“The doctor told me in a few days, she’s going to let me try to eat ice cream!”
“Lisa, I will bring you any kind of ice cream you want. Just tell me what flavor and brand, and I’ll bring it to the hospital.” My husband, Dave, sounded upbeat for the first time in months.
We were both happy that I could finally talk again, since doctors had recently removed the trachea tubing that had rendered me voiceless for months. I was also making great progress with my eating and was working my way from liquids to a soft mechanical diet. I’d suffered grave complications after the birth of our daughter and by September 1, 2006, I had been in the hospital for over four months. I had lost my colon and spleen, undergone five major surgeries, survived sepsis, ICU psychosis, was temporarily paralyzed, and battled a myriad of other horrors that had brought me to the brink of death. My husband was single parenting our newborn and toddler, working full time, and making frequent trips to see me in the hospital.
To ride the wave of his rare good mood, I added, “Now, all I have to do is relearn how to walk, and I can bust out of this joint!”
My sister Heidi decided to make the trek downtown and visit me later that night. I casually glanced at a pill that had been left by a nurse for me to take. The doctors had just started switching my medication from IV form to pill form. I remember asking the nurse if I could take the pill later because I felt so nauseous at the moment when she had brought it in that I thought I would vomit the pill right up. She had agreed, and left it at my bedside.
I swallowed the pill with some water and immediately felt something was horribly wrong. “Heidi, I don’t feel right…I feel like I can’t breathe.”
Heidi calmly said, “Okay, wait a moment and see if you feel better.” I was gasping for air and could barely speak. Beginning to panic, I whispered, “Heidi, call the nurses’ station.”
Heidi pressed the button and a very slow monotone voice came through the intercom, “How can I help you?”
“My sister is having trouble breathing,”
“Alright, I will send a nurse down to her room.” We waited, as I felt my lungs fill with fluid. I could no longer breathe at all and sheer panic flooded through me. I wildly motioned to Heidi that she needed to go out in the hall and get someone in the room!
Heidi went to the nurses’ station and told the nurse again, “My sister can’t breathe!”
The nurse snapped at her, “I already called your sister’s nurse and she will be there as soon as she can.”
“This is an emergency—you need to send someone to my sister’s room now!”
All the while, fluid kept filling my lungs as I fought for my life. Two nurses came in and, realizing that they had no equipment in the room, left and came back with oxygen and a pulsox machine. It was clear that this was not going to do the trick. At that point, they called in the “Rapid Response Team,” which is the equivalent of a “Code Blue.” Footsteps stampeded down the hall and I was soon swarmed by a large team of doctors, nurses, and residents. I was in a state of impending respiratory arrest. My airway was cemented shut and I could not breathe, no matter how hard I tried, I simply could not get any air. The doctors decided that they would have to intubate me.
Heidi warned, “My sister is extremely difficult to intubate, she has scleroderma…it’s almost impossible to intubate her.” Thankfully, there was an anesthesiologist on the team who determined that it would be better to reinsert a trach back into my throat. Oh, my God, they are going to do a tracheotomy on me while I am awake! Close your eyes Lisa, just close your eyes Lisa and it won’t be as painful…
“Lisa…. Keep your eyes open…..keep your eyes open…..stay with us,” Heidi said calmly, but she was a million miles away.
“Miss, we’ll need you to leave the room now. Just step outside please while we work on your sister.”
“I’m a physician and I’m staying with my sister. Lisa…I’m here. I’m right here…stay with us…don’t close your eyes. Lisa…Lisa…Lisa…keep your eyes open…I’m right here…Lisa, I’m right here. OPEN YOUR EYES…I am not leaving…LISA, PLEASE KEEP YOUR EYES OPEN!”
I’ll just close my eyes for a minute….I’m okay Heidi…don’t look so worried… I’ll open my eyes in a minute…
I am seven years old and we are swimming with family friends at the pool. There is no lifeguard or anyone else, but our little group. I am the only kid that can’t swim. The moms are outside somewhere chatting and we kids decide that it’s okay for me to go to the deep end, if I take a kickboard. I kick and kick, but then, the board slips out from under me. I am sinking down, down, down to the bottom of the pool. The water pressure is building as my hair cascades all around in the vast bubbling water that engulfs me. I panic, because I can’t breathe and I hear all the kids screaming above the water. Heidi comes underwater and I see her trying to grab me. I am so scared, I cannot breathe at all. Heidi will save me. My big sister grabs me and drags me back up. My head breaks through the water’s surface and I take huge gulps of air in between shrieks….
“Lisa…stay with us…try to keep your eyes open.” I felt them plunge my throat with the trach. The pain was stronger than a thousand scabs being ripped away from my flesh simultaneously. Finally, I could breathe. I could breathe, I could breathe. I reached out to Heidi, but I couldn’t talk! With the trach back in to help me breathe, I once again had lost the power of speech. Pain, panic, fear, anguish, and anger all spilled out with my silent sobs.
I was immediately whisked back up to the ICU. Hours later, I lay awake, trying to wrap my head around what had just transpired. Surely, if Heidi had not been there, I would have died. It only took moments for me to lose my ability to speak when my lungs filled with fluid. The nurses’ station probably would have thought that I pressed the call button by accident, and would not have even sent anyone in.
It seemed for every inch I moved forward, there was an unforeseen force pulling me right back into the jaws of death. What is the point in working so hard, if I just keep ending up back in the ICU? Okay, so I am going to die here. I am going to die here in this hospital. I will never get out. I will never see the light of day again. Emily will never know me, and she will be haunted all her days with the role that her birth played in my death. Ari probably won’t remember me. Emily will not have her mother by her side for all the special moments daughters are supposed to share with their mothers. I will miss my children’s pre-school graduations, them going to kindergarten, I will miss their T-ball games and ballet recitals, I won’t be there at their bar and bat mitzvahs, I will miss teaching them to drive, seeing them graduate, driving them to college, and walking them down the aisle on their wedding days, I will miss having grandchildren… I will miss all the momentous occasions and all the mundane ones in between. My children will not know the tender touch of their mother, or have the emotional support that only mothers can supply. Ari will have had only three years with his mother, and Emily, poor Emily, she will have had twelve hours with me. I will be nothing more to Emily than a picture of a stranger. Okay, I surrender! I am done, I am done, I am done. I have no fight left. My spirit has been hit with a wrecking ball. Who can live like this, waiting to die at any moment, wondering every time I see my children if it will be my last moment with them? I am so done. This is it. If I am not going to make it out of here alive, then please just end this already. Put my family and me out of our misery.
Wait, wait, wait. Calm down. Remember Lisa, you’ve been here before.
The memories all came flooding back to me. 1993. While home on spring vacation my freshman year of college, I had the same battery of tests run that had always been done every six months since my scleroderma diagnosis nine years before. These tests had become such a routine for me that it never occurred to me to question why they were being done. I was diagnosed in 1985, long before you could Google anything you wanted to know. All I knew about scleroderma was what my mom had told me. Besides telling me to put Neosporin on my oozing calcification deposits, my mom had told me very little.
During this particular battery of tests, it was determined that my lung capacity had been significantly reduced and there was some sclerosis (hardening) found on my lungs. The doctor suggested that I drop out of college immediately so that I could undergo intensive treatment (similar to that of chemotherapy), to stop further progression of the disease. She explained that if I did not undergo this therapy, the scleroderma would surely progress, and I would become “very sick.”
I felt as if I had just been steamrolled. What was this doctor talking about? I wasn’t sick! My skin condition was no big deal! I just had tighter skin than everybody else, right? We immediately left the doctor’s office and headed to see my regular physician. For once, I was actually alone with a doctor.
My doctor gently explained to me, “There is a possibility that your scleroderma is getting worse and beginning to affect your internal organs. This could lead to sclerosis of the esophagus, lungs, heart, and liver. Lisa, this would significantly impact your ability to eat and breathe, and may also impact your kidney function.”
“Well, what does that really mean? I mean, could I die from scleroderma? Do people die from scleroderma?”
“While new medications were being explored all the time, most people with internal involvement do not survive more than seven years due to the toll the disease takes on all of their major organs.”
Tears slowly trickled down my face, as so many realizations hit me all at once. My doctor looked at me in awe and asked, “Is this the first time anyone has ever told you this?” I nodded my head yes, left the doctor’s office, and told my mother I would meet her at home later. I headed for the public library. Shaking, I typed the word “scleroderma” into the computer and waited for the results. I found seven articles on the subject and quickly retrieved each one from the microfiche archives.
I read each article over and over. Every one depicted scleroderma as a horrifying disease where people looked completely mangled, lost their hair, needed oxygen tanks to breathe, experienced total kidney failure, and couldn’t fit a toothbrush in their mouths. Of course, some of the articles did mention that there were varying degrees of scleroderma and some experimental treatments, but this did not apply to me. I was going to get progressively worse, look like a walking skeleton, and eventually die. I would never get married, have children, be a teacher, travel, or enjoy life in a normal capacity. I could feel it becoming difficult to breathe. See? My express train to doom had already left the station.
I woke up the next morning and my mother informed me that we were going downtown to see a new doctor, Dr. Brown. Dr. Brown calmly told my mother and me that, although my test results did show that the disease had affected me internally, he did not think I needed to drop out of school and head for the nearest hospital. Rather, he would put me on a new medication to see if that would prevent progression of my disease. We would run all the tests again in six months and see if my organs had continued to sclerose or if they remained stable.
After six months, my tests revealed that I had remained completely stable. My condition had not improved, but it hadn’t worsened either. The doctors assured me that this was an excellent sign. I would continue to be tested semi-annually, and as long as I remained stable, there was no reason to be alarmed. Six more months passed, I was still stable. A year, two years, three years… twelve years, and I remained stable.
Okay, I’ve been here before. Come on, Lisa… Pull yourself together, rally. I CANNOT LEAVE MY KIDS! Damn it, I’m not leaving my kids. I will not leave my children. I simply will not do it… Dying is not an option, just take it out of the equation. There is no way I am leaving Ari and Emily. I have to be their mother.
There, in that ICU bed, with a trach freshly punctured into my throat, I promised myself I would not live as if I were dying. I tried that when I was nineteen years old, and learned that riding the train to Doomsville is not living, it’s just surviving to reach the next tragic moment. There are no guarantees in life, but, damn it, I was going to fight like hell to claw my way out of that hospital bed.
Three months later, I did make it out of the hospital. On December 1, 2006, I came home to my husband and children. My daughter was over 7 months old and my son was turning 4. I was bald, in a wheel chair, weighed 80 pounds, and wore a hissing bandage on my neck to conceal the open wound where my tracheotomy tubing had been removed. Months of grueling physical, occupational, and speech therapy awaited me. It was a slow and rocky road, but with the support of hundreds, I made a remarkable recovery.
When I was young, my family said I was mulish, and always wanted to be a part of what was happening (a trait that was particularly annoying to my big sister). I know I was insanely irritating, but I’m glad I was a stubborn and strong-willed little girl. It gave me years of practice for when I needed my obstinacy the most.
