Road Tripping With ALS

An Open Letter to ALS:

Dear ALS:
May I introduce myself, I am one of your afflicted, and I simply wish you to know that I don’t blame you. You are in fact not a being, but you do have a presence that is palpable. I don’t believe I am able to forgive you at this point, there are just too many unresolved deep emotions and yes moments of anger. I know I need to, just not there yet.

ALS, you have challenged my beliefs, my resolve and yes my own mind. Incomprehensible is the word that applies to the devastation you cause. I, and everyone you afflict cannot begin to fathom why you must be so insidious.

Your grasp on each of us is relentless, indiscriminately clutching at us. Your touch forever altering our life’s course and that of all in our orbit. Sending all of us careening, untethered from what anchors us. Many never finding their footing again, lost in your embrace.

Fear, uncertainty and physical confinement are your tools, breaking our hold on this life of ours. Every time you touch us you do more than take your pound of flesh, you ravish our spirit. When we least expect it, you have once again struck. What now? Our independence, our voice, our breath. We have nothing else to give, why must you be insatiable.

Even so, if I insist on expending what time I have on you, I rob myself of time with my loved ones. So if you must insist on taking without remorse, which is your nature. Then you do you, I will continue to rebuff you by any means and with every ounce of my being. Let this serve as notice, I choose to live in spite of your grasp. I know you will be at my side until the end, and that’s alright. I’m not going to feed you by getting angry, well staying angry I should say, I have better things to do.

Sincerely,
Me

Finding purpose with ALS.

My life is over; what will I/we do now? I’ll have to quit working and my body will fail me.

All of the above are initial thoughts when we receive the diagnosis of ALS. As we settle into our new existence with our failing body, we look to find purpose in this condition. Our families know their purpose, to help us. We on the other hand look within ourselves for this purpose, what can I do now?

Whatever you choose for you is right – for you, regardless of what anyone thinks. Personally I chose to use my voice and experience to create awareness. I have no desire to step out of my lane. I’m comfortable with making a fool of myself and sharing with the world. I’m not a trained writer, I simply empty my thoughts to stay sane.

This trip is but another way of getting out there, everyone we meet now know what ALS is.

A trip with a purpose!

J Reyes