Our Why

“Oh I love your ring! How beautiful!”

The lovely lady in purple extended her hand to show off her white buffalo quartz ring that confiscated half her finger.

“Thanks and welcome to Harvest church!”

This was the first time that Michaela and I had ever met. She greeted me with a joyful smile, a head full of bouncy curls and energy that emanated throughout the room. I was nervous and her presence was enough for me to feel slightly more comfortable in a foreign place. Thankfully, this was only day one of the many years of friendship to come.

And at first, I had no idea what to make of it. POTS? EDS? What on earth do all of these acronyms means? Not going to lie, I researched the acronyms to make sure she wasn’t pulling my chain. But as we grew closer, I could see her claims of disease and discomfort were more than claims but a very strong reality that stared her in the face everyday. She wore her, ‘I’m-fine-mask’ for as long as she could, but with time, her masks would slip and the challenges of getting out of bed, keeping food down, and conditioning her hair began to show. Slowly her challenges began to stare me in the face as well.

Now, as humans, I understand we all hide and try to cover up our flaws and perceived mishaps. However, never in my wildest dreams would I have guessed on that first day in the Harvest Church entryway the torture Michaela sometimes endured. How could a woman filled with so much love be entrenched with so much disease? However, as grotesque and backwards as it may sound, I am grateful for Michaela sharing her diseases with me. Yup, I said it. Why? Because it has taught me a deeper level of compassion for those that can’t do it alone; which is truly all of is. Angels like Michaela are sent here to remind us that we are in this together, we are never alone, and we were never meant to do it alone. Saving a Spoon for Michaela is a small  reminder that, they too, are not alone; remind themselves that everyone is a part this community and we are watching out for one another.

I am honored to call her one of my dearest friends.

I am honored to help her along her journey.

I am honored that she helps me along mine.

I am honored to be a zebra warrior angel.

You can feel honored too. 

Michaela is one of the most selfless people I have ever met. If you see Michaela, she will be helping someone in some form, whether it be that she is ensuring they are healthy and happy, checking with all of her loved ones to see how she can help them, arranging meals and rides for those who need them, showing everyone around her love and attention, or simply smiling at a stranger. Michaela is always the first one who will be there for someone in need, and is the last one to ask for help when she needs it. Michaela is loved by so many, and it is very hard for her to swallow her pride and ask for help, as she is always the one helping others.

Michaela has been struggling for some time with multiple disorders:  Ehlers Danlos Syndrome (EDS), Postural Orthostatic Hypertension (POTS), Mast Cell Activation Syndrome and Intracranial Hypertension (swelling in my brain), along with numerous other secondary conditions. She struggled for years without a diagnosis leaving her to struggle everyday functioning. She was finally diagnosed in 2009 and 2011 with POTS and EDS and has been working with geneticists and other specialists since to help her cope with her symptoms and assist with her everyday life. Some secondary conditions that Michaela has developed since receiving these diagnoses are asthma, severe allergies, gastroparesis, chronic pain, chronic fatigue, vocal cord dysfunction, mast cell activation syndrome, and her intracranial hypertension (swelling in her brain) is now causing her to have vision issues as well as issues with basic muscle movement, loss of strength and increased nerve pain. Michaela deals with this pain unmedicated and is not able to take strong pain medications to assist with her pain. There are times that Michaela can’t feel her feel due to severe neuropathy, however, she does not let this stop her from getting out of bed and putting a smile on her face.

There will never be enough ways to say how amazing Michaela is, but I will attempt. 😊

Being in the same helping profession as Michaela, it can take such an emotional toll on you, but you find ways to not burn out in order to stay present with the client and have the courage to sit with them in their worst moments. For Michaela, it does not matter if you are her client or not, she provides the same unconditional support, non-judgement presence and love for family, friends and even strangers even during her flare ups. Michaela can be experiencing high pain levels, but will still show up for her obligations whether it’s work, church, teaching pottery, making dinner, meeting friends, listening to other people issues, etc. Michaela does not use her conditions as excuses, she pushes through the pain to live her best life. At this time, Michaela has needed to rely on family and friends to help her with day to day activities because things have exacerbated. Michaela apologizes for needing help, but we are her tribe and will do whatever she needs. 

I feel privileged that Michaela reached out to me for help and letting me get a glimpse into her world and the obstacles and limitations she faces daily. Now, we are raising funds to help Michaela obtain a service dog that can drastically improve her mobility, day to day functioning, and alert for her seizures and epilepsy. To continue to do all the selfless things that she does to be there for others, she needs this service dog to be there for herself so that she can function. Please help Michaela get the service dog that she needs so that she can continue to be the amazing person who helps so many others. We are saving Michaela a spoon, so she can have enough energy without depleting her reserves.