Spoons & Support
I was scrolling through LinkedIn (Iām 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 calledĀ āThe Spoon Theoryā. Christine suffers from Lupus. However, the Spoon Theory relates to all those living with invisible illnesses (including epilepsy). Ā It amazed me that this essay is apparently very widely known and through all of my awareness advocacy, Iām so late to the game in reading it.Ā
The point of sharing that is that if you know me, I would like you to read the essay. Why? There have been soĀ many times where Iāve 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 Iāve done something wrong or theyāre 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 theyāre just joking around. Itās something that, while I know people donāt 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 ā¦but to no avail - No one truly understands until they have no spoons. Ā
So why not just say āmaybeā when Iām 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 Iām 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.Ā
So doesnāt 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 Iāll work out and itāll 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. Itās just the way it works.Ā
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 Iām 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 youāll 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 peopleās unneeded stress is so low. I donāt have the energy or āspoonsā 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 Englandās chapter of the Epilepsy Foundation posted that there was a support group for adults with Epilepsy being held at MGH tonight called āEpilepsy Strategies: From Diagnosis to Acceptance and Disclosureā. Iāve 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. Ā I knew I needed something. However, the group wasnāt 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 itās geared toward adults with the illness. Iām 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, Iām pretty sure I fall within the disclosure category. I think I have been since November Project came into my life, but I know thereās 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 Iāve met through the Foundationās Athleteās vs. Epilepsy. While I am so grateful to have met those people, weāre dispersed across the country and aside from one person, I didnāt 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 weāre with each other weāre about to run 26.2 miles and I might just be talking for myself, but I donāt think any of us are interested in talking about the support we need regarding our condition when weāre trying to amp up for a marathon.
Speaking of running 26.2 miles - Iām doing that again in a month. Iām shooting for 16.5 - 17 miles this weekend. With the exception of last weekendās long run, theyāve been going really well. Ā Hereās hoping that continues! :)Ā
āDonāt 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 donāt have room for wasted time, or wasted āspoonsā and I chose to spend this time with you.ā













