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.

Boys Meet Doctor, part two

We were right outside of Philadelphia when a conversation ensued about the value of social media. Neither son is on Facebook; one signed up for twitter just to follow a guy called "shit my dad says." (If you haven't checked him out, please do so. If you don't think he's funny, try "Jesus never said.")

Anyway, while I was defending the merits of social media, I missed my exit to the hospital. Now I'm trying to follow the GPS as it tells me that it's
recalculating. After finding myself in downtown Philadelphia, I say rather loudly, "everyone stop talking so I can get us to the doctor's office.

Three more turns and we're on our way down a familiar stretch of road when Pete erupts the social media conversation with his "dad voice" to say, "OK, here's what's gonna happen. (silence) Beth's going to pull up to the valet. One of you is going to get my rollator, the other is going to get the door." After a brief moment to process, one of them says, "Ok Dad, when it's time - just yell 'Go team red." Pete informs them that he'll do no such thing. But just as he I pulled up to the valet and Pete yelled, "Go team red."

Everyone jumps out, one with the door, the other with the rollator, me handing over the keys and in minutes we're turning the corner to the neurology suite.

I resisted for a long time asking the boys for help. They're not boys; they're 34 and 29 years old. They're successful men. One with a family of his own. But I want them to be Pete's sons, not his caregiver. I want to shield them from that responsibility. That's my "mom" reason.

But there is another reason: I don't want them to have to care for me. I'm the caregiver not the care receiver. I'd only need their help if I lacked skills or resources. Perhaps I'd need their help if I got in over my head. Their father is clearly in over his head. He has a chronic illness. Their father needs help, not me.

Here's the thing... I haven't fooled them. They know that I need help and they've been trying to find ways to help me for years. (When Dan drops our granddaughter, Julia off on Friday, he takes the garbage out.) They know that we both need help. And they would love nothing more than to offer concrete, tangible help but I'd to be self-sufficient.

After one day of taking them to the doctor with me, I've learned my lesson.

They're funny and clever and strong and smart. I need them with me as much as they need me with them. I spent years feeling alone while all the while they were right there with me. I spent years feeling weak when two of the strongest men I know were a phone call away. I spent years trying to hold things together when together we are meant to hold one another.

I understand why they don't completely understand the merits of social media. They don't need a website to be connected to that which is important to them. We're all right here in the car... and all anyone has to say is "Go team red."

Boys Meet Doctor, part one

We had our bi-annual visit with the neurologist last week. This is our third neurologist. It makes us sound fickle but it isn't like that. A physician friend counseled me when we were going through the diagnosis stage of the game. She said, "you need to keep going to a different physician until you find one that you believe." She was right. I didn't believe her at first though.

The first physician diagnosed Pete quickly. Announcing abruptly, "I'm sorry to say that you have multiple sclerosis. I began to cry immediately and he looked at me a bit confused as if he was thinking, "Hmm, I didn't expect that response." We stuck with him for almost half a year.

The next doctor had great bedside manner. He was so loving and affirming of us both. And yet we would leave his office feeling as though he didn't realize that Pete was sick. And after two years with him, we realized that he was a gifted neurologist who saw a range of patients. And while Pete may have been doing better than an ALS patient he saw earlier in the day, he wasn't doing that well.

Doctor #3 is an MS specialist. Admitting that it took us three years to go to an MS center or find the best doctor available to us is a bit embarrassing. I hear people all the time go right to the best doctor they can find, "they're not foolin' around." We weren't foolin' around either. We learned a lot of things those first three years. We lived with changes in Pete's body and tried to find words to explain it. We vacillated between believing his diagnosis and not believing his diagnosis. We prayed and cried and yelled a lot those three years.

It had taken 30 years for Pete to be diagnosed with MS. In the scheme of things, what's three years to find a doctor you believe?

Here's how I knew she was the one for us. At the end of our first visit, she asked if we had any additional questions. In fact, I did. I had a list of them in my journal. I began going through my list:

What if this is really a back problem? After all, he primarily has symptoms in his right leg.

What if this could be the effect of the Asiatic flu that he had when he was a child?

Am I wrong to understand that some people have non-specific white matter in their brain and on their spinal cord and yet they do not have MS?

And finally, I have a friend who would like me to ask if it couldn't be Lymes... and then she cut me off.

"Let me begin by saying, it is most definitely not Lyme's disease." And then her answer got a bit louder and more rapid ending with, "while you see primary symptoms in his leg, I see them in his hands and in his posture and with his left side as well as right side...." And then I think she looked up at me and I must've had a stunned look on my face. She took a deep breath and lowered his voice and slowly said once again, "You have multiple sclerosis."

And then she kept looking at me. And then I finally said, through a few tears, "Thank you."

I learned that day a very important lesson about myself. I learned that each of us have our areas of expertise. And when I'm in the room with Pete and a physician, I want my expertise to be as his partner. And I want the doctor to take control of everything else. I need a physician with a strong, firm grasp of the situation at hand. It makes me feel safe.

The boys got to meet her last week. And I watched as she did the same to them. She answered all their questions with rapid fire answers. She poked fun at them, and they poked fun back. She encouraged their questions and when she helped them ask the smartest question (as if she knew they were smarter than they were first letting on), she would say, "now that's a good question, let's talk about it."

Thank God for doctors with strong, firm grasp of the situation.

voyeurism

I renewed my commitment to writing and that worked for three days. But I took the last four off. Why do I do that?

I'll tell you why... I told my family that I had starting writing again. And they're the reason that I'm afraid to write. Let me say more about that.

The reason that I wanted to write down my thoughts about grief was because I couldn't find a book that resonated with me. Don't get me wrong; there are shelves filled with books on grief. There are memoirs from caregivers that could keep me busy for a year. The book that I'm looking for would be: written by someone who is caring for his or her spouse and... whose spouse does not have Alzheimer's disease and... whose spouse is not fighting cancer.

Why the narrow search? The journey of someone caring for his or her parents is different than someone caring for a spouse. While Alzheimer's disease is horrible i is really different than multiple sclerosis. And people fighting cancer... well, that's just it - they're "fighting" cancer. I have yet to hear a neurologist say, "we're gonna beat this thing, Pete!" It's not that they don't want to find a cure for MS. Believe me, they do! It's that there isn't a cure for MS. And Pete's body is actually fighting itself so there is no punching allowed. So much of the caring for a person with MS is about accepting and loving and embracing and shrugging and sleeping and hoping that tomorrow will be better.

The image of fighting isn't one I'm looking for. I have spent hours, days, months and maybe even the whole first two years of his diagnosis questioning and wondering about a symptom of MS that has no rhyme or reason... it's just a symptom of MS. Say Hello to it. Cry a little. Have another cup of coffee.

All that to say... a memoir written by someone caring for a parent or someone fighting cancer or someone suffering through Alzheimer's disease does not share my journey. And I longed desperately for a book that I could point to and say, "Look, this person knows what I'm going through." His wife is sick. Or she gets angry. He's sad. She's depressed. He feels hopeless and alone sometimes. She faces mini-deaths every day.

I know why this book isn't written. And it is the very reason that keeps me from writing.

My spouse will read this book. He's not dying like a parent might be. My family and friends will read this book and while they know that I'm hurting do I really want them to see this much of me?

The problem with a book by a caregiver to her spouse who suffers from multiple sclerosis is that it's an incredibly vulnerable endeavor. And while I have desperately wanted to see into other people's lives so that I don't feel so vulnerable, I'm not sure that I'm comfortable with others seeing my vulnerability.