Living with ALS is freaking hard! It a never ending downhill slide. Only without the laughing and grass stains on the knees of your jeans. It is a life of ever increasing demand on the body and soul.
Still, until our last breath we must live on. I know that is what I plan to do. I cannot do it alone. I require almost constant assistance with everything. As my condition deteriorates, I become more and more reliant on others . Eating, bathing, brushing my teeth , moving around , wiping my ass! All things we have taken for granted as doing for ourselves.
The key to overcoming these obstacles is teamwork. Teamwork between me and my caregivers. Between me and my family. Me and my care team. It’s a pretty big partnership, as you can see. You would think it would be a no brainer. You would be surprised at the terrible stories I hear about because the team is not working together.
Obviously, going by the examples I’ve given, there is a fair amount of humility that is required. Unfortunately, there are many not willing to cast aside pride and accept the role they now must play. It’s completely understandable. No one wants to feel helpless or that they are a burden for others to bear. In my opinion, though, we have to be able to let our guard down and accept that we are losing the abilities we are accustomed to having. We shouldn’t view it as being weak for giving in to ALS but as adapting and overcoming all that is thrown our way.
Once we do that, we become greater teammates. We are more accepting of the help we need and in turn we turn up the volume of our quality of life. Isn’t that really the most important thing.? I mean ALS is already taking away the quantity ! Men… I think we are probably most guilty of being a bad team member. I can already hear the ladies! Hey, some of y’all are right there with us. There is a lot of stubbornness happening. I don’t want anyone feeding me. I don’t like the way you do this or that. I don’t like my breathing mask. I’ve heard all of these things. I will be frank with you all. If someone is being difficult like that or trying to be “tough “, what comes to my mind is who do you really think you are impressing? If anything, the way I see it, it is just making an already difficult situation even harder. That means that not only you suffer , but your team suffers.
I don’t know about you all, but I don’t want to suffer any more than I have to. And I sure as hell don’t want to make things harder on the ones trying to care for me! I am far from a perfect teammate, but it is something I strive to get better at. I also believe that our caregiver teammates will be better if we are more receptive to their efforts. Included with that, we must also be encouraging and express our appreciation often.