Sleeping

It's 3am. In monastic Christianity, this is one of the "hours." Communities of Christians have often lived by a regiment of prayer, eight fixed times for prayer and meditation. The first hour is during the night at 3am.

People, primarily women everywhere talk about the 3am hour. In fact when I finally talked to my friends about getting up at 3am, they said, "welcome to the club." Are you seriously trying to tell me that women everywhere are up at 3am wishing that they could sleep? Apparently, yes.

I'm not sure what other women do at 3am but this morning I'm drinking tea (chamomile/mint) and writing. In the past, I have baked bread, rummaged through cookbooks for interesting recipes, read a book, watched a movie, wrote in my journal, watered the plants, rearranged my bookshelves, washed the dishes, made vegetable stock, and sometimes I've even prayed.

On one hand I can accept that as a woman I have reached an age that now includes me in a club of women who can't sleep. But on the other hand, I have long accepted that there is a lot of stress in my life. Sometimes it's just hard to sleep. I get up in the middle of the night to pee and quite frankly, my brain never stops engaging. I begin thinking. My brain utilizes a variety of lenses too. I zoom into the specific - what has to be done today, even though today may not really start for 5 more hours. I gaze at the wide angles and the broader issues of my life and Pete's health.

As primary caregiver, I think about medication and doctors, lifestyle and nutrition, obstacles and solutions. Of course Pete thinks of these things too but in different ways. I think about whether I've seen him take all of his medication because people with chronic illnesses often like to skip doses. I think about which doctor we haven't seen or whether or not we followed up with everything. Pete doesn't have major cognitive issues associated with MS, but let's be honest, there's a lot for any one person to remember. I think about our overall cuisine, making sure we get lots of our nutrition from slow cooked, whole foods. I think about ways Pete can get around easier, removing the obstacles that I see and sometimes perceive. I have a lot of things to think about and quite frankly, the waking hours of the day are not sufficient and so sometimes at 3am, my brain engages.

In addition to "welcoming me to the club," my girlfriends said, "take Tylenol PM." I was shocked. Of course I knew that there was a market for sleep aids or else there wouldn't be the assortment of them at the pharmacy. But my friends use sleep aids? Regularly? Every once in awhile? Does everyone use sleep aids? Isn't his just something for crisis situations? And then it hit me (again)... I am in crisis almost all the time.

When you live with a chronic illness, "episodes" happen all the time. Around every corner is the potential for a fall or a mishap, something forgotten or something gone wrong, the need for a new doctor or a new medication, an addition to our life or sometimes a subtraction of our life. I live in crisis. How does one live in crisis all the time? It must be exhausting. Yes, it's exhausting. So, when I'm up at 3am, I'm often angry because what I need more than "thinking" is to be sleeping because I'm TIRED.

And that's why my friends introduced me to Tylenol PM. I learned quickly that I can't take more than one. I also learned not to take it at 3am but that I needed to take it at bedtime or else the waking hours never really showed up until the afternoon hours. I also learned that sleeping pills were essentially Benadryl and so if I was taking allergy pills I probably didn't want to add more antihistamine to the mix or else I would wake with the driest eyes imaginable. I also learned that I loved chamomile tea with mint. And I learned that prayer in the middle of the night was actually helpful.

In the Divine Hours, they all begin with a portion of a verse from Psalm 67, "God, come to my assistance; Lord, make haste to help me."

For a caregiver, that's a request made of us on a regular basis - of course it doesn't sound like that but rather, "I need help" or "Beth, Beth, come here please." And more realistically, we don't hear words but rather a crash or a bang or a lengthy silence that causes me to ask, "Are you ok?" and "Do you need any help?" I often wish that Pete would ask for help rather than leave me to track him using clues. Perhaps that's why the opening line for the hours is so intriguing - it begins with solicitation.

Prayer, whether spoken or not, is a recognition that I need help. Prayer, for me, is the act of stopping human activity with the intent to interact with the divine (whether one believes that divine lives in heaven or within oneself.) Prayer is time set apart that recognizes our frailty and our need for peace or restoration or courage or wisdom. And there is a part of me that is grateful that my soul has an alarm clock of sorts that says, "God, come to my assistance; Lord, make haste to help me." And it tries throughout the day to get me to break with natural patterns, like sleep or work, so that I might find peace or restoration or courage or wisdom.

There have been plenty of mornings that I tried everything I knew, including prayer to get back to sleep and sleep still eluded me. There have been mornings that I baked and cooked until every pan was out and my apron had remnants of a fitful night. There have been mornings, particularly in the winter, that I saw the last bit of night and the first light of dawn. There have been nights that I was so angry that I couldn't sleep and so tired that I couldn't think straight to pray.

God, come to my assistance; Lord, make haste to help me.

I can't really take care of someone who is chronically ill. It is beyond my scope or abilities and time. I will never have all of the answers or be able to remove all of the obstacles. I will learn to say goodbye to lots of parts of life because I can't stop loss from happening.

God, come to my assistance; Lord, make haste to help me.

There isn't an easy fix, a magic pill, a super food to heal MS... or my heart... or my dreams... or my...

God, come to my assistance; Lord, make haste to help me. I'm going to go back to bed. Good night.

Team Scibienski

When Pete was first diagnosed, our son's girlfriend (now wife) suggested that we register for an MS walk together. She said, "We'll have our own Team Scibienski." The sentiment was loving and she intended to find a way to come closer to me in my grief but all I heard was that we needed a "Team Scibienski." And at the time, I couldn't imagine needing that much help. Will our life really need a team of help? After I thought about her idea for a couple days, I told her that I wasn't ready for "Team Scibienski." She lovingly gave me grace to be me and she found other ways to relate to me in my grief.

A lot of people do exactly what she suggested - rushing into the cause or jumping into friendship with people who share their particular chronic illness. We couldn't do it. Quite frankly, we didn't want to be with people who had MS. We had plenty of MS ourselves. I know others feel like we do. In fact the leader of the first MS support group we attended blurted out, "I hate being with people with MS." He was the leader for crying out loud!

We couldn't do it. It's actually not until recently that either Pete or myself has been able to research without tears overwhelming us. At some point our youngest son even said to his father, "Why aren't you reading everything you can get your hands on? That's what you taught us to do. We have a question; we look it up." My only answer: Denial and Fear are two of the most powerful forces in our world.

I wasn't ready to need an entire team of people to take care of my husband. I didn't really have a handle on what our needs were: his or my needs. So Team Scibienski was out of the question.

As time went by, we did begin to form a team of folks who care for us. It began with our primary care doc (an internist); she was the first to share MS with us. A neurologist was needed to confirm and when we finally settled on the third neurologist, she would manage our team.) We needed a cardiologist to distinguish some confusion on the MRI. And when other symptoms emerge, we add players to our team. Right now there are seven physicians who play regularly.

We've been hanging out with our team lately. Anyone who cares for someone with a chronic illness can attest that there are seasons in our life that are spent in the doctor's office. One visit often leads to another visit and then potentially to another. They work together and the best advice we ever got was "always give them a list of other doctors with whom you would like them to copy their office notes." It's easy and they understand that working together is essential on Team Scibienski.

In addition to the physician players on our team, there's me. Sometimes I feel like the coach, sometimes the over-used pitcher and sometimes I'm running all over the field. It's in those times though... the times when I'm clearly playing too many positions that I remember the initial offer for Team Scibienski. And then I realize I'm not alone. Our immediate family remains suited up, just like me. And our larger family probably keeps their uniform underneath their work clothes like Clark Kent. Our community of faith is one phone call away and they're ready to pitch, field flies, or sell t-shirts.

Our youngest son youngest son wants to push dad in an MS walk this fall. I'm still not sure about joining them. But I'm wondering - with so many people on our team already - maybe I should at least make t-shirts.