One of the things I’ve been reflecting on in the last few hours is gratitude. In this post, I’m going to do something I’ve never done before, something I don’t think many people get the opportunity to do. I am going to say Thank You.
I don’t mean this in any kind of morbid way or as a message that I’m giving in. Please don’t be concerned, though I realize writing this may worry some of you—I can’t win :-). What I say now is deeply important to me. I hope one day this post will be remembered by the people I love and who share in my journey.
I often look at the statistics of how many people read my blogs, but I don’t see who is reading them or the extent to which they are the people in my everyday life and battle. (I’m aware many of you have a huge backlog of my posts, so some will get to this in a few years :-)). In the grand scheme of things, this isn’t important. This post, however, is the one I want those who engage in my life to read, and I encourage you to share it with my friends, family, and support network to ensure they see it. I would really appreciate it.
The day may come when I can’t say it myself
I hope that day is a long, long way off, but it will come. It may creep up on me gradually or suddenly. I may find myself unable to express my thanks and gratitude for what people are doing to help me.
It’s already here to an extent. Let’s take my number one carer, who celebrates her 50th birthday later this week—my wife. She is simply a star, the brightest one in the galaxy. She cares for me and everyone around her so much, and I feel it. Yet, I’m often tired, frustrated, apathetic, angry, ratty, quick to accuse—you name it. I understand there are reasons for this—going from 100 to 1 is not easy, as everyone says, and I’m trying my best to adjust with no sleep—but those reasons aren’t acceptable. I don’t show my gratitude and deep thanks anywhere near enough (action item for myself!).
I want to thank her for everything she does for me and, more importantly, for what she will likely have to do in the future. It will probably be at a time when I’m unable to thank her myself—whether for physical, mental, or other reasons—and the thought that I won’t be able to say “Thank You” or show my gratitude in a physical way scares me. I may be too bitter, too unwell, not cognizant, or emotionally too angry and self-centered—I don’t understand. But right here, right now, I want to say, from the heart, “Thank you” for everything you’re going to do for me. I will always feel it, and I sincerely apologize if I don’t or can’t show it.
It’s broader
I imagine there will be many, many people who take part in helping me—medically, administratively, logistically, operationally, and financially (though I hope I’ve ensured the last part isn’t needed) and in ways I simply don’t understand.
Some of these people I already know—my kids, my close family, my friends, my doctors, and other health professionals. Some of you I haven’t yet met (“Hi, by the way”). Some of you (including, for example, my appointed Powers of Attorney, my accountant, or any full-time or part-time carer I may end up having) will go above and beyond—way, way beyond—and I may not be able to tell you how grateful I am. Well… I am!
I’m a bit of a control freak, and letting go of the reins is tough, but it’s happening. To those enduring my struggles as I manage this transition—thank you as well.
None of this lets me off the hook from being grateful at the time, but it’s just in case I am unable to show it.
Optimism
Seeing that people care is hugely important to me, and every comment I receive (usually quietly) helps reinforce my will to fight on. I need you to understand I am grateful.
It’s a strange journey. At various points in the day—when I’m in a discussion, on a call, or in an intense moment—I don’t feel PSP, and some people don’t see it either, and I can sense them wondering what all the fuss is about. Then I fall, stumble, my speech falters, my eyes hurt, and I see it progressing.
Oddly, Apple recently gave me a warning that led me to look at health data on my phone, and the truth is clear to see. I never realized the data existed, but it shows the progression in a way I sometimes struggle to articulate verbally. There has been a clear change in my abilities to walk and maintain my balance, which I realized and have tried to articulate. I’ve been fighting to control it, for example, by starting to use a walker, but it’s often harder to see in black and white.
See, for example, these screenshots.
I’m going to fight this, especially now that I realize it’s being measured (which is a whole different argument in itself, and I’m seriously considering turning off the feature), but the time may come when I simply can’t respond to you the way I want to.
Gratitude
So, my message is clear and, I hope, can be preserved for many, many years. First, thank you to those who help me day by day. I hope I show that appreciation, but if I don’t, I apologize.
To those who will help me in the future—whether I know of you now or not—thank you. You’re likely doing something unpleasant and thankless. It may involve looking after me while trying to maintain my dignity or filing paperwork with the relevant authority. There will be times when it’s really hard on your stamina and patience, and in those moments, I want you to understand that I thank you from my currently fully cognizant self. I appreciate it sincerely and deeply.
Back to my wife—Happy Birthday, honey, later this week, and thank you. I manage to apologize about a hundred times a day for the way I’m acting. I understand I shouldn’t put myself in that situation in the first place. I’m struggling at times, and to you, I show the real pain and frustration it’s causing me, which I hide from others. Thank you for everything to date, today, and into the future, especially when I may no longer be able to express it personally.
Please bookmark this post, and hopefully (please, God, let it be so), I’ll always be able to show my gratitude, whether verbally or not. I hope it won’t be needed for a long, long time, but this is how I feel at this moment, and I need to say it.
Thank you!
