{Series – Sickling Moms} – Melisa

There are just so many people battling so many things. This series is designed to introduce you to moms that have their own serious health issues to deal with, all while being involved, present, lovely moms.

Melisa has a whopper of a story to tell. What makes it even more heart wrenching, painful and frightening is that she could be any one of us – a normal mom, doing normal things, living a normal (albeit beautiful) life. Until that one moment.

Jodi and Melisa
Jodi and Melisa

Please describe your medical condition
For 39 years, I had been a healthy, energetic, go-getting kind of person without any kind of serious health issues (I’m not counting an ectopic pregnancy and an appendectomy as health issues 😉). In November 2012, I literally ‘woke up’ with Guillain-Barre Syndrome – I had absolutely no indication before then that it was silently slumbering within me. GBS is a somewhat rare condition (1 in 100 000 people get it), where your immune system becomes confused and attacks the protective myelin sheaths surrounding all the nerves – destroying them completely and even destroying as deep as the axons of the nerves, which happened in my case. It started with two numb finger tips and a heavy feeling in my legs. Within hours, I was admitted to High Care and, within another 5 days, I was completely paralyzed from the neck down, on life support in ICU and induced into a coma.

I spent 3 months in ICU on a ventilator and a further 3 months in rehab – learning to do the most basic of daily life activities for myself. By the time I went home at the end of April 2013, I was still unable to lift my wrists or move my legs even slightly – meaning I needed 24-hour care!

How does it affect your everyday life as a mom?
In the beginning, things were pretty bad. I could not even talk for 2 months, nevermind be there for my daughter as a mom! Recovery has been very, very slow due to the severity of the damage to my nerves. But, things are still improving! I have constant back pain, get severely debilitating cramps in my diaphragm (which is, and will remain 40% paralyzed) and get tired really quickly because of my reduced lung capability.

I still rely on a wheelchair for longer trips out and use a walker/crutch at home. These little issues mean that I am no longer able to just jump in the car and run off to the shops, movies or beach with my daughter, Jodi. My days have to be very well planned. Jodi loves surfing and I have never been able to walk onto the beach and sit there, watching her – that is frustrating when I dwell on it.

I miss the spontaneity of my ‘previous life’ – especially since both my husband and Jodi are very spur-of-the-moment kind of people. It took me a long time and bucket loads of tears to come to grips with the changes in my life and how if would/has affected the people I love.

Although every day brings a challenge of some kind, every day also comes with the joy of knowing that I survived and am able to hug Jodi and be a part of her growing up.

How have you described / explained it to your kid(s)?
Just as it happened, very openly and honestly – and she has understood it well. In my case, I believe that the fact that I am still recovering gives Jodi hope and keeps her positive.

What are some of the stigmas attached to your illness? How accurate are these?
I’m not so sure about stigmas attached to GBS but, having spent 2+ years in a wheelchair daily has taught me a lot about the stigmas attached to disabled people. It’s mind-blowing actually! Many people automatically associate someone in a wheelchair with being ‘of lesser mind’ and feel the need to ‘talk down to’ or to talk particularly slowly to a person in a wheelchair. I personally found the blatant stares and confronting questions in shopping centers the most disconcerting. It’s crazy that just because your disability/illness is visible, strangers feel that they have the right to know what happened to you!

What things have people said to you about your illness?
I have had the craziest things said to me… from the really stupid to downright rude. This little gem will always stick out for me, though:

“Oh, I could never go through what you have been through… I would have asked them to turn the ventilator off.”

You take these things with a pinch of salt – most people are ignorant about illness and just don’t how to act around sick/disabled people – they don’t mean any harm…

What are you good at that your illness can’t affect?
I have pretty great organising skills ☺️ Even when I was completely paralyzed, I managed to keep my household running to a very similar standard as before I became ill – yes, I had lots of help and carers; but, I still felt in control because things were done similarly to how I would have done them.

What helps you to cope?
– Knowing my limitations, even though I don’t always abide by them.
– Even though my condition is visible, I try not to hang a label around my neck about it. I view myself as so much more than this – it does not define me and it’s merely another thing that has happened to me in my life.
– Being with my people – my friends are wonderful human beings who forget that I’m disabled and never hesitate to include me in everything – they see no wheelchair/walker – it keeps things ‘normal’ for me.
– Staying busy and, in particular, cooking. It remains a big love in my life… it gives me great joy to prepare a good meal and see my family and friends enjoy it. It’s definitely therapeutic. {side note from Amelia – as one of her friends, I should interject and say that the pleasure of eating her food is ALL OURS – she’s a superstar in the kitchen!}
– I am learning to sew – I love it! It’s creative and brilliant exercise for my hands, wrists, and arms!
– A few minutes of silent prayer has gotten me through my very darkest hours and has made me strong enough to face many difficulties.

What do you wish others knew about your illness?
More about being disabled than GBS…

Sometimes in life… things happen.
It cannot be prevented, you cannot cause it and there is no cure or fix for it. Becoming disabled is a very humbling experience – it changes your life in so many ways. Even if you recover, you will never be the same. It can happen to anyone. Always treat people with disabilities equally, respect other people’s struggles even if you don’t understand them and, please, don’t park in a disabled parking bay if you are able to walk!!

What do you wish they knew about YOU?
I loooove foot-rubs – just putting it out there! Use it don’t use it… now you know 😛

Doing what they do best - out and about in the sunshine
Doing what they do best – out and about in the sunshine
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2 thoughts on “{Series – Sickling Moms} – Melisa

  1. I salute your bravery and love and respect that you have worked through this trial and still come out of it with a positive outlook. You are not the person you were before in a physical sense but in an emotional and mental sense you have scaled heights that the majority of us may never reach. Not showing bitterness or resentment is testimony of your inner strength and faith. You must be applauded and commended for not blaming God for your situation but instead making us aware that time and unforseen occurrence befall us all. Your example is an inspiration to me and others. Thank you for digging deep and for holding onto your “sunshine like” attitude. Thank you for sharing the lesson of not treating disabled people any less than we would an able bodied person. Such ones are more than most of us could ever be. And a special “shout out” and tribute to your family who have stuck close with you through sickness and in health. May strength and fortitube be your everyday resolve and be sure to trust that soon God will satisfy your every hope and desire. Best wishes from Keith and Florbela

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