How We Recover Shapes How We Move Forward
When I woke up on February 21, 2017, I could never have known that the next time I was going to wake up it would be March 11, 2017. So I said goodbye to my children and sent them to school like every other day. I knew I hadn’t been feeling well for almost a week but I was a working mother of two young children and taking my Master’s degree, so I thought I just needed to slow down a bit. I just kept expecting to get better.
On February 21, I was struggling to make conversation and I was losing motor control. So after mulling over a few options, and with the help of my friend and my husband, I was convinced to go to the ER at our local hospital. It became apparent very quickly that I wasn’t just going to get some antibiotics and be sent home to rest. Instead, I was admitted to the Intensive Care Unit, requiring intubation and mechanical ventilation for 17 days. When I finally awoke I could barely speak, I couldn’t walk or even feed myself. I had lost 20 pounds and my children could barely recognize me.
People will often ask me, “What is it like to be in a coma?” A medically induced coma is different than a coma that is caused by trauma to the brain. With medically induced comas, the key is to find the right sedation level so that you aren’t over medicated, which can be hard on your organs, but yet sedated enough so that you don’t remember all the things that are happening to your body while they are trying to keep you alive. For me that included repetitive testing, daily blood work, a blood transfusion, suctioning of my lungs, pleural effusion, and being turned regularly. There was apparently a great deal going on but I am very lucky because I do not have any memories of those things.
I have memories of feeling like I couldn’t fight anymore and being very tired but for the most part it was very peaceful and I felt an overwhelming sense of love. For me the tough part came as I started waking up from the coma.
It’s not like you see on TV. You don’t just wake up and start talking to your family. In fact I have no memories at all of the first day I was awake. My memories began the second day and the hallucinations were terrifying. I remember thinking I was being held captive and being tortured. I could hear my family trying to find me but they could never get to me. This continued for days as the medication that kept me asleep began to leave my body. I came in and out of lucidity never knowing what was real and what was not. I eventually learned how to mark my room using photos of my kids and pictures they had drawn so I could figure out where I was, but sometimes it felt like an eternity while I searched for something familiar. The nights were the worst, when my family wasn’t there to keep me grounded. I would sometimes call them late at night or early in the morning demanding to know why they hadn’t visited me that day. They were there all day with me but I had no sense of time so if I awoke at night or they had left my room momentarily, I was confused and scared. I was certainly happy to be alive and to see my family, but the terror I experienced during those first few days left a deep imprint. I would later learn there is a condition called Post ICU Syndrome, which affects a significant amount of patients who have spent time in the ICU as well as 30% of their family members.
Then I got moved to the general ward. There were far less staff to help me, and they didn’t always know my story or the amount of care I would need when I hadn’t moved for 17 days and my muscles were atrophied to the point that I couldn’t lift a glass of water or feed myself. Everything was hard. The simplest movements that I took for granted prior to getting sick became new goals for me to work on. Without my family, I don’t know what I would have done.
And then, after I survived all of that, it was time for the rehabilitation program to begin. It started with learning to regain bladder and bowel control. That was a fun few days! The first day they tried sitting me up, I thought I was going to throw up. The pain and the dizziness were beyond description. I wondered how I was ever going to do these things again. I couldn’t even sit up let alone stand up. It was just so hard. But eventually I started to move more. I started being able to grab things off of the table in front of me and not drop them. With practice I could do it repetitively, which meant I could start to feed myself. This was wonderful…although not having to use a bedpan anymore was probably better.
I eventually started sitting up for longer periods of time and then learned how to stand up. I will never forget the day I took my first step at the walking bars with the physiotherapist. The pain in my left calf took my breath away and again almost made me throw up. The deal was, however, that in order to get out of the hospital and home to my kids I had to be able to walk to the bathroom with a walker. So I endured the pain.
Leaving the hospital was like being in Vegas for the first time and I had difficulty taking it all in. I got over-stimulated very easily. After being in a coma, even the wheelchair ride down the hallway of the hospital was overwhelming. I was dizzy and disorientated.
I had to close my eyes driving home because there was just so much activity and I couldn’t take it all in. It would take several months to adjust to the pace of the world that I had left on February 21, 2017.
When I was discharged from the hospital, I was given very little information about what to expect during my recovery or how to help myself. I am functioning in this world today because I had previous knowledge about the rehabilitation process, I had the means to get the rehabilitation that I needed, and I had the support from family and friends to get me through the hard days. Some are not so lucky. This is both a reflection of our system as well as the unfortunate circumstances of some people’s lives. After experiencing all of this I know that how we recover dictates how we move forward in our lives. We should all have access to the knowledge and the means for recovery and nobody should have to go through it alone.
It has been 25 months now since I left the hospital. That 25 months has taken me to my knees at times with frustration and anger as I learned to reengage in the world, regain my fine motor skills, and get physically stronger. I went to trauma therapy and had EMDR to help with my sleeping and to help release what had happened to me while I was in the ICU. As my body began to wake up, I lost my hair, I had terrible headaches, pain in my muscles and joints and I experienced fatigue to the point that at times I literally couldn’t speak. I had to learn how to do everything again. Every time I thought I was making progress, I had to slow down again as my body reminded me that it wasn’t ready yet for what I was asking it to do.
After about a year, I decided it was time to start my return to work. I had lost all confidence in my abilities to help people in any way. Plus it took so much effort to get anywhere that I was late for everything. That, too, slowly came back with practice. With time I have found my way, although I still have ups and downs as my recovery continues. The trauma is still triggered on occasion by the most unexpected things. I have ongoing strength and stamina issues but thankfully that continues to improve. I have had to build a new relationship with my body – one of trust and compassion – two things I struggled a great deal with in the beginning and continue to work on today.
I had spent the previous 20 years of my life working in the rehabilitation field in some capacity, but even having all of that knowledge could not have prepared me for this experience. It was gruelling and it tested me at every level. As I continue my work and meet people who have had their own recoveries, I am reminded how deeply personal each of our journeys becomes. None of us have the same story or truly knows what it was like for another person.
I have learned that we must respect the personal nature of each journey and be careful not to use our own lens of the world to think we truly understand another’s story or think that we know what is best for them.
Prior to the coma, I was an expert multi-tasker and I could get things done. Worse yet, I used to judge people who didn’t have this skill or couldn’t suck things up. Now I see the amazing moments and their healing power when you just slow down. I see my children and my husband bravely trying new things, the quirks of my family that no longer drive me crazy, the amazing healing power of time with my girlfriends, and most importantly, the incredible insights you can have when you are alone and silent. I can’t accomplish in a day what I used to but I realize that I don’t need to. I am alive and watching my children grow up. There is no greater joy.
Although these last 2 years has been challenging, I will never forget that feeling I had in the coma of peace, love and connection with everything. I was a person who loved to be in control and didn’t need anyone’s help. When the medical professionals tell you that they aren’t sure how you got sick or how you survived, and you can no longer do anything for yourself, you quickly realize the fragility and the uncertainty of life. My greatest lesson has been in learning to surrender to this and to be open to the unexpected surprises and grace that comes your way as a result.
Unsinkable Storytelling Author: Shauna Streich