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Continued from last week's article on Post-Stroke Depression.
A Survivor’s PerspectiveBY JON CASWELL
How did depression feel to you?
On April 3rd, I took a shower, had a cup of coffee, walked my dog, went to school, taught my 1st graders, came home, vegged out, ate supper, walked my dog and went to bed. On April 4th, I couldn’t do any of those things because I was in the ER and then ICU with a massive stroke at age 30.
I felt no hurt or pain in my body. It was silent, but the machines treating me made a lot of noise and terrified me. I just wanted to go home to my dog. UNREAL! I could not be having a stroke! After a month or so, I did go home, but I couldn’t drink or eat, couldn’t work, struggled to walk my dog and couldn’t sleep for fear of aspirating in my sleep.
I didn’t leave the stroke at the hospital or nursing home, and I certainly wasn’t Rachel when I got home again. I didn’t fit my life. I didn’t trust my body. My swallow didn’t work, and most of my body just felt dead. A stroke is a brain attack, they told me. I lost almost 2 million brain cells for every minute I stroked. And I certainly felt fuzzy. There were things that didn’t occur to me to do, things I had done my whole life — like walk my dog or do crossword puzzles, and I felt horrible when I forgot to walk her or couldn’t find words in my head for the puzzles. My mind was different, and I wasn’t in control.
And I couldn’t eat or drink. I’d never given a thought to the gift of being able to handle these basic needs, ever. But when it was gone, I lost my humanity and I didn’t want to exist. But I had no words for myself, or anyone else, about ME. I couldn’t think, feel, act or behave as I had on April 3rd. I was gone. Everything that I took for granted, and everything I did as Rachel, was gone.
I looked pretty normal on the outside — apart from the circus freak show act I saw in my twisted face. My brain didn’t work right on the inside. I could stroke out at any second. I had no control. Fear paralyzed me. I was safe at my appointments with my doctors. But at home, I just wanted to stay in bed. And then I just wanted to stay asleep and not wake up. That’s the truth.
These words were not in my head or coming out my mouth, but that was my reality. You know in the winter when you pile blanket after blanket on top of you at night to keep warm? The weight of the blankets presses you down into your bed. You are kinda cozy and warm but also increasingly unmotivated to move. You just stay under covers and after a while you are so sluggish you cannot move. I felt like that — not really sad or in pain, but not active and increasingly heavy and unable to move. I didn’t see a point to moving. And moving wasn’t easy. So I stayed under covers where I was safe.
What do you want your loved ones and friends to understand about what it’s like to live with depression after stroke?
When I was six months out from my stroke, I sent a TOP 10 LIST OF BENEFITS TO HAVING A STROKE AT 30 to David Letterman. For example: “Having a stroke where you lose your swallow is a painless and easy way to drop 20 pounds in 15 days!” I was finding a positive from my stroke. A producer wrote me back, thanking me for my entry, giving sympathy on my suffering and advising me to enter again with a less personal, more neutral subject.
They didn’t get it or me. It was raw and dark material. I was raw.
So here are my TOP 10 THINGS I WANT FRIENDS AND FAMILY OF STROKE SURVIVORS TO KNOW ABOUT POST-STROKE DEPRESSION ... from someone who knows.
10: I don’t have the words to tell you what’s wrong. I really don’t and I feel bad about it.
9: I’m not in control and I’m confused.
8: I feel like a burden. I was independent. I’m not now and it makes me sad.
7: I don’t know what would help me feel better. But keep loving me.
6: I feel unlovable. I don’t love myself. Touch heals. Hug me.
5: I don’t recognize myself in the mirror.
4: I am working harder than you can imagine, at everything.
3: Are you afraid of me or are you afraid of having your own stroke? Stroke is scary. But I am not scary. Stay near.
2: Life can’t go back to the way it was and neither can I. I’m changed. I didn’t choose to change. I don’t want to change. I can’t deal with any more change.
1: I didn’t survive a stroke to be miserable. I can be magnificent. But I need help and I need HOPE!
It hurts to remember how depressed I was for a long time after my stroke. Fourteen years post-stroke, loving her life, this Proud Stroke Survivor is brought to tears, humbled forever by memories of me then! The depression was 24/7. It is not every day now. The depression no longer renders me useless. I know the depression. It is a part of me and we are friends.
I start my day with coffee and gratitude for the ability to swallow, my kitchen, my dog and my life. As my friend Priscilla taught me, “I’m too blessed to be depressed.”
The Stroke Connection team knows that it can sometimes be hard for family and friends to understand how profoundly post-stroke depression may be impacting a survivor. We encourage you to share this article with the people in your life — and, for those pressed for time, we’ve created a quick-reference sheet that you can print or share via email or social media with family and friends.