The Return of Grief

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Unexpectedly, this week has been an especially hard one in terms of the death of my husband. It has hit me hard, because, well, as I mentioned, it was unexpected. I don’t think that it is necessarily this hard because it is Holy Week, although I’m sure that doesn’t help. Rather it seems to have been a series of seemingly small things that have hit me like small blows, one after another, each one adding to the impact.

It started on Monday night with a concert. We have concerts in our building every Monday evening, and since my husband’s death, I have been choosing to sit off to the side and in the back, rather than our normal place close to the front, so that I could leave discretely if I felt too tired or too overwhelmed with memories. But this past Monday night, there was an empty seat right next to a good friend and I chose to sit there. It was in the third row, a place where my husband and I often managed to sit by arriving as soon as the doors into the performance space were opened. Our favorite cellist was playing this past Monday, and in the past, I have always wanted to sit as close as I can to her so I could watch her fingering and bowing. So I didn’t give it a second thought as I sat down four nights ago, simply glad that I had found a seat so close when most of the seats were already occupied. But then the cellist and the double bass player bowed the first note, and within five measures I found myself weeping, partly because the music was so beautiful, but mostly because it was impossible not to remember all of the string concerts here that my husband and I had enjoyed together.

After that, the week just seemed to pile up one assault of memory after another. Tuesday I was taking the dog out for her last walk before bed because our friends who normally do the last walk of the day are away. As I turned around to walk back home, I saw the lights on our skilled nursing floor and remembered looking up every night a year ago to find the room that my husband was in. In April of last year, he was still alive and awaiting the surgery to remove his gallbladder. It was before the fall that proved fatal, and at this time last year, we had every reason to believe that after the surgery, he would recover well and return to our apartment on the 10th floor.

Everything about this time of year reminds me of the hope that I had for his full recovery: the fact that it is still light after dinner, the temperature that’s running in the high 70s, and the way the light hits newly blooming flowers. I have been crying hard every day this week, and I haven’t done that in months. Certainly I have moments and days now when his death hits me hard, but I thought I was done with this constant grief that presses down on me and makes it difficult to find joy in anything. Each night I go to bed hoping that I will wake up in the morning without this stone weighing down my heart, but for now, at least, it seems to have settled in.

Appearences Can Be Deceiving

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Image: ZebrasChild

Any guesses as to what this tree is? Or the fruit? No fair if you are a person who knows the name of every flower, bush and tree.

I was taking a picture of this while I was walking the dogs (which is when I take most of my photographs), and a woman walking by asked me if I knew the name of the tree. When I responded that I had no idea, she told me the name and said, “Since you were photographing the tree, I thought you might like to know the name.” She was right, of course, I did want to know the name, especially since I was going to put the photograph in a post.

Ready for the big reveal? It’s an Irish Strawberry tree! (Arbutus unedo, if you’re interested.) And apparently you can actually eat the fruit; you can even find recipes for it online. Who knew that a kind of strawberry grew on trees? And especially looking at this unripe fruit, I never would have guessed what it was in a million years.

Many disabilities or rare medical conditions are like that – you can’t necessarily tell from just looking at a person whether or not they are healthy. A person with a serious heart condition, for instance, might not appear to need additional help opening a heavy door. And in my case, having a Primary Immune Deficiency doesn’t always show, if I’m relatively healthy at the moment. People passing me on the street have no idea that I need IV infusions every three weeks to stay alive. When people do find out that I have CVID, I usually get the reaction, “But you look so healthy!” For a long time, I didn’t know what to say to that other than “Ummmm, well….. actually I’m not.” Which made me feel a little silly, because it didn’t feel like I was adding anything either to the conversation or to their understanding. And giving a scientific explanation of gamma globulin levels, B cells, T cells, number of known genetic mutations, etc, which I love to do, usually has the effect of making people’s eyes glaze over. I usually end up saying, “Well, when I’m not doing well, I don’t come out of the apartment, so you usually only see me when I am doing well.” Which people here in the building usually do understand because there are many people in their 80’s and 90’s living here. And their medical condition is, well, being old.

But life can be extra tricky to navigate when you have been diagnosed with one of the “invisible diseases.” It’s hard to explain why you can’t always come to social functions, or why you need naps during the day and many hours of sleep at night. And it can be awkward to find that you sometimes have to cancel commitments at the last minute.

People often don’t know what to say when you explain that you have a managed, but incurable and life threatening disease. For those of you wondering, the most helpful response is the same as when a friend is going through any other difficult time. A simple, “I’m so sorry that you are living with this. Is there anything I can do to help?” goes a long way toward making us feel seen. Above all, we need to feel like people rather than A Person With A Disease. We have interests, goals, passions for things just like a healthy person. And we are so grateful when you see us for who we are: people. People with special needs, yes. But people. Like you.

A Delayed Birthday Present

Birthday Coffee Mug        ©Zebra's Child
Birthday Coffee Mug: Miniature Schnauzer                     ©Zebra’s Child

A friend has the best blog title ever: “Four Camels and a Coffee to Go.” Since my nurses on the infusion unit have a sense of humor, I think I’ll ask them if I can have “4 camels to go” with my gammaglobulin infusion today. I’ll tell them it would be a delayed birthday present. They might tell me there’s only room for one, though. The infusion unit isn’t very large.

PS: I don’t have a picture of four camels. Or a picture of even one camel for that matter. So I had to put in a picture of a coffee cup with a dog on it. That’s the “coffee to go” part, obviously. The mug was a birthday present from my mom, by the way, so it fits right in. Hope you don’t mind.

PPS: As you may have read yesterday, my immune system is having something of a Work Stoppage and has decided to go out on strike for awhile. The bottom of my left foot looks something like the boils of Job, and the heel of my right foot has a fissure that is looking more and more like the Grand Canyon every day. I would very much appreciate any words of encouragement, good thoughts, prayers or even funny jokes that you might send my way throughout the day today. Many thanks.

Hannah
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Can’t Talk

I was out yesterday for 5 hours with a doctor’s appointment and then some errands, and…… well, the froggy voice that started the day before turned into full-fledged laryngitis, and I can’t talk. And I feel like…… well, like anyone feels when they have a cold. Which I supposed I should be thankful for. I feel just like anyone else feels when they have a cold. That is, so far no infection. 🙂 I was feeling extra exhausted all this week, and I was puzzled because although I had had my infusions last Thursday and Friday, I certainly should have felt better by Tuesday, for heaven’s sakes! Now I know my body was trying to fight off this cold, which it did successfully for several days. But now I definitely feel crappy. Let’s hope it doesn’t last long: I have an 8:00 AM performance call on Sunday morning. 😦

Sick Today

I’ve got a common cold, no need for alarm, but I’ve decided not to stress myself with self imposed deadlines. It’s supposed to rain rather hard over the next several days, which we desperately need here in California. Perfect weather for staying in, drinking hot tea, and wrapping up in a blanket in front of the fire. I’d suggest doing the same over the weekend, if you can manage, even if you’re not sick. Or at least an afternoon of it. Make it board game day in front of the fire with the kids, or snuggle in and watch a movie together. You will undoubtedly feel better for it. I’ll see you guys on Monday.    xoxo