Last week was a great week. Monday I discovered that my little craft studio in our backyard, tried to catch itself on fire, resulting not in a day of making of Christmas presents as planned, but in three days of cleaning and packing things away, and another three days painting.
Following that, on Monday afternoon, the first big storm of the season rolled in. Our children did some kind of strange dance willing the power to go out as we gathered flashlights, and listened to the gusting wind outside, and then we heard the unmistakable sound of a tree coming down. One big tree, right over the top of the truck. Broken window, very dented cab, may or may not be totaled.
Also on Monday? Mike’s bi-annual appointment with his Neurologist. The follow up appointment after his yearly MRI. I’ve lost track of how many times we have sat in that office. Enough times now that I notice the new framed pictures of grand kids on the doctor’s desk, and a couple new pieces of art.
Only two appointments a year now, but that first year? Three? Four? The first appointment was a day after Mike was released from the hospital after a sudden and severe attack that started over Christmas of 2014, and subsequently led to an early diagnosis in January of 2015. A half day in the local ER on a Wednesday, a three hour MRI, then holding Mike’s hand and trying to hold myself together when the ER doctor came back and said, “I don’t believe in beating around the bush with this kind of thing, you have Multiple Sclerosis.”
And then they sent us home. A handful of paperwork and follow up appointments, our world turned upside down, trying to function, and still be at the bus stop by 3:00.
And to follow up a life changing diagnosis? Mike put in two twelve hour, very difficult, work days, and we were back at the ER on Saturday, this time for a three day stay at the hospital.
Over and over we heard, “it will be a new normal”. That pissed me off. We liked our old normal. And they tried to say that like it was comforting, while they were dropping off paperwork for how to apply for a handicap placard, and available vehicle adaptations. My husband races cars, the only vehicle adaptations he was interested in were ones that would shave a couple seconds of his lap time.
“You’ll get used to your new normal” they said, as we went on our walk down the hospital corridor, and the 85 year old hip replacement patient from the room next door cheered us on as he shuffled past.
Then that first appointment in the specialists office, and that first feeling of hope, when I broke down, from fear and complete exhaustion, and the doctor said, “You’re scared because you’ve never been through this, I’ve been through this hundreds of times and I’m not scared for you.”.
Mike pushed himself through recovery, but we didn’t know what to expect. Recovery came in pieces. It was one night at home after watching a movie when Mike stood up, looked at me with a little bit of surprise, and said, “I can feel my foot.” Recovery was being able to identify by touch, a small ball placed in his hand while his eyes were closed. Danica was eight, and it became her favorite way to help Daddy. She would gather small things, paperclips, pens, nuts and bolts, etc. Without looking Mike could only tell if the object was hot or cold. Sometimes she challenged him with identifying tiny princesses or little round, plastic animals, so we had to set some ground rules, “You have to pick something that Daddy is familiar with in the first place”. Recovery was a Saturday in the shop putting together a tool bin, the success, and then the frustration that two months ago that would have been a quick job, done in a couple hours.
But normal did come around. By April we were visiting friends in Mexico and Mike was diving off the boat and swimming in the Sea of Cortez with the kids. By May he was racing again. He is amazing. He pushes himself too hard. Some days the reminders of that are harsh, but he won’t stop pushing.
Auto immune diseases are so often invisible. My Mom was diagnosed with Addison’s Disease when I was fourteen. I’m 43 now, and still, if I can’t reach her by phone or text once a day, I go into a panic that she is having a crisis and can’t get to the phone. She knows when she’s over done it. But she’s a farm girl. She fishes, she hunts, she rides horses. She was my first best example of not letting the bad days take over.
Here’s to all of you battling these invisible, and not so invisible, battles. Here’s to being grateful for normal good days, and here’s to holding onto one another on the bad days, because those are normal too.
If I see you at the store I’m probably going to talk about kids school stuff, or the tree on the truck, because I’m probably not going to say, “Well, last night was a bad night, symptoms were bad, sleep is a constant struggle.” I might post something silly on Facebook, but I won’t tell you that I woke up in a cold sweat scared to death about what happens if insurance stops covering the meds, or what we are going to do if health insurance premiums keep rising. Because we all have stuff, we all have those moments, and I will be thankful for everyday that the good outweighs the bad.
And most of all? I just wish that I could tell me three years ago, and anyone going through the same thing now, that you will find normal again, it can be your old normal with some changes. Some days are hard. But some days there is a feeling of such contentment, just making dinner, listening to school stories, just having a normal day.
We will work to keep making things better, we will travel, we will follow our dreams. I will continue to have moments that I feel overwhelmingly happy with the little things; When Danica and I are working in the backyard and I know that Mike and Joe are busy working on one of many car projects in the shop.
We will not only deal with what we’ve been given, but we will take this life that we’ve been dealt and live it to the fullest.
Last week Mike’s specialist used the words, “no changes” when he looked at the MRI results. He used words like “stable” and “no disease progression”
Last week some normal stuff happened, there was a small fire, and a tree fell on the truck, and last week was a FANTASTIC week.