If I could implant an electronic ticker tape across my forehead, these are the words I’d string across that broad expanse. I should also add them to my email and text headers and footers. And perhaps to a billboard outside my house. You see, as a chronic illness-having person, I’ve learned that time with my peeps is so very precious. I wish I could express to each and every one of you just how much I love you and how very sorry I am that I haven’t been and can’t be more present.
In some ways, this isn’t new. I've always been late to the party. I could never be counted on to remember your birthday. I hate driving and I'm terrible at it anyway (always was, even BEFORE my neurologist told me I'd failed the Massachusetts driver's sobriety test on my completely sober but also very Long COVID-y brain) so I am not nor was I ever really anyone's top choice to serve as DD or on a shift at the wheel during a road trip.
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Now, with nothing but time to sit and think about what I've done with my life, I've come to realize that I haven't been the most reliable human for the other humans in my life. Sure, I’ve achieved new heights on the scale of Most Disappointing Humans since Long COVID, but I wasn’t winning any Most Reliable awards in the Before Times. I could have called people more, been there more, showed up more, been more supportive, been more attentive, been MORE. I could have been - and could still be - a much better friend than I've been, a better partner, a better daughter, better sister, better aunt, better cousin, better mentor, better teacher, better human.
Have I been absolutely no-good terrible? No. (Cue Ronnie and Ben doing Shannon of RHOC.) Have I been the best I could be? No. Could I be better? Absolutely, yes.
But while my brain has the stamina to think these things, I'm powerless to act. No juice in the batteries. Completely kaput. Nada. I’m buried alive, knowing there is so much I want to say and ask and learn and do and give and be but I’m screaming into the void of my own mind because my body won’t allow anything else.
Occasionally, I'll sense a flicker of light in the old noggin, a tease, making me think my physical health is showing signs of improvement so I might as well get cracking on improving my humanity by reaching out to the people in my life. Cautiously optimistic, I'll send a text or two. Strike up a conversation with some of my peeps. Propose an outing. Suggest a Zoom check in. Then, out of nowhere…
As if Emeril’s shouted it directly into my ear. I'm snapped back to reality and I realize don't have the strength for this. Nausea strikes again. Exhaustion so fierce my lips are shaking (yes, a new symptom - quivering lips - I really am becoming a true Victorian lady what with the general malaise and the vapors and the reliance on fainting couches and all). Yet I've postured as if I’m up to get down and so now I'm the flip flopping drama queen who can't keep her commitments (said nobody but me but you HAVE to be thinking it, no?).
So now I've got the interactions I just initiated to follow through on plus the growing list of calls, texts, DMs, email, and snail mail from the past four years that I still need to read and respond to. And my nausea is back and now I’ve got this quivering lips problem and my brain doesn’t work quite right and I’m exhausted all the time and what the hell have I gotten myself into.
And listen, I'm not complaining about people reaching out to me. I love it when you do that. It makes my day to know you’ve thought of me. Not long ago, a text from some friends who’d seen some art that made them think of me literally brought me to my knees with gratitude for their thoughtfulness. The last thing I expected was that I’d cross their minds while they were on the trip of a lifetime.
And the problem isn't one of too many people trying to reach me. It’s me. I’m the problem. I have neglected my local circle so considerably that the last time my husband went out of town, not one of the five people he'd asked to reach out and check on me while he was away did so.* The problem is one of I simply cannot respond. I can’t. It’s that simple.
It is simple and it is also very real. It is physical. Most days, my body and brain allow me a couple of thousand steps** and a couple of hours of clear-headed time if my other symptoms are mild enough that I can take the Adderall I’m prescribed to clear the fog.
What do I do with those units of productivity? Keep in mind they decrease exponentially if there are superfluous sounds, movements, and/or screens nearby. They include time to do my job, read a book and actually understand it (same goes for watching a show), do some laundry, chat with a friend, go to the doctor, go to therapy, volunteer, chillax with a loved one, make dinner, do the dishes, cut my toenails, water the plants (lol - people do that?), floss my teeth, cuddle with my boo, remember to take my meds, and do whatever else I care about or need to do that requires any iota of my noggin.
All of this to say, in case I crash again before I remember to tell you… I love you. And I'm sorry. I’m sorry I haven’t been around - mentally, emotionally, spiritually, or physically. I’m sorry I haven’t returned your calls. I’m sorry I haven’t replied to your kind letters and cards and packages. I’m sorry I haven’t responded to your messages. I’m sorry I’ve been so GONE.
I hope that despite my absence from your every day, somehow you know that you are on my mind and in my heart. I appreciate you. I am grateful for you. If I have mentored or taught you, I hope you know how much it has meant to me to do so, how much you have given me by including me in your journey. If you have ever laughed at or with me, thank you. I love making you laugh and I’ll take it however it comes. If you have ever rolled your eyes or raised your eyebrows at anything I’ve ever done or said, thank you. It brings me great joy to evoke that response in people. ;-)
I wish I could say these things and more in a one-on-one with you. I wish we could hang out more. We hang out in my mind all the time. I tell you I’m proud of you. I tell you I’m thankful you’re in my life. I tell you I want to know everything about what makes you tick. I tell you I love you. I tell you I’m sorry.
*I take responsibility for this. How many years can I expect people to continue reaching out when they often get no response from me or to hang around wondering if I'm going to actually show up when I say I will?
**That’ll get you a few round trips from bed to the toilet and then - dealer’s choice - either a shower or a walk to the coffee shop across the street.
Oof. You hit me in the feels, Emily. Sending you love, and having a great hang out with you in my mind!
I think this is one of the things that was hardest for me--how utterly unreliable I became, and sometimes still am. I was not a great wife, step-parent, colleague, friend, or family member. I lost time with loved ones that I will never get back. New teachers I was supposed to be mentoring did not get the support they deserved. My team shouldered much of my work and there is no doubt that it was an unfair burden to place on them. Likewise for my husband, who was left maintaining a life and a household meant to be shared between us. For a long time, I knew all of this emotionally but lacked the ability to express it, even to myself. So my apologies were late in coming and I fear that some people are lost to me forever. While this makes me sad, I don't blame them. Keep these posts coming, cousin. They are difficult for me to read, I think because they so echo my own lived experience and because they elicit the irrationality of survivor's guilt. At the same time, I look forward to reading them. Your words are helping people to understand the unimaginable and I thank you for it.