This Saturday I will be speaking to a room full of people like me. People that used to maybe escape for weekends at the beach when their work life got too demanding, someone who would pick up the phone to gather friends at a favorite restaurant.. someone content to spend hours of quiet time with a good book, a good movie, a good friend. This was all before they began living with an illness, looking for answers for their child, or for themselves.Before the day a doctor sat across from them, telling them about mitochondrial disease and everything changed.
I don't talk about mitochondrial disease . Especially around my kids. Mitochondrial is a big word, disease is an ugly word and the two words together ? Well.. it's complicated. Essentially, mitochondria is in every cell of your body and responsible for producing more than 90% of the energy the body needs to sustain life and support growth. When mitochondria fail, less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. You can read more, but once you learn that it is progressive and that as of today there is no cure.. the documented details can be grim.
Learning about mitochondrial disease changed me. Finding the diagnosis we so desperately needed - was a relief. But after that, there was grief, frustration and finally... determination.
Cancer used to scare me until this happened. Because when you have cancer, there most always is some type of treatment, a foreseen idea of what the future will hold, how the illness will progress. You can plan, you can prepare. You can even fight back.
We take my daughters to the Cleveland Clinic, and there we see one of the best, most knowledgable expert physicians , and for that I am so thankful. But still, there is no real treatment, no real plan and no expert guess as to what the future will hold. You can only manage today, and your only chance in delaying the progression of this is to be vigilant . Illness, infection, and physical stress can increase progression. And so I am always monitoring sleep, food, heat stress, energy levels and illness. And always monitoring, is stressful . I want us to live each day fully, make memories, be normal, but I also know that the decisions I make today will affect their life tomorrow.
Today I am not as social as I used to be. I still like music, movies and good restaurants. I still can make people laugh, yet today it's mostly my husband and at the most unexpected times, usually at the end of the day as the children sleep and we settle into our new normal.The great restaurants are replaced with new recipes we try at home. We make the most of our time together, enjoying the backyard, the simple thrill of opening the french doors during dinner, letting the desert breeze in and marveling at the Arizona sunset , magentas and purple splashing the sky.
I am losing touch- with friends, people I admire, even family I love. There is not enough time to pursue and even maintain relationships, personal interests, and it hurts. It is hard to steal the time away -on the phone and especially in person. There are medicines, appointments, unexpected illnesses. There is daily living, fatigue, the summer heat , seizures and even more to manage. My children's lifestyles which require hands on supervision or assistance. I am working part time, trying to support my husband's business as well and sometimes, I am on the verge of even losing touch with myself. Each day I try to find a few minutes so that this doesn't happen. Time to pray, time to write, read a book, knit, a few minutes outside. I know that my health is essential to theirs.
So on Saturday, I am presenting a session at the United Mitochondrial Disease Foundation Annual Symposium, a gathering of physicians and families from all over the country, brought together by the common need , the desire to know more about Mitochondrial disease. The desire to understand it better- and the desire to be understood.
I will be talking about blogging and journaling, how to do it- what it can do for you- how easy it is. How blogging allows you to express yourself while connecting with others.
And on this day, I know the people I meet, will understand the complexity that comes with living with mitochondrial disease. To them, I won't be the friend who doesn't call, the childhood buddy they never see. The relative that is always behind at writing a note, sending a holiday card or staying in touch. I won't be the casual acquaintance who is often uneasy and awkward with small talk, especially when I am worried , stressed or on a tight schedule.
To these people I will just be the mom of two girls with mitochondrial disease, the one who writes about living with it, the one with the upbeat attitude, another mom who does the best job she can each day, just holding it together.