Who am I?
What defines me and if I were to lose everything would it be enough?
Recently I was able to sit with someone who had just received some news that pushed her over the edge wanting to end her life. A few years back she was involved in an incident that left her disabled. She is in pain all the time, she cannot stand for longer then five minutes, she cannot sit in a chair for very long, she has to wear continence pads. She also talked about the isolation she has been through, she cannot go and watch her kids play sport, she does not go out for dinner, she has missed out on graduations and does not go to weddings or other functions. She spoke about life before the incident. How she used to enjoy running, how important her job was to her and how family life was. But now she has lost everything that she was. She told me how her kids mean everything to her but she the sick of being strong and putting on a happy face, and this recent news has pushed her to think that to end it all would be easier.
This has got me to thinking, if I were to loose it all, either through an accident or MJD, would who I define myself as be enough? And who am I?
Am I a nurse, a volunteer firefighter, a guitarist, someone who enjoys hiking, bike riding and doing outdoor things. Then you have the relationship stuff. Am I defined as being a wife, a daughter, a sister, an aunty, a friend. Am I defined by the things I do and the relationship I have or even the emotions I feel. If I am unable to do the doing things, does that then become who I was. Will not being able to do these things then effect my relationships. With family living so far away, will the friendships I have be enough for them to regularly put aside time to spend with someone that has trouble stringing a sentence together and who understandably gets frustrated over trying to do the simplest of tasks?
Finding out that I have the MJD gene has made be think more about how I am living my life today and everyday. It has given me the chance to prepare for the what if it happens. Not only thinking about it finically, and not taking being independent, running, walking and driving for granted. But I can now prepare myself so that who I defined myself as now, can be who I am then. This whole who am I thing is only something I have been thinking about recently and it is still something I am thinking through because I want to make sure it will be enough.
I recently met someone going through similar anxiety to what I went through and seeing her slowly take steps to take back her life inspires me as I know how much courage it takes. Anyway, she reminded me that no matter how shitty life gets we always have God. She then went onto share Psalm 63:3, “Because your steadfast love is better than life, my lips will praise you.” Hearing this verse reminded me that it is in God’s love that who I am is defined. My identity comes from what God has done for me and what God says about me.
I started writing this blog about three months ago after I went with my sister to her specialist appointment. I am not sure why it has taken me so long to finish it. I suppose maybe the challenging points in this blog make me reflect on how I did and do now live my life and the whole make sure you practice what you preach thing.
Going back to my sister’s appointment; this was my fifth visit to the Neuro Clinic, going there has become a regular part of my life for the past year. During the appointment we spoke about many things. One thing being that there is no cure for Machado Joseph Disease (MJD), or the technical name Spinocerebeller Ataxia type 3 (SCA3). There also is no treatment for MJD but studies have shown that doing balance exercises and being active helps slow down the onset and progression of symptoms. But it is up to the individual to make this happen. There is no simple tablet that you take each day and the problem is solved. You have to make decisions, push through the struggles and create the lifestyle you want.
A few year ago when I suffered from crippling anxiety. It took me four months to realise what it was and by that stage I was extremely overwhelmed with physical symptoms. I did not want to go anywhere, I felt unwell just being at home, I was nervous all the time. It all started when I was travelling overseas. The doctors over there thought it was something like lyme disease because my symptoms were so physical but the test results came back negative. When I returned back home to Australia it became very obvious that it was something else as I could not fit back into normal life. After seeing a doctor here and being told it was anxiety, I suppose there was a sense of relief that I now had an answer but the hard part was that it was up to me to make myself better.
It was a massive struggle to overcome my fears or to even work out what they were. At the start I was quite upset and scared as I knew there was no magic pill to make it all better. I had to put in the hard work to change the way I thought about things. I had to change the way I thought about myself and what I could or could not do, I had to decide I was worthy of better.
I see many people stuck in their ruts. Ruts of negativity, ruts of I cannot do that, it is my bad habit, I am not sporty, that person said I cannot do that, they laughed at me when I said I wanted to do that.
Unfortunately, there are always going to be ruts in the road as we travel through life. But it is what we choose to do when we find ourselves in them that counts. We have to choose we are worthy of better.
I tell people about some of my ideas and dreams and the response sometimes is a sarcastic laugh followed by ‘you’ll never do that, your too lazy’. But in the end it does not matter what that person thinks or if you make it or not. What matters is that you tried. Yeah maybe I am not meant to be an astronaut but I am still allowed to chase that dream, learn things along the way, and become a better version of myself.
Whether your struggling with your work, relationship, mental health, fitness, sickness, family, money, etc. It is up to you to change it. There can be other things that factor in and make it hard for change but you need to be the one that pushes through it. It may be one step forward, two steps back or sometimes six steps back but you need to keep taking those steps forward. You are worthy of better.
On a TV show I was watching recently a character said, “Recovery is for people who want it, not people who need it.” You could replace ‘recovery’ with ‘change’ or ‘a better life’.
Change is for people who want it, not people who need it.
YOU ARE WORTHY OF BETTER!
This blog has taken me about a month to finish. The past few weeks have just been one thing, after another thing, trying to get me down and keep me down. My life has been pretty much like the picture below. Although at times I have been frantically trying to get myself to somewhere that I feel safe, I have now learnt to relax a little because the sharks cannot get to me while I am in my boat. Anyway, here is the blog I have been struggling to write.
Since telling people about my genetic testing results my life has been filled with meaningful and challenging conversations. People I have had D&M’s with before and others I have never had a deep conversation with. Some conversations ended in tears as the weight of how crappy this life has been, not just me but other people. Other conversations have been really encouraging and some conversations have been hurtful.
The question that has been asked a few times lately is, how did you get to where you are so quickly?
Before I was asked this question I had never really thought into it much. But the truth is I have already been through something traumatic, something that I thought was going to be the hardest thing in my life. In the days/weeks approaching the appointment to get my results I was scared and emotional but I reflected on where I had been and what I had to go through to overcome that challenge.
Back in 2013-2014 I thought I was not going to be able to survive my struggle. I could not see any hope in my situation, I was overcome by fear and in a really dark place. I remember in the week leading up to getting my result, I was in tears as I felt like I was going back to that place that I worked so hard to get out of. It was in those moments I had to choose and believe that God was with me then and He is with me now, and that I can use what I leant back then and be triumphant in whatever was ahead of me.
In 2013-2014 I struggled massively with anxiety. It all started while my husband and I spent seven months travelling around Europe. We were about three months into our trip when I started to get these overwhelming and anxious feelings. I could not rationalise why I was having these feelings so I just ignored them, well at least I tried to. But the continual struggle to ignore my feelings and just push through and do things lead to me becoming physically ill. I was tired and wanted to sleep all the time, I would be out of breath just walking up the slightest hill. My muscles would ache, I started feeling dizzy all the time and I just kept feeling worse and worse. We went to the Doctors where I expressed my concerns that it could be anxiety but they wanted to do some more investigations as they thought my symptoms were too physical. But shortly after we returned back home to Australia, it became very obvious it was anxiety.
I just could not fit into normal life again. I did not like driving by myself, going to shops by myself or going out just in general. I did not even like the thought of walking a few hundred meters down the driveway by myself. Just the thought of doing any of these things made me want to hide under my bed and cry. I knew I was the only one who could get myself to overcome these feelings. There were lots and lots of tears as each day I took one little step after another. From walking down the driveway, to driving up and down the dirt road, to driving into town, to actually driving into town to get out of the car…etc, etc.
How did I get through this? This is where some of you might go ‘meh’ and stop reading but I encourage you to keep on reading.
If you believe in God, you must then believe in Satan, the Devil. This is what I thought but I have recently learnt that apparently 60% of Christians actually do not believe in the Devil.
Anyway, during this time, I read a devotional called The Battlefield of the Mind. In this book I learnt about trusting God, that He goes before me and will work things out for my good. I learnt to be in control of my emotions, thoughts, words, decisions and actions; and to be conscious of my weaknesses and Satan’s corresponding ploys. Satan will use your weaknesses against you, he will put thoughts in your mind and feed off your negativity. If he can keep your attention diverted until you are dead, he will be able to get you to do to yourself what he does not have the power to do to you.
If you are a follower Jesus, then Satan has no power over you. Satan wants to take you to hell, but if he cannot do that, he will try and stop you from taking anyone to heaven.
So many people get down when bad things happen in life and choose to hate God. People want miracles in their lives but you cannot have a miracle without a problem. The ‘thing’ is not the problem, it is the way you think about the thing that is the problem.
For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord. Romans 8:38-39
It has been said to me, “wouldn’t you rather die now then have to live through that.”
I was stumped when this was said. This gene is just one out of 20,000 that make up who I am. Struggles are part of this life, they are guaranteed. But God gives me hope for an eternity free of suffering and pain.
Before I even had the appointment to have the blood taken to test, I wrote this in the notes on my phone:
“If I found out I have this gene how would I change the way I’m living knowing that one day I wouldn’t be able to do the things I love. Would I spend more time with family and friends, would I play the guitar more, would I take up jogging although I hate running… and then I think why would I wait to find out if this gene will one day take over my life. Why not live like tomorrow isn’t promised today?”
In the last few weeks I’ve been fighting not to go back to that dark place of having no hope. I have had voices yelling at me that my life is still fear based. Choosing to trust God and practice all the things I have learnt is not just a once of thing. Every day I wake up I have to choose what will I believe; the lies of the devil or the promises of God.
P.S. I still hate running!
Some of you may wonder why I am doing these blogs. Why do I not just keep things private? I believe that by sharing our struggles, you can help others and others can help you. We are not meant to travel through this life alone.
The past few weeks, life has been pretty overwhelming with lots of highs and lows. But overall lately I have been feeling discouraged as to what the future holds for me. It has left me pondering a number of things, mainly the struggles I have already been through and what can I do to better equip myself for what is to come.
If you had of spoken to me before September last year I would have told you that I had already had the trial of my life and that nothing could be worse then that. Sitting here writing this I realise that that trial was to equip me to survive this trial. But this one is going to be the trial of my life. A constant battle each day to sink or swim, to choose fear or faith.
Back in 2013 to 2015 I battled serve anxiety. It all started while my husband and I were travelling around Europe in a campervan for 7 months. About 3 months into it I started having these overwhelming feelings, that my breathing did not feel quit right, I did not feel right, but I did not know what exactly was triggering these feelings. I know I had a lot going on in my head. Back home my family was struggling with massive changes. Mum had recently gone into full time care so each member of my family was dealing with the emotional grief that came with that; and I was on the other side of the world. I tried to ignore these overwhelming feelings but it all built up overtime.
Upon returning home at the end of 2013 it became very obvious that I was struggling with anxiety. I did not like driving by myself, going to shops by myself or going out just in general. I felt anxious enough just being at home, I could not even walk down the driveway by myself.
But I knew I could not stay where I was, I had a life to live. So I started seeing a counsellor, surrounded myself with supportive people and put all my trust in the only person I knew could get my through it, Jesus. And when I say all my trust, I mean ALL MY TRUST. One small step at a time I got braver and braver. There were heaps and heaps of tears while I confronted each challenge one at a time. Some people watching me struggle said they were not seeing any progress so I started writing a list of each thing that I conquered (pic below). This showed me that I was making progress and they had it wrong. But even after I did these things once, I still had to find the courage to do them again and again.
Even now when I am feeling overwhelmed and disheartened I need to watch that my mind is not falling back into that old way of thinking. I still come to the same conclusions for this struggle as I did with the other.
Tonight at the gym while listening to iTunes I discovered a new song that hit me straight in the heart. Now I’m a lyrics person, I love songs where I can relate to the words. This song is called Beautiful Eulogy by Beautiful Eulogy (Youtube video below). Now part of the second verse really resonates with me. These lyrics remind me that I still have hope.
How sweet the Gospel sounds to ears like mine
Well acquainted with pain…
And He still hasn't wiped away all my tears yet
My cheeks get wet every now and then
Even when I give my best, I know I fall short
I get scared when the ball's in my court
Focused on my performance, wretched and poor
It makes the message more real when I preach it
I'm not there yet so I'm reaching, reaching for a goal:
To stand before my King and be speechless
Then, never again will I question if His grace is sufficient to cover my sin
Cause death is gone, and all the effects of evil and wrong
Will be conquered when His Kingdom comes
So this is my hope and my prayer
The air that I'll breathe in eternity with lungs that never fail me
If it pleases my Lord, and only by Your grace
Use my life 'til it's poured out for Your sake
Until then I'll remain where You have me
With joy when I feel unhappy
And a peace that surpasses all my understanding
My life is in the hands of Your love everlasting
I have also been reading a book (Through the Eyes of a Lion by Levi Lusko) and listening to a few podcasts and I am reminded that God wants to bring a message out of my mess, as He does with everyone. God gives His most difficult assignments to his most trusted soldiers and it is an incredible honour to be trusted with this pain.
Because of Jesus, we have hope. And because of hope, even in the mist of the worst storms of life, we have an anchor for our souls.
In The Hunger Games, President Snow said hope is the only thing more powerful than fear.
I choose hope!
In my last blog I said how I’m not going to sit back and take it, I’m going to STAND AND SCREAM. Scream about hope, scream for those who are hurting, scream that the fear of what may come will not control me. Well this is me SCREAMING for those who are hurting. Now this is going to be a very passionate blog, so brace yourself.
This applies to everyone; it applies to how you interact with people in everyday life. But I really want nurses, doctors, disability workers and anyone who works within the healthcare system, including the people that go to people’s homes to help clean or the people that assist clients to go shopping, to read this. I’ve heard people do this at work and in my own personal life but I’m going to write this from a nursing perspective.
We need to be SO careful with what we say to our patients and their families. We deal with vulnerable people. My Mum recently had an operation to have a PEG tube put in; this is a feeding tube that goes into the stomach. One of the symptoms of MJD (Machado-Joseph disease) is difficulty swallowing. There is a risk of aspiration, fluid and food going into the lungs. Aspiration can cause pneumonia and in some cases this can lead to death.
Now I get that sometimes you don’t know what to say or how to deal with something. But we need to be so careful with what we do say. Because of the risk of aspirating Mum had to drink thickened fluids while in hospital. The nurse looking after Mum made this comment about thickened fluids, “yeah it’s disgusting, I wouldn’t want to drink it either”; she didn’t then reinforce why it is important that mum has this type of fluids. We all know that thickened fluids would not be nice. But you’re dealing with someone who has just had a major change in their life. Mum is someone who loves her coffee, you can probably relate to this. Imagine that your favourite drink had to be thickened. How would you feel? Would you refuse to drink it? Imagine that your family dinners or Christmas dinner was never going to be the same again; that you would have to eat something different from everyone else or maybe not even be able to eat at all. Yes we can validate people’s feelings but you need to reinforce the importance of why some things have to happen.
Later the nurse was standing there giving Mum some panadol through the PEG tube and Mum was watching a show on the TV. The nurse made the comment that she hated the show; Dad proceeded to say that they actually had that show on DVD at home. The nurse then went on to say to Mum that she “needed to get a life”. Wow! Sorry, what!! You’re saying this to someone sitting in a wheelchair, who has needed full time care for the past 9 years, and who has been slowly losing more and more of her independence for the past 20 years. If Mum could walk and do other things she would gladly give up her DVD collection.
I sometimes don’t say the right thing and I know that as humans we all muck it up at times. There were a number of other things that greatly upset me during Mums stay. But for everyone, when you interact with people you need to be careful of what comes out of your mouth. Just in general society we can be quick to misjudge people, we limit people and we assume things; especially for people with disabilities. We don’t know everyone’s stories and we don’t know what has bought them to this point.
To add a little bit of a personal touch below is a picture of Mum, her youngest daughter (my sister) and some of her grandkids. Her life!
And if you interested, here is a extra little video that speaks about the power of words.
I wrote my first blog post about a month ago. I wrote this blog for a few reasons. For my family; particularly my husband, parents, sisters, and brother in-law. It was also a chance for me to share this news with the others in my life, to allow my friends to find out what was happening without having to have the same conversation over and over again. It gave me a chance to encourage my family and remind them that it is going to be ok. The blog enabled my family to open up and talk with each about our true feelings. We were able to admit the hurt that we were hiding behind our smiles, support each other and remind each other about the promises of our God.
Beginning the blog for my family I did not expect many visits to the site, but I have had many more views than I expected, as of last week I had reached over a thousand views. Since posting the blog lots of people have approached me. I have had many people thank me for encouraging them in their faith, I have had people tell me how sorry they are to hear my news and have offered their support, I have also had people I am ‘close’ to decide not to acknowledge my news.
The question I have been asked most is “what are you gonna do now?”, which is typically followed by the question “do you plan to travel more?”. I struggle with this question, the truth is that my life expectancy is not set, neither is theirs, something could happen to me or the people asking me next week. Do any of us live our life to the fullest on the off chance we will die in a freak accident? Are you traveling this week just in case you have an accident next week and cannot walk? Why am I expected to ‘want’ more from life now then when I did before I was given this news?
The truth is I just want to be ‘normal’. I want to spend my time with family, I want to have a family of my own, and I want to continue to do what I am passionate about. I want to spend my time volunteering for my community, nursing, and worshipping my God; just as I do. Yes, I want to travel every now and then. But more importantly I want to be a part of my family’s lives and friends lives. I want to create memories with them and be a positive influence on them.
A bunch of friends and I are hiking up the ten highest mountains in Australia in March 2018, to raise awareness for MJD and people with disabilities. We're planning on fundraising throughout the year to raise money for research and support programs.
More info: www.tensummitschallenge.com
It's not just about creating awareness for MJD for me, it's about empowering people who have been misjudged and mislabeled, and supporting those who care for other people. It's about helping people understand that a disability does not define who someone is, it does not make them any less of a person.
The scientific outlook for my life isn't too amazing, if you do some research into it you will understand. I believe in a God who heals, I don't understand why he has let this happen but I'm not going to sit back and take it; I'm going to STAND AND SCREAM. Scream about hope, scream for those who are hurting, scream that the fear of what may come will not control me.
Picture from: http://www.itownchurch.com/wp-content/uploads/2016/06/FearOrFaith.png
Roughly four weeks ago I found out that I inherited a degenerative gene in my family called Spinocerebellar ataxia type 3 (SCA 3), also known as Machado-Joseph disease (MJD). Basically it is a progressive decline in muscle control; losing coordination, balance, speech, swallowing, eventually requiring wheelchair assistance and the support of someone to help you with everything. There is no cure for this disease.
The scientific outlook for my life isn’t all too amazing. I live a reasonably active lifestyle; I’m a nurse in a busy emergency department, a volunteer firefighter with the CFA, I play the guitar, I enjoy hiking, riding, swimming, I’ll give anything that’s outdoorsy a go. To think that one day I may not be able to do any of these things upsets me greatly, that one day I may struggle to even walk in a straight line. My Mum has SCA 3, as well as two of her siblings and so did their Mum. I’ve watched and helped my Mum progress through the disease.
When I received this news I was shocked and devastated. I have many dreams that I could now almost deem as unreachable. Why would God let this happen to me? Why didn’t he answer the prayers of my parents? Haven’t I already been through enough?
So to receive these results came with great disappointment and heartache, well it wasn’t my results that first caught me out. Last year, my younger sister had genetic testing done to see if she carried the gene and when her results came back as positive I was quite upset. I had always held onto my faith that neither I nor my sisters would have the gene. My parents prayed over us from a young age, I’m pretty sure they prayed for us while we were growing in the womb. They prayed and believed that this gene would not be passed on; I had prayed and I had also had people pray for me that I would not have this gene. If God is good then why has he let this happen, why has he not healed me?
I don’t believe in a god who is distant, sitting up in heaven, ruling down saying do good or you’ll get what’s coming to you. I believe in a God who loves, who heals, who cares for me, who would never want to harm me. And I have come to these conclusions...
Why does God let bad things happen?
Why didn’t God create a world free of suffering, tragedy, evil and death? But that’s exactly what God created! God created a world that was free of suffering, tragedy, evil and death; you can read about it in Genesis 1. God saw all that he had made, and it was very good (1). God wanted us to experience love and love always require a choice so God gave us free will. With that free will humans rejected God and that caused the introduction of evil into the world (2). God is not the creator of evil and suffering.
Why doesn’t God heal me?
I’ve heard of people being told they haven’t been healed because they don’t have enough faith or they have some hurt or sin that they need to deal with. But healing isn’t always the path God has planned. Sometimes God allows suffering as it can teach us things that we would never get out of a book or seminar. He uses it to strengthen and change us. Your pain has a purpose. God doesn’t say you might have struggles, he says “on earth you will have many trials and sorrows” but he also says to take heart as He has overcome the world (3). The bible is full of stories about trials but in those trials is God’s grace and mercy. He tell us not to be afraid or discouraged because he goes before us, is always with us and will never leave us (4). God causes everything to work together for the good of those who love him (5) and we cannot begin to imagine what he has prepared for them (6).
Struggles are part of this life but God gives me hope for an eternity free of suffering and pain. I know that there are going to be hard times a head, even now, most days I’m ok but some days the reality that my time to do things may be short makes me upset. One day I may not be able to play the guitar or even walk in a straight line. All the things that I find happiness in now, one day I may not be able to do any of them. But I do know that God has a bigger plan.
Heaven is my retirement plan!
But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefor do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own (Matthew 6:33-34 NIV).
(1) God saw all that he had made, and it was very good (Genesis 1:31 NIV).
(2) ...’You must not eat fruit from the tree that is in the middle of the garden, and you must not touch it, or you will die’. “You will not certainly die,” the serpent said to the women. “For God knows that when you eat of it your eyes will be opened, and you will be like God, knowing good and evil.” ...she took some and ate it. She also gave some to her husband... (Genesis 3:1-7 NIV)
(3) “on earth you will have many trails and sorrows. But take heart, because I have overcome the world.” (John 16:33 NLT).
(4) The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged (Deuteronony 31:8 NIV).
(5) And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them (Romans 8:28 NLT)
(6) No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him (1 Corinthians 2:9 NLT)