1. Don't complain. I get it complaining is supposed to help you "let it go" (blog coming on this tomorrow) because it doesn't actually. When you realize that complaining actually doesn't help you at all, in fact it makes a crummy situation feel even crummier. You have too much to be thankful for to ever complain. All of you do & yes that includes Steve & ALS patients.
2. When given a crappy situation make it an awesome situations. All of us are given situations and it's always our choices how to handle it. If an ALS patient can be given a TERMINAL illness and still make sure they stay happy and live full lives so can ALL OF YOU. You can, you just have to do it.
3. When someone tells you, "There's no solution," you make your own. ALS patients are faced with so many days and things that most find unsolvable, hence the no cure or treatment thing. However, every ALS patient I have come across finds their own solution. They find tricks to be able to communicate after they loose their voice, they find ways to get comfortable even when they are slowly loosing muscle control, having constant spasms, and excruciating pain, & they still find ways to fight despite their bodies giving up on them.
4. If someone tells you, "You are going to die & this is the sequence it is going to happen in," do NOT listen to them. Part of why Steve is still alive is that he is determined to live until he is done, not the way ALS says it will. He has outlived a lot of doctors expectations & constantly amazes people with his determination and fight. I can say the same for lots of other pALS out there.
5. Be nice. Seriously JUST BE NICE. You never know when your words could be the last things someone hears. I was lecturing Steve, the night before he coded the first time. They told me he probably wasn't going to make it. The thought that my last words to him were, "Gosh stop being so damn stubborn and do what we ask you to," devastated me. I was thankfully given another chance to tell steve how damn proud I am of him, and that I always want the best for him so sometimes I may have to be hard on him, but that it is only because I love him. The nice way to say what you have to say.
6. Be with your loved ones. Make the effort to see the ones you love, schedule visits, call, text, write a letter, Facebook; whatever way you reach out---talk to your loved ones, tell them you love them, & spend time with them. As much as you can. You never know when it could be their last day.
7. Take care of your head. Obviously not all ALS cases are trauma induced, but Steve's we believe is. Looking at athletes that obtained numerous head injuries and the high presence of motor neuron diseases, just seriously take care of your head.
8. Take care of yourself. Your health is much too valuable to take for granted. If you can avoid a health problem with a lifestyle choice---do it. There are some not given that choice. Let food be thy medicine and medicine be thy food.
9. Do a lot of awesome shit. Sorry no other way to say it. Go on adventures, go live your dreams, see the world, meet new people, go to that show, paint that painting, have that glass of wine with your girlfriends and have baggy eyes the next day. Live your life & live it full.
10. Your mind is a powerful tool. ALS patients can always let the grim facts of ALS get them down, but I can say I have spent time with a lot of pALS & I am impressed at their ability to just choose to be happy. I'm amazed at even when I see an ALS patient have a discouraged moment, it doesn't last long. They have the amazing ability to control their mind & it's a gift I think everyone needs to learn.
Basically to quote Steve Gleason, "Awesome ain't easy."
Basically to quote Steve Gleason, "Awesome ain't easy."
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