am a perfectionist at heart, so she’s in for a good time. 

I wonder how many people out there don’t think twice of reaching up to scratch an itch on their shoulder or pick up a phone to make a call. These are things that aren’t thought of twice by most people. How I long to warm up my cold knees with my warm hands, to brush out my long hair myself or to pick my own nose.  Yes, it’s true and I hate to break the news: dignity does morph into varying shapes with this disease. There is dignity to be found for instance even after sitting in ones own excrement, but more on this later.  

At any rate this is it. Let the blogging begin…