Ten

Ten

Ten (number)
equivalent to the product of five and two; one more than nine; 10

Ten – number of years, to the date, of being diagnosed with MS

April 15, 2009 – ten years of living with multiple sclerosis

Ten years ago I couldn’t see what or where I would be now.

Ten years ago I walked into a hospital in a small European city to get the results of a lumbar puncture from two weeks prior. Like a movie, I stood outside of the hospital for 15 minutes, knowing that might life would never be the same coming out on the other side. I took a deep breath and in I went. I met with the resident on duty, a name I’m not sure I ever knew, where I was told in a hallway, that the CSF results were 99% conclusive for multiple sclerosis. What’s next? Call the clinic after the holiday. Two weeks later I came home to New York and collapsed on my family and a neurologist I met, once prior, a few months earlier.

Ten years ago, I got MS for my 40th bday, but on the verge of turning 50 (geez!) in a few weeks, I look back and recall my neurologist told me that I would be ok. And that I would likely continue to live my life with mild disease burden. 

Ten years ago, I could never have seen what he told me. Ten years ago my insides were sicker then they had ever been, and yet looking at me, I “looked so well.” I couldn’t hear people, over the buzzing, literally, that I would be ok. That I would be more than ok. 

Some nights I laid awake 3,000 miles away from home, in a foreign country, wishing that I had a terminal illness so that I didn’t have to live the rest of my life in turmoil. It wasn’t that I wanted to die, I just couldn’t envision living the way I was at that time. 

While I am fundamentally the same slightly cracked, mildly scrambled, person I was prior to the MS, what I learned is that life probably wouldn’t have been too different had I not been diagnosed with MS. Meaning, I’ve heard people say that being diagnosed was life altering for them. That they found more meaning then if they hadn’t been diagnosed. 

While I have made friends along the way as a result, and hopefully helped a few as well, I would tie this convoluted “gift” up in a bow, and give it right back to where it came from without thinking twice.

Multiple Sclerosis doesn’t just impact the people who have it. It touches everyone around it. It’s like a super old ivy growing around a building. It can look beautiful, but yet wreak hell on anything it comes in contact with, strangling everything in its path.  

People like to use war analogies for diseases (warrior, battle, fight, etc.). Or I’ve heard so many times over the years, “I could never do what you do.” Or the phrase, “you don’t know how strong you are until you have no choice.” I cry bullshit to all of it. If people get sicker, does that mean they have fought hard enough and it’s their fault? I am not a warrior, I am not special. We all have our “things” to deal with and we do in our own way. 

Ten years later I am still a grand daughter, daughter, sister, cousin, friend, business owner, music lover, foodie, traveller, part-time contrarian, ever reforming type A control-freak workaholic, and questioner of science & medicine. 

Two years ago to the day, I started this blog & social media (Facebook & Twitter). Thanks to everyone who sticks with me and it. 

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Thankful

Thankful

Thankful (adjective)
expressing gratitude and relief

A – autumn chill
B – body that carries me day to day
C – city life
D – dancing
E – exercise
F – family & friends
G – giving
H – happy
I – ice
J – jam
K – kindness
L – love
M – music
N – naps
O – options
P – pizza
Q – quiet
R – red
S – sea
T – tough
U – unusual
V – visual
W – winter
X – no more xenophobia
Y – yippee
Z – zany

Thankful to those who continue to come on this journey with me.

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Gratitude

Gratitude

Gratitude (noun)
the quality of being thankful; readiness to show appreciation for and to return kindness

Tonite was a typical summer evening in NYC, aka hot & sticky. I had planned to attend a great concert, but wasn’t sure my body would hold up to being outside in the humidity, and while it’s not pleasant, I haven’t been giving my body enough credit lately. To set the stage for just how humid it’s been? I have pretty much straight hair and even I’m sporting a top knot these days because my hair is going “poof” the minute I’m outside. So, yes, it’s HUMID. So done with summer!

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I pushed myself to go and was so glad I did. For most of the show the humidity went away a bit and I got to enjoy it. And then when it did come back again, by that point my body was acclimated and I was able to get up and dance for the remainder of the time.

Looking around at the crowd and the NYC skyline and the audience enjoying the music, a wave of gratitude came over me. I’m grateful to have wonderful family and friends in my life. People who both cheer me on and tell it like it is.

I’m grateful that I feel healthier than I have since the diagnosis nine years ago (and 10 this month since symptom onset). I’m grateful to have access to medicine, fitness, and doctors that are part of keeping me healthy (I wish everyone did, but a topic for another time). I’m grateful that I have a body that I’m feeling a little less like its betrayed me or I’ve betrayed it.

I’m grateful to live in a city that cares about protecting everyone, warts and all. And I’m grateful to be in a position to give back to my community and organizations that need it, especially in the current political climate (literally).

Keep on keeping’ on…

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