I read a couple of interesting pieces today. In the first, Megan Klenke shares her honest thoughts about becoming chronically ill. She talks about being a dancer whose body betrayed her such that she cannot dance. As if this fundamental, existential betrayal weren’t enough, chronic illness has taken even more from her:
“Chronic illness has stolen my body, it has stolen my ability to think clearly, it has stolen my choices, it has stolen my relationships, it has stolen my freedom, it has stolen my safety, it has stolen my identity…what else is there to say?”
Megan Klenke, Why Being Honest Is Hard For Me, No End In Sight
In the second piece I read today, Jill Cornfield writes about the lessons learned by Chanel Reynolds and Liz Gendreau about ways to prepare for unexpected events like sudden death or disability. The combined message from these two pieces is that you never know how much time you have, and the unexpected is easier to deal with if you’re prepared.
What I mean by prepared is not the Zen koan-like saying to “Expect the Unexpected” – we all get blindsided by “unknown unknowns.” As Chanel and Liz explain, there are tangible things we can do to prepare for unexpected expenses, health problems, and even death, such as having an emergency fund, a will, an advanced medical directive (such as a living will), and a croak binder (we first encountered the term in a USAA Magazine article. Apparently it’s a commercially-available product, although you could also DIY it – for ideas, see this article).
After making a list of ways that I need to update my preparedness:
- update will/living will
- create a Croak Binder
- look into bundling insurance policies
I started thinking about another way that chronic illness/disability/death affects us – when someday becomes never. When you or a loved one become chronically ill/disabled, or a loved one dies, certain dreams that you hoped and planned to accomplish someday become things you will never do.
And I don’t want to debate with people who will argue that this is pessimistic and defeatist, and that “you can do anything if you put your mind to it” or “the only disability is your attitude.” No. We, in the wealthiest nations in the world, want to believe that anything is possible, and are often uncomfortable with the frank acknowledgment of limitations, but the harsh truth is that limitations exist. Acknowledging this doesn’t make me a pessimist; it makes me a realist. Disability does not mean we aren’t trying hard enough or don’t want it badly enough; disability literally means not having the capacity.
Some of us lose or never had the capacity to enact certain dreams. Megan had the dream of being a professional dancer, but she lost the capacity to do so. And having the dream without the capacity was too painful, so she eventually had to surrender the dream. [I assume.]
I had the dream of obtaining a PhD and helping the military develop leaders, but I lost the capacity to finish my studies and complete the degree. I have withdrawn from my degree program, but I am still struggling with surrendering the dream.
Even more starkly, when a loved one dies there are clearly dreams that will never be enacted – you will never take that trip together to Paris, or have that loved one at your wedding, etc.
But, I would suggest, once you have come to terms with these losses/limitations and realized that certain somedays have become nevers, you can lighten your load by getting rid of (at least some of) the things that you accumulated for someday.
Those hobby/craft supplies you were saving for someday when you would actually put them to use? If it’s been years and you’ve never used them/never finished the project, or you are no longer physically able to do the hobby/craft – let them go.
Those clothes you’ve had shoved in the back of a drawer or the closet because you’re going to lose the weight someday? If it’s been years, that’s probably not happening – give them away.
In my case, it was readily apparent that I was unable to maintain the large house we were living in, and unable to extend hospitality to others in the way we had planned. And I had to admit that “someday I’ll be healthy again and we can do this” had become increasingly unlikely. And so we sold our large house on acreage and moved to a much, much smaller house on a much, much smaller lot.
“In many ways, chronic illness/disability feels like the aging process was accelerated for me. I have the diminished capacities and the diminished prospects of someone twenty to thirty years older. I have fast-forwarded past my anticipated second career into retirement. Like someone decades older, I have downsized and moved to Florida. “
Crew Dog, One Sick Vet
No longer living for someday applies to our finances as well, in ways you may or may not expect. For example, if I lack the capacity to become a Doctor of Philosophy, do I really need to continue my memberships in various professional organizations? Or can I save money, time, and energy by discontinuing these memberships and no longer paying to attend professional conferences?
If we live in a much smaller house and my health limits interactions, can we get rid of some of the furniture we had for guests? Yes. And so we sold a bedroom set before we moved, and we recently sold a set of bunk beds we’d brought with us (after I finally accepted that we really don’t have room for it and probably don’t need it).
By accepting that someday means never for certain things, I am becoming able to get rid of things that are cluttering my house and my mind, and I am gaining freedom by shedding financial, emotional, and physical burdens.
Accepting one’s limitations means that, for some things, someday becomes never, but for other things someday becomes now. Do it now before you lose more capacity. And so I am working on scuba certifications that I didn’t make the time for before. I may or may not have the capacity to use these certifications to help others enjoy scuba when I am done, but I am enjoying the process of learning new things, improving my skills, and becoming a better diver. I may need to use a cart to haul my gear to the water, rather than carrying it, and I may need other aids as my capabilities diminish, but I am going to do what I can while I can.
Do it now because you’re not guaranteed tomorrow. And so I am passing family heirlooms on to the next generation now, before I am gone and cannot pass along the history and the heritage that goes along with the item. And I intend to scan the family photos and write down what I know about the people in them, so that that knowledge isn’t lost. After I’ve done that, I’ll offer the original photos to family members who might want them. And then I’ll no longer be responsible for caretaking them, and I won’t need space to store them.
I had not intended to shed possessions, responsibilities, or dreams at this point in my life – I thought I had much longer before I would need to do so. But there is peace and freedom to be found in surrendering to what is, rather than continuing to long for what cannot be.
However, grief is very much a part of this experience, and it is not linear and it does not follow a timeline. Grief is messy, and it may be expressed as anger, depression, pain, denial, regret, or many other feelings or behaviors. I continue to process my grief over the somedays that have become nevers – the dreams that I will never realize, the things that I will never do, the opportunities that I lack the capacity to pursue.
But when I stop fighting and accept what is, when I release my expectations, hopes, fears, and dreams, when I let go of the things I’ve been hauling around for someday or “used to be,” I find freedom. I find moments of peace and sometimes even joy.
So I’m trying to stop living for someday, and instead just live in the now.* For me, the important part is managing my expectations. If I let go of the dreams and ambitions I held, the expectations for how my life was going to be/supposed to be, I can appreciate that what I have is still pretty darn good.
[*Don’t get me wrong, as far as I know my conditions are chronic, not terminal, so I still have to be responsible with my money and plan for the long-term financially.]
Which reminds me: I’m not saying that having ambitions, goals, plans, or dreams is bad. I’m definitely not saying that these things are only for the abled. I guess what I *am* saying is that nearly all of us have things that we plan or hope to do someday. And those things may be inspirational and motivational. But sometimes waiting for someday interferes with the way we are living now, and then we are faced with a choice: do we keep pining for someday, or do we start living for today?
In my case, I find that I am mentally healthier when I acknowledge that certain things I had hoped and planned to do someday are no longer probable, and I adjust my expectations accordingly.
I may not be living the life I dreamed of, but I intend to live the life I have to the best of my abilities.