How To Keep Showing Up—Even When It’s Hard: Selma Blair (Transcript)

While I had been wholly and horribly unwell since my son was born in 2011, plagued by fatigue and the breakdown of my skin and connective tissues and a super foggy cognition, pain so intense in my legs and neck I felt I couldn’t even sit on a plane to make the trip. I also had developed a dead leg and a tremor.

I was once again searching desperately for relief. I no longer drank alcohol for what hurt, which only served to put me into a glass of oblivion and crisis, so there was no reprieve from the trigeminal neuralgia, pain in my face and the deep stiffness in my body. The years of drinking on and off I think may be masked and confused the MS perhaps, but I was already accustomed to the idea there was nothing that could be done for me and that it was probably all psychosomatic. I even came to agree, so confused by symptoms that had remained for years.

Motherhood with Undiagnosed MS

My days and nights had become hell on earth, fantastically exhausted with full-time breastfeeding my son and suffering from active MS, which was diagnosed as postpartum depression. I knew I was not one to cook often or well, so I was keen to give my baby as much as I could, how I could. I was just so tired I fell asleep at traffic lights almost.

There were moments of levity, however, when asked by a specialist whom I hired to help me wean off the breast as I felt I was dying and losing too much sleep by his constant wish for more, like a drunk settled up to the bar and I was the bar. I needed a bouncer to help me kick him out. She asked his favorite food and at almost two he replied with a smile, “Boop, boop.” So I kept on feeding him his favorite. I kept on, knowing I had an adorable boy to love and raise.

The Night Before Everything Changed

Now the night before I was set to leave for the shoot and already in dystonia, movement and speech, with an autoimmune system eating away at the protective lipid on my brain, unable to see well or wake up well, unable to sit still, from jerky movements that would repeat in a twisting circular way until I was wiped out with sleep. I fell asleep in the bathtub with hot, wet towels on top of me to ease my spasticity. People thought I was drinking. I wasn’t.

I couldn’t write without placing the letters on top of each other. I really couldn’t. Just, that’s a whole sentence, just one dot and very small micrographia. I couldn’t stay awake to read. My right side was weaker and lagging. I had episodes of vertigo when simply sitting. As I do now, so intense the earth would open and lay bare a deep hole, a deep hole that didn’t exist, but I would scream in hyper-reactivity and then laugh and cry with enthusiasm.

Sometimes when I was younger, I would wake up in laughter, a loud companion to the daytime tears, deep and inexplicable rolling laughter coming from me, unbidden. As I got older, the crying jags would come and go, unprovoked but mostly come. I am an actress and this syndrome of mine was challenging to keep in check. I guess I thought I was wacky, unbridled, unmoored, I figured, so I made it work.

The Show Must Go On

But when the spinal neurologist who had diagnosed me implored me to check into the hospital the next day, that my brain already had at least 25 years of damage, I said it would be impossible. I had a shoot to get to. I had to get on a plane at 6 a.m., mere hours away. He said, “That cannot be done.” And I said, “But MS is an incurable, lifelong condition. What’s the rush? What could be done anyway?” I had always known a version of this duress on my nervous system and there was no way I could start treatment. The show must go on.

I stayed mostly asleep, except to do my scenes. In fact, sleeping was how I actually got the order for the MRI. He watched me falling asleep in his office. I went on to another show and continued down the path of disease progression, made worse by full therapeutic cycles of steroids. The organism had progressed to the point of self-destruction. But gratitude for the doctor and gratitude that I had actually the most impressive assistant. It’s not easy. So you know what I mean. Bonnie, who kept me alive and functioning adjacent, if not just to exist. He took care of my son, bless you, and organized my doctor visits. He turned out to be my only close friend in the fold.

Loss and Friendship: Remembering Carrie Fisher

You see, in addition to progressing into disability and aggressive treatments, I had already lost my favorite friend, the great Carrie Fisher. I lost a good friend to suicide a few years earlier and was left haunted by their sudden departures when Carrie died. And when my mother died, I cried into the night asking her to come see me somehow. I could visit Carrie in her films, and when I could manage it, I reread all her books and cried and cried with missing her energy here on earth.

I remember her one-woman show, “Wishful Drinking,” where she stood on stage, stated her name with twinkling lights behind her, and said, “I am Carrie Fisher, and I am 52 years old.” I am 52, as I have said. I am no Carrie Fisher, but I have also lived a life full of the slings and arrows of outrageous fortune and extreme lows, addiction, and dental pain. We had something really big in common. For better or for worse, we were true to ourselves and also felt preternaturally inclined to lessen the stigmas people faced. We can manage that and then get back into bed and watch the classics. Now I’m even in some of them.

By the way, I asked my son if he had watched anything other than “Cruel Intentions.” He is 13, so I mean, it makes sense. It’s a classic. But he answered that he didn’t much go in for the black and white films. He may be joking, as I was born in 1972 and not before the Great Depression. Perhaps he just associates me with a Great Depression. Either way, it made me laugh out loud.

Understanding Pseudobulbar Affect

Although, as I said, I may laugh even when I’m asleep, because years of untreated relapsing MS left me with PBA, Pseudobulbar Affect. It was one of the most interesting diagnoses I’ve ever received. Like MS, which was so much a part of who I was, even though not recognized in someone who also was so able and athletic once, although not ever quite well enough to excel, hardly in most sports. I’ve always had anemia, postural orthostatic tachycardia, and Ehlers-Danlos Syndrome. They are often found in people with MS. Perhaps it is just the extra stress which contributes to a nervous system run amok.

The PBA was finally diagnosed when I couldn’t stop crying. Not just crying, but wailing. When I have reached my limit, the condition leads to intense aggravation. I am like a child who must be put down for a nap. It is misrepresented as a severely moody personality, which I am guilty of.

Before my friend, Nancy Ryder, was diagnosed with ALS, she too had bursts of laughter. Sweet, merciful laughter. She cherished that time before the disease progressed and took her voice, her laughter, and her life. I was exhausted and agitated from these comorbidities, but now I could forgive myself for all the ways I had let myself or people down over the years before diagnosis when I absolutely could not bear to leave the house without falling apart. I mean, this is common with MS. I mean, the fatigue is, anyway.

So my RMS may look different than others, and also nobody has the same MS, although there are many similarities. My weak side started out as my right and then became my left side. I still have complete numbness on the left lower half and sometimes walk with a dropped foot. I go in and out of dystonia, mostly when really overstimulated, or in the sunshine, or when warm, in hallways, from sitting to walking, or when in distress, or simply focusing.

It played with my mind for someone who thought they had psychosomatic problems to begin with, but I have come to understand it better and prepare for it in time to avoid remaining in the speech and movement traffic jam of my brain. Otherwise, only sleep will give me relief from the spasms.

Finding My Way

I am doing really well now. I am relapse-free for almost two years, and I seem to have most of the other glitches under control. I do need more time in silence and in the shade or in bed than the average Blair. But I exist, more present than I ever could before, because I can trust myself better now. I am learning my story now, after so many years.

I avoid caving into sadness when I have the wherewithal. I am not happy all the time. I am endlessly inappropriate, but mostly polite. I wake up more tired than when I fell asleep. I make mistakes. I try my best. I am a solitude now. It helps. My mother was as well, more or less. She said I would never marry again, because I am a loner. And I may not. That’s okay. And I may be. But also, ones with chronic illness tend to be. We have to cut out the superfluous to make energy for what must be done.

I am strong-willed. I am a lover of all things which comfort and propel us to our next step. And I feel humbled by this life. I am grateful, completely humble and of service, and now I just show up as best I can.

Recent Challenges

But this week has been a doozy, and it would have kept me busy and weak and foggy for months. I have recovered so much, and it has taken ages since diagnosis to find the right doctor for me and my condition. This doctor found the right management of my disease, and I came to a place to trust her. So I thank her deeply for having helped find me. And to the few who have loved me enough to know my well-being helps me raise my son, my closest reason. And my kind and wonderful fans, actually, who showed me the kindness of strangers and my darkest.

This week shook me. Dental surgery and a separate infection and then a separate infection and then a sickness. I don’t feel my bladder now, so I just have to be careful. When I have an infection, neurological symptoms show up more, and I must remain calm and address the issues.

Life’s Fragility and Strength

Gosh, our lives are fragile. A teenage child was killed in the school parking lot on Wednesday afternoon, leaving a chill so hot with grief. It is all inexplicable and life-ruining. My heart breaks every day for all of us in so many ways. And I feel bereft from the loss of all my adults, best friends from addiction or suicide or betrayal, or just because it is just simply our biggest event that has to happen in our lives no matter what after birth.

Our lives are so fragile and our will can be so strong. We can be blindsided by incomprehensible news on a Tuesday afternoon while searching for our keys in a bag full of lipsticks and dog treats. And we can also feel the hand of God reach down on any given Thursday and that deus ex machina can set off a chain reaction which will keep this thing going. This life of love and fear, laughter, and howling with waves of grief. Incredible things can happen. Everything will change anyway.

Keep on showing up. Thank you. Thank you so much.

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