You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited?
Today we take a break from Q’s and their corresponding A’s for a special guest blog post from my thoughtful friend, Drew Dotson. You might remember Drew as the woman who teaches improv classes and helped me see that some of the same skills and perspectives that can be used in improv theater can also be used with individuals who have dementia.
She was also one of my cheerleaders in the early stages of this blog when I was wondering if anyone would even be interested in reading what I had to say. I was surprised when she could relate to some of my blog posts on the basis of her own diagnosis, which is very different from Alzheimer’s and related dementias.
You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40 years. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited? How do you appreciate what you’ve got right in front of you when (as Drew puts it) it’s a one-way street heading in the less-than-fortunate direction?
So here is the adorable and incredibly insightful Drew on her thoughts on living in the moment without fear of the future….
I was 8 years old. I went to the doctor for a routine appointment, and I left there a changed person. I guess, by most standards, having cystic fibrosis isn’t routine, but this appointment wasn’t out of the ordinary. CF is a genetic disease primarily affecting the lungs and digestive system due to an excess of thick mucus. I knew I had CF, did breathing treatments every day, took pills to aid in digestion, etc. However, I didn’t realize that CF was anything more than a part of my day-to-day routine.
Then, as my mom stood at the front desk to schedule my next appointment, I browsed the bulletin boards hanging in the clinic. I glanced at a feel-good article about a man who had run a long-distance race, which was “remarkable considering he was 31 years old, which is beyond the life expectancy for someone with cystic fibrosis.” I froze. I reread the line: “beyond the life expectancy for someone with cystic fibrosis.” I began to process. Beyond the life expectancy? At 31 years old? But 31 is so young. And, if 31 is beyond the life expectancy, what is the life expectancy?
Sometimes, in our lives, it can be difficult to pinpoint the exact moment when things change. Some changes happen gradually and, before you know it, things are different. Other times, there is a specific event – a diagnosis, an important loss, surprising news – when you can say, in that moment, “This changes everything.”
Having simply considered CF to be something I handled every day, learning its fatality was heartbreaking. I felt so sad. I felt so hopeless. The third grade should be a happy, carefree time, with homework being the only thing to slow a child down. But I’d learned devastating news that would impact the rest of my life. There was no turning back; there was no undoing it.
From this distinct moment on, I began living a life centered on fear. It may not have always shown outwardly, but it was always there, lingering. I remember crying a lot, particularly at nights, knowing that I would never get to grow old. I had a lot of career aspirations, like most kids, but the future suddenly became a source of anxiety. I should have been looking forward to things, but instead began living with an awful feeling of dread.
This future was always weighing heavily on my heart. The fact of the matter is that CF is progressive. CF is irreversible. CF is fatal. Knowing this information, it’s unrealistic to think, ‘Well, maybe things will get better!’ As blunt as it sounds, it’s a one-way street heading in the less-than-fortunate direction. There may be medical advancements – maybe even a cure one day – but those are the maybes; they aren’t the current reality.
Growing older was always a struggle for me because it brought me closer and closer to the inevitable. I realized I was more afraid of dying than I was afraid of not living. Yes, I will repeat that. I was more afraid to die than to not live. I was more afraid of the time I wouldn’t have than failing to use the time I did have. I was concerned about being robbed of life instead of appreciating the opportunities right before me.
Yes, CF is progressive. It is irreversible. It is fatal. I couldn’t change any of these things, but I could work to change my perspective. If I focused on the darkest parts – the struggle, the decline, the end – I might miss the sources of light – feeling loved, sharing a laugh, experiencing joy. Although the future carried with it a lot of uncertainty, I could no longer allow myself to overlook the precious moment that is today.
This wasn’t easy. It wasn’t like, ‘Okay, starting tomorrow, I’m going to be grateful. Done.’ It has been a process, and it will continue to be. Each day is different. On days when CF is front and center – like when I’m sick, when I see doctor after doctor, etc. – it can be especially challenging. However, I realized that the end could truly only interfere with the now if I let it. The present is this moment alone. If I can be in a moment without spiraling into thoughts of what used to be or what will come, I can find peace.
Although dementia and CF are not scientifically similar, there are many parallels. We have unpredictable lives due to our conditions. We know we can’t undo the damage that has already been done, but we can hope that things progress slowly and that we’re one of the best-case scenarios. Likewise, we longingly wish for a cure, knowing that we may not benefit from it, but maybe, one day, nobody will go through this.
In Dementialand and CFland alike, the future is a source of anxiety. While we don’t know the exact timeline, we know that there will be a decline. We redefine what “normal” means based on the current situation. We reminisce about how things used to be, and we worry about what things will come to be. The progression, for the most part, is beyond our control. However, we can do our best to keep “the end” from completely overshadowing the beauty in “the now.”
It can be hard to maintain a positive perspective when dealing with so much uncertainty. It takes conscious work, but it can be done. With so many factors beyond our control, the best way we can take charge is by being present. Imagine seeing your loved one with dementia smile and feeling joy rush into your heart. It may not be the smile it used to be. You may have fears of that smile going away. But that smile is still a smile, and it is joyous. When those moments of anxiety begin to creep in, remember that the feelings are only there because you care so deeply about someone. If that thought can be cycled back into something positive – love for someone – then you can resume your time in “the now.”
We may not be able to change the prognosis, but we can keep our focus on the present. By honing in on moments of delight, we can continue to live in the light.