How the Light Gets In

Why did this happen? Who’s fault? What did we do? What did he do? What did life do? Is there a reason? Is there a cure? Why didn’t we see it? Am I a bad parent? Will my other children or grandchildren have this? Why?

These questions can run through my mind at any time, but they were especially loud right after I learned of his illness and right after he returned home. “Why” is a whipping boy. If I can figure out why, then maybe I can somehow turn back time and undo the why – fix this. I’m the mom, that’s what I do, I fix things.

When it’s 10:30 at night and you get the call that your son is hospitalized half a country away and you can’t hop on a plane to go out and make everything right, I think it’s natural to want to know the why. But I quickly found out that “why” is not really important. There is no whipping boy to take the blows for this.

What IS important is to be there to answer the phone when it rings. To listen to the rambling voice on the other end that does not sound like the son that you knew. To wring out that promise that he will talk to you tomorrow, even though he is certain that he doesn’t deserve to live.

When I first thought about what to write today, I was going to title this blog “How did it all start?” I was going to go on with our story from here. But as I’ve been thinking and writing, I’ve realized that we all have our own story. We all know our own story. And we all, too often, get totally caught up in our story.

So, I will digress from our story to ask another question – What next? I have learned that this question is vital for many people along the path of mental illness.

It is absolutely vital for the person with the mental illness. What next? Will you talk to me tomorrow? Will you wait to make a decision about your life until the next step? What is the next step of treatment? What is the next phone call we need to make? Who is the next contact? What’s next?

What next is constantly on the minds of the professionals involved in our loved one’s care. What IS the next step? What will insurance cover? What is next in the patient’s journey? What will he or she agree to? Be up to? What will the family support?

Our loved one’s family and friends will be asking what next. They will want to know if or when recovery will happen. Some won’t be able to handle it, some will be magnificent. Some will not understand at all, and some will research the topic and think they know everything. Funny though, as my son said the other day, people bring flowers and casseroles and such for other major illnesses, but no one shows up at the house with a lasagna when someone is hospitalized with severe depression or because of a suicide attempt. They don’t know what comes next then.

And, now listen because this is important, if I am going to be able to handle all the above, what next is a huge, HUGE question to ask myself each and every day! I have figured out how to ask the questions of the therapists, the doctors, the hospitals and the day programs. What I have a hard time with is asking what next of those who can offer ME support (see above paragraph).

What comes next is that I now need to learn to claim what I need and not feel ashamed. The hardest time to do this is not when the crisis is happening. I’m pretty good at calling someone and saying, “This is an emergency and I need you NOW!” The hard part is feeling like I can call at 10:00 at night, or 9:30 in the morning, or whenever. To say, “I am feeling overwhelmed and I need to talk.” Or to say, “Please just get me away for a while and let me be someone else.” Or “Please can I have my house to myself for a while, can you take him to do something?” Or even, “My kitchen is a mess, I haven’t had time to shop, I’m out or money, can you bring a lasagna?” Many, many days this is what’s next. The “I can’t take one more step to do anything else if someone doesn’t help me” feelings that overwhelm.

I learned something a couple of weeks ago. The people we need can turn up in the strangest places. And they often are not the people we think they are going to be. I should know this by now, I’ve met a lot of people through the years and many of them have surprised me. A couple of weeks ago, someone I’ve known for a while turned out to be who I need now. They are one of my “what next” people. They are my listening post right now. They ask every day how things are going, and they really listen to the answer. They don’t judge or try to give me an answer or a fix to my problems. And Friday I got to bring home the makings for chicken tacos!

This usually happens for me, but only if I make sure that I am out there. It doesn’t happen if I am holing up at home, keeping everything inside. I know this about myself. I can be a mole person. I’m good at it. After all, one of the most dangerous things that can happen when you are caring for someone else is that you can suffer from depression yourself. I tend towards that anyway, have for years. So, I must be nudged out there, into the open. I’m no good for anyone else if I’m not healthy myself.

If you are having a hard time finding someone to be there for YOU, if you need someone to talk to please don’t wait. Don’t try to do everything alone. Family and friends are wonderful, and they are often great support, but sometimes you need someone who has been there. Or sometimes you just don’t have that support. Reach out. There is support available. Find someone to bring a lasagna!

Contact NAMI – the National Alliance on Mental Illness at www.nami.org to find support in your area.

“I’m certain my cause of death will be suicide.” He said it calmly in the course of a conversation about a church service he was preparing on mental health awareness. It was just part of the conversation.

This is my life. These things can pop up at any time. My grown son lives with mental illness so I do too. Right now, today, everything is pretty good. I have to believe that this will be the case tomorrow or I don’t sleep, but in the back of my mind I’m always ready for something to happen.

The illness in our home is schizoaffective disorder – schizophrenia with an accompanying mood disorder. I have done my research but I won’t bore you with the medical details. What it means in our home is periods of extreme depression, self-loathing, auditory hallucinations (hearing voices), the inability to think or function rationally, over-the-top anxiety, suicidal thoughts and, sometimes, hospitalization. It can mean a phone call from a son who is in a panic at the bus stop because something has set off an anxiety attack. It can mean weeks of him sinking further into depression and anger.

He lives with me in my 790-square-foot home because he is on disability, and has not been able to live on his own. He has two therapy rabbits because they help him focus and stay calm. My son is a college graduate, reads avidly, and speaks fluent German. He loves to bake, and can translate almost any recipe into gluten-free. He has always been very intelligent and caring.

After he moved back home in November of 2015, it took several months for us to access Medicaid and find services. We have been lucky. We found great services that have really helped him to this current good place. Yes, he had to be forced to go to appointments and day services many times. He has been hospitalized once since he has been home. There was a very tense period where someone had to be with him 24/7 so he wouldn’t harm himself. This was at a time when he refused hospitalization. I had to lock up everything in the house that he might use to cause himself harm. We frequently argued because he believed someone with severe depression should have the right to choose an end to life, the same way someone with a terminal illness should.

These debates continue even when he isn’t in these very dark places. He still believes that people with severe depression should be able to end their lives without interference. That they should even be given assistance to end that life gracefully in order to end the pain. I still disagree.

And so, we come back to our conversation of a few days ago. This illness is not “cured.” It does not go away. My son knows that and I know that. It is a sneaky, pernicious bastard that can overtake him at any time. It can tell him that he doesn’t need his medications or therapy or family. It can tell him that his family or his therapy or his other support systems are against him. It tries to tell him that he is not good, or that he needs to do something to harm himself.

He is probably right. His cause of death probably will be suicide – because he always has that in the back of his mind as the solution. But it breaks my heart to hear him say it in such a calm, nonchalant way. He accepts it. I fight it. He may be almost 30 years old, but he is my child. I don’t want him to hurt, but I also believe that this is only a terminal illness if it is left untreated. It IS a chronic illness, and a chronic illness requires constant maintenance and treatment.

Some days I feel I’m being selfish, when he’s deep in the hurt. Shouldn’t I just let him leave his suffering? He argues well. Doctors tell me that it is his illness talking. I don’t know about that, but I do know that he cycles out of those times as long as he does push through and get treatment. I do know that suicide is a permanent solution for a cycle that has not yet been permanent. I will continue to fight for him and even with him if necessary.

Why do I share this? Because we all have our fights. Mental illness is in our homes, in our families. It is a part of our lives. We live with it. I’m not ashamed of my son. He has an illness. He doesn’t hide it. I don’t hide it. Maybe, by sharing, we can help someone understand. We can help someone cope. We can help someone reach out. We can help.

Disclaimer: My son is a firm believer in educating people about mental illness. He has given his full permission for me to use his story and our experiences in this blog, and for it to be shared.

I Need a Lasagna

Oh, My Heart