During the past year, I have been spending more time at home like many of you. Before COVID, I always kidded around, saying I was so busy with lupus stuff; I would just visit my house and my husband. I can hardly remember being at home during the weekends or at night. I would be traveling the state of Ohio, working alongside the LFA Chapter staff and its volunteers doing education programs and fundraising events.
At first, this newfound time just had me working from home and pivoting many programs and events. I was scrambling to invent a new us at the LFA Chapter to ensure that all those we serve for lupus had their needs met. I honestly believe that we did the best we could with the minimal resources we had with the help of this dynamic and passionate staff. I must shout out to them and say thank you.
I still need to pay the premium on my high-mileage vehicle that once escorted me across the state. The car dealer will be shocked when he says how under-mileage my leased vehicle is. I am not complaining about my gas bill either.
Still, I find myself incredibly lonely and disconnected from the lupus community that took us years to build. Yes, I can communicate with many of you on the phone, by email, via Zoom meetings, Facebook, Twitter, Instagram, LinkedIn, and mail. Still, it is not the same for me.
The reality is that I am holding onto a lot of stuff. I feel like I am dragging it along with every step I take. It is making me miserable. Why am I holding onto it?
There is a lot of stuff in the world. We all have it. Stuff is different for everyone. I have tons of stuff. Some stuff is ok. Other stuff is pulling me down and making me sad and depressed.
In case you have not figured it out yet, the stuff I am talking about now is the physical absence of you. I am missing you and worrying about you and how you are all doing in this crazy COVID world. I need the physical warmth of your presence and the radiance of your smiles or tears.
I am not willing to let go of our wonderful lupus community here in Ohio. So, I will just have to figure out a more creative and innovative way to keep you in my world. You have my commitment to honor our war on lupus, and I love all of you.
Change is coming; I do not yet know what it is. I am clinging to all things lupus and will pray that we can all hang onto our lupus world together.
Some stuff is just worth hanging onto.