Years ago when I was in high school I was having a particularly rough day, I was very worried about something that was well beyond my control. Struggling through the day at school, just trying to make it. Walking from one class to another, a classmate asked me a question he had asked me several times before. "How are you?" Amidst all my worries I thought for a moment and replied "Are you asking because you really want to know or are you just asking to be nice?" He was taken aback and said "I guess I'm asking because I really want to know." I told him about what was on my mind and he listened. Our relationship changed that day, after that we were friends often chatting on the way to class.
I've thought a lot about that question a lot since then and my answer. It's so easy to just say "Fine" and go about our day, but how often do we feel "fine". So why do we lie about it? I've found that when life gets tough, it's one of the most difficult questions to answer. Not only because I have to do a quick assessment of if the person asking really wants to know, but then a moment of reflection to find an honest answer. I'm very fortunate to have numerous people in my life that when they ask, I know they are asking because they want to know. But the next part is tough, so tough. It's tough to look inside and see what's there. Am I tired, sad, lonely, discouraged, overwhelmed, afraid...?
My friend who was here last week introduced me to one of her friends who lived nearby. In just a brief introduction, that friend recommended a podcast/book by Nora McInerny. Her key phrase is "Terrible, Thanks for Asking". Nora had a miscarriage, lost her father and husband from a brain tumor all within a couple months. Holy crap, that's a lot of heavy things all at once. In addition to her book, and podcasts she also has founded a group called the Hot Young Widows Club. When I looked her up, I had recognized her from one of her video's on YouTube. She's honest but also has a great sense of humor. Here's one of the videos I watched if you are interested.
In a world with a broken healthcare system, emotional health is one area that is especially broken. It's a subject not frequently talked about and often ignored. Sadly, even at a top notch cancer hospital. We were often referred to numerous other specialists and would occasionally interact with social workers, but we must have appeared "fine" enough that no one ever suggested that we both would benefit from finding someone to help cope with cancer and its trauma filled experiences . I don't blame the hospital, or his amazing team. I can't imagine the intense stress and emotional trauma that they themselves go through. They likely don't have the support they need either. It's just part of a much bigger, complicated problem. One that is compounded by the fact that there is a stigma associated with mental health. One of my aunts shared this video which I've watched a few times. We are taught at a young age to take care ourselves physically, but not our mental health.
The loss of a spouse is considered the most stressful life event a person can experience. On a scale of 1-100, it's a 100. Yup, I agree. It sucks! After years of dedicating my life helping my sweetheart, that abruptly ended and my life shifted. Much of my life is the same, I live in the same house, have the same friends, work at the same place. But everything is different and it comes with a pile of emotions to sift through. I'm the only one who can make it a priority to take care of me. While I worry about how I'll survive in multiple ways, one obvious one I knew of immediately was emotionally. I started looking at reviews and requesting to be added to waiting lists to get some professional help. No surprise, it took months. I've met with her a few times, each time we talk I've come away feeling a tiny bit better, although overwhelmed with things that I think I need to process in order to move forward. Unfortunately she herself going through something and she's had to cancel half of my appointments last minute. Ugg...I'm tired of life being tough...it's exhausting. But each day I survive brings me one day closer to being reunited with the soulmate.
A sweet cousin of mine sent me a card and said that she also dreaded the question. "How are you?" When struggling with depression, she found it impossible to answer. Her card instead said "How is your heart today?" A question that seeks to find those feelings below the surface in a way that says "I'm asking because I want to know, because I care."
Years ago when my husband was "only" battling a brain tumor, I had the great opportunity to have my best friend since fifth grade come visit. We hadn't seen each other in years, and life had kept both of us pretty busy. We were excited to be together, but I was a bit nervous about if things would be different. We had both married and she had children, I had been spending the past few years navigating the health care system helping my husband and balancing a full time job. We weren't the same people that we were in elementary school and I worried that we would have enough to talk about or enough interests still in common. But those worries were unfounded and our week together was memorable and fun, just like the old days. It was a great reprieve from the difficulties of life and something I looked back fondly on when things got worse... much worse.
Fast forward seven years. It feels as if a lifetime has passed since then. Cancer certainty has changed me and widowhood is kicking my butt. I've been nervous and anxious about how to get through my birthday without my sweetheart. Agonizing on what I could do and who I could reach out to help me through it. So it was an answer to prayers when my sweet friend Leah asked if she could come visit for my birthday. She tenderly asked in a way that I could easily tell her I wasn't up for it, but I quickly replied. "That would be amazing!" On days when I would struggle with knowing what to do that evening or that weekend, I often thought ahead just a little bit further to an entire week where there would be someone with me to help me fill my time and my brain could have a much needed break from work. I am so grateful to her sweet husband who also took time off work, and her boys who missed their mother while she was here. It was a sacrifice for them I'm sure, but it was a huge blessing for me.
The week of her visit finally arrived this week. Another friend helped me pick her up at the airport. Her visit has been just what I needed. She was completely accepting of me and my random questions and frequent tears. Coming up with things that she thought I might do, but also understanding that I just preferred to stay in my pajamas and not leave the house. Suggesting things to eat, but understanding when I offered her oatmeal. We did adventure out into the world with some family to a beautiful place of peace. I introduced her to cookie butter and she enjoyed baking treats to offer to guests that we thought might stop by on my birthday. One night she even made pizza man. (Not an attempt at a replacement for the husband I love and miss, but an Italian twist on a Japanese steamed bun).
My birthday arrived and I still wasn't sure what I wanted to do. She sat with me on the couch, talking about life (and death). People sent cards, stopped by or messaged that they were thinking about me. Each one often brought a smile.... and tears. One side of my broken heart was filled with gratitude and love. I have been so very blessed with such thoughtful people. The other side of my heart however was like a bratty kid who didn't get what they wanted for Christmas and decided to throw a tantrum. I miss my sweet husband everyday, but that loss feels more profound on holidays. So unlike a typically birthday filled with balloons and cake my day was filled with smiles and laughter but also tears and sorrow. We finished the evening by venturing out of the house yet again and spending the time hanging out with my brother and his sweet family. Returning home she glanced over at the me on the couch to find tears streaming down my face yet again. She didn't chastise me or make me feel guilty, she simply... loved...
I recently read a meme that explained that it is called the month of May because...
it may snow
it may rain
it may be 70 degrees
or it may be 20 degree's
Navigating grief is much the same. While there may be seasons of healing, weeping, laughing or mourning, often times these seasons all occur on the same day. Sometimes the same hour and often share the same memories and moments. It's difficult to know how to dress for the weather, just as it is tough to know how to "weather" the emotions.
When thinking of holiday's that without my sweetheart, I didn't consider Mother's Day as one that might be difficult. Yet as I sat on my couch today, I looked up at just the right moment multiple times to see on the digital picture frame a photo that often comes to mind when I think of our first ICU stay. It is a picture of him, holding his mother's hand. The picture taken before his trach surgery, which occurred on Mother's Day 6 years ago, ironically also May the 14th. I'm so grateful that I was able to capture such a tender moment. Grateful also for the picture that I took later that afternoon where I was able to spend the afternoon holding his hand. The feeling of hope in that moment was strong as a surgery which once terrified both of us brought freedom. He was also given the gift of being able to breath, which is something that is so easily taken for granted.
While the the past six years have been filled with difficult memories, I strive to remember as well the blessings along the way. Family, friends, nurses and doctors who were there for our journey. Thank-you to everyone for being there at just the right moment with a hug, a text, a listening ear.
At one point when he was in the ICU, my mom was also able to come to the hospital. I don't remember what was said, just the profound feeling of empathy. She had suffered a stroke 6 years prior that changed her life forever. Her time in the hospital and the years rebuilding her life have been difficult, she understands things that others might not.
Here I am now, 6 years later. Also forever changed. Wishing that I could be holding his hand, grateful for the many times when I could.
Earlier this week after a typical day at work, in the quiet of the evening I realized I felt... off. That's not super uncommon, but this was different somehow. It took a while for me to identify the feeling. Fear. Nothing happened to trigger it, it just was there. I'm no stranger to fear, it's one of the items in the "welcome package" you get when your spouse is diagnosed with cancer. I lived with the fear of losing him for 5 years. A fear that was realized in December. The fear of losing him was replaced with the fear of how am I going to survive without him, which has constantly been brewing beneath the surface ever since. How am I going to take care of myself, what when something happens? A fear of growing close to people to avoid future pain of loss. As well as just a general fear of the future, it feels as if the world is crashing in. I have consciously avoided watching the news as knowing what's going on out in the world just adds more worry. But I do still catch snippets of the craziness out there and it's scary.
But just plain fear, for no reason, that was unexpected. I recalled this quote that I've come across frequently from C.S. Lewis. "No one ever told me that grief felt so like fear." Not quite sure how what can help counter balance fear, I attempted to distract myself by learning more about his experience with grief. He married an American writer named Joy Davidman in 1956; she died of cancer four years later at the age of 45. He died 3 years later. I think I remember watching the movie about their love story, called Shadowlands, as a young teenager but don't remember much about it. The quote is from a book called "A Grief Observed". It was a journal that he wrote with no intention of publishing, but ended up publishing under the pseudonym N.W. Clerk. It was his reflections on his experience of bereavement following the death of his wife. I've heard that many have found it to be very helpful, in fact he himself received several gift copies. Perhaps one day when my brain will cooperate I'll read it. For now I've just read quotes from it and been impressed with his ability to articulate the difficult feelings and experiences of grief.
Wednesday marked five months, which for some reason feels profoundly more significant that four, and terrifyingly one month closer to six. A half of an entire year without my sweetheart. I somehow mustered through the day at work even though I felt nauseous, shaky and cried off and on throughout the day. I was so grateful that I didn't have any meetings. When I found out that my brother and sister-in-law had had a difficult morning with a phone call to 911 and a visit to the ER, my heart ached for both of them and the weight of mortality felt extraordinarily heavy. I longed to put my arms around them and cry with them. This human thing is hard.
The following two days were Star Wars holidays that my husband loved to celebrate. Quite the trendsetter, he was celebrating them even before it was the cool thing to do. I thought of years past when we would make a death star pizza or how excited we were to watch the Mandalorian. But still couldn't bear the thought of watching anything Star Wars without him.
Friday evening was a day that didn't fit in with the rest of the week. I finished work and spent the evening more productive than I have in a while. I worked on cleaning off my desk which has slowly been filling up with things that I need to do, and scraps of paper with things I've written down of things so I don't forget. I cleared up some of the small projects and finally deposited the social security death benefit check which has been sitting on my desk for several weeks. For some reason the fact that it had come from Kansas City felt significant, but really didn't mean anything, and for whatever reason cashing it felt so final and a difficult step to do. The death benefit which once upon a time was enough to cover a funeral has not been increased and wasn't even enough to cover the flowers for his casket. Weird little details you never thought you would know. This week I also battled a much less exciting war... insurance wars. Trying to get the ambulance company, rehab hospital and insurance to talk to each other and file whatever paperwork is necessary to hopefully resolve a bill was also something I also did this week. Perhaps one day I will be able to succeed. I also filled out the necessary box on a bright orange paper that came in the mail. Letting them know that he was still dead and wouldn't be able to make it for his second jury summons this year. Ugg... paperwork...
I stayed up late on Friday watching TV hoping that going to bed late would increase my odds of being able to sleep in. But it was not to be. I woke up much early than normal and when I changed the station the coronation of King Charles was on live. It brought back memories of Queen Elizabeth passing away earlier on our hospital stay and watching her funeral. That was early during our stay ad we wondered if we would still be in the hospital for her funeral. No only were we still in the hospital, but that was the day we ended back in the ICU. Finding out later that she also battled myeloma in her final months I can't help but the challenges she might have faced.
This week was tough, but I made it. I was grateful for those who reached out and said they were thinking of me, and loved me. Worn out and tired I was tempted to stayed tucked away in the safety and comfort of home. But I instead I went out with my aunts for a drive and got some fresh air. With time today to nap, reflect and recharge, I'm hoping that this week will be easier. No difficult anniversaries or holiday's to survive, just the normal days that are exhausting in their own way.
