I’ve heard it said, "If you can't change the situation, change your attitude." I am a 47 year old mother of 2 teenage boys and a wife of 20 years to an exceptional, loving and beautiful man. My situation is called mitochondrial myopathy. My attitude is to accept my cross and believe that I am not carrying it alone. I learned to persevere peacefully doing the best I can with what I have and remembering to smile. This is certainly easier said than done but, its great advice in any situation. A positive attitude, a strong support system and a solid growing faith in God is what has helped me persevere through my life’s trials. God sent His son to live on earth like a regular human being. He suffered the greatest trial of all, yet, he carried His cross to the end, as hard as it was, always believing that God would make everything right after all was done. So, if Jesus could do it, we can too. I've been blessed with some beautiful people in my life who support me in various ways as I carry my cross. I know there is a reason for it all, though, I am not sure what it is. I believe it has to do with being an example to others of how to live with the challenges life brings without being angry and bitter, and without asking, "why me?" Through it all, God is my strength, my perseverance and my hope.
Mitochondrial myopathy is a disease caused by damage to the mitochondria which are found in our cells. The mitochondria are what produce energy in our bodies. Basically, my mitochondria does not produce sufficient energy. The effects of this disease are manifested in various ways. The illness affects both the nervous and muscular system. There is no cure or treatment for this disease. Simply put, I get tired very easily and you can see this just by looking at me or listening to me speak. I have progressive muscle weakening throughout my body. This is most apparent in my eyes and face. When you look at my eyes, my eyelids are drooping which gives the appearance that I am sleepy. The movement of my eyes is limited so much that it is easier for me to move my whole head to see something than to just move my eyes. My depth of perception is challenged so, when I descend or ascend steps, I must take extra care because the steps can appear closer than they actually are. I have fallen many times but, by the Grace of God, I have not suffered any serious injuries. Needless to say that steps and staircases scare me. In Christ, we have a great example of strength and perseverance so, I too desire to get up and persevere. This depth of perception also makes me uncomfortable in places I haven’t been before. I take refuge in environments I’m most comfortable in.
My voice is also affected. I have trouble speaking clearly and being heard. I constantly repeat myself. This has also affected my tongue, making swallowing difficult for me. I always try and keep a beverage close by to make swallowing a little easier. You can see some drooping in my face. It appears as though I am frowning. This is because my face muscles are partially paralyzed. I don’t have a full smile and my teeth don’t show no matter how big I try to smile. I’ve even lost feeling and sensation in different body parts making walking or standing for a period of time very difficult. People who don't know me stare at my face. Very often, I see people doing a double take. Sometimes I can hear whispering about my appearance. They are unaware of my situation so I know I have to be patient and understanding of this. After all, if the situation was reversed, I might find myself staring too.
I do have moments when I wonder how my life would be different without my illness, but, those moments pass as I am more grateful for what I have than bitter for what I lack. I am very well aware of the blessings my illness has given me. The most important one being that I was able to be with my children, watch them grow, and support them all through their lives to this day. I was able to attend every school event they were involved in since I didn't have to work regular hours. This was such a blessing and I am so grateful. However, sometimes, I am not so positive and even feel low spirited when I consider I have a Bachelor’s degree and if things were “normal”, I would be working and perhaps advancing. Nevertheless, I am learning that neither my education nor my medical condition define who I am, my words and actions do.
In 2010 I started having anxiety and fell into a depression. I was a mess. If your mind is ill, your body will also be ill. Suffering this second illness took a lot of energy out of me which made my myopathy symptoms much worse. Eventually, with the help of doctors, medication, support of my family and growth in my relationship with God, I began healing and feeling more like myself in late spring of 2011. There were many times during this period that I thought I would never be "normal" again. It was a dreadful experience, one I never want to have again.
The Serenity Prayer is my favourite prayer. While sitting and reading it in church one day during my healing process, the words made so much sense. "Living one day at a time", this is the only way to live. I feel that this was a turning point during my depression where I slowly began to be able to control and push away the fears. Since this experience, I value the ability to feel peace in my body, mind and soul and I am so grateful to be able to feel peaceful today. It was in the summer of 2011 that I became a Eucharistic minister. I adore this ministry and it strengthens me. My husband and children also serve the mass and this makes me happy and proud. Together, we serve our Lord.
My husband's name is Peter. His name means "rock". Peter is definitely my rock. I depend on him for many things. He is very helpful and supportive, knows my weaknesses and knows and/or can foresee when something is difficult for me and will help me out. He, as well as anyone who really knows me, is mindful of my need for a helping hand to lean on for guidance up/down stairs. This is very comforting for me. Peter willingly helps me in many ways that help make my life easier. I often feel guilty when he is doing things that I have a difficult time doing. I feel bad that he has to do so much but he says that we are a team. The truth is that I need the help. I do what I am able to but I know that it will get harder. As it stands, I am still doing pretty well. Without Peter's love and support, I would suffer more and I would not feel the joy I do with him. Without his love and support, my life would be more difficult and less enjoyable. My two boys are also understanding of my situation and supportive by helping me personally and by helping with chores around the house. My family is God's great gift to me for which I am so grateful.
My biggest fear is losing Peter. I also fear losing the ability to feel peace like I did during my darkest times of depression and anxiety. I always pray that I am able to feel peace especially during the most anxious situations. I fear losing this ability as this disease worsens my health or in other very difficult situations. I noticed that I am able to deal with negative situations much better now than before my experience with depression/anxiety. However, I really fear that all that progress would go out the window when I really need it. "Be not afraid”, “Jesus help me" and "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways submit to Him and He will make your paths straight" are all words from the Bible. I focus on these encouraging words daily and more so in difficult times to help me persevere in faith. It also helps having a positive attitude and the support of my husband, family and friends.
Something else I find helpful is helping others. It takes the focus off me while I help someone else in need, even if only to lend an ear to someone who needs to be heard. I don't walk around feeling sorry for myself neither do I want anyone to feel sorry for me. I smile as much as I can though, I am also self-conscious that I wear my disease on my face. I do get uncomfortable especially around people who don't know about my illness. Actually, I prefer telling people about it so, that way I don't have to wonder what they are thinking. Above everything and the reason I can do all I can despite my challenges is God. I have faith that God is always with me. I have signs that He is with me. I could not have come this far without Him. I cannot move forward each day without Him. I pray that I can always feel His presence because God is good and He will always help me. I also turn to Blessed Mary for her intercession.
I have learned to accept that I must ask for help when I am not able. I have learned whom to ask and whom to trust. I have learned that I should focus on the "now" because God will provide for tomorrow. Of course, this is easier to do some days than others. Over the last 6 years, I have met several beautiful people who I can turn to in times of need and they can turn to me. I have learned to live my life with "an attitude of gratitude". HE has a reason. HE will guide me along the way.