Blessings During a Difficult Time

In the last three weeks, I have been blessed by and with:

Lunches with friends that give me a reason to leave the hospital room for an hour or two and be distracted by interesting people and conversation

Phone calls from concerned friends and family, near and far. Even if I don't feel much like talking, or don't answer the phone, the contact is comforting

Text messages (see phone calls)

Nurses in the ICU who answer my questions

Nurses in the ICU who take good care of my honey

Nurses in the ICU who encourage me to take care of myself

The best brother-in-law a woman would ask for: Atwood. He has spent every non-working day here with Joe and me. He translates the medical jargon, answers questions I didn't know I had and is wonderfully supportive (sometimes literally holding me up).

Atwood's wife, Bobbie, who is willing to share him and help out as well.

My son who texts me everyday even if it's just to tell me that he loves me; he set up our caring bridge site

My daughter who stepped up and took charge of a one broken paw and one runaway dog

My daughter's boyfriend who made and delivered soup

My extra daughter Emmy who does a daily check in to make sure I am eating/sleeping/taking my meds

My hopefully-someday-soon-daugher-in-law Nichole who makes me goodies, loves us so much and helps me stay sane

The Caring Bridge site where I can write once or twice per day and answer most concerned questions all at once

The time, need and space to write everyday for the first time in years

A chance to cuddle with my grandbaby last night for the first time since Christmas

My neighbor who gets groceries for me

My best gal-pal Annie who helps me hide my gray hair in time for the new semester to begin

Kimmy who put my Christmas decorations away upon request, then tidied the rest of the house.

Homemade ready to eat or reheatable meals from multiple sources

Folks who insist on bugging me about what I need, and getting answers that help

Supportive co-workers

The chance to reestablish cordial relations with my in-laws

Andrea who came to do energy work with Joe and support me, and her husband Kevin who holds my hand and lends me his shoulder

Karen, my friend the medical transcriptionist, who gives me nearly as much info as Atwood

This is not a complete list, and it continues to grow. I promise to continue to recognize and appreciate the many blessings in whatever form they take.

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What Day is it Again?

What day is it?

According to the pill box that I use to dole out my daily supplements, today is Sunday. Is that right?



Yesterday my brother-in-law and I were discussing the timing of his trip home to avoid commute traffic. Then someone pointed out that it was Saturday, so likely traffic wouldn't be an issue. On one level we knew what day of the week it was, but without the regular daily routine that made up our lives before my honey's stint in the ICU, the names of the days simply don't hold the same significance and signals.

I have a new daily rhythm that is very different from those I have relied on in the past. It is different enough from the school/teaching rhythm, from the vacation rhythm, or the semester break rhythm to be disconcerting. Beyond the physical and emotional stress that is to be expected, there is a lack of connection to the reality of time.

I use the Note app in my cell phone to keep track of information every morning at rounds as each person on that day's team shares their observations and insights. Each entry begins with the date, and I use that information to write the Caring Bridge site update. Still, I am getting my dates confused.

It's not just dates and days that I am losing track of; time is an issue. Hospital time is strange. The sense of hurry up and wait is exponentially higher here. The clock at times moves so slowly; the first few days Joe kept falling asleep for short periods of time and waking up to look at a clock whose hands were still in the same spot. At other times the hands move so quickly, I pause to breath and 10 minutes have gone by. As I write this it feels as if we are still in the first few minutes of a sedation vacation, but it has been over 2 hours. Instead of that linear feel, time has become waves of movement, sometimes flat, other times ferociously fast and furious, crashing over our heads and carrying us away while we focus on breathing or blood pressure or heart rate numbers.

The Guilt Monster

It took many years, but I finally shed a good chunk of the mom guilt I carried during the child-bearing/child-rearing years. Mom guilt lands on most mothers like a tiny floating seed; it digs in and germinates offering that no-win internal scenario. Oftentimes guilt becomes so big and un-wielding that it is paralyzing.

I often felt guilty when I was with my kids instead of working or doing activities that I enjoyed. Of course when I was working or doing something without my kids, I felt guilty. My morning routine used mean alone time reading the newspaper before they woke up. After I did the school drop-off run, I took my dog to the park to run and socialize while I stood and socialized. The post-dog park coffee klatch was my favorite part of the day. I felt immensely guilty about how much I enjoyed my morning routine; the same morning routine that kept me sane.

It took years, and some good therapy (for other reasons), to shed most of the mom guilt. At some point I realized that if I wanted my kids to be happy and healthy that I needed to set a good example. Sacrificing my mental and physical health for them would only hand them guilt that they didn't need. It does still occasionally rear its ugly head, specifically when my son is having issues. He is my oldest child, and the one I feel I made most of my mistakes with. I have learned many good lessons about guilt, and its utter uselessness, over the years.

These last few weeks the guilt monster has managed to creep back into my life. At first I thought he was just good old fashioned motivation and love. I want to be with Joe. I want to oversee his care; I want to know his test results; I want to hold his hand as often as I can, and just hang out in the room when I am not touching him. I want to help care for him. When I am away from him, I feel antsy and want to get back. How can I feel good when Joe is stuck in a hospital bed? When he is so critically ill? Ah, that feeling is all too familiar; saldy it causes me to second guess my attempts to take care of myself.

I have settled into somewhat of a routine in the last few weeks. My alarm goes off around 6am. I try to exercise a bit on mornings when I have enough energy. Otherwise I just stumble into the shower, feed the cats and the bird, find some quick breakfast fixings (gf bagel, smoothie, scrambled eggs) and get to the hospital before rounds begin (which gets me there between 8:30 and 9:00). If someone wants to come visit, I usually have lunch outside the hospital. If not, I munch on a couple of energy bars, water, nuts and maybe some chocolate. I generally avoid the cafeteria. The food isn't bad, just not stuff I can eat (mostly bread based). I leave the hospital sometime between 6pm and midnight depending on how Joe is doing. I eat a late dinner, watch some TV and go to bed. Throughout the day I correspond with family and friends (many of whom take me to lunch or bring me dinner foods), do a little prep work for spring semester, participate in morning rounds and write up a Caring Bridge post, hold Joe's hand and talk to him, talk with the nursing staff, and talk with whatever family comes to visit.

Twice this week I have taken off during the day. On New Years Day, I spent hours eating soup with dear friends and napping on their couch. Yesterday I did some banking and running other errands.

So where is the guilt? I feel mostly okay when I am with Joe. It's outside of my time with him that the monster lurks. Guilt tries to creep into each pleasant interaction outside of the hospital room. In the fact that I enjoy having lunch with friends. In asking for more prepared food. In asking for someone to water my plants. In not asking for enough help when wonderful people offer; facing my own inability to process my situation to the point that I know consitently what to ask for and when. In missing my dogs who are being very well cared for by friends and my daughter. In letting my girls clean my house. In the luxury of watching a whole movie. In not getting enough sleep because I enjoyed a movie after coming home at 10pm. I also struggle with the immense support that comes from Joe's "brother" who is here nearly as much as I am, who speaks the medical lingo and communicates most effectively with the staff, who is teaching me a great deal so that I can better understand Joe's condition and care.

I feel relatively safe from the guilt monster when I am with Joe. Logically, I know that I need to take good care of myself in order to be able to go the distance with him. He is really going to need more attention from me once he is moved to the regular hospital, and he doesn't have just one nurse looking after him. As this plays out it, it is becoming very clear to me that when Joe needs me the most, I will have to be working again. We can't live without my income; I have the luxury right now of being on break between semesters, so I can spend my days with him. In a few weeks that won't be the case. Oh, and I feel guilty that I am not at home organizing and cleaning.

Unlike the early years of mom guilt, I don't feel paralyzed, which is a blessing. And mostly I can unbalance the guilt monster a bit and allow myself to feel the blessings: the family and friends who all give what they can, when they can, and together create a cushion of love and support. I'm quite sure that I could not survive this without them. I do wonder at times, if I could be as good a friend to any of these people as they are being to me. They give me so much strength and support; I don't think I could ever match that. Then I remember when our friends Mike and Celia bought their first house. Dozens of people came to help them move. By the end of moving day, not only was everything moved in, but thanks to Celia's organizational skills and mad box-labeling ability, they were almost completely unpacked and the empty boxes were broken down. The new homeowners were quite grateful, but to a person we all said, "but I didn't do much." We had all done what we could, and together we accomplished a lot.

Together our friends and family are keeping Joe and I afloat. I try very hard not to feel guilty about that.

Tears, Fears, a Shawl and the New Year

Monday was my meltdown day. I spent roughly six hours crying. Some of it was outright sobbing; some of it was quiet and contained. I cried with my head on the bed at Joe's side until my son came to drive me home. I cried when I talked about how I felt to my adopted daughter. I cried when an old dog park friend showed up at my door with food. I cried because I thought she had stopped liking me years ago, yet here she was with compassion and love and yummy food. I cried when my son and his girlfriend took my keys so they could bring my car home for me. I cried out of gratitude. I cried because my heart hurts. I cried because I am tired. I cried because I am afraid.

No fewer than half a dozen people at the hospital, including the doctor, attempted to soothe me. They offered lists of ways to support my emotions: journaling, sleeping, walking, talking, praying, eating, and so on.

One nurse brought me a Christmas present from two total strangers: a prayer shawl. With a note:



Naturally this made me sob harder.

My fear for Joe's life was often matched by the fear the people around me. Some of their suggestions clearly came from a place of personal discomfort; it is hard to see someone in so much emotional pain. It is pretty instinctive to want to reach and out and attempt to make the sufferer feel better. They struggled to focus me back to the positive; that meant walking a fine line because they don't know if he will survive. They hope he will; they think he has a better chance than a few days ago, but they clearly didn't want to make promises. Empathy makes us human, but when we empathize we can feel someone's feelings, but that is not always pleasant.

I have taught Daniel Goleman's Emotional Intelligence to my students for the last two semesters. One of the five areas of EQ that he discusses is empathy. He argues that if we are able to share feelings, relate to the pain and situations of other, that we can connect on a deeper level and have more successful relationships. For many people, in order to remain detached enough to offer effective care, the empathy is sacrificed.

On the other hand, one of the downsides of empathy is the inability to handle the distressing emotions that occur when dealing with someone else's difficult situation. The folks in the ICU unit are all very well trained, but they are human and emotional distance is sometimes hard to maintain. I had managed to stay completely focused and steady for 10 days before melting down. I'm sure they were expecting a reaction, but my ongoing tears must have been distressing. That distress resulted in visceral reactions on their part. One of the nurses told me later that she had to leave the room or else she would have cried. Another staff member was fidgety, alternately stepping backwards away, and forward towards me. One nurse, who was going off-duty, spent several minutes nervously talking about how Joe might react later as he recovers from the trauma of intubation. Some of the suggestions and input were helpful, most were not. I recognized early in each conversation who they were trying to soothe: themselves. They were faced with a distressing reaction to a distressing situation and each of them feels a personal connection to me. They have each talked with me at length. Some have joked with me and swapped stories, discovered commonalities; in other words they have become connected to me. That connection has served us well in caring for Joe. That connection caused them pain as I struggled.

Last night I kissed my husband's hand at midnight and cried in fear of what is to come. At New Years we set our laser focus on the new, the possibilities, the promise of goodness. But as it unfolds, the new year rarely meets our expectations. My hope is that I can wrap myself in the prayer shawl as I sit with him and feel the love of strangers, as I also feel wrapped in the metaphoric prayer shawl of the many people who have swooped in with words of love and worry, with food and drink, with the smallest and largest of gifts to buoy us as we move deeper into uncertainty. If the best New Year's celebrations so often usher in difficult years, maybe this difficult New Year's celebration will usher in the positive outcome that Joe needs.