a little about what happened

-
                    *photo I asked my daughter to take of me, as she washed my hair~ shortly after I got sick in March of 2017

This is my first blog, so forgive me if I am a little all over the place. I am still not the best at typing, as my right side (including my dominant hand), continue to experience intense nerve damage from my first MS episode in March of 2017.

I was 47yrs old. My two children were 12 and 17 years old at the time.

My intention with this blog is to share my experiences with Multiple Sclerosis (I had to respell sclerosis three times, as sometimes spelling simple words eludes me now). I hope to debunk some misconceptions about this auto-immune disease, as well as to selfishly understand more about how having MS has and continues to change and shape my world.

This photo is as good as any to begin this journey. What it doesn't show, is that I was crying while Bella took the photo. Not because I was scared or feeling sorry for myself, but rather because I was overwhelmed with the love and patience my 17yr old daughter had, and continues to have for me. I couldn't wash my own hair, dress myself, or take care of my children. I had gone from being a part time working mom, having my kids five days per week, part time post-bacc student planning on entering a masters in counseling program, part time home school teacher for my 12yr old son who was born with special needs, and new girlfriend to an amazing man I worked with and had only recently started dating and living with (more on this later)... to a nearly immobile, partially nerve damaged, visual and cognitively impaired person ~ seemingly overnight.

I spent the first many months moving from our bed to our couch. I had to use the walls and furniture to guide my movements. I didn't go outside. I didn't even think to. We were at the ER numerous times that first month. I had five MRI's. I had a spinal tap. I had eye exams. Because of my (ahem) advanced age, the neurologists first suspected I'd had a stroke. Only, they couldn't figure out why things continued to worsen. They finally figured I had one of three things: MS, an optic neuro disease I can't remember the name of, and a type of brain tumor that had an 18-44mo. life expectancy. Can you imagine? Everything felt quiet. It was impossible to wrap my head around if the diagnosis were number three. How could I leave my children?

Saying we were beyond happy when we learned it was only MS shows you how little we knew about it. My new neurologist said that if my sensation in my right side didn't return within 18mo, it most likely never would. It has been 17mo now and it seems this is my new body.

Ouch.

Loss is most definitely a big part of my journey, but surprisingly, so is gain.

Before getting MS, I remember how often I would lightly say, "I really need to Slow Down!" Only, I know myself well, and I wasn't willing to slow down. I didn't understand self-care. I couldn't even understand why people, grown adults(!), would take naps. There is so much that can be done instead! I'd think.

But it seems something snapped. I wasn't eating or sleeping enough, almost running from task to task, taking care of my children, exercising, always trying to be the best student, keep our home clean and cozy, loving my new guy...and then out of nowhere, I got my wish. I got to finally slow down, completely and utterly. MS, as impossible as it is to believe, granted me my wish.

I think that's enough for my first entry, I need to eat.

xoM


     




Popular posts from this blog

Growing into Consciousness

-
Image
   It's been a minute since I've sat down to write. Not for a lack of subject matter, more out of a deep desire or need to just Be Here Now. Yep, I've been on the deepest of dives into what it means to be human, alive, and semi-self aware. This morning, while on an Eckhart Tolle youtube binge, I heard him say something that Really struck a chord,           "If things don't get difficult, there's no Growth in Consciousness." I used to live in a pretty serious amount of Fear around worthiness. I imagined that 'you'd' like me better if I embellished a little. Later, I got myself into some rather sticky situations, and learned that flat out Lying also worked. LOL. Worked?! Yeah, it worked to get me to the place of no longer trusting or even Believing in myself. I started fretting over whether or not my stories might unintentionally get mixed up, overlap, or seem flat out ridiculous. Throw a little wine on any story, and it's an impossible situa
Read more

Henry's Fever - a found journal entry from January 25th, 2015

-
Image
  Us ~ January 2014 (a year before writing this post) 1.25.2015 Henry has a fever. After spending most of the afternoon curled up on the couch, a tiny ball underneath an old quilt I bought this summer at a garage sale down the street, he is finally up and eating. He sits straight up in his little chair - not quite a high chair, but almost, as if there were a rod pierced down the center of his spine.  I have come to almost enjoy when the children are feverish. There is something so ‘other worldly’ about their behavior. It’s as if they are in some kind of limbo between this and another parallel universe. They are shadows of themselves. Alternate versions. He is in a waking dream and I am one of his characters. His head pops up, “I have to go to the bathroom!” and he jumps up and quickly heads to the door.  “Do you have to go pee or poop?” I ask. He pauses at the doorway, “Um…You should say, ‘One or Two’”. “Okay”, I agree, “Do you have to go One or Two?” “Which one is One?” he asks. “Pee”
Read more

rethinking the 'look good'

-
Image
little me in the first grade ~  I was already aware of the 'look good' at age seven. I can remember the photographer urging me to smile big, show my teeth! But I hated my little teeth and the gap between my two front teeth. My solution? Just hide them. Easy enough. Only, there is so much more going on when one tries to hide from the rest of the world. The thinking behind it all for me has always been this: what if I show you all my 'ugly' parts and you realize that I'm just not special enough to deserve your time, attention, or love? It's a self-protection move, of course. Being the youngest of five children, with three of my siblings being older sisters, I was keenly aware of some of their struggles around confidence and self-esteem, and hoped to learn from them, so as not to incur any unnecessary hurt. Sounds smart, right? Only, I had no idea what path I was setting myself on at the time. First it was my teeth, then the darkness of skin, my weigh
Read more