I think one of the most challenging things is to stay the course, and never veer off the path.
I say this first — because this past week has been a beast for me. Heat, and M.S. and work, and fatigue and … well, just about everything. I felt like my spinning top was beginning to wobble, and I just couldn’t right it. Burger here, candy there, not enough exercise, not enough water. I couldn’t pull myself back on track.
And I say it secondly, because last night my phone rang as John and I drove home. Luckily, we were at the gas station (it’s not easy to answer the phone while driving in the Jeep with no roof or doors — just very loud). And I answered, and on the other end of the receiver, my friend just began unloading a little bit of her soul. And all the things I remembered going through at the beginning of M.S. came back to me, and i heard myself in her words, in her fears, in her anger.
When I was diagnosed — which feels a little like yesterday, and a little like a lifetime ago — I thought nothing was going to change. I really did. I believed that. Deep in my soul, in the depths of my bones. I was very, very wrong.
But I had to walk that road. And it was a challenging, difficult road. I was angry for a long time. I felt trapped. Everything felt hopeless. I was scared. Terrified of the disease, terrified of the treatments. Hopeless and helpless. I couldn’t even determine what my path was, since things were constantly changing & my body was letting me down in different ways nearly every day.
And even the things I thought I knew — they were hard to remember in the anger and the pain and the fear.
It’s still hard. This week was a testament to that. But it’s not as hard as it used to be. It’s not Lydia-hard.
I think it might be Lydia-hard for my friend. And my heart breaks thinking about it. I want to say the right things, I struggle to remember what I wanted — needed – to hear back then. That it would all be okay? …. Will it? That the medicine will fix it …. Will it? I don’t want to make promises that I can’t be sure will be kept. I don’t want to reassure her with empty words.
I didn’t have anyone at the beginning who really knew. I mean, John understood. He understood having an incurable disease, he understood hospitals, and tests, and doctors and medicines. He understood how much it takes out of you — the worry, the anxiety, the fatigue. But he didn’t understand how my body was invisibly breaking down. I want to reassure her, because I know what it feels like to look totally normal on the outside, but to be feeling horrific with no visible symptoms. To have people dismiss something because there’s no physical evidence.
I want to be there — let her know that it will get better. But when people said that to me three years ago, it made me angry. How could they know? They didn’t understand. Their doctor wasn’t saying they were a tough case. I want her to know that there are people in her corner, people who will catch her when she falls. But all those words from people made me so angry.
Is it better because I have the same disease? … Maybe …. I don’t know.
What it made me think about last night, as I housed my third Wayback burger this week (yo, that Philly Burger is out of control delicious!) was that i needed to give myself a break. I needed to take a deep breath, shake off this week, drink some water, get some sleep and get up in the morning and start again.
So that’s what I did.
And I rode my bicycle for an hour. And I had a green smoothie. And I feel slightly more centered. And slightly less angsty. And I know that if I just focus, I’ll be okay. And hopefully, so will my friend.