An MG'er, Beverly J. Nason, (affectionately known as Grammy Bev) described it perfectly in this little essay.
On a good morning, we awake with a dollars worth of invisible nickels in our pocket, or perhaps we find them after our first dose of Mestinon. We must decide how to spend this precious supply.
Shall we shower, dress, make the bed, have breakfast, go to a job, and recklessly spend them all at once? Perhaps, we should just use twenty-five cents, and dress without the shower or shave, leave the bed for later, and spend five to fifteen cents for breakfast. We alone may judge from our recent experience.
Having decided, we act, and our precious deposits is made into an invisible slot, filled with invisible batteries. These batteries kick in slowly and we drain their reserve. When it is close to gone, we force ourselves to rest. As the day progresses, we decided to do a small chore. The shave, shower, shampoo? Five more nickels perhaps? The bed? One nickel perhaps. Cleaning house? Going to work?
How many nickels will we have to spend today? For many of us, we can barely afford one nickel at a time, today. If we have the luxury of time for a rest period or a nap, We might awaken with a sudden new supply of nickels in our pocket. Probably our next dose of Mestinon will provide us with a fresh supply. For others, we may find we've chosen unwisely and squandered our day's wealth, Or borrowed from them tomorrow, to do what had to be done, or simply what we wanted to do to improve our quality of life.
the debt must be repaid, and time in bed will be the price. We can gamble them all away, or spend them gratefully. When we awake, morning after morning, with pockets full of nickels, Such an abundance that we no longer have to count them We have achieved Myasthenia Gravis remission May you all have "pocket full of nickels" |
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