Explaining a chronic illness

If you want to know how people REALLY think about mental health, read on about my little experiment.

When strangers or acquaintances learn that my husband passed recently, they may broach the topic of how he died. I don’t mind. This is what I tell them:

“My husband was very sick for a long time. He unfortunately was misdiagnosed for about 20 years. The medication he was given definitely kept him alive – it wasn’t an ideal life, but we didn’t know any better. Then, with a new physician, we got his proper diagnosis, but then we had to go down this path of trying to find the medication that would work without the side effects that he couldn’t tolerate, especially the horrible insomnia. Sleeping only 2 hours a night for 3 weeks is just not sustainable. We tried everything! We just ran out of time before we could find the right medication. We found the true diagnosis too late, and we couldn’t land on the right treatment for him before he passed.”

I get the sorrowful looks, and the kind words of sympathy. Then, they ask what his illness was.

“He was bipolar. He completed suicide.”

If I had a nickel for every shocked look I get…

That’s right. It wasn’t cancer. It wasn’t an autoimmune disorder. No congenital defects from childhood. It was mental illness. And nothing about what I said is any less true about his illness or the search for treatment or his death.

When I start out by explaining that he was sick and completed suicide, there is incredible judgment about his “abandonment” of me and our little girl, or his “selfish choice” or whatever. Come on, guys. Would you EVER tell the loved one of a cancer patient that their chronic illness resulting in death was an abandonment or a poor, selfish choice? Completely ridiculous, right?



Gift-giving: thoughtful but inconsiderate

The holiday season was interesting. It was the first without my husband, so of course, there was emotional baggage that needed to be unpacked, sorted, and put away to some degree. But the most fascinating thing I learned about this past holiday season was about the gift-giving.

I’ll admit, I was looking forward to the gift-giving! This was my young daughter’s first Christmas without her dad, and I wanted to make it special! I was looking forward to my friends and family helping me take care of her during a potentially trying time of year.

Instead, it was… well, not what I expected.

People are so wrapped up in their own lives, I realize. People are struggling with how to take care of themselves, so they have limited capacity to take care of others. This makes me a little sad. But it also confuses me: when people are presented with simplicity, they actively choose a harder route. I can’t figure this out.

My kid is really into games and space exploration and monster trucks right now. She prefers her National Geographic book about the solar system over a storybook for bedtime reading. I put together an Amazon wish list of gift ideas for her, and sent it out to friends and family.

All those friends and family were so very generous this past Christmas! Yet only one person bought something off the list. My kid got a TON of Christmas gifts, but only a few she actually enjoyed. I felt a little badly for her. To her credit, my daughter got over the disappointment at unwrapping dolls, and quickly pivoted to playing enthusiastically with the few gifts she liked. She was perfectly fine with my donating all the rest to charity.

All those friends and family were so very thoughtful – their gifts showed they loved and cared for my daughter tremendously. The gifts just weren’t very considerate. The gifts were obviously what THEY wanted her to have and enjoy, what THEY wanted to give, what THEY envisioned her playing with, despite evidence (and explicit direction) to the contrary.

One family member always waits until the last minute to Christmas shop, even though he got the list weeks prior. Why not just do a few mouse clicks to ensure my kid loves what she gets? No… instead there were a lot of text messages with photos of toys at the store in the days leading up to Christmas. “What about this?” I reply no. “What about this instead?” I reply no. “How about this?” I say, oh, she would love that! And then later, another text, “What about this instead?”

What the holy hell! Why are you making your life HARDER right now? I already said YES. Just buy and GO!

In that case, my daughter didn’t actually get a gift from him in time for Christmas. She got it about a week later. Something I approved of, that I knew she would enjoy. And it was something she is playing with LIKE CRAZY.

In another case, a very close friend and “auntie” got the list but made an excuse about not buying off the list, even though she said she LOVED the gifts on the list and would have loved to get one of those for her.

And you bought her something else not even remotely related to anything on the list because … why?

My thoughtful (and considerate!) daughter brought me tears by asking what I wanted for Christmas. Do you know that not one other person asked me what I wanted for Christmas? Not one. Not the family member who insists that she loves me and wants to know me better. Not the friends who insisted they would be there for me no matter what. Instead I got extremely thoughtful gifts that didn’t really serve me or help me.

I just wanted someone to get my car washed and detailed. There are a lot of crumbs I can’t get to from the kiddo eating crackers on long car rides, spiders in the side view mirrors constantly building webs even though I clean them off, and I can’t get the windshield truly streak-free. I was so prepared to provide that answer to the question of what I wanted for Christmas… until I realized I never got the question.

Eh. No time for a pity party. Thoughtful yet inconsiderate gifts don’t make or break anything. We love those friends and family as much as they love us – with abundance and abandon. But I learned an important distinction in gift giving that I hope to take forward into my own practices, and a little something to teach my daughter as well.

I’m excited about life

I have so much to do and accomplish. I’ve done an incredible amount of work this summer on myself, and I think it has been valuable, productive work.

But I felt guilty. Did my husband have to die for me to realize all this potential? Am I using his death to serve me? Is that wrong?

I realized that he taught me incredible lessons about life that I can take forward. He may have completed suicide, but really, that was a single moment in time and doesn’t erase an entire era of living according to his values that I can keep close as I grab ahold of everything that is new again.

These values include:

  • Preserving working class values and addressing income inequality
  • Volunteerism
  • Commitment to education and ongoing learning
  • Questioning authority, finding independent validation
  • Appreciating and protecting nature
  • Doing the right thing, even if it was against rules or guidelines
  • Seeking help when you need it
  • Travel, exploration
  • Voting, active participation in the political process, local organization and engagement
  • Being neighborly, helping each other out
  • Creating and maintaining distance from toxic relationships
  • Honesty
  • Financial planning and financial responsibility
  • Following through, keeping your word
  • Investing in relationships, putting in the time and work necessary
  • Health and fitness
  • Animal rights, loving and valuing and respecting them
  • Sustainability in everyday practice/ life

Despite his death, he lived his values every day. Those who knew him know this is true. I don’t need to feel guilty about moving on and loving my life, if I keep the values close.

What I have learned

I learned that love actually doesn’t conquer all the way I believed. I thought my love could save my husband from his bipolar disorder. It feels foolish when I actually type it out, but whatever, it’s what I believed.

I learned that trusting my instincts and listening to my inner voice doesn’t lead to happily ever after. I wouldn’t do it differently – there’s a satisfaction and a peace that comes with making life choices that way, and that doesn’t go away. I just know now that doing so means I’m on path to learn lessons, not to achieve some culmination of happiness or an ideal. I guess life doesn’t work that way.

I’ve learned that I still held onto very childish, overly simplistic ideals of life. I’m still an optimist. I still believe we have incredible power over our destinies. I just no longer believe it plays out exactly the way we want or hope.

Grief makes me feel ugly

An unusual thing I’ve experienced is that my self esteem has taken a serious hit after my husband took his life. I didn’t expect this. I don’t even know what it stems from, or why I would even feel this way. 

But in her book, Second Firsts, Christina Rasmussen describes this exact concept. 

The voice of grief is rather convincing, isn’t it? It tells you you’re “too old,” “not good enough,” or “not worthy enough” for another chance at life, that starting over is impossible. This voice in your head is the first thing you hear in the morning and the last thing you hear at night. It drives with you to work. It stays with you at lunch. Its message is so consistent that, because of its repetitive power, you may be inclined to believe it. But, as persuasive as the voice of grief is, everything it says is a lie. It’s all a pack of lies. Do you want the truth? If you do, then start listening to life calling to you inside your grief. How? Every time you are yearning to be held and loved, to laugh again, listen to your yearning. Do not listen to your fear . . . Listen to life calling you: “I am here, come on over. Take a chance on me. I am your life, and you’re all that I’ve got.”

I’ve felt inadequate in the most simple and the most fantastic ways since my husband died. When you lose a spouse, someone you met in what felt like the prime of your life, someone who basically agreed to love you whatever happens, and then that person dies – kills themselves, no less, you sort of feel like the gum on the bottom of someone’s boot. Not good. 

The prime of my life feels a long time ago, and I had settled into love, comfort, reliability, consistency, and being intimately familiar with known demons. 

All the demons are suddenly unknown, and I feel woefully unequipped to wield the sword in the dark against the invisible.

Rasmussen claims to have gotten out of this inadequacy. I hope to, as well. 

I hope there’s no afterlife

My husband had considered suicide a few times over the last 25 years. What always stopped him was thinking, “What if it’s exactly the same after you die?” Might as well stay here and soldier through it. 

I don’t believe in any afterlife at all. No heaven, no hell. I believe our energy is just released back into the universe, essential particles doing something different than they did when they made up us. That the spiritual sides of ourselves follow the equivalent of the physical sides of ourselves after death. This gives me great comfort to believe it’s just a natural cycle for what we know to be our souls. 

But everyone around me is talking about getting signs from beyond and feeling his presence and his soul doing this or doing that. It’s actually somewhat upsetting to me. Because my #1 concern is that if it’s true that our souls are intact after death, he’s struggling and in pain and alone. 

I haven’t felt his presence. I’m glad for that. I really do hope everyone’s “signs” are just coincidences and that my husband just doesn’t exist anymore and that the pain truly is over.

Where are his friends? 

My husband’s friends have been largely MIA since he died exactly a month ago today. No calls, texts, emails, visits beyond the first few days. I feel totally abandoned by them. Am I wrong to expect to hear from them? 

And now friends are not making it to the service. His two closest friends who were in our wedding will be there, but I’m shocked that others have given me all sorts of reasons why they can’t. The only thing I can think of is that guilt is keeping them away. 

But I’m so terribly upset and disappointed. I feel so sad for my husband. He ended his life, and now things are playing out this way after his death? My heart is breaking. 

My 4 year old lost her dad but it seems now she’s lost all her “uncles” and I’m scared and concerned that many of the men in her life just vanished.