The Cross, Our Ladder to Heaven. Rita’s Story.

The Cross which was once regarded as a sign of suffering and hardship, through Christ it has become lifesaving.

Read this testimony of Rita Ghossein who helps put together a church newsletter each week. She explains how she has embraced her own Cross and how it has changed her life.

What is your diagnosis and what does it do?
I have a very rare genetic disorder called MLASA (Mitochondrial Myopathy, Lactic Acidosis, Sideroblastic Anemia). Mitochondrial Myopathy is a progressive muscle weakness which affects the whole body, my muscles do not produce enough oxygen to the energy cells and I also get very high amounts of lactic acid in my muscles with very minimal movement. Sideroblastic Anemia is a blood disorder where my body does not produce enough normal healthy red blood cells, this means I require regular blood transfusions which are keeping me alive – so I do urge you all to donate blood if you can, as it does save lives! There is no cure or treatment for Mitochondrial Myopathy and as I get older my condition will continue to deteriorate causing me to become a lot weaker and affect my quality of life.
How does it affect your everyday life?
Every day is an effort! My muscle condition causes me to always feel very tired and fatigued – it is an effort just to get out of bed in the mornings. I cannot walk far distances so I do use a wheelchair most times to get around, even walking short distances is an effort but I do manage. I require assistance in many everyday activities and my condition is causing me to slowly lose my independence. It’s an effort just to do the small things that others take for granted like trying to swallow without struggling (because my throat muscles are getting weaker) or getting tired talking or trying to cook or bake without getting tired arms and the list does go on. My condition affects me in many ways that people will not understand and probably never will.
How do you deal with it?
To be honest at times I don’t know how I find the strength to deal with it all and keep going but I do! I always try my best to keep a smile on my face, I stay positive, I hold on to my faith, I take one day at a time and I keep going! I have learnt how to deal and manage with my condition, although at times it is challenging but I know God will not give me anything I cannot handle. I place it all in His hands and ask for the strength and courage to keep going and not give up.Has it made you closer to Christ?
I would like to think it has.
 
Why? (or) Why not?
It might sound odd but I feel in a way I am sharing in His suffering, which I always offer up to Him and pray it will hopefully get me closer to heaven.
How do you get closer to God?
Through prayer and always thanking God for all I have been blessed with.
How have you learnt to accept it?
I owe that to my parents. Growing up they never made me feel like I was different or I couldn’t do anything. Even though I am very limited to what I can do or struggle to do it, my family always encourage me to keep trying and they always work around my needs to make things easier. If it wasn’t for their love and support I honestly wouldn’t be able to keep going. In many ways my family is my strength and the reason I keep pushing on.
When do you feel the closest to God?
When I am sitting in church in silence and deep in thought. It’s amazing how you don’t need to even say anything and you can just feel that comfort in your heart. I always ask God to never leave my side and hold my hand through each and every day.
What is your greatest accomplishment?
Getting a job and working in admin for 3 years. It may sound silly to others but that was my greatest accomplishment. Getting a job was something I only dreamed of doing but never thought would be possible for me to ever do due to my health, but I was lucky enough to be blessed with a slight improvement in my health in 2011. I had more energy and strength and was able to walk longer distances without getting as tired and I wasn’t needing to use my wheelchair as much, I even had a nice 4 year break from needing blood transfusions. I had gained independence, something I never really had before and was exciting at the time to see the things I was capable of achieving. I knew there was a chance that my health would go backwards again one day so I took the opportunity in 2013 to get a job, do some volunteer work at church and just enjoy being able to do more. Unfortunately at the beginning of 2015 my health slowly began to go backwards again and I was requiring blood transfusions again and my energy levels were dropping again. I tried to keep pushing through as long as I could with work but it just became too tiring as my health continued and still continues to go backwards, so I had to give up working at the end of 2016. I am still continuing doing volunteer work at church but it does become challenging at times but I’m not one to give up too easily.
What are you most afraid of?
I think we are all most afraid of being judged before God. I am also afraid of  knowing the impact that will be placed on my family as I continue to deteriorate in the future.
What was the hardest time of your life?
Losing my older brother to this same condition and watching him suffer before he passed away was the hardest time of my life. Growing up together we understood each other and we could relate to one another. He was more than just my brother, he was my friend, my person to talk to and of course my hospital buddy. We went through so much together and in so many ways that brought us closer together. We both understood what each other were going through and it is now hard having to continue to keep going without him by my side every step of the way.
What are you striving for?
Just to get through every day and enjoy life as much as I possibly can. To spend as much time as I can with my family and create many enjoyable memories with them. I am also striving to try and stay as well as I possibly can and to make others happy – I hate seeing anyone sad or upset!Something I would like others to think about..
I cop a lot of judgement from others… when I park in a disabled parking and decide to walk that day, I get a lot of death stares and nasty comments. It doesn’t mean if someone is young and may LOOK fine that they are faking or just parking there for no reason. Or if I’m in public and I randomly get out of my wheelchair and walk a bit, people just stare and shake their heads and assume I’m faking it. One thing I would like everyone to think about and really take with them is you never really know what someone is going through. Think before you judge them!

By Rita Ghossein