Concrete Steps

I woke in need of coffee on the third floor of an apartment building Sunday morning. My son had left for church so I downloaded the Door Dash app and eventually figured out how to place an order. Forty minutes later, a young mom delivered a two-thirds filled small cup of coffee... when I was certain I’d ordered an extra-large.

Disheartened, I savored each sip. Then, texted my oldest and asked him to pick up more on his way home. Guaranteed it was on the way, I laid back down in anticipation.

When a car door slammed outside my window, I sat up and watched Nathan exit the car. 

When he paused empty-handed, we both realized he forgot to stop.

The morning mishaps would’ve been avoided if I’d remembered to bring the old coffee pot my mom found in her basement. But no, I left it in my living room when I packed for two nights away. And with a probable stress fracture forming in my left foot due to the recent changes in my gait, I had to limit my time on the concrete apartment steps.

Thankfully, I’m home, only steps from my coffee pot, and all is well. 

But I once climbed Stone Mountain for the Easter sunrise service with my little boys in tow. Sam was not happy even in his new light up shoes. But I felt extra triumphant as we sang Christ the Lord is Risen Today with a view from high above—in matching train sweat shirts.

Now, I have to weigh how and when to climb concrete steps to visit my son. So, with mito awareness week fast approaching, let’s talk mitochondrial disease. 

As stated on the Mito Action web site, “Mitochondrial disease is an inherited chronic illness that can be present at birth or develop later in life. It causes debilitating physical, developmental, and cognitive disabilities with symptoms including poor growth; loss of muscle coordination; muscle weakness and pain; seizures; vision and/or hearing loss; gastrointestinal issues; learning disabilities; and organ failure.  It is estimated that 1 in 4,000 people has Mito. It’s progressive and there is no cure.”

Further down on the same web page, they answer this question well: 

What are the Challenges of Living with Mitochondrial Disease?

• Affects multiple organs, affects multiple family members, affects multiple generations.
• Lack of awareness and understanding of the disease.
• Families are continuously forced to expend their very limited energy to explain their disease, advocate for themselves and fight for services.
• Mitochondrial disease is often an "invisible disease."
• Good day—Patients look fine and healthy. They have more energy and appear rested.
• Bad day—Patients appear tired to significantly ill. They are obviously fatigued and/or have significant illness. Repeated "bad days" often lead to decompensation and patients have difficulty returning to baseline.
• Mitochondrial disease is unpredictable. Day to day, hour to hour patients can develop symptoms and their stability can be threatened.
• Difficulties establishing a diagnosis interfere with a patient's ability to obtain adequate recognition, medical care, insurance coverage, healthcare supports, and disability services.
• Lack of understanding of the disease and misinterpretation of symptoms can lead to misdiagnosis. Further progression of symptoms can occur if the symptoms are missed and opportunities for treatment and support are not recognized.
• An individual can become symptomatic at any time in life despite the fact that it is inherited.
• It is difficult to diagnose.

[Read more at http://www.mitoaction.org/mito-faq]

While I’ve read that list in past years, I found renewed comfort in it today. I often feel misunderstood, sidelined, and overwhelmed by medical decisions and the fight for care—especially when new symptoms creep in—like last week.

One night just before bed, my vision split in two with my prism glasses on. Ever since, I’ve struggled to maintain focus. Questions haunt me: What did I do? Is it something I ate? Too much gluten? Why now? Will they ever stop getting worse?

An eye patch helps and bracing my left ankle today calmed the foot pain. But with my right hip tendon also in crisis, what’s a girl to do? 

Rest. Pray. Exist. Sing. Eat. Nap. Write. Nap. Teach. Pray. And pray more.

And as mito awareness week approaches, ask two things:

1) Will you consider purchasing a t-shirt to spread awareness in your circle of influence? The one with giraffes? You can find it here: Buy $15 Giraffe T-shirt Here

2) Will you consider donating to or buying a ticket to attend the Hope Flies Catch the Cure event? Sep. 21@ 7 pm @ The Fairmont. The Foundation for Mitochondrial Medicine partners with those who are working to find a cure. 

Trust me, I'm not comfortable asking for money because there are so many people in need and so many good causes to join. But since this is where I've landed in life, I'll push through my discomfort and hope that selling a few t-shirts and sharing about Hope Flies may somehow serve as concrete steps forward in the mito world. 

For now, this is the song I can't get enough of as I drive around town...




Most photos courtesy of pixabay.com