This is a question I’m sure many people ask themselves about their eventual years of aging. I remember thinking about it conceptually many years ago and when I was diagnosed with PD. In the last few weeks, it has become a much more real discussion.
The macho answer is to say “No.” Probably the person of 100% saint level faith would also say “No.” The answer I’d imagine most of us mere mortals give is probably “Yes.”
In my case, it’s both “Yes” and “No”—a bit of a mix. In fact, it’s a rollercoaster that veers between different feelings.
Faith-Based Logic
Since I was 11 years old, I’ve held a deep belief in God. As a result, one major part of me is comforted by three things: any challenge I’ve been thrown is something I believe I can cope with and even ace, those challenges are given to me for a purpose, and there is a hereafter. I do believe this, but I’ll be truthful—it doesn’t quash all the fear. Many would disagree with me (and that’s their right), but for me, this is the logical side of my brain.
The Emotional Fears
The emotional side of my brain harbors many fears: the fear of the destruction PSP (Progressive Supranuclear Palsy, a rare neurodegenerative disease) causes and the pain and discomfort that could come with it, the fear of losing control over my own life (or at least the perceived feeling of control), the fear of the indignity of the illness, the fear for my family of having their lives disrupted by their need to care for me, and the fear of their ability to cope afterward. I can’t pretend not to be incredibly scared of what is to come – I guess it is completely natural. The good news is sadly others get through it.
The Tonic I Needed
Thankfully, I recently heard two accounts of PSP patients who, though seriously impacted by physical conditions, seem to have emerged with their dignity intact and cognition at least largely preserved. As I mentioned to a few people, one person replied to a post I wrote on a topic and said:
“I am a stranger to you, living on the other side of the world, reaching out to you with all the loving kindness and spiritual support I can send your way. I’m sharing your story with my children and husband, who helped me care for our friend Beth. That was the first time I had heard of PSP. And although it ravaged her body, it did not change HER. Her mind, humor, and raw courage blessed each of us. I am praying for you.”
As if by a ‘miracle’ I was looking for an advisor for something and contacted someone based on a recommendation. Her father has PSP and has made it 11 years so far.
This reply and story above is as I wrote at the time what I most needed to hear—that a person can pull through with their dignity and heart still shining. Stats don’t matter. If this person felt this about her friend, then I can do it.
So Am I Scared?
I’d love to have a faith so deep and pure that I could pass through this period without a fear in the world. I’m starting to work on myself to deepen this muscle, but I think fear is natural, and in that respect, I’m not abnormal.
Time… as they say, the clock is ticking, and I have a lot I want to accomplish and things I want to enjoy, especially with my wife and kids. So, staying away from stress, getting sleep, and preserving my strength are key.
I have made huge progress with sorting things out for my family and in starting to wind back the stress. Now I can focus a little more on Quality of Life. I aim to live and enjoy the times I have – not be weighed down by fears – but I can’t pretend they are not there.
Where Is Positive Attitude in All of This?
I have it in buckets and am energized for the literal fight of a lifetime. My family and friends are behind me. Can you believe that 13 friends even signed up for a “Walk with Ben” rota to do a 5 a.m. walk with me in the mornings? More than that, I see a purpose in all of this that’s starting to drive me—to raise awareness of PSP at home and abroad and to spend time with my family and loved ones (and make sure they are ok).
So…am I scared? Yes but not really, and I’m up for the fight!!!
