I don’t wanna!

What’s the point!

I can’t do anything anymore!

How many of us with ALS have said these words, I know I have. It’s normal and healthy, once in a while. Yes, I know, there are many who require help moving on from these states of mind, I have; perfectly normal also.

So you have ALS, life just got exponentially difficult, it sucks! Is this an excuse to shortchange yourself and your family from making more memories. Should your family endure isolation and grow resentful, because “you just can’t”? Because, well “what’s the point”?

Hmm’, NO!

So you can’t do many physical activities, the ones the entire family used to enjoy. I love camping, guess what, I can’t set up a camp site anymore…but my family can, and they want to. Why because they want to spend time with me, also, they know I miss it.

Our families want to spend time with us, regardless of the logistical effort required. We may not participate in all the activities we used to, but we can relish the joy, smiles and love our families express as they are with us. Even if we are on the perriffery, there is joy in witnessing others “joy”.

I know full well not everyone can break away for many reasons, most of all financial. If so, try and find a way to continue enjoying each other and company. ALS is hard enough already, why feed it your joy.

So consider that outing, vacation or road trip, and make moments; they are the building blocks of memories. If not an outing, sit outside and enjoy a glass of ice tea, or a short walk through the neighborhood.


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