For good or bad, I have decided to be relatively open and transparent about my journey. The blogging has certainly helped me selfishly and at times been hard for others. Overall, I think there’s a net benefit to it, for me and others. I think it opens a window for people with a condition like PD/PSP to see how others are traversing the challenges, and it gives a glimpse for others into what is actually a very different journey than I expected.
What do I mean? I always had the expectation that if you were diagnosed with a terminal (and unpleasant) condition, it would be all gloom and doom—and that’s not the case.
Don’t get me wrong—it is terrible no doubt – especially for those around you. I certainly wouldn’t choose it, but life continues, and for a lot of it, “life goes on.” People adjust. Plus…It’s certainly not dull. One of the many things that changes that really impacts you, though, is how people interact with you, and it’s something they clearly struggle with… and that’s okay! I feel the need to address it head-on.
It’s a surreal situation—like being in a weird episode of House for those who know it. I’ve graduated, seemingly, from Parkinson’s to some form of PSP, which has major similarities but some significant differences. Now that I’m in this new class, I intend to do the most I can to maximize my quality of life, the welfare of my family, and my contribution to society.
I won’t sugarcoat the situation. I pray for a miracle and will continue to ask you to, but the outlook is extremely scary, and a lot of people simply don’t know how to deal with it. I hear this from other patients too—and that’s okay! Virtually none of us are qualified for this.
Some people are clearly avoiding the discussion with me; some are open that they don’t know what to say—and that’s okay! The truth is, if the positions were reversed, I’m not sure I’d know what to say either. I’d probably try to avoid discussing it and opt for doing something practical to help. When I visit someone sick or mourning a loss, I’ve always struggled with words… but sitting on the other side has taught me that it’s okay!
I’m not writing this with a magic answer—what works for me may not work for others—but just a few thoughts for people who care about how my family and I are doing. Many have found ways to connect with me that are touching and meaningful, small seemingly minor things that make a huge difference. Some offer practical help, some prayers, some insight from their own experiences, some just their love and a note to say they’re thinking of us (especially my family). I can say with absolute certainty it’s not the size or scale of the gesture—it’s knowing you’re there, and it really helps, each in their own way. I don’t need or want extravagant gestures (or things clearly for someone else’s benefit).
Please just be normal. I know it’s not a normal situation, and I don’t expect everyone I speak to have a PhD in advanced conversations with terminally ill patients—anyone who’s studied that is probably overqualified. I’m still just as interested, maybe more, in what’s going on with you and your world. Mine’s a little over-discussed and surreal, so I’m happy to talk about other things. It’s also okay to say the wrong thing or not know what to say. Please don’t ignore me because you’re unsure. Please don’t think the gravity of my situation means your struggles are not valued…I care for you as much as I did yesterday. Truth is I wouldn’t trade my situation with anyone so I still remain hugely blessed.
A few people have stopped me with awesome ideas I’ve actually embraced—a learning session, a walking rota, a table tennis idea, a book recommendation, a relevant article. But know I’m deluged with suggestions, so don’t be too offended if I don’t take yours up right away.
I will, however, share my pet peeves, mostly around what I call the “denial” or “I know best” approach—things like “it could be worse,” “just be positive,” “you look amazing,” “any of us could die in a car crash,” “it’s probably not PSP anyway,” “statistics are BS,” “this is what you have to do,” or “I’ve decided to do X.” These may be true or kind and generous, but they don’t help me in any way, shape, or form—so I’d prefer they stay in your drawer of items not to use with me.
I’m starting to see a therapist this week because of the enormity of this situation. I don’t expect my friends to be qualified therapists. To be honest, I need my friends now as friends, as hard as it is for me and them. I need to live, love, learn, listen.
The reality isn’t great—change is happening at a dramatic scale and speed, and I’m acutely aware that at some point things will get worse. I hope it’s years away, and I pray for that (and appreciate your prayers too), but denying the situation doesn’t help me. I need to steel myself for that time and make the most of the years before—for this, I need my friends.
Many of you reading this are going through similar circumstances or are loved ones, friends, or family of someone who will. I hope this perspective helps, but please remember it’s not a playbook—it’s just how I see things.
