Sandy

 

It has been one year and five months since I had "routine outpatient" gallbladder surgery. I have always thought of myself as a very happy person. If you asked a friend how to describe me, she might say "cheerful" or "fun-loving". But being an ARDS survivor has presented me with a whole new set of emotions, a new reality. I'm not me, I am changed.


Death isn't something that happens just to other people, it nearly took me. I am not immortal. I go from feeling joyful to feeling terrified to feeling numb and back again. When my old spirit sparks back, I question if it's real or am I pretending? As time passes, I have longer periods of normalcy, but I never know when some sound, word or image will take me back to that terrifying time…


Kind faces hover over me, poking me, prodding me, turning me. Horrible, unrelenting pain in my gut. Whispered conversations just outside the door. My body is not my own.


I have no strength. I cannot find the nurses call button. I am terrified. My heart is racing, I cannot breathe. I fumble for my cell phone and call my husband, then my daughter.


I'm scared, I tell them. Now nurses are pushing me fast to the cardiac care unit. More tests, more pain as they draw greasy fluid from my abdomen. I see brown urine in a bag and icy fear grips me.


They rush me down the hall to another surgery to clean up the poison from my septic body. I hold each of my children's hands as they trot next to the gurney. I tell them they have been the best children a mother could ask for. I kiss my husband at "the kissing corner" then tell my mother I am going to die. Before I am sedated, I recall the face of my eldest grandchild. He and my other three may need me. I will not die, damn it! Then I pray.


I am drowning, struggling to swim up and away from this thing that has me in a vice. I'm losing, falling into the abyss, but I must not give up. I awake just once to a vision of a dear friend speaking kindly to me. But I will myself away from the pain. I must escape up and away again.


A month later, I awake to the sound of a familiar voice. I look up into the beautiful eyes of my son. I am alive! I smile and try to speak, but I have no breath. I feel something irritating in my neck and something's stuck in my nose. My lips are cracked, my head hurts, I may vomit, but how would I do that without choking to death? I am tied down, paralyzed. Sometimes I hear music that saddens me. I have tubes everywhere, but they remove the one from my rectum. I "lip" mortified apologies to the nurses who cleans up the greasy messes. The fever makes me ice cold when they strip me down naked to bathe me. Occasionally, a male nurse will peek in to ask a question, so casual about my nakedness. I shiver at the icy needles all over me. Then the endless nausea day after day, for 45 days, anytime I am awake. Yet I grieve over TV commercials showing delicious meals.


Where is everyone? They need to suction out my trach tube. The mucus is building up and I'm starting to gurgle. Where is that call button? I can't feel it. It's getting harder to breathe. I start waving at passers by. They happily wave back from a mile away. Will the trach plug up completely? Help! But I can't speak. So I reverse wave, beckoning someone, anyone, to come. They glance at the crazy woman, then walk on. It must be shift change time. I start banging weakly on the bed. The nurse-angel (yes nurses ARE angels on earth) finally arrives and tries to read my lips. She removes the valve in my neck, but accidentally blocks it twice when re-inserting it, cutting off all breath. I panic and claw at her arm. She must be new at this. She calls the respiratory therapist. He sticks some long thing down into my lungs that makes me cough, a dreaded procedure he performs several times daily.
They say I must try to stand. They cheer when I actually succeed for a few seconds, but we all know the aids are holding me up, so I just smile and go along. Whose legs are these anyway? Surely not the ones that ran for a tennis ball the day before I came here? My calves are deflated balloons, mush. All my muscles are mush.


I tell my daughter I want to see my dog. The next day Daisy is delivered in a shopping bag. She is scared of the smell of strangers' blood running in my veins and the alarming sounds in ICU.


Everyone tells me I look great and I just smile. I know that "great" actually means better than dead. My husband sits at my side every day. He puts warm cloths to my forehead, massages my back and my feet. He is a saint, but I lose patience when he can't read my lips. Why on earth would I want a kangaroo? I point furiously at my writing pad. I laboriously write a note. There! Read it, I slap at the paper. But he can't read my words; they are nothing but scratches across the page. My son-in-law walks in and holds up two fingers. I salute him back with two. Each day he holds up three or four. I just smile and reply with matching fingers, knowing he is testing me for brain damage.
A psychiatrist visits. He insists I take an anti-depressant. I refuse. They give it to me anyway. I try to write on my pad that I do not want an antidepressant. They finally understand and comply.


The 30 minute ride to rehab in an ambulance is exhilarating. I see the sky, the trees fast food restaurants rushing by. More nurse-angels greet me. I smile at everyone. My son and husband watch as the physical therapist helps me up. I say I can't! She tells me I can! I cling to her as I try to close my hospital gown in the back. She tells me not to worry about it. Hot humiliation washes over me. My mush-butt is exposed to my adult son.


I'm starving. If only I could eat something, this dreadful nausea would go away. It's been 45 days since my last meal and I've lost 20 pounds. They tell me tomorrow they will remove the trach tube from my throat, but I won't be able to talk or eat for a few days. But I talk that day and I eat spaghetti the next. They tell me I'm a miracle and they wish everyone had my fortitude. I just smile.


Time crawls by. The wee hours are so lonely. Why can't I dial my cell phone? I can't remember how it works. The TV drones on, but I can't concentrate. Its evening and my visitors have gone. Suddenly, the smiles end and intense, shoulder-shaking sobs begin. A kind nurse comes in to soothe me, then reports me to the doctor. He tells me I need an antidepressant. I refuse. I tell him it's the first time I've cried and isn't it normal to feel a little sadness? My son says he wondered when I would finally have a melt-down.


My house! Have I really been away for 50 days? I want to walk around, smell the roses, play with my dog, and take a shower. Instead I go to bed. I still have a fever. I have night sweats. I can go a few steps on a walker. The therapist stops coming. My heart rate is over 115, too high for therapy. They put me on more medicine. My doctor doesn't want me out in public until flu season is over. It's only October! He orders me to stay away from my grandchildren. I choose to wear a mask and disobey.


Eventually, I graduate to a cane, but I fall when I will walk into the yard. I can't get up. It is starting to rain. I call for my husband, but he doesn't hear. I wave at a passing car. I sob tears onto the wet grass as I crawl.


I am dressing for Thanksgiving dinner with our family. We have so much to be thankful for! I can take my own bath now, though I have to rest between tooth brush and hair brush. I run my fingers through my hair…it's coming out. By New Year's Day I am bald. I feel guilty for crying. What's hair anyway? I'm alive, right? I see in the mirror the red-rope scar that runs from between my breasts to my pelvic bone and the scattered others from the laparoscopic cuts and the indented one in my neck. I wonder if my dear husband will ever find me desirable again. I try to smile at the saggy image staring back at me.


Though I feel guilt for all I put my family through, we find it cathartic to discuss each detail time and again. I also feel guilt when I feel sadness. After all, don't I have so much to be grateful for? So I smile during the day and have nightmares and flashbacks at night.


I've gained the weight I lost, plus10 pounds. I kick the scale. It could be the newly diagnosed hypothyroidism, but I suspect it is "emotional-eating" as Oprah says. Feeding my worry that I may lose someone I love, or I may get sick, or I won't live to be old. Did I bring this all on myself through negative thoughts? (Yes, I read "The Secret"). More than one friend said before I went to the hospital for the gall bladder surgery, "you'll be up and back to normal in no time". Each time I replied, "if the surgeon doesn't cut something she shouldn’t'". Was it a premonition I should have heeded?


So I am changed. When one of those terrifying flashbacks happen, I tear up, weep silently, or give into a full-fledged wail, if no one's within earshot. After I've allowed myself a few minutes of self-pity, I resume my usual happy face, and people tell me how strong I am, how quickly I bounced back, how I don't wallow in self-pity. I smile and say thank you and hold my secret close. They can't see the changes, the highs, the lows and the fear.
Surprisingly, the more I deceive everyone with my smiling façade, the more I believe it myself. Now, I actually feel normal and content most of the time. And my memory is getting better, and much of the muscle stiffness is gone. I can play a little tennis and ride my bicycle.

 

I find myself thanking God for the small stuff like a hot bath or a fresh egg in the morning. I breathe deeply of the moist morning air and say "I'm alive!" And I have a desire to give back somehow. Did God allow me to live for a higher purpose? Is there some divine reason this all happened? Is the new "me" a better person? I don't know the answers. Yet.

 

Sandy

grandeeof5@yahoo.com.