WILLIAM
Surviving GBS
Can you describe your life before Guillain Barre Syndrome (GBS)? Lifestyle, Work, aspirations etc?
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I was a Husband, a Father of two, a teacher. I led a normal life, and loved teaching. In terms of lifestyle, not the healthiest with late nights and early starts, meal times that are erratic. Hardly exercising.
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What is GBS, is there a cure? How did you find out about your diagnosis? How did GBS change your life in terms of Health, lifestyle, finances, work, outlook of life etc?
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Guillain Barre Syndrome (Ghee-Yan Bah-Ray) is an autoimmune neuromuscular disorder. In essence, your immune system attacks the nerves, and as a result, paralysis of legs, arms, breathing and face. It is rare, affecting 1-2 per 100,000 people, and patients have different experiences, ranging from tiredness to full on paralysis. Fortunately, it’s an acute condition that affects most people once. Unfortunately for me, I was in the small minority (less than 5%) who had a recurrence.
Because it was my second round with it, I detected similar symptoms as my first round, and made my way to the hospital. Basically, I felt tired, tingling in my feet, numbness in my face.
GBS does not have a medical cure; it depends on your immune system stopping the attack, and your nerves recovering. Some treatments have been shown to speed up this process. For me, I was intubated for 10 days, and spent 14 days in ICU. I took another 26 days in normal ward and therapy to get well enough to be discharged. In comparison, my first episode was a 6 day intubation with a 4 day recovery. So even my two episodes were different. And for others, there are permanent disabilities; including inability to walk well.
It changed my outlook. I started to live more in the now; I started to worry less about how fast I could be promoted, but looked more at doing my daily work well. I started realising that the condition was a reminder to take care of myself and my family; they matter more than anything else. I started to be more deliberate in my time with my kids, just being present with them.
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Did/ Will having any insurance payout/ benefits make a difference to your treatment options, mental health, financial health etc?
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Yes. I didn’t have to worry about the bills. I was covered; the medical treatment (infusion of immunoglobin) was about $10 grand. I knew the insurance would cover, so was ok to sign for it. It helped me realise that when financial concerns were taken out of the picture, you could focus on the recovery. And when you are sick, especially with severe conditions that threaten many aspects of your life, taking out financial worries is very powerful in allowing you to focus on recovering. I had to learn how to sit, learn how to eat, learn how to shower, brush my teeth, wear clothes. I even forgot how to walk (I had to actually remind myself to move my legs).
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If you could turn back the clock, what would you have done differently with your life? Hobbies, work, family, finances?
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I would choose to be more present in every day, every moment. I would exercise more, be less upset over minor issues. It doesn’t mean i would work less or reduce my workload, but the reality is health is not something we can control (beyond a limit) and we should still aim to live a full life everyday.
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What do you think will be your greatest challenge moving forward, or what are your plans for the future?
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I am fully recovered; whatever remains of the condition I can deal with so I am not considering the impact. My greatest challenge is living a life balancing both the need to avoid unnecessary risks to my health and living a full life. While it is suspected that viruses do trigger this condition, it is also true that I can’t prevent a third round.
My plans moving ahead is to continue to pursue a worthwhile life. I continue to help people, continue to grow as a person. I am more careful; taking time off once I fall a bit sick, in order to recover. My plan is not to allow the illness to scare me, scare me into hiding, but to live life fully as far as i can. I am thankful I do not have severe lingering physical scars.