Our Sweet Vanessa Needs Our Help

Regardless of where or when you met her... at Lake Wallenpaupack as a sassy child

and teenager, at Penn State as a rebellious college student, or in Florida as

a successful woman and insanely devoted mother to Emma and Nathan... you were blessed with a friend who would always have a kind word to say and a helping

hand to lend. I met Vanessa on a school bus when we were eight years old. She is my

lifetime best friend, my soul sister, and my reminder of who I am and where we came

from.

There are no words or explanations for why life has handed her an unfathomable and

heartbreaking journey. I hope one day we can make sense of it and see a greater

purpose. For now, I ask whoever can help, to do so. The funds will be used

for in-home care, occupational/physical therapy, alternative therapies, medical

equipment, and anything else to ease her pain and difficulties. Any and all gifts are

received with immense gratitude and love.

In her own words...

I recently turned 52. I was ever more grateful than I thought I would be. Not only

because my thoughtful daughter planned a little party, and my amazing son baked a

pie… but because I made it. Amazing how life’s perspective can change in an instant. I

had always envisioned myself easily making it to at least 80 with my healthy lifestyle,

and excitement to watch my kids grow up. Of course, I knew I had to see how these

beautiful children would change the world.

So, I chose to eat well, exercise, love my people, meditate, create my art, use fewer

chemicals, and otherwise try to live healthily. At the end of 2019, I was the most

physically fit in my life. Then the dreaded COVID changed the world. The medical

anxiety I had been experiencing since my early 40s exploded. My mind told me I could

get this virus and either die or possibly kill someone by giving it to them. Weird things

started happening with my body. I went from kickboxing and being on the go all day to

needing a cane, then a walker and then a wheelchair. Passing out several times a

week. My general doctor, a cardiologist, a neurologist and several internists threw their

hands up and proposed it to be anxiety. I knew from experience what anxiety felt like in

my body. This was not it. I took a chance and called the Mayo Clinic, then traveled the

700-mile round trip three times. There was extensive testing, more vials of blood than

I’ve ever given in my lifetime. Multiple scans, MRI, lumbar puncture, EEG, and more.

And ultimately, an answer.

I spent over a year in pure denial, only telling a few people. My mind was

just not equipped to handle it anymore. A lot of you know I have been ill or have noticed my non-presence. It feels embarrassingly well past time to rip off the band-aid and be true to all of my family and friends.

So here I am, feeling very vulnerable and scared. In April of 2021, after more than a

year of symptoms, I was diagnosed with MSA. Multiple System Atrophy is a rare neurodegenerative disorder that has no cure and disables people in the prime of life (50-60 years of age). This is a disorder that affects the whole body; with the usual exception of cognitive impacts. I am all too aware of what is happening. MSA is attacking my neurons which signal movement, and autonomic nervous systems such as breathing, blood pressure, digestion, vision, speech and more. It also affects sleep through discomfort and REM sleep disorder... and mood with apathy, depression and anxiety. And the prognosis sucks. Not only do symptoms progress rapidly, but people typically only live about 6 to 9 years after symptoms first appear. Truly overwhelming physically, mentally, and spiritually.

I ask that you please forgive my timing and delivery... this is surely not how I wished to

tell you. I carry family and friends so close in my heart, and I didn’t want to “harm”

anyone. Plus, as many of you know, I don’t like the spotlight or asking for help. I do

need you to know that one of my blessings is the peace and smiles I get while

wandering through my memories.

It is ever so poignantly true that you do not always know what someone else is facing.

So, I encourage you to … Be kind. Stay present. Find joy. Love hard. And in situations where you do not know what to say... it may feel awkward... but make that call... write that message... mail that card. Even if the person is not quite ready to receive it on that day or at that moment, it can mean the world to know that you are not alone. Because I can attest that being this ill can feel very lonely indeed.

Blessings and love,

Vanessa