Between Two Kingdoms

My disability has changed. Over the past couple of years, I've had two saphenous vein ablations, a uterine ablation, been under the care of a traditional osteopath and tried new medication, all of which have greatly improved my health. It's hard to believe that not that long ago I was wearing a hard collar 24/7 and worried that I might need a difficult and rare surgery to deal with my cranial cervical instability. It's only been a couple of years since I spent most of our beach vacation in a recliner listening to audiobooks, too sick to do anything else.

I feel better now than than I ever since becoming chronically ill and disabled 27 years ago. It's a an interesting and strange place to be. Of course I am over the moon that I can do so much more, have more consistency in how I feel from day to day, be a more full partner to Chris and stepparent to Hank.

I'm having lots and lots of firsts. Last week, I went to a fundraising dinner with my mom--something I'd never have been able to do before. I planned a baby shower and executed it (with lots of help!) for one of my closest friends. I cook dinner regularly for our family. I'm going to PT to deal with the deconditioning of the past 27 years. I'm taking a class called Meditation in Motion to work on strength, balance and flexibility.

For me, my new normal is really good. I am doing so many of the things that my mom has always had to do for me and I'm able to live with Chris (and Hank 50% of the time).

But what's hard to explain is that I am still disabled. I may be doing a lot more, but I'm also still NOT doing a lot of things. While I now cook most of our meals, Chris does all of the other Instrumental Activities of Daily Living like laundry, dishes, taking out the trash, carrying in the groceries (that I order online and pick up) as well as any other chores that need to be done. We hire a house cleaner who has been cleaning for me for over 20 years.

I still need a LOT of sleep and rest. I sleep at least ten hours a night and am in bed for at least 12 hours a night. I need time to both wind down and wake up as well. This means that I am not able to do any morning activities, as I'm not able to wake up before 11 AM. We have someone come to care for Hank in the mornings to get him ready for school and take him to school. (Chris leaves for work long before Hank gets up). My mom comes each morning to feed and walk the dogs. If I had to get up to take care of Hank and the dogs, I wouldn't be functioning.

When I think about how well I'm doing, a quick look at Facebook or chat with a friend quickly reminds me how different my life still is. A down and back day trip with sightseeing packed in? A plane ride? Working all day and coming home to take kids from activity to activity and still make dinner too? By the time I wake up, Chris has already been at work for five hours! Working and still getting the basics done?

My 'well' places me 'between two kingdoms'. Between Two Kingdoms by Suleika Jaouad is one of my favorite books. This space is one that is between the kindgom of the sick and the kingdom of the well. It's a strange place to be.

Chris and I celebrate where I've come in just the time since we first met. When we met, he was prepared to have to do a lot more than he has to do now. I can manage many of the executivce tasks of the household in addition to doing the cooking and grocery order. Most of my days I feel pretty good during the time I am awake and am no longer suffering through each day. My fatigue and pain don't dominate every moment the way they used to. Yet, of course, they are still there.

At the same time, our lives look different than those of our friends. Everything we do, even a small vacation, requires making sure I can sleep in the mornings and rest more if needed. We still pay attention to how many spoons I have each day. We're mostly homebodies who can be found at the end of each day snuggled up watching a TV show. This quiet life suits us, and we are exceptionally grateful for what my body can do now. It doesn't mean I'm no longer disabled. It also doesn't mean that going for a long walk or the idea of a vacation to Costa Rica doesn't make my heart long for more health.

In between these two kingdoms--the sick and the well--both and all of these things can be true.