Monthly Archives: March 2015

FOR LYNDA

Some of us are lucky enough to have an amazing Mom. A funny, well adjusted, sarcastic, intelligent, beautiful, wise, caring Mom. And some of us are lucky enough to have two.

When I was in 7th grade I met Wendy. We became very close friends and remained that way through High School- even cheering together for several years. Looking back now Im not quite sure why the heck she was friends with me. Wendy is a doctor now. And she married a guy thats some sort of fancy research neuro doctor guy. Wendy studied a lot. And made good grades. And good decisions. See- not sure why she hung with me…although I can be fun 🙂

One of the benefits of being Wendy’s friend is you also get Wendy’s Mom, Lynda. When I would spend the night at Wendy’s house (which was quite often) Lynda would make us fresh baked cookies and bring them to us in Wendy’s room with milk. WITH MILK! Now- I know some of you know my mom, Karen Ellis. Witty, funny, sarcastic, smart, a little type A…but COOKIES AND MILK? Not that kind of Mom. Love you Karen but your strengths lay elsewhere- as do mine. My kids know Im not a cookies and milk kind of Mom. And thats ok. My very matter of fact Mom explained the birds and the bees on my chalkboard with drawings of a uterus and “man parts” and the very scientific terms that accompanied them when I was 11 or 12. Im still scarred to this day. Yes these are the same parents who blared Led Zeppelin all through the house in my childhood. What can I say. Practically liberal they were! Love them for all of that.

But I’d never been around a Mom like Lynda. Cookies and milk and ALWAYS ALWAYS ALWAYS smiling. Always sweet and happy and in a good mood. She made the perfect Elementary School teacher. God Love her. I could tell my Mom anything. No matter what problem I had- and she’d immediately draft a solution on an excel spreadsheet and help implement said plan without a hitch…..Lynda- she’d hug you tight and tell you its all going to be ok. Lucky me to have two Moms in my life. My Mom and Lynda are very VERY close friends. Best friends now. Have been for years. Yin and Yang.

I got to be there the day Lynda married Glen. I was 16. I remember thinking how lucky they each were to have found each other. Glen is so super cool! I am so blessed and privileged to have been there for that. Sometimes fate gets it right with two people.

When I was 18 my senior year of high school I was trying to decide between going to the local university just 30 minutes from my house or the college 3 hours from home. I was scared of leaving home and really debated on what to do. And there was a boy. He was staying local. So there was that. Lynda was over at our house and we went outside (just the two of us) and sat on my front steps on Addington Drive and talked. Well- she talked, I listened (thank God). She talked about the importance of leaving home and spreading your wings and getting away from your parents and NEVER doing anything because of a boy. And she helped make a decision for me- to leave home- to go away to college. I will never be able to repay her for helping me to make that decision. She was RIGHT!

When I was 33 I got a call from my Mom that my Dad had been in a horrible accident in Colorado on his motorcycle. She immediately got on a plane and headed for Denver to be with him. I began frantically running around my house, making calls, trying to stay updated on his condition. There were so, so many people in my house that day that I can barely remember it all. I really do not remember who all was there. It felt so strange to not have my Mom or sister or brother with me. When the call came. I was laying in my bedroom floor curled into a fetal position screaming and crying and SHE was there. Holding me. And just hugging and rocking me. Like a Mom does for her child. In my Mom’s absence, in the moment I found out my Dad had passed…she was there. Thank you Lynda.

Every year since my Dad died Lynda (and my Mom’s other dear friend, Shirley) have spent my Mom and Dad’s anniversary weekend with my Mom. They go camping with her or out to dinner or to a hotel or wherever. So sweet of them to spend what would be an otherwise sad day making my Mom laugh and fall off of horses (inside joke) and surely getting her drunk on wine. The GREATEST thing I learned from Karen was to make incredible friends and CHERISH them. I don’t know what I’d do without my friends.

And now Lynda has cancer. And I told Wendy I’d keep this blog “clean”. And Im not sure how to do that. Because Im mad. Im pissed. Im angry. There are a lot of good people in this world. But NONE are better than Lynda. A heart of gold and the grace of an angel and the sweetest personality ever. I have no idea why crap happens to good people. I’ll never know that. I gave up trying to figure that out years ago. But Im still mad. I hate cancer. Cancer sucks. So does Brain Rot. And Hypothyroidism. And Hashimotos. And Parkinsons.

But I love life and Lynda and I want her to know publicly how amazing I think she is. What an amazing person she is. That she has been and continues to be such a positive influence on my life. I love you Lynda! Karen loves you too and I love you more for what you’ve done for my Mom. If I could I would kick cancer’s ass (sorry Wendy) all over the place. I’d annihilate it and never allow it to harm anyone again. Im praying and hoping and wishing and crossing my fingers and meditating and using all that I have in me to make that cancer go away. You are a fighter Lynda- always have been. Love you- now kick cancer’s HINEY! :)-

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AND THEY DANCED

So it’s taken me a day or so to process the 3 Day Ataxia Conference that Patrick & I attended in Denver this past weekend. I am usually NEVER at a loss for words but I spent several days rather speechless….believe it or not.

Ataxia describes a lack of muscle control during voluntary movements, such as walking or picking up objects. A sign of an underlying condition, ataxia can affect movement, speech, eye movement and swallowing.

I am not sure what either of us expected. I know we both felt a tad nervous and worried about who and what we would see. I think I can speak for both of us when I say, honestly, there was a fear of “Seeing our future”. You know- people in wheelchairs and on walkers and unable to move or speak. I like to live in a little world called “Denial” so this was going to sort of rock my world a little and shove it in my face. Patrick has never been social, or said much, or liked people in general so this was a BIG step for him. I feel as if I don’t want to talk about HIS experience. Because it was HIS. Not mine. And though I live this everyday it does not afflict my body so my experience is different than his. So I’ll speak for me.

First of all I met some unbelievably amazing people. Damn. Sometimes its funny to see or hear people complain. In person, on social media, on tv, wherever. We all do it. It’s human nature. “I hate daylight savings it makes me tired”, “my kids are driving me mad”, “I’m too fat”, “I have a headache”…whatever it is we all complain. I am no exception to that. But a few days with ataxans (or anyone dealing with a disability) can really change your perspective.

You know I have a joint disorder. Its an autoimmune disease. I hurt. My joints ache. I get headaches from it. But I can walk and talk and exercise and jump and drive and run. They cannot. They never will again. Walking to the bathroom takes ten times as long for someone with ataxia. Trying to speak and get your point across takes quite awhile as well. This is a disease who is NOT friends with patience. And I am one of the most impatient people on Earth. Ironic. You know Im not sure if I could ever be as strong as some of the people I met. Despite being told you shouldn’t have children, the inability to speak or drive or walk or write they are living life fuller than most able bodied people. They dress up, they speak, they persist with physical therapy (sometimes painful), they become guinea pigs for doctors testing drugs and live with the side effects in hopes of helping others in the future. They have jobs, they exercise, they get on planes, they go to movies, they read books- and its all so unbelievable difficult you cannot even understand.

What an inspiring weekend for me. What an undeniable punch to the gut. The fear of my future, of Patrick’s future was quickly replaced with a sense of overwhelming gratitude for my health, for my abilities, for how able Patrick is. My heart is so full. I don’t have much to complain about. I don’t know- maybe I do. There’s times I feel sorry for myself. That my future is not what I had planned. That other people have “normal husbands”. That people complain about stupid things. But that’s just human nature. We all complain. And NOBODY can predict or plan their future…despite your grandest efforts.

I don’t think I can put into words all that we experienced. All that I experienced this weekend. At this conference. Maybe I shouldn’t try. A few of the topics were very interesting. I learned quite a bit. I also know that Im truly grateful to live in a state where medicinal marijuana is legal. I cannot for the life of me understand why people would NOT think that those that are suffering should be allowed to be given a plant that helps alleviate their suffering. Pardon my french but what assholes. I tell ya what- if you are so against medicinal marijuana then when one of your family members is afflicted with a debilitating illness that can be helped by said plant…..don’t give to them. Since you don’t think its ok. Thank God for Colorado!

Off of my rant now. There were so many cool parts of the weekend but I left with an overall since of HOPE and positivity. The “partners of ataxia” group I sat in was JUST spouses & partners of those with ataxia. We cried and hugged and talked rawly and openly about how difficult this journey has been for us. It was draining. It was sad. It was helpful. But the next day I sat in on Patrick’s group- you know all of the people that had his type of ataxia. They varied in age, were split equally male and female, varied in severity, etc. Not one tear. They were hilarious, funny, sarcastic, positive, helpful, demonstrated exercises, never once mentioned feeling sad or hopeless. They were so much stronger than we were. SO MUCH. I am in awe.

And as Saturday night’s dinner ended the dance floor opened. Yep. And although I had joked about filming this craziness of people with balance disorders dancing and posting it on youtube…once the music started it didn’t seem so unusual. Not so youtube worthy. In fact it was just like any wedding reception I’ve been to. Happy, tipsy, funny people hear corny music and they dance. They dance like none is watching. And shouldn’t we all?

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