In Conversation: My Parent’s Perspective on NMOSD

What were your thoughts when I first started having symptoms?

DAD: We knew there was something going on with you. We went through all the right channels, but we didn’t get a lot of answers, and the stuff that we did get from the normal chain of doctors was everything from “growing pains” to “we don’t know what it is.” Trying to find someone who would even take your case was frustrating.

What were your thoughts once I got diagnosed? Were you nervous, once we actually had a “word” for what was happening?

DAD: I was riding high on, you know, your spinal tap came back and you didn’t have MS (Multiple Sclerosis) but then they’re like, “Hey, she does have this thing.” And then, the more we looked at it, it was like, oh wow, this is not great. When the Make-A-Wish Foundation came to talk to us, it really kinda hit home for me. I understood then that death was possible.

When did the Make-A-Wish organization approach you guys?

DAD: You were in the hospital. We had already been there, I don’t know, probably ten days. Things weren’t going well. It was probably bad timing for them to do that, it was just a lot to process.

And what are your thoughts now, on where I’m at?

DAD: I think once we got you on your treatment, and we found the right cadence for you, you have enjoyed a period of great stability. I think the first time we went to camp with SRNA, and I saw a lot of kids who were severely impacted, and I was mostly just grateful at that point. I was hurt for you, that you had lost sight, that you had chronic pain issues, and the things that you live with every day, but I was grateful that that’s kinda where it stopped, for you, progression-wise.

How about you, Mom? How did you feel before I got diagnosed?

MOM: I was really stressed about it all. I was typing in your symptoms on the computer, coming up with my own diseases for you. Because I knew something was up, and was so frustrated with the doctors. We went to all the ones at the local practice and gastrointestinal doctors.

DAD: There was a lot that we didn’t know about the medical system. We thought one doctor would be as good as another. But that’s really not the case.

MOM: I was dealing with doctors that were not nice. To the point where they were treating me like I was crazy. That was really, really hard because I knew absolutely, 100% in my heart and mind that there was something wrong, but they acted like I was nuts.

When I actually had a name to it, what were your thoughts?

MOM: It sounds really sad to say this, but there was relief in knowing we could finally be taken seriously and we’d finally get some people to help us. People were interested because it was rare. Relief, but so much sadness too. When they told us your diagnosis, in that room, and you were sitting outside in the hallway, that was awful. It was like an out-of-body experience. I remember thinking, “This is not really happening.” It was awful. And to go home, to google all the stuff, and find out the outcomes of things because even the neurologist didn’t know much about it. We had to look up all the stuff ourselves. I’m just glad he knew to send your test away to Mayo Clinic. Only a few years before you got diagnosed was when they discovered that antibody.

What are your thoughts about now? How do you feel about it all?

MOM: As your dad said, I still feel frustrated about the things you have to go through, pain, all the eye stuff, even when you hit the curb with the right side of the car, and you called me crying, upset that being blind in your right eye can still undermine you. I feel bad that that’s still happening. But on the other hand, I am really grateful that there was a halt in the progression, such a day-and-night halt.

I can survive the minor inconveniences that come with being blind.

MOM: You’re doing great. So, how do I feel now? I feel like we’re one of the lucky ones.

After I got sick, what became your top priority? What were the things that mattered before, and what were the things that mattered then?

MOM: 100% what changed for us was quality time with family. The Make-A-Wish trip, which was awkward to accept, and to receive, because it really cemented in our minds that you were really ill, was also a promise of family time. Right then we decided it doesn’t matter the cost, we were going to have good, quality family time and vacation from there on out. So that changed. We were determined to take vacations.

How did you guys navigate dealing with hospital bills, but also prioritizing vacations and time together?

DAD: Well, we really had to change our mindset. When you’ve got a chronic illness, you always have medical bills. I could pay them all off, then next month, still have medical bills. So, when it’s beyond what you can reasonably afford, you have to get to a point where you say “I can give you what I can give you.” In the beginning, it was not uncommon for me to get bills from ten different places: specialists, neurologists, the ophthalmologist. Just keeping the insurance sorted out and the billing sorted out is super frustrating. There’s a lot of emotion attached to it too. In the beginning, it was a lot of diagnostic stuff, and I felt like “I’m paying all this but you’re not even giving me answers.” And I think some of it, when we realized that you might not be able to see, there was an urgency for me, to show you all the beautiful things I could. To take you places, to let you have great experiences. You know, whatever it took. So that’s what we did. I had a job I really didn’t love working at as a Walmart manager, so we could have some stability, so there wouldn’t be a change of doctors or insurance. Does that make sense?

Yes, that makes perfect sense.

MOM: Money didn’t really matter anymore. I don’t care if we have to take out a loan, as long as you were being taken care of, that wasn’t as much of a worry anymore. Schooling, even. Honestly, did it matter anymore? No. I mean, of course we wanted you to be smart but at the time we thought you might die (note: at the time, search results for NMOSD suggested only a limited number of years to live), so screw that noise. What matters is a full life. We worked school around life, not life around school. When a kid is little, school is the priority, and it wasn’t anymore.

DAD: It was a lot of keeping your spirits high and keeping Mom’s spirits high. Making sure there is always something to look forward to. My career didn’t really matter anymore. I was at work, but my heart was home with you guys.

MOM: Same with me. When you got sick, I was supposed to make a wedding cake that week. I had to cancel. I wasn’t going to leave you in the hospital to go do a wedding cake.

Do you feel at all you’ve lost your dreams?

MOM: No, what was most important at the time was not that job. I did not lose my

dreams.

DAD: I spent my thirties at Walmart. It’s what we needed at the time. Steady income. Steady insurance.

Did you ever experience caregiver fatigue, and what did that look like for you?

MOM: It was not so much caregiver fatigue, it was more like grief, like “impending doom” grief, grief for something that hasn’t happened yet. I remember driving by First Assembly of God, that little church on the corner, and it had grief meetings once a week. But I’m in the in-between world, where my child hasn’t died but I’m already grieving. There’s no place for me because who else is experiencing this?

DAD: It really isolates you from relationships because it’s all you think about and talk about, and when you get together with friends, they think the right thing to do is to ask you about it, so you end up talking about it more. When really, I just wanted to not talk about it for a night. It was hard for me to get your mom to even leave your side and do something that would be good for her. She loves you so passionately, but sometimes it’s not to her benefit. It was also hard for us to go to church because they would want to pray for us every week.

MOM: Maybe we also sensed too, that it wasn’t beneficial for us as a family, all the questions, always bringing it up. Even all the prayers. I know that you had disappointing moments when it comes to prayer. All around, it was too pokey. It kept poking something that was so raw.

DAD: There are no answers, you know? There are no answers, and you feel like you’re owed answers, and it just doesn’t work like that.

MOM: Exactly. We’re the in-between. People around us wanted a happy ending, like “Oh, she did this treatment and now she’s better.” And we didn’t have that for anybody, we couldn’t give that to anybody. We just had this impending doom feeling, and we didn’t know how to not feel that way.

Because you can’t mark it as “remission?”

MOM: You can’t mark it as remission, you can’t say “treatment is done!”

I always remember people asking me, “How many more rounds of treatment do you need?” but it’s not a set amount.

MOM: Exactly. It was very difficult to deal with people at the time. We really did enjoy going to things like Guthy-Jackson stuff, and SRNA’s camp, to meet other people who were in the in-between place, not being done, not knowing how things were going to go.

DAD: I felt like I learned the proper response for things. When others ask, “Hey, how are things?” their intention is to express they care about you and your family. The appropriate response was “Here are some good things that happened lately. Here’s what we’re looking forward to”, and to leave it at that.

They’re not really trying to ask about the full extent of it.

DAD: And their eyes just kinda glaze over.

MOM: And it didn’t feel good for us to unload.

You don’t really feel heard.

DAD: People really have no frame of reference, they say “How’s your daughter’s cancer?” and you’re just like…

Cancerous. (all laugh.)

MOM: Sometimes we just went with it.

DAD: And we’d say, “She’s doing good. She has more good days than bad.”

What helped you to combat any caregiver fatigue or despair you experienced?

MOM: Time. The longer time passed without you having any more flares, that’s what it took for me to not have such fatigue and depression anymore. To not carry that burden.

DAD: We had to take possible futures for you, and just lay them down. It is going to be whatever it is going to be. We chose to live in the moment. I’m a planner by nature, so it was hard for me to not think about that stuff, and just think of today. But once normal got redefined for us, we got great stability and started to see that you were acting like a normal kid for the most part. You had some stuff you had to deal with, but you adapted to it. You laughed and giggled, read books, and played video games.

MOM: Still sassy.

DAD: Still sassy, just like your mom.

MOM: I think that was helpful for us because if we had any fatigue, it was because we felt no hope. When hope came back in, the fatigue was a non-issue. We could do anything.

Just considering people who are currently experiencing fatigue, those who are in the midst of the battle, do you have any advice for those who are newly diagnosed, or newly relapsed, and the people who take care of them?

MOM: Everybody’s case is different, and each case has different outcomes. There’s time, but there’s also a need for reconciling what I had imagined for you with the reality of how it ended up being. It’s like lowering the bar. “Will she graduate high school?” I don’t know. I imagined she always would, I saw it in my mind. In order for me to operate, I lowered the bar.

DAD: It’s like sacrificing your expectations.

MOM: I set the bar so low that anything bonus was great. Having you be pretty much relapse free after all of the continual flares, in the first year especially, the bar was set so low after that point. We were ready to go to the hospital at any time. I even remember bringing my coffee maker one time. I was like, “We’re ready, let’s go! As long as I have my coffee maker.” I wasn’t even that upset anymore. We reconciled it at the lowest point that we could, and anything above it was just wonderful.

DAD: I think staying united, taking care of each other but still giving each other space. Loving each other, and extending grace.

MOM: I would say, Dad is different from me, but I had to know everything about the disease. It’s like a monster in the dark, but if I know everything about the monster,  it’s no longer as scary. I started to know the signs of what is a flare, what is a pseudo-flare. I knew the rules. And this helped me not to be in stress-mode all the time. To cope. I know the monster, and if I know him, I can handle him.

I remember just tracing the route from our house to the hospital. I could just trace the route in my mind every night, thinking “this is where we’ll go if I go blind again. This is the route we take. We would be fast enough. We would be fast enough to get treatment. We would be fast enough,” Just over and over again.

MOM: We had tools, basically. So we don’t always live in fear.