The word “okay” is incredibly underrated.
Whenever I get a call or an email from someone newly diagnosed, I feel so privileged they have chosen to speak with me. To connect, to vent, to cry, to express anger, or to simply ask a few of the hundred questions we all have at the very beginning. And many times I discover they are helping me just as much as I am giving to them. We both cry and we both ask questions and we both express anger. It is one of my greatest joys to connect with people in this way.
A couple of months ago someone called, just weeks after being told they have Multiple Sclerosis. At first, all I could hear was the shock in her voice. The cold distant tone of a woman repeating back facts and figures, percentages and lists. The flat undeniable tone of a woman who has been inundated with information by doctors and experts and pamphlets and Google. I let her speak and I asked her questions and as we went, her tone remained. And then, just as we began to wrap up the call she mentioned a New Years Eve party at her house right before Covid and how happy she was that she got to experience such a fun event. As if it might have been her last. And then – through a series of coincidences – we realized we had met at that party, that I was there too. Her voice cracked and then it crumbled and emotion flooded as she told me she knew me. She knew me, oh my god she knew me and she remembered me and I was normal and I was okay. I was really okay.
She was going to be okay. She is very much okay.
These are the moments and the reasons I formed a support group and write this blog and tell everyone I know as much as possible about MS. There is great satisfaction and honor in helping someone assuredly say I am going to be okay.
And now I find myself in a totally new city and there are days when I feel like I am on the opposite end of the line. Needing someone to call to ask all of the big questions. It reminds me of the beginning. Finding infusion centers and hospitals and MS doctors and support and good intel and people that are like me and people that understand.
For now, I make lists. 1. Research MS doctors, 2. Research Texas health insurance, 3. Breathe, 4. Reach out to my support group members, 5. Get tours of infusion centers, 6. Relax, 7. Nap, 8. Research MS resources in my new city… and the list goes on until I am no longer back at the beginning.
I am grateful for the opportunity to be on the other end of the line. To feel it all again and to remind myself what it feels like for that person who has just found out, just been told, just started crying, just got angry, who just began mourning an old sense of self. I know this experience will help me become an even better listener the next time I get that call.
And while I work through my list and I wait for that line to ring, I am altogether, genuinely okay.