Drinking Through a Straw: My Journey with ALS By Stuart Rakoff

Stuart Rakoff photoMy name is Stuart Rakoff. I am 69 years old and live in Reston Virginia. In the summer of 2012 I was diagnosed with ALS – Lou Gehrig’s Disease – a neuromuscular disorder that has already affected my eating, swallowing and walking and which will eventually lead to almost complete paralysis. There is nothing in my family or health history to explain why I have this disease. Nor does the medical community have a solid understanding of the disease process – hence there are no useful treatments to arrest or slow the disease process.  I started writing my own blog (stuspeaks.wordpress.com)  as a way to help me articulate to myself a strategy for coping with my situation, in the hope that my writings on my blog and for the Don’t Hide It Flaunt It site will stimulate a discussion of the subjects I raise, as well as encourage your comments.


Getting Organized

Lately I have been almost obsessed with getting organized. Cleaning off my desk and editing file drawers. Sorting my closet to give away suits that no longer fit – either my body or lifestyle. Cancelling credit cards we no longer need. Buying desk organizers and “storage solutions”. Becoming “efficient”.Some of these behaviors are motivated by my need to streamline my life to conserve energy as even simple movements and activities become harder. But I realize that this behavior has also been a way of getting my affairs in order – of imposing some control on my out-of-control life. As I watch my capabilities further decline I am tempted to use much of my sapping energy on pursuits such as these – keeping me busy but producing little real value, for me or anyone around me. In all of these pursuits I am formulating and pronouncing, often in a loud voice, “Stuart’s Rules” – the definitive statements on how everything is to be done.

And of course when in the midst of one of my compulsive organizing adventures I can become quite critical and stubborn, behaving badly to the loved ones around me who deserve better.  While perhaps exaggerated now, I realize this is not new behavior in my repertoire. I have struggled all my life with the need to be right, wanting to be in control, and often focusing on really inconsequential details I thought were “manageable” at the price of missing the bigger issues. While I thought these attitudes and behaviors had been mostly in remission until recently, my marauding ALS seems to have weakened my ability or willingness to behave well, opening the door to let these bad behaviors back in.Learning is possible – even for old sick guys. Sometimes all it takes is to step back and look again from a different perspective – being careful of course not to stumble and fall. Fortunately those closest to me have been brave and honest to point out what they are seeing from me, offer their understanding and providing opportunities for me to learn and change. Usually with enough humor to soften what could otherwise be severe blows to my fragile ego.

I am so grateful they are helping me to see my behaviors through different eyes and set boundaries.  I resolve to be more attentive to my need to control and to try harder to stop my bad behavior.


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