May is National Stroke Awareness Month, so it feels like the right time to talk about what I learned from having a stroke – someone with zero risk factors. In part 1, I shared the moment the stroke happened. Here in part 2, I’ll share what came after and what I learned from being a stroke survivor.
So where were we…
I had a stroke in the parking lot of Whole Foods 42 minutes after a great 10-mile run on my favorite trail. I had been training for a half marathon. I painstakingly made my way back to my truck. The symptoms seemed to subside. I drove myself home. In hindsight, not the brightest idea of mine but we’ll put that in the bucket with the rest of them.
I walked into the house feeling out of sorts but keenly aware that my kids were home. My 19-year-old son was on his way out the door to work. I waved bye and told him to have a great day with a new lopsided smile. My 17-year-old daughter came around the corner and asked how my run went. I said, in what was I hoped was a neutral voice, “I think I had a stroke. I’m going to call an Uber and go to the hospital. Just to be safe. Nothing for you to worry about. But I have to shower first.”
Needless to say, she said absolutely NOT to the Uber and insisted on driving me. I didn’t argue with her. But I did shower. I’d just run 10 miles in 65-degree weather. I figured I had time, I remembered reading you had 3-4 hours to get to the hospital and get the “stroke drug.” Rightly or wrongly, as a runner, I am extremely dialed into my body and trust my instincts. I knew and felt in my bones that I had at least time for a quick shower. (If, in fact, I was even having the stroke that every fiber in my being told me I was having, which seemed inconceivable, given that I ate healthy, ran 30 miles a week, and did all the right things.)
Taking time to shower was a bad idea, as I was later told by the healthcare professionals who treated me. If you even THINK you are having a stroke, get your ass, no matter how sweaty, to the hospital ASAP. Call 9-1-1.
It was a reality TV montage of moments forever seared into every fiber of my being that I can never run fast or far enough to forget.
Two CAT scans, one MRI, multiple IV lines; one male nurse who insisted he could get an IV into my left arm despite me insisting no one could and the right was best (resulting in excruciating pain and horrible bruising that took 2 weeks to subside – never tell a man no one has ever been able to do something, they will always take that as a challenge); one consult via video with a stroke expert in Colorado; multiple nurses and doctors coming in and out, telling me their names that I could never keep track of even if I hadn’t had a stroke, asking me questions (what happened, what were you doing, what did you eat/drink, do you have a history of this, that, etc.), asking me to touch my right hand to my nose (couldn’t), asking me to lift my right leg (thought I was but I wasn’t and freaked out – immediately asked, “I’ll be able to run again, right?”), asking me to smile (thought I was, but not on the right side); one doctor telling me, “You are having a stroke. You’re lucky because you got here fast and this hospital is a stroke center,” painfully aware that every second my 17-year-old daughter was sitting next to the bed seeing and hearing every word, pale and scared but trying so hard to be strong for me.
She asked if she could call her dad, my ex-husband. I said, “Sure,” choosing in a fraction of a millisecond my daughter’s need to have another adult, specifically her father, show up for her over my desire for privacy and for no one, especially him, to know what was happening to me, especially knowing that being there was not his thing and how this would be another notch on my tender-hearted girl’s “he doesn’t love me” score card. She left him a teary voice mail. He called her back the next evening.
Thankfully, I was able to think and process and speak. I cracked jokes with the nurses. I asked my daughter to find funny Family Guy memes; we talked about reality TV and the weather and all the small talk stuff I guess you talk about in awkward emergency situations where you don’t want your not-yet-an-adult kid to freak out and you feel like the worst parent on the planet for not slipping into the house unnoticed and taking that FUCKING UBER TO THE ER.
Eventually I was taken downstairs for an MRI. The nurses and I convinced my daughter to go home and get some food/rest, as it would be awhile; she could come back to see me after I was admitted. She left reluctantly as they wheeled me downstairs to a waiting room for the MRI. It was only then, when I knew my daughter was gone, as the male nurse I was assigned reached under my gown to adjust the spider web of cords and monitors attached to my chest, that I cried.
I was given tPA . It saved my life.
I survived a stroke with no disabilities. I spent one night in intensive care being woken every half-hour for neurological checks (Christy, touch your nose, lift your leg, smile, what day is it), a blood test, a leg ultrasound and EKG, plus other tests that are a blur to me now.
At the time, they could say more with certainty what did NOT cause it but not what did. It was unsettling. What if it happened again? The general consensus was that perhaps I was one of those rare random cases – that young-er-ish runner type who was healthy, fit, and suddenly had a stroke out of nowhere. It happened, and sometimes, you just didn’t know why.
I was relieved.
I was terrified.
I was discharged.
34 hours after the stroke, I was released from intensive care. I had to wear a heart monitor for 30 days to rule out atrial fibrillation. I would meet with my internal medicine doctor in five days. I would meet with my neurologist in 30 days.
We sat outside licking our ice cream cones on a hot Sunday summer night, watching softball teams and families come and go. She held my hand. Neither of us let go. I did what I always do since the instant I knew of her. I tried to hold and protect her tender heart.
One of my favorite authors, Cheryl Strayed, summed up my life after the stroke perfectly when replying to a woman who had written in to her advice column after having a miscarriage:
“Don’t listen to those people who suggest you should be “over” your daughter’s death by now. The people who squawk the loudest about such things have almost never had to get over any thing. Or at least not any thing that was genuinely, mind-fuckingly, soul-crushingly life altering. Some of those people believe they’re being helpful by minimizing your pain. Others are scared of the intensity of your loss and so they use their words to push your grief away. Many of those people love you and are worthy of your love, but they are not the people who will be helpful to you when it comes to healing the pain of your daughter’s death.
They live on Planet Earth. You live on Planet My Baby Died.”
For the next few months, I lived on Planet I Had a Stroke.
I was scared to run again. I was told I could but nothing further than a few miles for “awhile.” Then I was scared to run anywhere but on a treadmill at the gym in case I had another stroke. What would my kids do if I died on out on a trail somewhere and their dad didn’t answer the phone?
For 30 days, the heart monitor on my chest was a reminder that I was a ticking time bomb. Dressing to hide it on hot, humid summer days was a challenge. It stuck out. It marked me. Something is wrong here. All I wanted was to blend in and feel normal again.
I was scared to run when I traveled for work, especially internationally. I realized I didn’t know how to call for emergency services or check for stroke centers overseas. Suddenly, everything that I had taken for granted before was more complicated and fraught with peril.
I had my stroke on a Saturday. I was discharged from intensive care on Sunday night; I took Monday as a sick day and went to my scheduled work meetings in Chicago Tuesday through Friday. I told no one. I felt, oddly, guilty for not telling anyone and not at all myself. It was almost 100 degrees and humid but I had to wear a sweater to cover that hideous black-purple bruise on my arm. But it felt good to be at work doing normal work things with no one asking me to touch my nose or lift my leg or taking my blood pressure. It helped me feel normal when I felt anything but.
I began lifting and doing yoga within a week. I need to move to feel my best and trusted my instincts that this was right for me. I began traveling again for work two weeks later. As a single mom raising my kids on my own who’s been laid off once before, I follow the Don’t Ask, Don’t Tell approach. I absolutely don’t want to misappropriate this term, but from a writerly perspective, this phrase truly sums up what it feels like to keep something fundamental to who you are and your experience a secret out of fear for the repercussions. Because when you speak your truth, when you reveal your vulnerability, shit happens. You get laid off. You get left. You have visions of living in a box under a bridge with your kids. You don’t sleep for months until you right the ship. You find out who your true friends are.
You find out who you are.
It took me four months to return to Whole Foods. I was scared to lock my truck. I forced myself to do so. I walked past the spot where it happened. I stopped, told myself I was okay now, it would not happen again, and went inside. I kept my phone in my pocket but my key in my hand while I shopped. I walked past the spot again but did not stop. I loaded my groceries in the back and climbed into the driver’s seat. I was a normal, middle-aged woman doing her normal grocery shopping trip on a perfectly normal day.
I laid my head on the steering wheel and cried.
It took me seven months to run that trail again. I did 11 miles on March 14, 2020 as part of training for my May half marathon (cancelled due to coronavirus). It wasn’t my best run, to stay the least. But it felt important to do it anyway. In spite of. Because of. To say FUCK YOU STROKE I WIN.
I posted this on Instagram, smiling at mile 3.5 but scared out of my fucking mind.
I’ve been told that my risk of having another stroke is extremely low. Best as they can tell, it was a combination of factors. History of migraine, a sudden spike in blood pressure, dehydration, an LDL cholesterol level that had always been slightly elevated due to an autoimmune condition, but now needed to be addressed, and an Rx I was taking that had stroke as a potential side effect. (I was aware of it but seriously thought it would not apply to me-young, runner, healthy, etc.)
I always joke that it takes a village to keep Christy going after 50: hair stylist, colorist, dermatologist, Yoda, chiropractor, sports massage therapist, doctors, pharmacist, and now, neurologist. I will be on medications for life to ensure this never happens again. Mostly, I forget. It’s my new normal.
Amazing how life goes on, isn’t it?
I was scared to share my story. Trusting others with these nuggets of my private heart is a struggle, as it is for many of us. What will people think? (I’m trying to embrace the phrase Your opinion of me is none of my business.) I’m single, and guys always look you up. Who wants to date a stroke survivor and all that this may imply? I’m open with my blog to friends, family and co-workers (I only write about things after I feel like it is far enough behind me that I have perspective to make it relevant to others), but do I really want them all to know that I had a stroke? Will they view me differently? Will they use this against me? What will the fallout be? Is this the trauma survivor in me talking? Maybe. Probably.
It’s something writers must weigh when they share their private heart thoughts and experiences. Yoda says that emotional discomfort (for me, it’s pressing “publish” and thinking OMFG I have to delete that post now!!!) is something you have to endure until you are validated. You feel naked and alone until that moment when others say, yes, I see you. I hear you. I may not fully understand. Or, yes! I do understand. Which is all that any of us want. To be seen. Heard. And if all the stars align…understood.
Here’s what I’ve learned from having a stroke:
My vision at nine years old was to write things that make people think; today, I hope it’s to make them think differently. I’ve always thought it would be a waste to survive something and not share that experience to help others. So here goes:
- Have respect for those who nurse you back to health. I’m so grateful for the doctors and nurses who helped me. And that I was able to have someone with me, even though I wish my 17-year-old daughter was not put in that position. I can’t even imagine what it’s like for COVID-19 patients to be in a hospital and not have anyone there beside them as they experience a terrifying health situation all alone. This haunts me.
- Ask for what you need. Despite #1, I was NOT comfortable with a male nurse. I wanted to ask for a female nurse but in my vulnerable state, I resorted to my default state, which is don’t rock the boat. Not criticizing myself, but telling you now – know what’s important to you and don’t be afraid to ask for what you need, no matter what. This can be hard for women and trauma survivors especially. Hear me now: it’s okay to say, I’m not okay with this. I need THAT. Trust that your healthcare providers will understand and if they don’t, ask for someone else. Never give up and never give up your right to ask for what you need in your most vulnerable moments.
- Update (or get) your will and healthcare directives. While I had updated mine after my divorce, it’d been five years and there were changes to make, especially given that my kids were older. It cost me $750 but the peace of mind that comes with it – priceless. My kids will not have to deal with anything, and I KNOW everything will be taken care of for them.
- Ask for help. I’m not good at that. I’ve always been a lone wolf. Suffice to say, me, you…we need to get over that shit. Especially if you are a single parent. Listen, I get it. We’re on our own, we live on Planet Single Parent and we must be self sufficient 24/7. But the moment I saw my beautiful baby’s strained face in the ER, it was no longer about me. Thing is, I never thought I would be in that position, putting her in that position. Figure out who your people are and if you don’t have any, figure out why and fix that. Like, yesterday. Because when life happens, you want to know who to call. You and your kids deserve that.
- See what needs to change and change it. I’d committed to therapy after my divorce; I figured if I was going to leave that situation, I had to figure out how I’d gotten there and change things so my kids and I could move forward differently. And I was in a good place. But my stroke made me realize that there was still more work to be done. I realized that I was not handling changes at work as best I could and that unrelated, unresolved stuff was triggering a lot of stress. It was within my power to respond differently. I worked extra hard with my therapist/coach (shout out to Yoda!) to understand my triggers and find ways to better manage my emotions and my stress. It also helped immensely to confide my feelings, especially my fears, about the stroke with someone who knows and supports me in an objective way.
- Release trauma in your body. I am a firm believer in “your issues are in your tissues.” When I first started doing yoga and acupuncture after my divorce, I was able to release emotions and memories that had been stored for years in my body. Certain yoga poses would trigger tears and sadness, but also a sense of relief and release. Acupuncture, which doesn’t feel right for everyone, worked great for me. I see colors; I have visions; it feels like defragging my hard drive. After the stroke, I starting doing yoga at home, since hot yoga was not advised right away, and did several sessions of acupuncture. It really helped me restore and balance my emotions. This was important, because the emotional impact of having a stroke – as well as strong emotions being part of stroke – affected me for 3-4 months. I was just not myself. Acupuncture, yoga, therapy, journaling and time helped me return back to myself with a renewed sense of who I was and what I wanted.
- Invest in you. If there’s anything I’ve learned after many years on this planet, it’s this: invest in yourself and learning how to dial into your own needs, emotions, weaknesses, strengths – all of it. Don’t expect others to do it for you. We must all make our own happiness. So do stuff that makes you happy – even if it’s one small thing – every single day. Life IS short and we all deserve it.
- Know the small stuff so you don’t sweat the small stuff. I had to redefine my small vs. big stuff in a big way. When you experience a potentially life-altering event, it changes you. You figure out real quick what matters and learn to leave the rest with God.
- You never really know what anyone else is going through. Extend grace as much as you are able. Give yourself the gift of grace and forgive yourself for what you did when you didn’t know better; then extend that grace to others. (Note: this absolutely does not apply to abusive situations.)
We’re all surviving something each and every day.
When the coronovirus pandemic and shelter-in-place orders came about, I was instantly reminded of how fortunate I was to have my stroke months before. I could have been exposed to the virus at a vulnerable time; I could have received a different level of care due to constrained resources; I could have been in that hospital room alone, which wouldn’t be the first time in my life, but would be so much worse now that I’ve learned that it’s okay to trust others and ask for help.
I’m simultaneously devastated for those feeling the pain of this pandemic and relieved that I survived my experience. Sometimes I feel guilty – why was I so lucky, walking away when others’ lives are forever changed? I survived. Others did not. Will not. No one would ever know to look at at me that I had a stroke. I look okay on the outside. Others will never be okay again.
Most of all, I am so grateful to be alive. I appreciate the sun on my face as I run even more now. I can be a source of strength for those I love and care about. I can make up for lost time when I myself was lost. I can parlay the gifts I’ve been so graciously given – to write, to maybe make people think differently, laugh, and smile – and bring light into a world that can be so very dark.
Which brings me to another lesson learned – I would say final but the lessons just keep on coming: do whatever you must to be most you. It’s not only “big” changes, mass protests and 400-page congressional bills that change the world. Sometimes it’s one person’s commitment to bring their best self to their world through their words, story, actions, gifts, time, love. Sometimes, it’s just you, being you. And that is more than enough.
Love to all,