Spoons & Support
I was scrolling through LinkedIn (I’m not looking for a job, there are just some really good articles in there that I like reading on various interests like higher education, philanthropy, community engagement, etc.) and someone who works with Employee Resources Groups at Putnam, who I was often in contact with while in my previous job, posted about an event. In looking through the details of the event, they mentioned an essay by Christine Miserandino called “The Spoon Theory”. Christine suffers from Lupus. However, the Spoon Theory relates to all those living with invisible illnesses (including epilepsy). It amazed me that this essay is apparently very widely known and through all of my awareness advocacy, I’m so late to the game in reading it.
The point of sharing that is that if you know me, I would like you to read the essay. Why? There have been so many times where I’ve said yes to doing something and have had to cancel last second: Birthday parties. Dinners. Concerts. Runs with friends. Backing out on favors. Interviews when I was searching for jobs last winter. Even weddings! When people bring it up like I’ve done something wrong or they’re disappointed in me, specifically friends and/or the people who know me best who I think would understand, it triggers a lot of frustration even if they think they’re just joking around. It’s something that, while I know people don’t understand my condition, in the back of my mind I still assume they at least know I have something that any given time drains me of energy …but to no avail - No one truly understands until they have no spoons.
So why not just say “maybe” when I’m asked to attend or do things? Yes. I try to do that as often as possible. However, most of the time I want people to know I’m a dependable and motivated person and that I really DO want to be celebrating their wedding, or their birthday, or just go out with friends for drinks, etc.
So doesn’t running take away spoons, Kathleen? Good question. Provided I make sure I do it in the morning, usually not. It actually helps me gain them for the day. On the other hand, there are the mornings I’ll work out and it’ll take them all away in one swoop and there are the mornings that I wake up and as soon as I open my eyes I have no spoons to begin with. Why is that the case? I have no clue. It’s just the way it works.
It has been so hard to convey to people, even those that are the closest to me, that I have no control over this but yet, I know what I need to do to conserve energy so that I’m able to live my life tomorrow. This essay just made me glad that I could share it with you reading this in the hopes maybe you’ll read the essay and then have a better understanding of what those with illnesses and disabilities go through. It also completely explains why my tolerance for other people’s unneeded stress is so low. I don’t have the energy or ‘spoons’ to waste on it.
After reading this essay, I think it was a sign that as I scrolled through Facebook a few hours later, I saw that New England’s chapter of the Epilepsy Foundation posted that there was a support group for adults with Epilepsy being held at MGH tonight called “Epilepsy Strategies: From Diagnosis to Acceptance and Disclosure”. I’ve tried going to a support group before. It was about 5 and a half years ago, a few years after I was diagnosed, and my anxiety was at its highest. I knew I needed something. However, the group wasn’t well run and it was older adults drinking coffee, eating homemade baked goods, and talking about their kids who have Epilepsy and their soccer games. I have higher hopes for this group especially given it’s geared toward adults with the illness. I’m not looking to talk about my pains and sorrows, but given the name of group, it would be interesting, and I think comforting, to know what others like me go through. Within diagnosis, acceptance, and disclosure, I’m pretty sure I fall within the disclosure category. I think I have been since November Project came into my life, but I know there’s still more I could do or say, and more I could know about others with Epilepsy. The only other people I know with Epilepsy are the ones I’ve met through the Foundation’s Athlete’s vs. Epilepsy. While I am so grateful to have met those people, we’re dispersed across the country and aside from one person, I didn’t stay in touch with the other 10 or so people that I ran with both times I ran for the Foundation. Not to mention that while we’re with each other we’re about to run 26.2 miles and I might just be talking for myself, but I don’t think any of us are interested in talking about the support we need regarding our condition when we’re trying to amp up for a marathon.
Speaking of running 26.2 miles - I’m doing that again in a month. I’m shooting for 16.5 - 17 miles this weekend. With the exception of last weekend’s long run, they’ve been going really well. Here’s hoping that continues! :)
“Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted ‘spoons’ and I chose to spend this time with you.”