How I Didn’t Deal Well With Worsening Multiple Sclerosis
I tried not to let it bother me. But it did. What my life would’ve could’ve should’ve been like if I didn’t have secondary progressive multiple sclerosis (SPMS). If the disease hadn’t brought out the worst in me. If I didn’t feel like my life was short-circuited. If multiple sclerosis didn’t render me a quadriplegic. If it hadn’t made me so angry. My life might’ve turned out differently.
The professional me was over and done with before I was 40. I had spent most of my 30s battling SPMS. The relapse remitting multiple sclerosis (RRMS) of my late teens and 20s seemed a distant memory. How fast I transitioned from limping — to a cane — to ankle-foot-orthotics — to a walker — to a mobility scooter — to a power wheelchair — and then, finally, bedridden — all in the decade following my 30th birthday.
SPMS was all too eager to swoop in and take over my life and body, most horrible osmosis. It seemed the gods weren’t satisfied with RRMS’s powder puff performance, as I was mostly asymptomatic. So they decided to send in the big gun, SPMS.
It’s like Hulk Hogan checked into the ring and began body slamming me like he did the 7 ft. 4 inches, 529 lb., André the Giant, at Wrestlemania III (1987). But there was no referee to ring the bell. And I, in my obstinance, refused to wave the white flag in defeat or ask for help. So I got slammed again and again and again and again. And that made me increasingly angry.
But did all this anger go anywhere positive? Constructive? No.
It got suppressed. I felt alone in the struggle with multiple sclerosis, even though I wasn’t. My wife supported me, but I couldn’t open up to her. I cut her off, shut down emotionally, and isolated myself. So I felt alone. I’d like to think that my struggle with multiple sclerosis was so herculean, so depleting, so all-consuming that I didn’t have anything left for emotionality. But that’s just bullshit.
Multiple sclerosis filled me with so much anger, so much rage at what was happening to me. It was a perfect storm; these powerful, negative feelings triggered my dissociative behaviors.
Dissociation is a disconnection between (or from) thoughts, memories, emotions, actions, or identity. It can help to deal with stressful situations by establishing protective mental boundaries.
Almost everyone dissociates at one point or another. It’s usually mild, like spacing out during class; the mind wanders, you daydream. You lose connection, briefly, with your surroundings. But, if you have a dissociative disorder, it can be a concern.
My problem was emotional detachment. I wasn’t able to connect with others when I had negative feelings. It wasn’t because I didn’t want to engage. It’s because I was feeling muted, shut down, numb — what mental health professionals call emotional blunting.
My head overheated when I tried to talk about anger-related issues. Throbbed. Sounds, voices, seemed distant. I felt remote, almost out-of-body. I would feel anger, rage, frustration, agitation. But I couldn’t express anything. My mouth would open and close, trying to form words, and only a guttural, gurgling “uh…” sounded. It was like constipation.
The more pressure I felt to verbalize, the more I withdrew, like a turtle into its shell. The protracted “uh…” became a curt, dismissive “I don’t know” or “I’m fine.” My posture became increasingly defensive, intent on ending the non-discussion.
I had been doing this since I was a child. Anger made me regress. “I don’t know” was the same answer I gave my parents when asked what’s wrong. The thing is, I knew how I felt — I knew what was bothering me. But I couldn’t say it. There was a disconnection between my thoughts, emotions, and behaviors.
And it’s not like I was trying to hide how I was feeling. When I was a kid, I could be bawling my eyes out about something. But I would not, could not, tell my parents what was wrong. Even as an adult, I remained unable to verbalize my emotions.
In the rare instances I said anything besides “uh…” or “I don’t know” or “I’m fine,” I intellectualized my emotions. I used meaningless, meandering jargon. It enabled me to focus outwardly on the external world rather than look inwards. Or I tried to solve the problem instead of discussing what was really at issue.
This inability to pursue an affective process led to suppressed anger left to fester. And then, get displaced on a less threatening target. It was horrible: yelling, denying, deflecting, lying. But I couldn’t stop myself from hurting the ones I love, even though I was aware of what I was doing.
My displaced self-hate manifested grotesquely in self-destructive behaviors. Blatant dishonesty. (Purposely?) imperiling myself. Apathy. I was corrupted, lost in this self-created miasma. My sense of right and wrong became clouded, and I rationalized everything away. Worst of all, and unforgivably, my behavior also put my wife and son at risk.
I was a wheelchair-bound-ticking-time-bomb. I had only a vague conception of the danger I posed to myself and those around me.
My wife found the intestinal fortitude to leave me, taking our child with her and moving 3000 miles away.
Alone, I became the sole target for my unrelenting firestorm of displaced anger and self-hate. I spent my now-bedridden time contemplating suicide.
After several years of talk therapy and meditation, I finally began to face my problems with dissociation. I first had to realize and accept that I had issues with emotional detachment. That wasn’t easy.
I blamed multiple sclerosis for everything that happened to me. I never talked about it and then displaced all that suppressed anger. I feel so guilty — so ashamed — for all the resultant damage. I couldn’t hear my wife when she told me what I was doing, so many, many times. And it was our child that ultimately suffered the most. I live with that.
Multiple sclerosis didn’t do this.
Multiple sclerosis didn’t make me unable to deal with negative feelings.
Multiple sclerosis didn’t make me act out.
Multiple sclerosis didn’t make me passive-aggressive.
Multiple sclerosis didn’t make me feel like I was all alone.
Multiple sclerosis didn’t hurt the ones I love the most.
Multiple sclerosis didn’t blow up my life.
I did this. Me. Not MS. Me.
Avowing responsibility for my actions was a step towards dealing with my detachment issues. Multiple sclerosis doesn’t control my thoughts, feelings, or behaviors. For so many years, though, I behaved as if it did. I realize I was afraid, afraid of multiple sclerosis, and of losing control of, well, everything, including myself. So I hid behind walls of deflection and denial and lost everything anyway.
This growing self-awareness is helping me, slowly, to understand my dissociation. It’s a process. Identifying and acknowledging that I have this problem was the first step. I’m able to catch myself when I start to fall into old behavior patterns. I practice mindfulness meditation. Pausing for even just a few minutes of insight helps me to gain control over the dissociation before it spirals out of control.
I don’t feel as angry anymore. I’ve come to terms (more or less) with myself, multiple sclerosis, and my life. But I still haven’t found the root cause(s) for my emotional detachment. I also have depression, always have, and I wonder if dissociation relates to that. I believe multiple sclerosis exacerbated my emotional problems. I’m working to figure this out. To heal. It’ll take time, I know. But I’m patient, now.
I’m not guilty of having multiple sclerosis. It took me a long time to understand that. But I am responsible for how I cope(d) with having multiple sclerosis. There’s a difference.
I can’t change what happened in the past. I can’t repair the damage I did. I can only work for today, tomorrow, and the days that follow. I hope one day I will fully understand why I dissociate.
I know the more I understand myself, the more I will be able to forgive myself. The more I can forgive myself, the more I will be able to live with myself.
I’m a work in progress in my middle age. But progress, at any age, is what’s important.