Connections
By: Jennifer Crow
Tags: Chronic Illness, Myasthenia Gravis, Health, Covid 19, Atlanta

Head laid back against the reclined chair, feet up, pillow, blanket, and earbuds set to relaxing music. To my left is an industrial strength infusion pole with my meds hanging like expensive ornaments. To my right, a tray holds crackers and cocoa, a treat on this cold December day. I’m in Atlanta at Emory University hospital receiving Rituxan, a monoclonal antibody that modifies the production of B-cells; cells that both protect and destroy, at least in my body that’s what happens. B-cells are meant to protect against infection yet when things go awry those same rescue cells interfere with muscle movement for myasthenics. Amongst other things, my treatment protocol includes these infusions every other month. An aggressive approach considering most patients are on six month schedules. I’m eighteen months into my Rituxan treatments, it has become mundane, routine, predictable.

Wake at 3:00 a.m., pull out of the driveway by 4:00 a.m., arrive in Atlanta around 9:00 a.m. (don’t forget the time change — we lose an hour!) infusions begin at 10:00 a.m., out by 1:00 p.m. for lunch. Not much has changed since I’ve been switched to rapid infusion. Not much of the routine, that is. Wheeled plexiglass partitions now separate patients, for our protection, really. Gone are the days of idle chatter between patients. Not that there was a lot in the “before times”, but there was enough. Enough to create solidarity. To feel connected to someone who knows just a smidgen more than your regular loves, what it means to be the patient in the chair, with the tubes, the toxic medicines, the devastating disease. Those brief moments of connection were always a personal highlight of my day-trip for treatment. But today, I look around, and there are fewer patients. Fewer nurses. Less talk. More space. Less connection.

The place has changed. I have changed. We have all changed.

Masks hide our smiles. The gentle knowing nod to the fragile patient across the way, no longer happens. We’ve become individuals wrapped in protection. Necessary. Absolutely necessary to protect us, the immunosuppressed, the immunocompromised, the cancer patient, the pre-existing conditions, the sick, the ill, yes… even the dying. We need and frankly deserve these protections.

Today I wonder, where and how are we getting our connections? Humans are social creatures after all. We take them in the small moments we have with our clinicians, our care team, our families, and sometimes friends. I used to look forward to these Atlanta infusions for those fleeting, yet special moments with other patients. Although it’s different, I’m still finding them here and there. The phlebotomist catches me up about the latest with her kids and grandkids, how Covid has affected her family, the grand baby she can’t visit. The way she asks how my kids are doing with school, friends, jobs, now that Covid affects everything and everyone. I treasure the extra moments with my clinician when he asks about the rural community I live in, which are his old stomping grounds. His delight when I say I think I’m ready for a light exercise program, the exchange of Christmas cookies for the office staff. More moments come when I chat with my nurse, “are those new glasses?”, “did you get your hair done?”, “are you the new one here, or am I the new one? — I only come every two months!” or they say, “you’re walking so well!”, “you’re looking so good!”, “nice to see you moving again!” And it is good. It feels good to find my seat. To walk to the snack center and grab my own goodies.

I’ve not needed long-term health interventions before. Not many people do. But what I’ve learned is that the longer I’m with a practice, the more they feel like a good friend. Someone you see occasionally, immediately reconnect with, and who cares deeply about your best outcomes.

It’s been about an hour and my infusion bag is quickly emptying, drip by drip. Before too long I’ll be finished, I’ll have my port de-accessed, the next appointment will be set for February, I’ll check out at the front, someone will compliment my glasses, and on the long elevator ride back to the car, Bruce and I will discuss lunch. Most days we find a stop several miles out of town, to get a jump ahead of afternoon traffic. Someday I hope to leave this office using nothing more than my own two feet. And when that happens I want to celebrate with something more than a quick stop for lunch. I want to use the strength these drugs have given me to explore Atlanta. To taste her foods, to learn her history, see her art, meet her people, and to celebrate nothing more than being alive with enough health to enjoy the special moments of life.

That will happen.

And when it does, it will be a glorious, COVID free day — a day we can all celebrate.