Staying positive with ALS, how is it possible?

Well it ain’t easy, yes it is possible but it takes work. There is no secret or blueprint on how to do it. Just as each of us pALS develop and progress differently, we each have to design and reformulate what drives us and what we choose to focus on emotionally.

Here are a few observations, these are my beliefs, so don’t flood me with negative comments.

Come to terms with it, dont confuse this with giving up. Whatever it takes and however long it takes. I believe in God, this is MY belief. I have never blamed my God for the diagnosis. God did not cause this, my body did. I hold on to my faith and believe I have lived a good and very blessed life. I am thankful for the life I have been gifted.

Surrender to the love, assistance and support of your loved ones. This is imperative, to take a load off your shoulders, respective to how will you physically cope. My heart goes out to those challenged by lacking or losing their support people. I have no answer for this, but it is a reality for many.

Find your new passion, as pALS, ALS forces us to plot a new course to our lives, dreams and passions. It is also important to allow yourself to mourne the life you had designed as your future; plans, goals and long term desires. This of course is a sliding scale as ones abilities shift and ALS progresses. For some it is so rapid all they can do is just choose to be present in the moment. In the end all we have are moments and memories.

For those that are parents, let your kids in. Let them be a part of your care, of course age appropriate. Let them receive your love and vice versa. Let them steal your wheelchair and assemble the X-Men, dont ask… just let them in. Kids are more resilient than we think.

Be an advocate, most importantly for yourself. Life is difficult, even more so with a terminal condition, healthcare is a nightmare to navigate. If possible advocate for your codition and for others, its fulfilling.

Lastly, chose to not let ALS be at the center of your existence, it wasn’t before. ALS is only one part of who you are. Dont get me wrong, it is not easy at all. Sometimes you have to allow yourself moments lo let your vulnerability through. You cant and should not be expected to be upbeat constantly. That would be exhausting, and I would want to know what you are on??

Just a few of my observations…
-Believe in something, have faith

-Surrender to love

-Define (redefine) your passion

-Fight, fight for yourself and others

-Don’t deny your humanity, vulnerability and emotions

Wishing you special and memorable moments…

TJ&O