*Written in 2007 after I experienced a subarachnoid hemorrhage in my brain.
What Doesn’t Kill You, Part 1
I’m too excited to sleep. I’m trying to lay in bed as long as I can, but it’s useless. It’s only 7:30 in the morning and I really should keep sleeping since I don’t feel that well, but I have a lot to accomplish today and I want to make sure I get it all done before Scott gets home from his medical school rotations later this afternoon.
Today is Friday, August 31st and it’s a big day. It’s Scott’s 24th birthday and it’s also our 10-month anniversary. We have a lot to celebrate and I want to make it perfect.
Here’s my plan: I’m going to go to the grocery store and purchase all Scott’s favorite goodies and make him an elaborate birthday/anniversary package that I’ll stow away in his fridge. Then I’m going to tuck cards throughout his apartment that he’ll find throughout the evening and weekend. Next I’m going to put a whole bouquet of ‘happy birthday’ balloons right in front of his door to ensure he’s shocked the minute he walks in. Oh, and I also want to bake him chocolate chip cookies, speared with birthday candles, and have them waiting for him on his kitchen counter.
I can’t wait to see his face when he comes home tonight! He’ll be so excited, and even more surprised when I tell him I’ve made a reservation for him and all his guy friends at his favorite Mexican restaurant for dinner.
That’s it. I can’t waste another second sleeping. I have too much to do! I don’t even really want to go to the gym, but…I should. I don’t feel all that great – this annoying head cold has been hassling me for days. Runny nose, congested head, sore throat. Eh. Oh well. I’ve exercised in far worse health conditions than this before. I’ll be okay. I’ll just make it quick. A 30 minute run, and then I can get on with my day.
Now that I’m here, I’m happy I decided to work out. I am one of those freaks who actually enjoys exercising. It’s not so much about being in shape – although I can’t lie, I do love looking and feeling fit – but physical activity clears my head. It de-stresses me and actually forces me to breathe. No joke, without the push to inhale and exhale, sometimes I forget.
For not feeling 100 percent, I’m having an amazing run. I barely feel my feet hitting the treadmill’s belt and my breath is perfectly steady. No side-aches. None of my characteristic morning sluggishness. Yep. I can tell it’s going to be a great day.
Oh my God. Oh my God. SHIT! – what is this pain? I’m panicking. I’m gasping, panting, pleading for air. I hit minute 20 on the treadmill and am struck with the most sudden and excruciating agony I’ve ever felt in my entire life. Have I been shot in the neck? My body has broken out in the coldest of sweats and I’m shaking. Tears are streaming uncontrollably down my cheeks. This is all happening involuntarily, I can’t stop it. I’ve never cried from getting hurt before, but this is different. This is my body reacting entirely independently of my mind. I have no control.
I shut off the treadmill and am cradling my head in my hands. The pain has migrated from my the base of my neck over my entire skull and I can barely see. My vision has gone blurry – I’m seeing double – and I’m incredibly dizzy. I try turn my head to the right to see if the runner next to me realizes what’s going on, but my head won’t move. It’s as though it’s bolted onto my body, stuck firmly in place. And any movement from left to right induces sharp dagger-like spasms of pain.
What is happening to me? Is this just a headache? A migraine? It doesn’t feel like that…it feels so much worse. So much scarier. Why can’t I move my neck? Why can’t I see? Why do I feel so faint?
I’m terrified. I’m all by myself and wish someone I knew was here with me. Here to help me, hug me. Tell me what to do. Tell me that this is nothing more than dehydration – I didn’t eat breakfast or drink anything this morning – and that I just need to gulp Gatorade and sleep it off.
But I know better.
I know my body. And that’s why I’m so afraid.
I’m hurting badly, but I can still think clearly. This is good. I know what I need to do.
Get yourself to the women’s locker room, I think. Then you can call for help. Don’t worry Mom and Dad – they won’t know what to do anyway. Call Scott. He won’t answer, but he’ll get the message, and he’ll know what to do. He’ll help me.
I’m hobbling now to the locker room, dragging my once pristine white bag along the filthy gym floor. I don’t care. I’m sweating profusely and shivering. It feels like someone is drilling holes through my skull, and at the same time, crushing it with a vise.
I look in the mirror and don’t recognize the figure reflecting back at me. There’s two of her. The color has drained from her face. She is dead-white. A lifeless ghost. She violently yanks her too-binding sweatband from her head and throws it to the ground. She is cringing in pain. Her hair is disheveled and she clutches her neck, her forehead, the top of her head. This comforting pressure makes her feel better; calmer. As if someone is there, offering her care, love, hugs and support. This ghostly girl is desperate to be held.
I snap to reality and find a bench in an empty corner of the locker room to collapse on. I don’t want the other women to see my extreme lack of composure, or hear the words I am about to say.
I dig my cell phone out of my bag and dial Scott’s number. I am sobbing now.
“Scott. It’s Marissa. I’m at the gym and something terrifying is happening to me. I was running on the treadmill and felt fine one second, and the next I felt the sharpest, most intense pain hit my neck and immediately make it’s way over my entire head. It’s getting worse with each passing second. It happened so suddenly – like a thunderclap. I think …. I think I’m having an aneurysm.“
What Doesn’t Kill You…Part II
I shove my phone back bag into my bag and panic when I realize I can’t make it home. I’m not even sure I can make it out of this locker room. I stand, feeling increasingly dizzy, and keep one hand on the wall for balance as I walk. I do this all the way out of the locker room, down the hall past the workout equipment, and to the front desk. I know most of the trainers at this gym and am searching for any one of their familiar faces to beg for help. But of course, on this day, at this very moment, I don’t recognize a soul. I find a new trainer; she’s a woman I’ve never seen before. I don’t care. I grab her arm with far more force than I intend to.
“Please! You have to help me. I’m really, really scared. Something terrifying is happening to me.”
I’m talking too fast and she’s confused. It’s as though I’m speaking a foreign language through my weeping. I tell her again.
“We have a trainer here who specializes in that sort of thing. Can you make it upstairs?”
I can’t nod, the movement is both impossible and excruciating, and I do my best to follow her up the stairs, around the corner and into a private room with chair and bed. The specializing trainer just so happens to be one of the guys I know, and I’m thankful.
“Maybe this is just a migraine?” He offers. “And you’re probably dehydrated. Did you drink anything or eat anything before you worked out?”
I’m mortified to admit I didn’t. I never do and I know this is bad form.
Maybe he’s right? Maybe this is just a migraine? Maybe I’m making a big deal out of nothing and I’m making it worse because I’m crying and panicked? Maybe after a few sips of water I’ll feel better? And I can leave – go home and bake those cookies for Scott? That’s it. I’m fine. I’m totally fine. I just need to sit here for a few minutes, rest it off, drink water, stop crying, relax my body…and then I’ll feel strong enough to walk home by myself, and bake cookies. I’m too excited about this day to let anything ruin my plan. Cookies. Balloons. Goodies. Birthday dinner. I can do this.
And that’s what I tell the trainers.
I’m laying on their stretching bed now, feeling a little less dizzy, but still unable to turn my head. The pains seem to be subsiding a bit, though not much, and I’ve downed about 3 bottles of Aquafina in under 10 minutes. The trainer I know is rubbing my shoulders and my neck. It’s torturous.
“It’s only making it worse! I think I just need to lay here, in the dark and in silence. This must be a migraine. I’m begging you for Advil. Or anything – please, please, PLEASE give me something, anything, to stop the pain,” I plead. “Just do that, and I’ll be okay.”
He doesn’t believe me. And he doesn’t give me any medication, either. He leaves the room and comes back two minutes later with the manager.
“Marissa, we ARE calling an ambulance. Whether you think you need one or not, we’re doing it. I won’t sleep tonight if I don’t. Okay?”
In a way, this relieves me. The decision is out of my hands. Scott works for EMS and is always telling me how frustrating it is when people call with nothing complaints – he’s gotten calls before for things like hangnails, stubbed toes…headaches. I don’t want to be that girl.
“Okay,” I reply. The tears once again start to well. “I think it’s probably a good idea.”
I hear the ambulance sirens within minutes and am grateful. Maybe this is just a migraine, but the pain is so intense and I’m still seeing double.
They barge through the door and ask if I need the stretcher. No, I tell them. I can walk.
“I probably don’t even need you guys at all. I’m sorry if this is just a headache and I’m taking time away from people who really need it.”
“Are you a doctor?” one of my FDNY EMT saviors asks.
“No.” I answer.
“Well, then, let us determine if you need our help or not.”
I follow them down the stairs, out the door and into the ambulance. They sit me in the back, take my information, and strap me in. The instant the wheels begin to move, I feel sick. My head resumes its throbbing and my stomach starts to churn. I’m maniacally running my fingers through my drenched hair, and applying pressure to my pounding head.
What seems like a lifetime later we arrive at Beth Israel Hospital. The EMT workers drop me off and I am taken to the emergency room waiting room. There is no one waiting here but me, yet everybody seems too busy to check me in, or even notice my presence. My head is pulsating and I feel sick. I start to cry. Embarrassed, I quickly wipe away the tears.
Scott. Must update Scott. I pull my phone again from my bag and text:
“in emergency room. almost passed out from pain at gym. eyes went blurry. can’t move neck. migraine.”
Two seconds later Scott calls. He’s frantic.
“What’s the matter?”
I don’t know, I say. They aren’t paying attention to me here! No one will see me!
“Okay, just tell me where you are. I’ll call my mom and I’m on my way.”
I shout at him no, not to leave his rotations for this, and not to have his mom come. It’s not necessary. It’s just a migraine. By the time they both get here, I’ll be gone anyway.
I hang up and realize I’m all alone in a waiting room, feeling the most horrible head pains I’ve ever endured in my life, I’m terrified, and NO ONE is attending to me. No one is even looking in my direction. Just like that, I become hysterical. Why isn’t anyone here to help me? Hug me? Comfort me? I want my mom. The tears are coming hard and forceful now and I can’t stop them. With each sob, the hammering in my head gets stronger and more acute.
Finally, I’m checked in and a nurse sees my frenzied state and asks me why I’m crying.
“Is it because you’re in pain? You’re scared?”
I say yes, and try to hug her. She’s taken aback and pulls away. I feel worse. They lead me to a hospital bed that’s exposed to the entire emergency room. Everyone is watching me writhe in pain. A woman who may be a nurse or a doctor examines me.
“It’s probably just a migraine,” she says after I pass a cognitive test, “but let’s do a CT Scan to be sure.”
She hooks me up to an IV – I have no idea what fluids I’m being intravenously given – and tells me once this is done, I will be wheeled to the CT Scan room.
The IV’s cold liquid floods my veins and my body begins to convulse. I am freezing. My teeth are chattering and I’m clutching my knees to my chest in an effort to retain any amount of body heat I can. I look down and realize I’m still wearing my sweaty gym clothes. And my hair, and body, is perspiring from both pain and fear. Now I’m happy my bed is in the hallway, visible for all the nurses to see. Someone quickly bundles me snugly in two blankets. Though I am still freezing.
The IV finishes and a nurse assists me into a wheelchair and begins pushing me to the CT Scan room. It is so far away. It feels like she is wheeling me to China. The movement makes my head spin. I am dizzy. I am seeing triple. Quadruple. I am groaning loudly now, and crying. I’m holding my head in my hands and yelling at my nurse to make the trip faster, smoother. Why is she knocking me into doors? Other patients? Why is she doing this to me?
“Oh relax,” she says, cruelly. “We’re almost there.”
We get to the CT Scan room and the door is locked. My nurse is pounding but no one answers. My heart is racing, my palms are sweating, my head is spinning, my stomach is doing flip flops.
“Why is he not answering? Knock again!” I shout. I am in so much pain and I am wailing loudly. I am in too much agony to care that I’m making a scene. Nurses are staring. Patients are staring. I don’t care. I don’t care. I don’t care.
I feel nauseous. It happens so quickly – out of nowhere – I throw up. It’s yellow and watery and volatile. Some of it lands on a sleeping patient.
“I am so sorry. S..s…s…so sorry,” I stammer to the unresponsive soaked patient, to my nurse, to all the gawking onlookers.
Someone gives me a pink pan to finish the job in. I throw up again. And again. And again. And again. I think I am dying. I am hurting so badly I pray to God to please make it stop…or take me. At this moment, I am alright with that. I don’t want to endure this agony any longer. I am ready to go.
“Throwing up must make you feel better,” the nurse says.
“No,” I say, through tears, “Each time I throw up my head feels like it’s going to explode.”
It does. It’s pounding so heavily now it feels like it’s going to burst. Finally the CT Scan room opens and the man inside asks me how I’m doing.
How am I doing? how does he think I’m doing? What kind of a question is that? I despise him for asking.
“Okay, well all that matters is that you can lay still for 3 minutes while we take this scan. Can you do that?”
I don’t think I can. The vomiting hasn’t stopped and I’m sure I won’t last 3 minutes in an enclosed space without retching all over myself.
Somehow, I do.
I am wheeled back, back through China, back to my exposed hospital bed, and I am throwing up the entire way.
I’m not sure what happens next. I begin going in and out of awareness. Am I losing consciousness because of the pain? Because I am being sedated? I don’t know. I am distressed, though, that I’m not fully here. I want to know what’s happening to me.
I am sitting upright on the hospital bed, my head pressed against my left hand – the only position that somewhat relieves the pain – when I see my boyfriend’s mom bolt through the ER doors. I begin to cry in relief. She races to me, and I hug her. We both have tears in our eyes. At this moment, she is my mom and I know I am going to be okay. Someone is here for me. I am no longer alone. My panic subsides and I know now everything is going to be fine.
Someone, I’m not sure who, sits me upright, puts both their hands on my shoulders and says the following:
“Marissa, your CT Scan showed you have blood in your brain. Do you hear me? You have a bleed in your brain. This is serious. We need to intubate you now.”
I hear them, and cognitively I understand what they are saying, but I am too far gone to have any emotional response. The words ping off me like a bouncey ball.
The doctors want to make sure I’m still with it. “Where are you?” they ask. “Beth El,” I reply. They ask again. “Beth El,” I say. They ask again. “BETH EL!”
I am at Beth Israel. Beth El is the name of a synagogue in Minneapolis. They are now convinced that I am losing my mental abilities.
I am not sure what happens next.
Suddenly, I see Scott in the hall. He is here! Scott is here! He is wearing his white coat and looks like a doctor. He is going to help me. I knew he would. He and his mom are talking to doctors and I am holding my position – sitting with my right hand firmly against my head.
Scott is at my side, holding me. Helping me. I begin to chant words and I don’t know why I’m saying them – this is happening automatically. “Peanuts. Peanut butter. Peanuts. Peanut butter.” Scott has no idea why I’m saying what I’m saying, he’s worried, but also, the randomness of it is funny. He laughs, but not for long. I quickly throw up all over his clothes.
They put me back on the hospital bed and tell me I need to take off my clothing. I am too weak. I can’t get them off. I am wearing too-tight gym clothes and they are impossible to remove. I say this to a nurse and she pulls them off of me. I don’t have the energy to help her at all. I begin to disappear into my pain, and when I come to, I’ve wet the bed. I am mortified and tell a nurse. She assures me it’s okay. I don’t know if Scott sees, and I think about this as I drift away again.
They tell me they need to sedate and then intubate me – stick a tube down my throat to help me breathe while I am out. They tell me I need to lay down. I don’t want to lay down. It hurts my head. I want to sit upright, in my special position. They try to force me down and I push them away. I push away Scott and his mom. I am becoming increasingly agitated. “Get away from me.” I push more. I shove. I don’t want to be handled. I just want to sit here, in this position, feeling no pain.
Scott and his mom are both medical professionals. They, along with the doctors and nurses, know my increased agitation means my condition is worsening. It means my brain is becoming more and more affected and time is now of the essence. Beth Israel doesn’t have a neurosurgical unit and it’s necessary to get me to a hospital that does as soon as possible. It’s very likely I am having an aneurysm and will need surgery immediately. This condition, blood in the brain, can be life threatening and in many of the best cases leads to impaired cognitive functioning. They need to get this tube down my throat, rush me to a different hospital and put me straight into surgery. An angiogram will let doctors know what is happening inside my brain, and what consequent course of action needs to be taken.
Scott’s mom secures a room for me at Columbia – one of the best neurosurgical ICU’s in the city – but as I’m rapidly deteriorating, it’s decided there’s no time. It’s too far away and it’s very possible that I won’t make it. They call the closer St. Lukes Roosevelt Hospital and tell them we’re on the way. Scott, who has been busy contacting my parents and siblings, obtains an ambulance for us and we’re set.
They sedate me, but not enough. I am still feeling and thinking. They shove the breathing tube down my throat. Choke! Cough! Gasp! I yank it right back out.
“Didn’t you sedate her?” Scott questions the medical team. “She has to be completely out in order for you to intubate her!”
I am sedated more. Slowly the pain diminishes. The room darkens. Scott, his mom, my nurses and doctors all begin to fade, fade, fade away.
What Doesn’t Kill you…Part III
I wake up and I’m in a strange room. There is blue paint chipping off the walls. I don’t know where I am. I’m not scared, though. I don’t feel anything except tired. My eyes are drooping and my limbs feel limp.
I can hear people around me talking.
“Is she going to be okay?”
“What exactly happened to her?”
“She was rushed here in an ambulance.”
Why is everyone talking about me like I’m not here? Am I here? I don’t even know. I feel like I’m floating outside of my body, watching this scene unfold, these friends and loved ones of mine all gathering here, discussing me.
I open my eyes as wide as they’ll go to show everyone that I am here. I want to ask them questions. I want to know where I am and what happened to me, but when I open my mouth to speak, I choke.
“She’s awake!” Someone shouts.
I am wheezing, panting for air. I think I am suffocating. Someone rushes to my side, and grabs my hand.
“Just relax,” they say, calmly, “you don’t have to try to breathe. The respirator will do it for you.”
My eyes close for a minute, or more, and when they open I see my parents. My parents are here? Whatever has happened to me must be serious because they have flown in from Minnesota to be my side. I am drowsy, and not sure if this – any of it – is really happening, or if it’s just a dream. But I am overjoyed and so thankful to see them. I want to hug them. I raise up from my sleeping position, but Scott races to the bed and gently lays me back down.
“You can’t do that, Marissa. Look, you’re connected to IV’s and your arms are strapped down so you don’t yank them out, or the respirator. Just stay laying on your back, okay?”
I hear him, but I’ve already forgotten what he’s said.
I am so tired.
Mom grabs my hand. “I’m here, Lovey. I love you so much. I’m here and I’m not going anywhere. I promise you.”
Dad does the same. I am finally at peace.
I am fading in and out of sleep, and awareness. Their voices are rising and falling and every so often I hear my name. Am I here? I can’t remember. Is this a dream? Am I floating outside my body? I don’t know. I force open my eyes to check, and I see Scott’s best friend sitting on a chair in the corner. “Hi Marissa,” he says. Again, I try, and fail, to speak. Panicked, I choke, until I remember I have a respirator that will do my breathing. My arms are tied down to the bed but there is enough give for me to gesture at him with my hands. I wave.
I am asleep.
My eyes are closed but I hear Scott’s dad. I’m not sure if it’s his voice, or his presence, that stirs me awake. “Hi Marissa,” he says. His voice is soothing and it calms me. I open my eyes and see his kind face at the edge of my bed. I wave.
“Your brothers are on their way.” I have slipped away back into drugged sleep, but hear Scott whisper this in my ear.
My brothers are coming from Minnesota. I am not alone. I am here in this room with blue walls, but I am not alone. I am on a respirator and I am hooked up to IV’s, but I am not alone. My arms are tied down and I don’t know what has happened to me, where I am, or if I am going to be okay, but I am not alone. This is all that matters.
Scott puts my hand in his. “Squeeze to show me how much you love me.” I don’t have any energy but I squeeze as hard as I can. “Wow!” He exclaims,”you love me a lot!” He’s right. I do.
My room is filled. I am so happy, and thankful for this, and I want my family, Scott’s family and my nurses, to know.
I cannot speak, so I sign. This is my way of communicating. I spell M-O-M. No one understands and I am frustrated. I spell it again, and again, and again. No one gets it. I want to scream! I am angry with myself because I know I am signing sloppily. My fingers feel drunk. A nurse brings me a notepad and pen, but my arms are strapped down and I am so sleepy. My messages are incoherent. I feel like I am drawing in my sleep.
“I think she’s drawing hearts,” someone says.
“Are you trying to tell us that you love us?” My dad asks.
I nod, yes. This is what I am saying. That I love these people – my parents who have flown in, my brothers who are on their way, Scott, his family, the nurses. I love these people who have come for me. They are here, and I am no longer in pain by myself.
I draw hearts in the air with my hand. Scott thinks they are circles. “I don’t understand?” he questions. “Why are you drawing circles?” I throw my hands down on the bed in exasperation. I am annoyed. Get this tube out of my mouth. I want to talk, tell you what I’ve been through, tell you all how much I love you, and I can’t. I can hear you talking about me, to me, but I cannot respond.
“Are you trying to draw hearts?” Scott questions. Yes, I nod emphatically, I am! I am so relieved he gets it! “Do you know who loves YOU?” He asks. I do, and I point at him. “That’s right, baby. I love you soooooo much.” There is a tube stuck in my mouth, but I smile anyway. It’s an automatic response; he makes me happy.
I don’t know what happens next. I don’t know when the voices disappear or when I stop signing. But my head feels heavy and I want this day to end.
I am asleep.
My eyes blink open and I am immediately afraid. I see blue walls. The paint is chipping. Where am I? There is blood in my brain. What happened to the blood? Is it gone? Did I have surgery? Am I going to be okay? What is happening? Why don’t I know these things? Why hasn’t anyone told me? My parents are here. I remember, I saw them last night. Did that really happen? Are they really here? Why are they not in this room with me? I need them. I want my parents! Are my brothers here? Someone said they were coming? Am I making this up? Did I dream it? Did I have an aneurysm? Am I going to die?
I am frantic.
I am gulping for air now. I am wheezing and choking and I can’t breathe. Oh my God, I can’t breathe! I am lightheaded and I think I’m going to faint. I try to sit up and raise my arms – I want to flag down a nurse or doctor; someone to pull out whatever this thing is that’s blocking my air passage – but I can’t! My arms are tied down! Am I a prisoner? have I done something wrong? I’m going to choke! Oh my God, help me!
Two doctors outside my room see me struggling. They are walking toward my room now and I am relieved. They open the door and step inside. They are here to save me. I am flopping wildly on the bed like a fish out of water. Get this tube out of my mouth! Untie my arms! Tell me what’s going on!
“She’s agitated. Let’s sedate her and let her sleep.”
No! you can’t sedate me! I need to be here – awake and with it. I want to know what’s wrong with me.
I think this loudly and hope they’ll hear. I am infuriated I can’t tell them this with spoken words.
I start to sign frenziedly. “No, no, no. I’m choking! Take it out!”
A doctor, I am not sure what he looks like, leans in really close and says, “Okay Marissa. We just need to make sure you’re capable of breathing on your own. We’re going to leave it in for 20 more minutes to ensure you can breathe without it. Just relax. Try to go back to sleep.”
They leave the room and I keep flopping. I remember being little and getting x-rays taken of my mouth at the dentist and having these same anxiety attacks. They would stick that thick black plate in my mouth, blocking my air way, and I didn’t know how to breathe through my nose so I would soon start to choke. I’d gasp for air, my arms and legs would flail and I’d bounce up and down on the chair until they removed it. I am feeling that now. I try to talk myself through it.
Breathe through your nose. Getting hysterical isn’t going to help. You have to lay here for 20 minutes like this, so just stay calm. You won’t choke.
I lay here for a while wondering how I’m going to make it through an entire 20 minutes. I think of Sabra dancing. She is a beautiful dancer. Her movements are so graceful and serene. I imagine her leaping through the air, her white skirt like a sail floating behind her in the breeze. This quiets me for a moment but I don’t think I can maintain this zen for 20 minutes. All of a sudden it hits me: There’s humor in every situation. Even this one. If I can think of all the funny things about this ordeal, maybe I can relax and time will go by faster.
I’ve been begging my parents to come visit me in New York for 2 years now…I finally got them here! And I’ve been telling Scott all week that I had this HUGE surprise to give him on his birthday. I definitely gave him one, alright. Hm, what else? Oh yeah, I’ve been wondering how, and when, my parents would meet Scott’s. Check! And really, this is so typical me: anything to be the center of attention. And I followed my own philosophy: anything worth doing is worth doing in a big, dramatic way! I’m smiling now. This is helping so much.
I’m in such good spirits that it seems like 5 minutes later when a doctor reappears at my bedside. “We’re going to take it out now.” He does, and at first I struggle for breath. I am worried he will think I can’t do it on my own and put the tube back in so I work really hard to gain control of my breathing. I inhale as slowly as I can. He gives me an oxygen mask and tells me to place it over my nose and mouth. I do, and my breaths come easier. He leaves the room, and seconds later, my dad walks in. I start to cry.
“I love you so much, honey,” he says. “Don’t cry. Just relax. You’re going to be okay. Do you trust me?”
I remove my mask. “Yes.”
“Okay, then know you’re going to be just fine, and it’s okay for you to be calm.”
Mom walks in. I cry harder now. I grab her hand and won’t let go. I remove the mask.
“Mom, what happened to me? No one has told me and I NEED to know. I was in so much pain and the last thing I remember was hearing I had blood in my brain. I don’t know anything else. Tell me. TELL ME.” I demand this. I am angry that I don’t know more. This is my body, my brain, and I know nothing.
The monitor I’m hooked up starts to beep. I’m losing air and the nurses peer in from their station.
“Put that mask back over your mouth,” my mom says worriedly. I do and she tells me that I suffered a bleed in my brain. A vein burst, she says, and I was rushed here, to St. Lukes Roosevelt, from Beth Israel. I went immediately into the surgery room. They gave me an angiogram which, thankfully, showed that the bleed had clotted itself. I wasn’t going to need any surgery.
“You are a very lucky girl.” My parents say. “You didn’t have an aneurysm. This bleed stopped on its own.”
“Good thing,” Mom adds, “because on the plane ride here I decided that if they shaved your head, I was going to shave mine too in solidarity.” I am beyond touched. Mom’s thick head of hair is very important to her. I picture her bald, and I start to laugh. This is my first laugh in 24 hours.
Dad says he has two surprises for me, but I already know what they are. Even though last night feels like a dream sequence and I can only remember certain things, I recall the whisper: “Your brothers are coming.” Danny and David walk into my room, and I am overwhelmed with emotion. I start to sob. “Th-th-tha-thank you for coming,” I manage. “I love you guys so much and I am so happy you’re here.” I want to tell them so much more. That yesterday I was terrified. That their being here means the world to me because it shows me how much they care. That even though I live far away, they will always be there for me – on the first flight out – if and when I ever need them.
I feel intensely loved.
The doctors enter again, this time I am more aware. One has long hair and it’s pulled back into a ponytail. The other is wearing glasses. “Raise your hands,” they say. “Now close your eyes. Make fists. Open your eyes. What year is it? Who is the president?” I pass the exam. It is determined I have maintained my mental facilities. My parents agree, they tell the doctors that last night, even under heavy sedation, I problem solved. When I couldn’t speak, I used sign language to communicate. “She’s definitely all here,” Dad assures.
I agree. I am just scared, and I tell them this. I still don’t understand what happened to me, why it happened, and if it will ever happen again. And I am petrified to be left alone.
“How long are you staying, Mom?” She sees the fear in my eyes.
“Indefinitely,” she answers.
It’s comforting to hear, even though I know it’s not the truth.
To Be Continued
What Doesn’t Kill You…Part IV
The doctor comes in. He asks me how many fingers he’s holding up. I say 2. He is holding up 1. “You are seeing double?” David, my brother, asks. I nod yes, that I guess I am. “You’re so lucky that I’m here, and you’re looking at me, then!” Everyone laughs, including me. I need this. I need these people around me lifting my spirits.
I can’t have the light on so I’m sitting in the dark. Anything bright hurts my eyes. I can’t read either. A friend comes and brings me a stack of all my favorite magazines and it is torture. They sit, unopened, at my bedside. Scott brings me my favorite pack of gum and I am dying to chew it, but the action hurts my head. The pack sits on top of the magazines.
People are crowding in my room and I am so happy. I want everyone here, around. I don’t want them in the hall, or lounge room, because I cannot go with them there. I don’t want to be left out of this impromptu party I have created, I want to be the center of it. Plus, I don’t want to be alone. But Kiyoko, my nurse, says I can only have two guests in my room at one time.
“All this commotion is not good for you,” she explains. “You need your rest. I am just looking out for you – you had a big day and night yesterday. You need to relax today.”
I know she’s right, but I don’t care. I tell my mom to pull the curtain in my room so we can sneak people in. The more the better.
It hits me that I haven’t had to go to the bathroom since I woke up. This is not like me and I’m confused. Scott is standing at the edge of my bed and I tell him this. He reaches down and picks up a big, clear bag filled with pale yellow liquid. “This is your urine,” he assures. “You are going to the bathroom. You have a catheter in you.” I am mortified. Not because Scott has just lifted my bag of pee, but because there is a tube shoved in a place where no tubes should go. I shudder and ask Scott when the nurses will take it out. “Just ask them,” he says. “You probably don’t need it in any more because you’re conscious now.”
“Do you love me less seeing me like this?” I ask him. “I’m still all stinky and gross – I haven’t even showered since I worked out yesterday! – I’m in a hospital gown, I threw up all over you yesterday, I haven’t brushed my teeth, I’m hooked up to IV’s and blood pressure cuffs and now I have a catheter in me and you’ve just handled my bag of pee. How can you still be attracted to me?”
“Are you kidding?” He answers. He is staring into my eyes now. “I love you more because of all this. I don’t know what I would do without you. That’s all I kept thinking about yesterday at Beth Israel, and on the ambulance ride over here and while you were in the surgery room getting your angiogram. I went into doctor mode trying to help you, but when I was waiting for that angiogram to be over, not knowing whether we were going to get bad or good news, I broke down. I don’t know what I would do without you in my life. I love you so much, Marissa. So much. And you are more beautiful to me now than ever.”
I have tears in my eyes. I assure him they are tears of joy, not fear or panic as they have been up until now. He is my lifeline. I feel as though he and his mom have saved me. Without them, how would my parents have known? Without them, everything would have moved along slower and I would have been in agony for so much longer. Without them, I may not have this bed in the ICU at this great hospital. Without them, I wouldn’t have anyone explaining to me what really happened, in English terms that I can understand.
Scott tells me a vein burst. He says it’s a fluke, it can happen to anyone, and the doctors told him running and exercise had nothing to do with it. It would have happened no matter what I was doing, whether I’d been sleeping, on an airplane. It’s a good thing I was at the gym, though, because they insisted I call the ambulance. If I were at home, or elsewhere, I probably would have been too embarrassed to do it. I would have chalked it up to a terrible migraine and taken Advil – the worst possible pain killer to take with a bleed.
This vein had been weakening and there was no way to know that. All at once, it popped. The area in my brain where it broke is the most dangerous to have this happen in. Scott tells me I could very easily have not made it, or lost any number of my cognitive abilities. But I am blessed.
I suffered what is called a Perimesensephalic Hemorrhage. This particular type of bleed is benign because it clotted itself without surgery. I am also lucky that it was a vein, and not an artery, that burst. Had it been an artery, I would be in far worse condition right now. Arteries carry blood away from the heart and therefore flow with more force than do veins. If an artery broke, I would have had an aneurysm, and I would not be feeling, thinking, experiencing all this right now. “We are so lucky,” Scott says again. After he’s explained this to me, I understand better and feel immensely fortunate. Why was I saved? I have angels, I must. I am not alone because they are watching over me, God is guiding me. I close my eyes and say a silent prayer. I am thanking the Universe, these angels, God. I am thanking them from the bottom of my heart.
Scott’s mom chimes in with something incredible. “I was supposed to go to Newport, Rhode Island yesterday. My friend was set to pick me up at 7 a.m. yesterday, but she got a flat tire so we didn’t go. I said to myself, ‘There must be a reason I couldn’t go to Newport today’, and look what happened.” She says this, and I get chills. Everything happens for a reason. I wasn’t going to go to the gym, but I forced myself to go. Thank goodness I did, if I were home, I wouldn’t have called for help. At the gym, the trainers refused to give me Advil even though I was pleading for it. Thank goodness for this. I was originally set to go to the very remote Fire Island this weekend for the weekend, but I cancelled last minute to spend Scott’s birthday with him – if I’d been there I would have had to be emergency flown back to the city. Everything lined up for me to get here, and get well. I feel like I am being divinely guided. I know now I am never alone. As I begin to realize this, I repeat my silent prayer. I repeat it again, and again, and again.
Kiyoko enters my room and banishes my guests to the lounge. “She needs her rest! Don’t you want her to get better?” They scurry out like frightened mice. This makes me laugh. They are afraid of my 5’1″ nurse with the tiny frame who speaks broken English. I like Kiyoko. “I’m sorry,” she says, “but you are my main concern, not them. You are too nice to tell them you need them to leave, so I’ll do it for you.” I smile, and nod. But really, I don’t want them to leave. I know she’s probably right – I need a nap. But I want them – my friends, Scott, my family, his family – all here with me. They are making me laugh, and because of that I feel well.
“Kiyoko,” I begin, “Will you take this catheter out?” She thinks for a minute, then agrees. I am scared for what is about to happen, and I tell her this. “Don’t worry! You’re a woman. You can handle this!”
I giggle – not very woman-like – and before I know it she’s yanked it out. It doesn’t hurt, I just feel pressure and a tug. I’m so happy it’s gone. Now I can move about my bed without fear of pulling on it. Five minutes later, I wish it were back. I ring my nurse call button – this button is my new best friend. Kiyoko is at my side in seconds. I have to go to the bathroom, I tell her. Where is it?
“I’ll bring you a bedpan,” she says. Bedpan? I don’t need a bedpan! Can’t she just assist me to the real bathroom? Kiyoko shakes her head when I ask her this. “No, no, sweetie. Not here in the ICU. Just for today we’ll use the bedpan in your bed, and tomorrow we can move it to this chair right here.” she is pointing to a chair – it looks like a makeshift toilet – next to my bed. The bedpan goes in the center and I sit on it and do my business. I am humiliated even thinking about it.
She slips the bedpan onto the bed underneath my hips. I don’t think I can do this. I have pee-fright and nothing will come out. And if it does, I don’t know how to make it stay in the pan and not splash over onto my bed. I don’t want to lay in pee. I am uncomfortable in this position, holding myself up by the bed’s side rails, laying back with my head rested on my pillow, legs extended in front of me and sitting on this bedpan. Just do it and get it over with, I tell myself. You don’t have a choice. I start to go, and some of it lands inside, but not all of it. I am scared the pan will tip over and my sheets will be soaked. This doesn’t happen, but the bed gets wet anyhow. I finish, and ring my button. Kiyoko appears, she is so kind, and helps remove the pan. She cleans it out, and then cleans my bed. Fresh linens and a pillowcase change. Do we have to go through this every time I go to the bathroom? I have the tiniest bladder. Kiyoko senses my concern.
“Next time, we try the chair,” she says, pointing to the contraption next to the bed. I am relieved. Thank goodness, I tell her. She laughs.
“If you ever need anything, to talk, if you’re lonely, you just ring that button,” Kiyoko says. She has made me so happy by saying this. I don’t feel lonely or a need to talk now, with all my friends and family here, but I will when they leave. I am already feeling terror at being left alone, and they haven’t even gone yet. Kiyoko leaves and I am by myself. I cannot watch TV because it hurts my eyes. I cannot move around in my bed because there are so many IV’s in my arm I am afraid I will roll over onto them. I cannot lay down completely because my head has to be elevated – my brain is still very swollen and I have to help the blood make it’s way out of my head and down my spine. I am laying, head up, body still and stiff, arms upright and outstretched so the IV’s don’t catch on the sheets, and I am miserable. I can’t sleep like this. Where is my family? My friends? Scott? Why don’t they come back in? I am lonely.
Kiyoko returns an hour later and I beg her to find my mom. I need her, I explain. She can be here – I can sleep with her here. Kiyoko agrees and fetches her from the lobby. Mom enters my room and I am thankful. I need the company. “Lovey, I’m here. Are you okay?” She stands next to my bed and holds my hand. I tell her that I’m uncomfortable and afraid. She understands and wishes there was something she could do for me. “Just stay here, okay?” This is all I want. She says she’s been trying to let others take their turns in my room because she’ll be here all week, at my side. “I understand,” I say, “but you’re the person I need near me the most.”
I don’t know where I am – where is this hospital located? My guests tell me the Upper West Side, but I have no concept or mental map. I don’t even know what it looks like outside this hospital room. I am weak. I am still seeing double – sometimes triple. I am now going to the bathroom on my makeshift toilet – the chair next to my bed – and it is the most excruciating experience. I cannot get in and out of my bed alone. Each time I have to go to the bathroom, at least twice an hour, Kiyoko has to lower my bed, help me out and make sure none of my bazillion wires get caught on the bed frame. It’s not really a bazillion, but that’s what it seems like to me. I am attached to machines and bags of medicine and saline. I feel like I’m in jail. Kiyoko closes my curtain – this is my only semblance of privacy – while I go. She waits there until I tell her it’s okay to come back. She helps me back into my bed, this takes at least 5 minutes, and situates me so my wires aren’t in my way. She strategically wraps them around the bedpost and each time she does it I am amazed. I hope all the nurses I have are as skilled at this as she is.
Night time arrives and I am squirming at the notion of everyone leaving. My parents say goodbye, they have had an exhausting couple of days and I know they deserve some time away from this depressing place to relax, and sleep. My brothers say goodbye too. They both have flights back to Minnesota later in the evening. They ask if I want them to stay for another day. I do, but they both have families at home-they are wonderful dads. At first I ask Danny to stay, but then I realize I am being selfish. His children need him more. He and David leave. Scott’s mom is here. She has been wonderful throughout all of this – a huge source of comfort. Her fiance has come back from Newport, Rhode Island to see me as well. They have spent the day with me, and getting to know my family. This makes me happy. They say goodbye too – I tell them to go back to Newport and enjoy. I know I am going to be okay. Scott stays later, until maybe 8 or 9, and asks me if I want him to sleep here on the chair in the corner. “You need your rest. You need a break, too. You’ve been through a lot and we can’t both be sick and tired. One of us has to be healthy to help sustain the other.” He nods.
This is the first private moment we’ve had since everything has happened. He is at my bedside, running his fingers through my dirty hair and massaging my head. This feels amazing–it’s releasing some of the pressure. I can see in his eyes that he is emotional. I am taken aback by this because Scott never gets emotional. I have never really seen him cry, or even tear up. There are tears in his eyes now. “I was so scared I was going to lose you,” he says. “you cannot understand how relieved and happy I am that you are okay.” I do understand. I am equally as relieved and happy. “I worked on you in the ambulance,” he tells me. “My mom rode up front, and I was in the back, with the EMT workers, and I helped to make sure you stayed stable.” I sense his tension. “I have been working EMT for years now, I’ve worked on so many people. I have seen everything. But to see my girlfriend who I love so much on a respirator, I’ll never get that image out of my head. It is terrifying seeing a loved one in that condition, and not knowing if they’re going to make it or not. I felt so helpless, Marissa. So helpless. It was awful.”
I am consoling him now. I cannot imagine how difficult it must have been for him yesterday. Seeing me in such bad condition. Watching as I deteriorate, and knowing there was nothing he could do to help, or make me better. Maybe he couldn’t make me physically better, but he preserved me emotionally. I tell him this. He is my rock, and at this point, my hero. I want him near me always.
“I’ve learned a valuable lesson in all this,” he tells me. “Every patient I will eventually have is someone’s loved one, just like you are to me, and therefore I need to treat them all with the utmost love and care.” I look at him and am gleaming with pride. This is a beautiful lesson learned.
Scott leaves and I am crying now. I am so scared to be by myself, alone with my thoughts and memories of this horrifying ordeal. Every time I close my eyes, it is what I see, and feel. I recall the exact instant the pain hit. The agony washes over my body all over again, and I begin to writhe. My heart beat races and the machine I’m hooked up to starts to beep. I inhale deeply, slowly, to lower it, and I think of Sabra and her beautiful dance movements. I think of Scott, my family. I think of everyone who has come for me and those who have sent along their prayers and well-wishes. I am once again calm. I fear that this pattern will reoccur many, many times throughout the night. I am not sure how I will make it through to daybreak.
A new nurse walks in. She is the same height as Kiyoko – she even looks like Kiyoko – but she is not her, and this makes me nervous. Will she be as kind? Will she wrap my wires around the bed frame as perfectly? Will she be irritated that I have to go to the bathroom so many times throughout the night?
“Hi Marissa!” She says. She introduces herself as Kate. She’s wearing a big smile and is chipper. I like her. “Wow, you look a lot different from last night.” She met me last night? I don’t remember. “You were doing all sorts of funny things with your hands. Do you remember? I brought you a notepad and pen so you could communicate that way, but you were a bit too sedated still to write clearly.” My eyes glimpse her pen in her scrub pocket – it’s the kind with many different colors of ink; my favorite from when I was a kid – and I have an immediate flashback. I remember! I tell her this, and I let her know that I was trying to draw hearts. “Oooh!” She says, “that is so sweet.” I tell Kate that I have to go to the bathroom a lot and I apologize in advance. I might make it a long night for her. “Not to worry,” she says. “You are by far the easiest patient I have – have ever had, actually!” She tells me I am the only patient in the ICU who can speak, who is alert. The only patient with any motor abilities at all. I am amazed. I tell her that I probably won’t be able to sleep, and if she is bored and wants someone to talk to tonight, I’m here. She puts her hand on my shoulder and thanks me, and says, “Don’t worry, Marissa. You’ve suffered a trauma to the brain and are in the ICU. You won’t get any sleep anyway…we’ll be in here every hour taking your temp, re-starting IV’s, checking your blood pressure and taking your blood.”
In a way, this relieves me. I won’t be alone at all.
Kate is not lying. My lights are turned out, but the action outside, and inside, my room is bustling. It is a night of no sleep. Even though my temperature has remained at 99, they continue to take it hourly. They have to. My arms feel raw. They have been prodded and poked so many times, and in so many different areas, that they are severely black and blue. I look like a drug user. It is 4 in the morning and Kate comes in and turns on the lights. “Would you like to bathe?” She asks. I would. I tell her that I came here straight from the gym and I haven’t been cleaned since. I haven’t even brushed my teeth. She helps me out of bed and onto the chair. “Don’t worry about getting water everywhere,” she assures. “I’ll clean it up.” I am too weak to do this by myself. Since I’ve entered the hospital, I have slowly but surely lost all sense of dignity and pride. I cannot do even the most basic things by myself. My mom has to feed me because the motion of my hands to mouth is painful. I cannot go to the bathroom alone, and once I am done, nurses see the contents while they are flushing them down a real toilet and cleaning the pink bowl by hand. Everyone, including Scott’s mom and Scott, have seen everything – my unclothed body, my catheter bag, my vomit. But I am not humiliated. I am humbled. And I am grateful for the help.
Kate lifts my hospital robe over my head. I am naked. She sits me on a towel, in my chair, and bathes me with a wet, warm washcloth and soap. It feels amazing. I am so happy to feel clean. “I stink,” I tell her. “I can smell myself.” She laughs, and promises she can’t smell me, but she cleans under my arms, and other places prone to sweat, thoroughly. I thank her at least 20 times. She gives me a fresh robe and changes my sheets. I thank her again. She brings me a toothbrush, toothpaste and a glass of water for swishing and spitting. My mouth tastes like mint and I could not be more thrilled. The hospital has a way of making you feel dirtier, and all-over blech-ier, than you already are. Because I am cleaner, I feel healthier. Kate brushes my hair, and as she’s fighting with my fist-size knots, she promises we can do this cleaning ritual every morning.
When we’re done, she helps me back into bed and tells me she has to start new IV’s. I cringe. She pokes a needle into my right hand – she says the vein is thick there – and I scream in pain. It is not the prick that stings, but the actual fluid flowing into me. It is pulsating. “Is it supposed to feel like this?” I ask Kate. It’s not supposed to feel like anything, she says, as she’s taking it out. This is a sensitive vein. She peers at my other arm and finds a good vein near my elbow’s underside. She wraps a band around my arm and my vein disappears. “You are scared! The veins run away when you’re scared. Try to relax.” Of course I’m scared, I tell her. I think of Sabra and the vein reappears. She sticks in the needle and blood spurts everywhere-on my freshly cleaned sheets, my gown, my pillow. I start to cry. I am traumatized. Kate says we can try again later. She changes my linens again, then leaves me to my sleep. But I do not want to close my eyes. It is 5 a.m and I’ve made it through a night. I wait there, awake and upright, until 7 a.m. when my parents arrive.
Mom feeds me breakfast while Dad reads the paper. I still cannot watch TV and I feel badly because they must be bored. They stay here all day into the night, just waiting, watching, and talking to various visitors who stop by to see me. Friends come by, so do Scott’s family and friends and my old co-workers. Each person that walks through the door brings a smile to my face and the heartwarming realization that I am loved and cared about.
Dad’s phone is ringing off the hook. Family and friends are calling to find out about my condition. Word has spread like wildfire. Everyone seems to know I am in the hospital and everyone is worried. He receives a call from my sister. She tells him that her friend was at synogogue in Minneapolis and heard my name read on the prayer list during services. She called immediately to find out what happened, and to let my sister know she was praying for me. This news touches me beyond belief. People are praying for me. An entire synagogue is praying for me. Am I worth their thoughts? I don’t know, but they are most certainly helping because I am beginning to feel better. I am no longer seeing double and my headache is decreasing. My rabbi calls and so does my cantor. They are adding me to their prayer lists too. I cannot believe this, I am so moved.
I am not allowed to have my cell phone in the ICU. I am utterly disconnected from the outside world. Scott has my phone, he took it from my bag at Beth Israel so he could call my family and closest friends. Like my dad’s, my phone has also been ringing non-stop. Scott is answering all these calls for me, telling my friends in great detail what happened, where they can visit me, and that I am going to be okay. He tells one friend that I am doing “great!” This single word eradicates her tears and lets her know I am on the mend. I want to write about this experience, but I do not have a computer nor can I look at a computer screen or read words. I mentioned this to Scott yesterday, and when he arrives today he says he has written something as a guest blogger on my blog. He asks if I wants him to read it to me. Of course I do. He pulls out his Blackberry-like phone and reads what he’s written. I am overcome with emotion. I tell him it is beautiful – the most beautiful thing I’ve ever heard. I ask him to come to my bedside. He does and I thank him with a kiss. It is our first since August 31st – since his birthday, since the day I suffered a bleed in my brain.
Sleeping feels great, but when I finally get it, I’m woken by Kate or an IV needle or wire catching on the bed. The next night is equally as bad as the first. There is little sleep. There is waiting until 5 a.m., until I know I’ve made it through to the morning. And then waiting until 7 for my parents to come. My temperature is repeatedly taken as is my blood. I am started on new IV’s – this time, there is no throbbing vein pain or spurts of blood, though two of my veins have hardened and are hurting from the pokes. I am given many doses of medication throughout the dark hours: I am on steroids to reduce the swelling in my brain. They are making me emotionally crazy. I feel like a mad-woman, I cannot get through 3 minutes without crying. Add to that that I have been through a traumatic experience, mixed with my consequent fears of this happening again and of being left alone. I feel insane. I take advil every 4 hours for the pain and pressure in my head. I know a half an hour before it is time for my next dosage because my head begins to thump and I feel nauseous. I cannot open my eyes very wide, nor can I look back and forth, or up and down.
In the morning, after my parents have arrived, my neurosurgeon enters my room for another cognitive test. “Who is the president? What date is it?” I laugh and tell him that I don’t know. It is September something, but I have no idea what. I’ve lost track since I’ve been here. “On a scale of 1-10 what is your pain today?” I have been asked this question every day since I was rushed to the hospital. It is my new way to guage how bad a headache is. At Beth Israel, I told them it was beyond a 10. Today, I tell my doctor it is a 2 or a 3.
My doctor, his name is Langer, tells me that soon I will have an MRI. This MRI will let us know if the bleed has totally clotted and healed itself, and if I am okay to go home soon. I cannot wait for this – I want this to happen now. I want to know I’m okay, and I want to break free from this place. He tells me that he has never seen this happen to a person twice. He says I cannot worry that every headache I have will lead to a bleed. “Do you remember the pain you felt that day?” Do I remember? Please, please tell me how to forget. “Unless it’s like that, it is nothing to worry about okay? You will get headaches, and they will be normal.” I try to etch this eternally into my memory. But I know I will forget. I know I will feel head pain and panic.
Dr. Langer says that I should not be afraid to run, or exercise, again. He knows this is a big part of my life, and in a couple of months, I can probably resume normal physical activity. But I am scared. I tell him I am not sure I will ever have the courage to run on a treadmill again. He acknowledges this, and says my feelings are normal, but that he just bets I will. He also says I will soon have a lot of back, butt and leg pain. “Don’t let this scare you. This is the blood getting reabsorbed into your body. As it travels down your spine, it will affect your nerves and you will feel pain, stiffness and impaired range of motion. Don’t worry – in time, it will pass.” In time? I want it to pass now and it has yet to happen.
I am relieved, but still concerned. I hear what he is saying, but my brain is swollen and I’m having a hard time comprehending and retaining. I ask him, his physician’s assistant and Scott to explain it to me at least 10 more times.
Today is Labor Day and it is my third day in the hospital. Kiyoko is off for the holiday and I have a male nurse named Chris. He is nice, but too hands off. He doesn’t help me back into my bed and he doesn’t wrap my IV wires around my bedpost. He brings me a stepladder so I can get in and out of the bed myself. I know he is trying to help, trying to show me I can do this on my own, I can be independent, but I don’t trust myself yet. I am not ready. He waits too long to remove and clean my toilet bowl after I am done using it. I am too embarrassed to ask him to take care of it, but having it here in my room makes me feel even dirtier than I already do. I want my room fresh for when guests come. This is my temporary home, and I am entertaining. I want it clean and smelling as nice as it can be for my visitors.
Chris says I should try to walk today. He says the movement will be good for me. I am so active and I have been confined to this bed, sedentary, for too long. I need to move my body. I agree. I hate this bed. I call it “hell” because that’s what it is. I am miserable when I’m laying, or even sitting on it. It reminds me of my sleepless nights, of getting pricked, of panicking and feeling lonely. My parents, Scott’s mom and Scott are here to help me. My mom helps hoist me out of bed and I am ready for my first walk. I take it with my dad. We stroll around the nurses station at slower speed than a tortoise probably walks, but I cannot go any faster. The light is bothering my eyes and I have pains shooting down my spine and into my tailbone and legs. I am so glad Dr. Langer warned me. I take my next stroll with Mom. We go at the same crawling pace. “You’re flying now!” One of the nurses calls to me from the nurse’s station. “That’s right,” I say, “I’m ready for the marathon!” We all laugh. It feels good. My last lap is with Scott. It is a sweet walk. He begins by holding my hand, but midway through he has put his arm around me and is squeezing tightly. I feel his love. It energizes me.
I take a few more walks that day. I take as many as I can and stop only when I feel dizzy, or tired. On my last walk my head begins to throb and I need to re-enter hell and lay down. I am not happy about this, but I know I have to. For the first time in my life I am listening to my body. It is giving me no choice.
To Be Continued
What Doesn’t Kill You…Makes You Stronger
It is Tuesday morning, the day after Labor Day. I anxiously await Kiyoko’s return, but am greeted by my male nurse, Chris, instead. Kiyoko has today off too, he tells me. I try to hide my disappointment. I don’t want to hurt his feelings. I take another walk around the station, and I am feeling even stronger today than yesterday. Let’s do it again, I tell my mom. We take 3 more laps. I return from my exercise and Chris is waiting in my room with my medication. “You’re getting moved out of the ICU today!” He tells me. “You’re going to the main floor.” I am so excited about this that I actually do a little cheer. Leaving the ICU means no more IV’s, no more machines that beep continuously through the night, no more blood pressure cuffs that cut off my circulation every hour, no more needle pokes and, best of all, it means my own bathroom. No more bedpan. No more ringing my call button 12 plus times throughout the night.
The move happens immediately. I am directed to my new room, just down the hall, and my mom and dad settle me in. This is a bigger room and there is even a window! I am free of wires and IV’s and I feel great. There is a curtain pulled in the middle of the room and on the other side is my roommate. She introduces herself as Ms. Ashley. Half her hair has been shaved off. Unlike me, she has actually undergone brain surgery. Ms. Ashley is older and incredibly kind. “I’m sorry if I am disturbing you, Ms. Ashley. If we make too much noise, please just tell me and I will send my visitors out, or we’ll go to the lounge across the hall.” Ms. Ashley laughs. “Child, I have children and grandchildren. I love noise. It makes me feel alive. Make a lot of it.” I promise to follow orders.
My new nurse walks in. She is tall, thin and blonde and looks about my age. She introduces herself as Katie. I am instantly relaxed. “My best friend is a Katie, and she’s a nurse too!” I exclaim. My nurse Katie smiles and says, “maybe it was just meant to be?” I nod and tell her yes, it definitely is. All of this is – the whole experience. I don’t regret any of it, I tell her. Not even the bleed. It was horribly painful, but I am grateful for the aftermath. The lessons to be learned, the warmth and love I’ve received, my increased reverence for life and the way it’s brought me closer to those I love…my family, friends, Scott. Katie smiles and wraps hot, wet compresses around my hardened veins. They are protruding from my skin and the damp heat will make them soften and hurt less. She tells me she is putting me on an antibiotic to ensure they don’t become infected. “Great,” I say, “more medicine. Just what my already spastic emotional state needs!” She laughs. So do I.
It is the afternoon and I am eating what looks and tastes like plastic chicken when a different nurse comes to my room with a wheelchair and tells me she is taking me now for my MRI. She asks if I am mobile or if I need her help to get from my bed to the wheelchair. I tell her no; I can do it myself. I sit in the wheelchair and she drapes a blanket over me. “It’s cold down there,” she warns. I wave goodbye to my parents – they promise they’ll be waiting in my room for me upon my return – and I am wheeled down the hall, into the elevator and down to the 4th floor. I have never seen any floor but 8. I am excited for the new views. I am taken into the MRI waiting room and a woman with a kind face and soft voice meets me at the door. “We’re ready for you,” she says. “Can you walk into this room with me, or do you need my help.” No, I tell her; I can do it myself.
I am anxious to get this over with. Positive results will mean I’m that much closer to getting out of here. I also am scared, though, because I am claustrophobic. I hate small spaces. I tell the MRI conductor this, and she hands me a button to press if I need air while I’m inside. I don’t want to have to use it, but it’s comforting to hold. I am slid into a dark, enclosed tube and the racket begins. I am wearing earplugs, but I can’t tell. It sounds like they are doing construction, or clanking metal with hammers, just inches above my head. My breathing is shallow and my heart is flying. Get me out of here! I peek open my eyes and panic when I see there is no room to move. I am not allowed to fidget or move any part of my body and this makes everything worse. “Stay still,” my dad said earlier. “You don’t want to have to do it again.” I want to wiggle, slither myself out of here, but I can’t. I force myself to inhale deeply. I think of Sabra. I am instantly calmer. I replay everything – the treadmill, Beth Israel, my hand gestures, waking the next morning with the tube, Scott, my family. Suddenly, I have an intense need to remember it all. Everything. Even the physically and emotionally painful parts. I replay it again, and again, and again. I do this maybe 20 times and before I know it the MRI is over.
I am back in my room with my mom and dad. We are waiting for the report. I am not nervous, though. I have a good feeling. Dr. Langer’s physician’s assistant, Jaqueline, walks in minutes later. “Marissa, great news. Your MRI was perfect. We can see the hematoma, but it’s not bleeding. It’s clotted, as we thought. You do have excess blood in your brain, but that’s from the bleed. That will get reabsorbed back into your body over the next couple of weeks and months. But everything looks good…you are probably going to get released tomorrow.” My smile is so big I can feel the tension in my face. I want to leap up and hug her, but I contain myself.
This place makes me feel sicker, and I am not sick. I am healthy. I am active. I eat well. I take my vitamins. I am only 27. I do not belong here. I want to go home. I want to shower. I want to eat normal food. I am so jealous when my parents, and visitors, leave. They get to go ‘out there’ – out into the world. I am stuck inside. I miss the sunshine. When I leave here, it will no longer be August. It will be September. It’s only been a week, but I feel like I have missed so much.
My night out of the ICU is no better. I am too anxious to sleep. I want to get this night over with so it can be morning and I can go home. Ms. Ashley keeps the lights on at night and I can’t sleep like that. We’re not allowed to close our door because nurses need to be able to get in and out of our rooms easily at all hours. And it is always noisy in the hospital hallways. Even though we’re not in the ICU, they still want to assess me hourly. Blood pressure. Medicine. More pricks. They do it for Ms. Ashley too. More often for her than for me. And she rings her call button at least 5 times. I am not mad about this. In a way, I am comforted. We are both up-and neither of us are alone.
It is morning and I have only slept 3 hours. I am not tired, though. I am excited. I am eagerly awaiting the news. I wait, I wait, I wait. My parents arrive. We wait, wait, wait. Breakfast arrives. We wait, we wait, we wait. Finally Dr. Langer comes to my room and tells me I am being released. I am excited, but also scared. I ask him the same questions I’ve asked everyday since I was hospitalized.
“Will I be able to run again?” “Will this happen again?” “How can I prevent this from happening again?” “Will my life be normal?”
Yes. I’ve never seen this happen to a person twice. There is no way to prevent something like this. Yes.
His physician’s assistant assures me I can ask him these questions as many times as it takes for me to comprehend them fully, and feel comfortable.
I am released. Katie hugs me and says, “This hits home for me. We are the same age, you know. You never think something like this will happen to someone so young, but it does. Go home and get better.” I know what she means. I tell her I am still in shock this happened to me-I think of myself as immune to things like this. Invincible. Now I know better.
I am on my way out and I see Kiyoko. She runs to me and gives me a big, warm hug. “You are going home today! I am so happy for you. You look good – so much better.” I am crying. She was so wonderful to me and I want her to know this.
“Because of you, Kiyoko, my hospital stay was good. You comforted me, and took such good care of me. You are an incredible nurse and I am so lucky you were mine.” I tell her I hope to see her again…but not here.
Another nurse stops me, but I don’t recognize her. “Marissa?” she asks. Yes, I tell her, I am Marissa. “I admitted you last Friday. Wow – I can’t believe it! You’re walking and talking. I was tempted to call the hospital while I was off over the weekend to check on how you were doing, but then I figured I’d see you when I returned.” I am doing great, I say. So great that I’m being released! She hugs me and it feels amazing. I feel loved – she was going to call the hospital to check on me? Wow. These fantastic women, my nurses, actually care about me. They care about my wellbeing and health. They are all rooting for me. I want to bring them home with me, to help make sure I remain okay there like they do here, but deep down, I know I am going to be fine.
It is Friday. Exactly one week after I suffered a bleed in my brain. I was released from the hospital two days ago. I am an emotional mess. I am crying with so much veracity, my head is pounding. My mom is so worried. “Please stop, Lovey. You’re going to hurt your head and the body pains will just get worse.” I am crying for no reason, and also every reason. I tell my parents that I think I have post traumatic stress. I have been through quite the ordeal and I am only now beginning to feel and understand what has happened to me.
My experiences in the hospital are burned in my memory and when I sleep at night, I think of them. I also replay the instant of pain, and my awful day at Beth Israel. I replay it over and over and over again. It will not go away. I am still on steroids and they are continuing to make me nuts. I am laughing at myself for crying over everything.
My parents tell me they are going to go back to Minnesota tomorrow and I scream and stamp my feet and pound my fists. At first it seemed okay-I am feeling better and I know if I have to I can take care of me, my responsibilities, by myself. But then my body aches intensify – I cannot lower my head, twist my neck, walk at normal speed or shower painlessly. And I am scared. How will I do this without them? I am still recovering and need to be cared for. What happens if I need them in the middle of the night? The afternoon? Who will I turn to? What will I do? I panic again.
Langer’s physician’s assistant calls and I tell her how I feel-I break down in sobs as I am talking to her. “This is normal,” she assures. “You’ve been through a traumatic experience and you’re scared and in pain. Take my number and call me anytime. I’m here for you, okay?” I am so appreciative and I tell her she may regret giving me her number.
It is Friday night and I am feeling better. I am exhausted from the crying and the worrying, but ready to have a nice night with my parents before they leave. I feel badly for making them feel badly. They have been amazing to me this past week and I am angry with myself for crying so hard, for making them feel guilty for leaving. They have lives back at home and they deserve to get back to living them.
We are taking Scott’s mom and her fiance out for dinner. We want to say ‘thank you’. We go to a great steakhouse in the city and it feels so wonderful to be back in the world. I have bruises up and down my arms, I can barely walk, bend, twist or sit, but I am out. I am wearing a skirt and makeup. My hair is brushed. My body is clean. My teeth have been flossed. I am surrounded by healthy people. I feel good.
Dinner is amazing. We are at a round table, and I am sitting across from my mom. I secretly wish she was closer to me – next to me – but she is not. It is the way we sat down, and I don’t want to be a baby and ask everyone to move so I can hold my mom’s hand. Even though at this moment, I am longing for it.
Scott is next to me, and he is being so affectionate. “I am so glad you were born,” he says between bites. It is the nicest thing anyone has ever said to me and I cry. Of course I do – today, this entire week, I am a crying bandit. I tell him I feel the same way-I don’t know what I would do without him in my life. “This has made me realize how lucky I am to have you,” he continues. “I am so glad we met. So glad we stuck it out.” I couldn’t agree more. I am in pain at dinner. It hurts to sit – my tailbone and legs are throbbing from the draining blood – but I am too overjoyed to realize it. I am having fun. Finally.
Dinner ends, though, and immediately I am sad. This means I am closer to saying goodbye to my parents, and I don’t know how I will do this. I ask my mom to come to the bathroom with me. I don’t really have to go, but I want a private moment with her before our public goodbye. “I love you so much, Mom. I am sorry if I made you feel guilty earlier. That was awful of me. I appreciate so much your coming here – it has meant the world to me. I am the luckiest daughter in the world.” We are hugging tightly now and she tells me that she is the luckiest Mom. I apologize for giving her such a scare – and taking her off the golf course for an entire week. We both laugh and hug some more. I do not want to let her go, but I know I have to. I know the sooner I show myself I can do things on my own, the sooner my anxiety and emotional wounds will heal.
We are outside the steakhouse and Scott says he’ll hail my parents a taxi. I beg him to wait. “Just let me have a minute to say goodbye.” My parents and I are crying now. I am bawling on the inside but trying hard to keep the the salty flood from cascading. I don’t want Scott’s family to see. And I don’t want to make my parents feel worse. I hug them each at least 5 times. I thank them profusely. I tell my mom to call me later. And tomorrow when she wakes up. And again when she gets to the airport. And again once she’s boarded the plane.
A big part of me wants to go with them. I want to go home to Minnesota and be near my family. I want to be taken care of. But then I remember that I was independent before this happened, and I can learn to do it again. I have to face my fears and do it. And I do have a family here, I tell myself. It may not be my biological family, but I have all the numerous caring and kind people who showed up for me, who rallied around me, who are loving me through this. I have Scott and his family. I have my friends. I have old colleagues. Doctors. Nurses. Neighbors. Doormen – both mine and Scott’s. I have created this family here for myself, and while they are not of my blood, they are still my people. My network. My loving band of supporters.
Scott hails a cab and my parents walk toward it. Mom’s hand gently releases mine and she slides into the car. She begins to cry the minute the door closes, and I see this and break down. I don’t want to upset her, not now, not ever. I cry for me too. I miss her already. The cab drives off and I collapse into Scott’s mom’s arms. We are standing, intertwined, and my panic and sadness begin to lessen. I am weepy, I am lonely and I am afraid, but there is a part of me – a big part of me – that knows I can do this.
After all, I am the girl who stared death in the face and laughed. I am the girl who survived a life threatening bleed in her brain. Now I know I can survive anything.
*Note: I am now 42-years-old, healthy and happily married (not to the guy referenced in this story 😉 with three beautiful children. I am a firm believer that in overcoming the challenges and hardships we all inevitably face in our lives, we definitely become stronger.