She’s in pain and struggling, but she refuses to ask for help.
--Christine
A lot of people ask me about my relationship with my mom. No: it wasn’t smooth sailing. Yes: my shit came up big time—so did hers. Not only in our personal relationship but in response to the whole ball of wax. Her illness, navigating the medical system, her eventual need for home care and then assisted living and then a nursing home (and efforts to go back to assisted living)—and her need to be herself. My need to protect myself from exhaustion, stress, and fragrances/mold/pesticides/toxic cleaners—and to have a life of my own.
I got triggered by her, and she by me. Our past, our present, my old wounds, my reactions, and my desire, at times, to be anywhere else on the planet except with my mom—to go do my thing, to be free of the struggle—were all in the room. Her old wounds, her loss of independence, her need for care, and her die-hard struggle to retain control, her mom role and her sense of self, and her freedom were also in the room.
Compared to when my mom had breast cancer, and I (19 & 20 years old) cared for her at home after her mastectomy and a year later following her tram-flap surgery, the field between us was thick and muddy and complicated. We got along okay, but we were not all that connected. I felt like I had grown to become an outlier in my family—poet, anthropologist, a wanderer, with an intellectual bent but toward subjects very foreign to my familial roots (and often disruptive to them), a woman with her ear to the wind spiritually but not of any one tradition, particularly not the one I grew up in, and woven into all these qualities, a highly sensitive person (I don’t mean hypersensitive) in a family of more "hardy" folks.
Furthermore, I had been halted in my academic pursuits by environmental illness and became dependent on other people. Stopped dead in my tracks. At times I didn’t know if I would survive. And there was no clear way out. Not exactly a trumpet blast for success, in a family where independence and success, goal setting and positive thinking held sway.
And I ended up investigating this realm of illness and suffering—taking the journey, not fighting it anymore. For the first few years of my illness, I sat one day a week for an hour with my therapist next to a 250-year-old ponderosa pine tree (in every kind of weather) getting support and navigating the suffering and huge life change and challenges of severe chemical sensitivity. I tried to face: “Illness as path,” as Ezra Bayda’s teacher said to him (from his book Being Zen: Bringing Meditation to Life). But this path was, needless to say, anathema to what my mom had modeled and what I’d grown up learning was the way to “tackle” illness and challenges.
Alas, in 2007, we found ourselves in the same boat together, having to make it work, for multiple myeloma would prove to be a whole different beast.
When my mom suffered her second vertebral fracture due to the multiple myeloma (in spring of 2008), she was advised to wait and let it heal (not good advice, we discovered later). Her care needs increased, her pain level was too high, and she struggled to maintain her solo life in her home. The rounds of Dexamethasone, a steroid, that she took also didn’t help—it often severely impacts your moods and social relationships.
On one particular day, while we drive down the canyon to be with her and help her out, I gird up my forces to walk in the door and a) keep my boundaries, b) assist with what needed to be done but no more, and c) be centered in a peaceful, quiet place within, unruffled—not “taking on” her “stuff” in any way. From my journal that day:
Everything is so loaded. She wanted to be able to sit out on the patio to eat but didn’t ask for help directly. And then in doing it, she pitched in but struggled because of her back and hips. We took over, but then she felt rebuffed. Finally, she took a seat and got some water. She has few other identities. She’s a do-er. And, it must be very hard to lose function and see that it might not come back. Yet, things could and will likely improve with the medications and over time.
She’s so impatient with herself and with others around her. This is what I struggled with these last many years, her support coupled with judgment and high expectations. I see her, now, laying those on herself. It makes me just want to stay clear, not say too much, protect myself. Do what I have to do and leave. Retreat to our house. It’s a bit of a cop-out, but I have to protect myself and I can’t save her from the struggles. Maybe there will be an opening for me to say something. I do need to keep trying to get through to her, but I don’t think it can happen at her house. I just feel too claustrophobic.
And…I have a headache.
This just hits my red button about not being known or seen, not being engaged. It’s all about her, and I start mixing up what I’m trying to say. I use the wrong words and Jeff is horrified and mom looks on. I am so thrown back into my growing up years and feel like I have to hide my real self. I feel how I speak a different language, and that I ought to just remain silent. I feel belittled.
I had a legion of specific and general hurts that I’d been processing in therapy, at times from my sick bed even dreaming up operatic confrontations with my mom. Serious pain that I had tried and failed to really communicate to her. But she was a powerful woman, a force of nature—and bucking against multiple myeloma and her own death, a raging untamed stallion. Where was I in all this? And how the hell do I do this?
Here is the mess some of us are thrown into: we grow up under parents who want us to succeed in society (that is: learn the rules, obey authority, fit into the hierarchy, do what you are told, work hard, save money), yet the American ideal is for us to blossom and become full, individuated human beings—to become independent (rebel against the rules to assert yourself, question authority, dismantle hierarchies, if need be to ignore what you are told to do, don’t spend all your energy on work, enjoy your life).
But in becoming more and more true to ourselves, more independent, we often cut off our ties to the family system, stories, culture—even the language of relating. We may become educated way beyond or very differently than our parents. We may break, rebel, turn our backs, hurt our parents in trying to differentiate from them or succumb to the guilt or other circumstance and stay closer in than we truly desire (or what we feel our peers or the culture expects)—or perhaps we don’t feel such a strong need to even go that far from the nest.
Most of us don’t have great resources for talking through this stuff, so we carry on and make the best of it, burying our hurts and misunderstandings under the busy-ness of life. We never circle back around to create a seamless union with them—our parents. And then: suddenly, they need us. Now what?
In trying to explain yourself, there’s a defensiveness there—a hurt, as if you have betrayed the family system, the organization of right and wrong and success and failure, what you speak of and how you speak of it is taboo.
As if you aren’t on the same team. And now, more than any other time, you gotta be on the same team.
It’s a mess. You: your parent: both of your needs. The Past.
I learned three important things: one, I needed to get close enough with my mom to even have the critical conversations we needed to have to clear up old wounds and significant misunderstandings (and most of the time they happened organically--in the car, in the IV room, waiting in line, in a rehab center, etc.). And two: I needed to know myself, how I worked, and what my needs were--and be more clear with her about my limits. And three: I was going to DIE either way. If I did not go into this, I was going to stay my old self, with my old wounds, processing and listening to the hurt and living a life apart from her (but with “her” still in my head and heart). I would die in never becoming my deeper self.
If I did go into this, I would likely be buried, lost, destroyed, hurt again, killed in some way. It wasn’t going to be pretty. I might not survive. And, I might die to my old self and become someone I had never known before—someone I could ONLY become by going through this with her.
My mom refused to stop doing some of the things that could have caused another fracture. She kept emptying the damn dishwasher. To most people, no big deal. But she had a second fracture in her thoracic. “No bending, no lifting—even plates and big bowls. Let it heal.” Doctor says.
Her actions directly influenced my life and I hated seeing her in pain. Stop emptying the dishwasher. We’ll do it. The doctor said…
I wanted her to fight with all she had in her. But I hoped she would be sensible and not overdo it. I wished she would have eased up on herself and gently recognized her limitations. I imagined her being above having old wounds be reopened, having her pride and self-esteem be damaged by me or anyone else.
And, I thought this caregiving thing should have clear roles—like driving a car: I’m in the driver’s seat and you are a passenger. Where’s the problem? No arguments.
In short, I wanted her to be perfect. I wanted myself to be perfect. And I wanted our time together on the roller coaster to be free of conflict and confusion. And most of all, I thought I wanted the hierarchy of Leader:Follower (but now with me as the Leader…), and I still believed in the rightness of our American mythologies, such as the one about the Ideal of Being Independent and not Needing Anyone.
In 2008, I didn’t know we were going to spend the next six years figuring out how to empty the damn dishwasher together—the plates and cups and silverware a bit battered from the Power Wash we’d go through, but having been scrubbed clean.