When my wife first was diagnosed with ALS—amyotrophic lateral sclerosis (a.k.a. Lou Gehrig’s disease, Motor Neuron Disease, or MND), I began a YouTube series of hour-long talks. I would record them in the middle of the night…usually around 2am or 3am. I had difficulty sleeping.1
At first, I plowed through everything online and on YouTube about ALS. Much of the academic and medical texts express the same ideas over and over again and there were only a handful of videos on YouTube regarding how to prolong life, what treatments were in the pipeline, etc.
I thought people would be interested in my perspective on the tragedy that is ALS (effecting 30,000 + Americans each year—that’s 30,000 death sentences), so I created 11 YouTube videos sharing our experience during that first year. It was really just a way for me to fixate and pour out my mind on what the disease did to my wife and our marriage. Fixation is a psychological state that some of us can produce (with training, quite easily) which heightens the healing properties of Drama Therapy2. It’s not just an attitude, but it starts with one. It’s how actors are able to make a person believe that they are actually speaking to a person when delivering a monologue, not just reciting the author’s words with emotive expression.
My wife transitioned to the Pleroma in November of last year. It’s been a little over eight months that I’ve been bereaving and grieving. Of course, the pangs have subsided greatly, thanks in large part to my friends Terry, Ara, Wes, Omar, etc. and my parents.
Also, there’s the medication. And boy, does it work. The meds help with the suppression of the emotional rise each time I think of my departed wife or am reminded of the torture she withstood. I can’t contain the memory of the horrific experience. I won’t ignore it when it arises. But with the medication, I can experience the grief without the emotion consuming me; bringing me into wailing tears.
I gave up the vlogging thing. Mostly because I think it was starting to irk my wife. She confused my need to talk to someone without consequence (even if it was just a camera) thinking that I was potentially exploiting her disease3. Who knows. Maybe I was. No more than 1,200 saw the videos. It wasn’t as if I was promoting it or trying to suddenly become a grief YouTuber or run an ALS vodcast. For me, it was the only way at the time to create a setting wherein I could explore my thinking about an untenable situation.
Well. Now, it’s three years later. I’m alone, but can access a small group of friends when needed. It’s difficult to get emotionally engaged with your close friends because it takes so much energy on their part to stay in it with you. They’ve got their own lives, their own spouses, parents-in-law, teenagers, etc. So I try to leave them alone.
Expressing Anger
Expressing anger isn’t something we’re taught is OK, coming up in America4. Some kids get sent to their rooms for expressing anger. As children, we are taught that anger is inappropriate. Sure, there’s venting. But rarely do we see a good example of venting that doesn’t hurt someone else.
I write about this because I’ve recently recognized that anger is a very appropriate response to grief. I was angry at the Neuroscientist who diagnosed Olga because of his child-like bedside manner; I was angry with MY friends and family who wouldn’t come by to see us or help for two-and-a-half years because it was simply too emotionally taxing for them5; I was angry at the FDA for being so picky about a stem-cell treatment that was about to be approved and not giving it the emergency approval that so many Americans were begging for. After all, so what if it actually kills you (it wouldn’t)? You’re gonna die anyway! Why not give my wife—I mean, them—a chance to live a little longer? Maybe even gain some of their muscle ability back?
But it all fell on deaf ears. My advocation, my blogging, my Twitter campaigns to jostle lawmakers, etc. So the anger turned inward…and became depression. Thus, the meds.
The thing is that if we intellectualize or minimize our anger, it won’t go away. It’ll just find an avenue of expression through constant fatigue, continued physical ailments, or outbursts of frustration in situations that appear to be unrelated to the death. The grieving have to verbalize the anger felt, either out loud or silently.
I don’t feel anger now; not as much as I did over the past three years at this damned disease. That’s something I want to respect. I don’t’ HAVE to be angry while I grieve. It’s simply a common response to grief for most people.
Grief and Spirituality
When Olga died, I had questions:
What happens in death?
Is there an afterlife?
What is my purpose?
How do I live now?
I had to address the core of who I am, regardless of my philosophical affiliations (Egalitarian Humanist that supports the Hermetic wisdom traditions). But the answers to those questions differ for everyone. So, I chose to grieve openly and honestly. And, I gotta tell ya, I think its helping me resolve the spiritual challenges her death brought on.
I am not actively involved in any church, so I wasn’t able to embrace faith and surrender to the peace and strength (??) it must offer. Religious rites, fellowship, etc. can support a grieving person so they can carry though some of those darkest moments. Don’t get me wrong: I was VERY actively invovled with my wife’s church. I may not identify as Christian, but my wife did and, for those of you who are looking for a happy marriage, your spouse’s religion is something that you HAVE to support, whole-heartedly. People who believe have a psychological sense of connectedness with the infinite. So if their spouse doesn’t believe, then, to the believer, the two of you exist in varying dominions. That’s not how partners, lovers, and the alchemically conjoined work.
To live well doesn’t mean to simply tolerate pain, but to learn what we can from it and eventually transcend its heavy load.
Some eight months later, I’m confident that I have the strength and wisdom needed to heal from losing my other me. Unfortunately, because most of us fear the process of experiencing and expressing the pain, we look for ways to work around it instead of working through it. Avoiding the pain just prolongs and complicates the grieving process.
So, here’s some advice to the friends and family of the grieving: don’t tell them to “Forget about it” or “Move on, she’s in a better place.”, “You gotta get on with your life”. Sure, there maybe times that that’s appropriate (I’m thinking two years after the loss, perhaps, I don’t know…). But, even though you think you're helping the bereaved feel better, what you’re encouraging them to do, again, is to work around the death, instead of through it.
The Tasks of Grief
Accepting the reality of the loss involves coming to terms with the actual reality and magnitude of it. Death requires the acknowledgment of its permanence. Attempts to minimize the loss or to deny its permanence only hinder the unfolding of the healing process. Overcoming my sense of shock and protective numbness (which accompanies most losses) was inherent in the accomplishment of this task.
Acknowledging the pain of the loss is when one is experiencing and expressing the various feelings of grief inherent in adjusting to a loss, including sadness, despair, anger, guilt, fear, etc. Avoidance of emotions or attempts to numb feelings through distraction, drug or alcohol use, or by minimizing the significance of the loss delays the accomplishment of this task. I had to overcome both internal and external messages not to grieve.
Validation and normalization of all grief affects facilitates healing, as does revisiting memories (good, bad, and indifferent) and reviewing the nature of the lost relationship.
The task I’ve been working on this past season is adjusting to an environment in which my wife is no longer present: lots of role changes and behavioral shifts necessitated by the absence of my life partner. An identity crises is inherent in this task as I struggle to answer questions like “Who am I without her?
So, after some six months, I finally got up the energy to rent out our house and move up to Orange County, where I’m closer to my day job. The routines that she maintained, I had already taken over during the diseases’ unfolding. So the business side of our family slowed down, but was kept up.
What I’m focusing on now is emotionally relocating Olga and reinvesting into my own #personallegend.
Death ends a life, not a relationship.
I survived ALS. Olga didn’t. So, I'm making the shift to a relationship which exists in memory rather than in daily, tangible, interaction. That’s the condition I find myself today. I think it’ll free me to reinvest in new relationships and meaningful activities.
If you’re interested in this topic, I recommend Grief Counseling, Greif Therapy by J. William Worden.
Later, I came to learn of it as a psychological state referred to as “revenge sleeping”.
I studied Drama Therapy both as an undergraduate student at CSULA and a graduate student at UCLA. I’m not formally trained, but I know the techniques used and as such, I used them.
One of the tragedies of ALS is that you lose your ability to move your jaw, tongue, diaphragm, etc. so you can’t talk anymore. That’s right. Olga and I communicated primarily with a new love language that we developed TOGETHER. So when her day-time caregiver couldn’t understand what Olga needed, she would set up a Facebook video call with me. I would just stare into my baby’s eyes and, with just a wince, or a nod, or a grunt, I knew EXACTLY what she needed. That’s how I know we had an alchemical marriage…
I venture to guess that it’s symptomatic of the exertion women have made in changing society to protect themselves and children. But, that’s just my hunch…
I want to emphasize that this was a thing with MY friends and MY family. Olga’s friends loved on her almost daily. For that, I’m ever grateful. Those visits from her friends, her co-workers, etc. really made a big difference in her mood. She knew she wasn’t forgotten and that she’ll NEVER be forgotten.