Muscular Dystrophy

Something I came across thought it would be valid in many situations.#Anxiety #BPD #OCD #MuscularDystrophy #RareDisease #ChronicPain #DDD #MDD #PeripheralNeuropathy #

Hi all. Here’s my latest Substack post about my body forcing me to redefine my relationship with independence…

“Suffering begins to dissolve when we can question the belief or the hope that there’s anywhere left to hide.” - Pema Chodron

When we live with certain privileges, we often take them for granted. And things are often easier to take for granted until they're taken away or lost.
Unsurprisingly, independence for me is very much alive in my body and my limitations, and in how much I have to depend on others in ways that I would not have chosen. I feel deeply grateful to have people in my life who I can depend on in this way, and it has been and continues to be a stretch for me.

In Western culture, we tend to conflate independence with counter-dependence, the latter being a badge of pride. But to be truly independent, you must be able to be dependent and depended on.

I grew up extremely counter-dependent emotionally. I did not share my fears and vulnerabilities with my parents or with anyone. I kept them locked away, even from myself. Vulnerability was a foreign existential threat. I didn’t start going to therapy until after I graduated from college. I had no language for anything I was feeling. I was hiding from myself and others, and no one came looking.

It was the prospect of losing my physical independence that crowbarred that door open, along with some close friends, therapy, love, and a body that refused to comply with secrecy. I could not hide from the world, and I could not hide from myself.

The Unrelenting Teacher

In my early twenties, I would lie in bed, imagining a future in which I couldn't walk. It felt impossible to truly grasp at the time since I could walk freely, but it also felt like time was bending in on itself, as if I were getting a whiff of my future self.

I’m almost 50 now. I can still walk with assistance in the home, but I have lost my independence in so many ways. I don’t drive anymore. I use a wheelchair outside the home. I need help getting ready for bed, getting out of bed, getting fully dressed, showering, and lifting things. My body forced dependence on me. It laughed in the face of counter-dependence. If imagining my future self was a crowbar, the reality has been a nuclear bomb.

Years of hiding from the world and from myself have evolved in a beautifully messy way into this. We hired our nanny ten years ago when we moved to Austin; our daughter was 1 1/2. I recall my wife saying that we'd probably only need her for three or four years full-time. Ten years later, and she lives upstairs. I’m such a private person. Having someone in our personal space is a big deal for me.
I depend on her for so much. She helps me shower sometimes, helps me put my shoes on, organizes my supplements with me, makes my coffee, cuts my toenails, has helped me up off the floor countless times when I’ve fallen, and she puts up with all of my craziness. We have such an intimate relationship that I couldn't have imagined ten years ago. It’s not what I would choose for myself—I’d choose independence. And yet, it’s beautiful and tender and real, and I’m unbelievably fortunate to have a wife and a helper who are so devoted to me.

That said, one of the most challenging aspects of forced dependence is feeling like a burden, especially with my wife. It makes me angry at times to have to depend upon her in so many ways. It’s easier with our nanny/helper because that’s her job. It’s cleaner. She loves to do it. It’s a lot stickier with my wife. We have a daughter who requires a lot from us, so knowing that my needs and demands are placing an extra burden on her feels awful, but I have no choice. It can also feel like caregiving comes with a cost in the partnership. It’s not what we signed up for. It’s not what either of us would choose, yet here we are.

I witnessed how the spouse/caretaker relationship played out over time with my parents. They loved each other, were devoted to each other, worked together, and there were layers of mutual resentment, loss, and unprocessed emotions with an unrelenting and ever-increasing demand posed by my mom’s (and my) degenerative condition. My mom clung to whatever strands of independence she could, which meant, among other things, that they waited a lot longer than they should have to get help.

I learned from witnessing their struggles that I wanted to seek help as soon as I needed it to protect my relationship with my wife. I did, and it’s still tremendously hard. The struggle and the intimacy are inextricably bound. We have many tender moments that involve caretaking. It’s embedded in our intimacy at this point. And the loss implicit in the dynamic is palpable, too. It’s a complicated stew.

What has emerged as my body has broken open, as my heart has broken open, and as my defenses have broken open is love, vulnerability, and strength. I have learned what it truly means to be a man, what it means to love, to let go, to take care of others, and to be taken care of. So much of this is a product of the muscular dystrophy. The unrelenting teacher, smashing notions of independence and counter-dependence, notions of self and other, masculinity and strength into a powder, fertile ground for the phoenix to rise.
Independence to me is a fiction, a story I once told myself, a former reflection, an artifice as all concepts are. It erodes with time like a canyon, leaving unexpected spaces for rivers to run through. There are moments when I feel caught in the current, fighting against it for my life, and others when I am simply floating, letting the water hold and support me.

What notions of independence have you had to let go of?

#ChronicIllness #MentalHealth #Disability

The loss of independence

The pain has become a controlling issue in my life Back and forth with medications for pain control cause that's what it has come down to . Not any kind of life for any of us living with progressive muscular dystrophy the braces the cane barely getting me along now. So there may not be a way around it the loss of mobility the constant pain with no cure or even treatment to slow it Down. But there is a way to cope something natural that if you open your mind to can give you a mental break from the suffering. I use color to enhance my life which comes in many forms art,music, nature and plants.

So I give to you a picture of a Lavender Splash Geranium that has come back for two seasons I live at 2700ft so different plants won't make the winter.

Color is our best defense against fate#BPD #OCD #ChronicPain #RareDisease #MuscularDystrophy #Anxiety #MDD #PeripheralNeuropathy #DDD #cervicalarthrosis #FootDrop #

I have had this Rose bush for over two years I bought for Mom on Mother's day. The ground squirrels almost killed it off by eating the new growth but they actually pruned it and we must have gotten 50 rose blooms. I took th#ObsessiveCompulsiveDisorder #ChronicIllness #RareDisease #MuscularDystrophy #MDD #Anxiety #myocondritis

One thing I have learned from being disabled is that dogs bring me the most joy. Years ago I used to walk my dogs three times a week in the hills let them run. My other dog passed in 2022 so it's just my black lab Mayak. One more tool in my kit to combat the depression that goes with muscular dystrophy. He makes my every morning. Anyone else have dogs and do they help you cope?#OCd#MuscularDystrophy #ChronicIllness #BPD