Episode 7 - Introduction to Critical Illness
Today’s episode is also available in a video format, if that format is helpful for you can find the link in the show notes, on my Linktree account and on Instagram or Facebook @cyclebreakerchangemaker.
Before I get into today's episode I want to tell you about an example of how I practice the advice I give to you. In Episode 5 I talked about triggers and how your body does not bring anything up that it cannot handle. I also provided three steps to help you manage a trigger. A few nights after I wrote that episode I experienced a trigger. I was fast asleep and unintentionally someone turned on a gradual light from dark to full brightness very quickly. It jarred me and brought me back to the moment when I woke up from my brain tumor surgery and I mean brought me back. I remember the moment like it was yesterday, the way I woke up from the deepest sleep I had ever experienced to the neon hospital light fixtures with the metal grates on them being pushed in a medical bed on wheels and the look of the attendants eyes when I woke up. I remember the sudden waking up, the shaking, the throwing up and the feeling awful but at the same time feeling so excited to be alive. So when this recent trigger happened, while I knew where I was physically my body was going through physical sensations I have not experienced for over 20 years. I took myself through the steps I shared with you. I started with step one- and acknowledged that the combination of being woken up from a deep sleep and the light turning on gradually to full intensity triggered an old feeling from a really challenging time in my life. This allowed me to catch my breath and to see what I was actually dealing with. Then I moved onto step two - I was feeling my body want to shake, and throw up, I was also feeling disoriented and having thoughts like - I’m here, I’m really here. I quickly realized I was processing a memory from the past and while the feelings were not that comfortable - I let them pass as if watching them on the tv or as if they were being flown in the sky as a banner at the tail of a plane. (do they still do that? I haven’t seen one of those in a long time)
Then I moved onto step three to get grounded. I spent the most time here because it was a significant trigger that I had experienced for the first time. I used my senses - I found five things I could touch and touched them, I counted five things I could see, I counted five things I could hear and I repeated to myself I am here, I am in the present and I am safe.
Before this happened I had been feeling that I wanted to open up about the critical illness I experienced but this really made me feel that I need to open up about it in order to help others going through a similar event in their lives and selfishly, in order to help myself heal from it and so here we are.
In Episode 2 I shared that after being abandoned by my friends at an amusement park I was hospitalized which eventually led to the discovery of a brain tumor. What I did not share was that the Ear Nose and Throat Specialist doctor who had requested the MRI that revealed the tumor called me with this terrifying news on my 18th birthday. There are 365 days of the year and he called me with this news on my birthday. I am mentioning this because scary news is hard to receive and when it is lumped in with a recurring event it becomes harder to escape that memory.
The rest of today's episode is an introduction on what to do if you are experiencing a critical illness and for anyone listening that has someone with a critical illness in your life, this will be extremely helpful for you too.
So what exactly is a critical illness?
A critical illness can be a progressive, degenerative or malignant condition that places a person’s life in jeopardy. It may also be a medical condition in which immediate medical support of vital organ functions is needed in order to survive due to severe illness or major surgery.
My story:
From about the age of 9 or 10 I remember getting dizzy at unexpected times and sometimes for great lengths of time. I remember swimming and suddenly the pool would look like it was rotating, but not fully. The pool would appear to start to move from left to right and then suddenly stop and the movement would start again at the left. This started to happen when I would lie down, when I would figure skate, when I would walk - anywhere and at any time. Then I started to get what doctors thought were regular bouts of the stomach flu. I would be so dizzy and throwing up so much that I would have to lie in bed for days and days and eventually, the symptoms would subside. It was not until I went on a ride over and over again at an amusement park and could barely walk after that I was sent to a specialist who discovered the tumor with an MRI. Two separate medical opinions confirmed that the tumor had to be removed within two months from the date it was discovered. It was benign yet growing and had been there for so long that liquid built up in my brain was becoming more and more dangerous.
When this tumor was discovered I was in the last year of highschool, I had felt so awkward and ugly in my skin up to that point largely due to my traumatic upbringing and in my least year of high school I was just starting to find my confidence. Then this happened. As a child of that age I just wanted to fit in. As a society we have a primal need to fit in as a way of protecting our safety. As an 18 year old I was experiencing that primal need along with all of this pressure to look good, to be part of a cool crowd and to look great at my formal or prom. So finding out that someone was going to have to shave my head before the surgery was the only thing I could focus on.
This is really important because going through a very scary moment in your life is extremely personal, and no one has a right to tell you what you should feel or want at that moment. I was really worried about my hair, and that is exactly what an 18 year old should be worried about. I even asked my neurosurgeon to leave as much hair as possible, he gently pointed out that saving my life was his priority but he obliged and left as much as he could. So whatever it is you are worried about or need to focus on, you are allowed to move forward with that. You are in a fight for your life, no one can tell you what you should do or feel when you are in this mental space.
What you can do when facing a critical illness:
Please keep in mind that all advice given in this podcast is designed for after you have moved through grief and sadness and any other emotions you need to go through to mourn and process an experience, this may very well be a necessary part of your process after being faced with a critical illness.
Step 1:
Plan something to look forward to. You cannot underestimate the positive impact this can have. You do not need to plan this yourself, you can ask a family member or a friend to do this for you, but you need something to look forward to.
I was lucky enough to be connected to the Make-A-Wish foundation, I could have wished for just about anything - a vacation, a room makeover - you name it - I wished for a wig. Based on what I have shared you now understand that my hair was my biggest worry going into surgery, Make-A-Wish granted my wish and before I went into surgery I had already been fit with a wig.
This wig signified normalcy, being able to hide my scar and fitting in. This wig was a big part of what helped me wake up from that surgery.
Step 2:
Be prepared for people with the best intentions to give you unhelpful and even inappropriate advice. I really wish I had been warned about this one. As a person who has gone through a critical illness for anyone listening that is trying to figure out what to do or say to a friend or relative - I understand, it's awkward and uncomfortable - you don’t know what to do or say to the person in your life going through this experience. But let me tell you - it's awkward for the person experiencing the critical illness too! They are scared, they may not even know what they need and they likely will not be up for asking for anything. The last thing they need is for you to be giving them advice that helps you feel comforted in what they are going through. When I was faced with my tumor I heard it all - more than one person told me I caused my own tumor, one insinuated that I had worried it onto myself which was especially interesting since my abusive surroundings were what lead to the majority of my worries so that added insult to injury and just simply was not true. Another person told me that they had caused my tumor and felt guilt and wanted comfort. At my time of need you wouldn't believe the litany of inappropriate things that were said to me.
So if you are able, ask for what you need clearly and concisely and include what you do not need.. You can even consider making a list to give to people who truly want to help,
Step 3:
Be prepared for an emotional roller coaster. Plan for a full range of emotions and safe and healthy ways to get them out. If you know going into the experience that any and every emotion may come up it is a lot easier than being faced with them unexpectedly and at unexpected times. When you are going through this experience a portion of it may be that you are in survival mode, when you start moving through the experience and coming out on the other side whatever that looks like for you based on your experience be prepared for your body to let the emotions come to the surface. This is where practicing tips I have shared in previous episodes will be very helpful - such as get your feelings out. Consider journaling, recording them, or drawing them out. The key is to express the feelings to give them less power and to see them for what they truly are - thoughts and feelings.
Today's episode is an introduction to ways I can support you with this, I will be providing more podcasts and resources around this subject, feel free to reach out to me - this is an experience I do not want you to go through alone.