in-heaven-i-will-run

[in-heaven-i-will-run]

Pride, or Freedom? I’ll take freedom.

It hit me suddenly, like a two by four to the face. I was saying “no” more and more. I wasn’t doing the things I loved to do, because I was afraid…and I wasn’t afraid of ANYTHING! Or at least I thought… It had become painfully apparent that my world was getting increasingly smaller. When mobility is an issue, you start cutting out unnecessary trips, unnecessary activities, unnecessary engagements. I realized that I had been missing things that I loved, and it was affecting my soul. Last week I received the WHILL, model M, and with it, I received so much more. It didn’t hit me all at once, as a matter of fact, I was a little timid at first. What if my mobility issues were replaced with issues of accessibility, of control of the device, what if people look differently at me? With each change in life, there is a letting go of something. Sacrifice. I had to figure out what I was sacrificing in order to decide if I was willing to move on. Turns out, my sacrifice was pride, and that’s rarely something to protect when there are opportunities to grow in it’s place. It was Easter Sunday, my friend from Los Angeles had come to visit, and we wanted to go to church. It’s where we met, and where a strong bond had formed. I grew up in a church, as my father was a minister. It was always a safe place for me, a place of deep thought, prayer, meditation, reflection, positive changes, music, and relationships. I’ve always gone to stay centered, spiritually fulfilled, but since moving to New York, I’ve not been going. It’s scary when you don’t know if there are stairs, what the layout is…it’s just easier to say no. But yesterday…it was EASTER! Easter is a huge day in the Christian church, the biggest! And I wanted to go. I googled cabs for disabled, and what do you know? You just order one for the time you need, they come, drop the back hatch, you roll right up into it, and away you go! Wow!!! The fare is the same, and my friend, as well as my beautiful daughter was able to ride with me! I owe my first Sunday back in church to the freedom of my lovely WHILL! And you know, my pride wasn’t hurt at all! In fact, I was proud to be in this beautiful device. People stopped me over and over, asking me to tell them about it. I felt incredibly special. Here are a few shots from my perfect Easter Sunday out. We attempted to shoot video, but for some reason it didn’t work, so tomorrow is a day for video! I promise! I’m so excited to have my “WHILL to live” the life I want to live! I will be making this years first trip to Central Park this week, another one of my favorite places in the world! Who knew something with wheels and gears could give you your life back, but I’m living proof. Thank you WHILL! I think I love you.

[in-heaven-i-will-run]

Weight…and other things of flux…

Weight. It's something almost all of us obsess about. We regularly hear one another say anything from “I need to lose a few pounds” to talking about surgical intervention to control what we believe to be an “ideal” weight. I've got a lovely friend who is in her third trimester of her first pregnancy who can't seem to gain weight. Up, down, all around….weight. I got away with a lot when I was young, eating whatever I wanted for the most part, without gaining. Granted, I wasn't exactly twiggy thin, but I felt good about how my 501’s fit. Now, age and this frustrating condition is in control, and I'm trying to make peace with them both.

What is this new thing called middle age??? Ughhh, hot flashes, weird stuff going on with my hair and nails, and whose body is this??? I swear, I do NOT recognize myself! And this isn't a gradual thing, it's like I woke up one morning, looked in the mirror and thought someone had snuck a trick mirror into my house. I had heard snippets of something like this happening, murmurs of the body snatchers from my mother and her friends, sitting around a table drinking pots of coffee, and commiserating the size of their hips, but…they were really OLD when they were talking about this stuff! Weren't they?

On top of this middle age boloney, add this stupid genetic mutation called FSHD, and I'm looking at exponential weirdness . My shoulders are trying to disappear, my scapulae are winging, core muscles slowly dissolving, and other shapes that for so long were supported with strong, healthy muscle, now questionable. Those shapes we have grown to value in the human body, the rounds and the ripples, the sleek and the firm, all products of our muscles. Strong, healthy muscles.

I worked for years in an industry that valued those shapes I sported. I supported those curves by going to the gym, stretching at home, speed walking, doing whatever was necessary to keep those jobs coming, and it was easy. Work the muscles, they'll be good to you. My worth was all tied up in those shapes, and I found a sort of self confidence in my body, how it looked. 

On its face, its such an absurd value system. My currency was completely outside of my control, I had been blessed through a genetic roll of the dice, and was able to get paid for walking a catwalk or standing in front of a camera. Sure, there is a bit of talent required, but come on, nobody is fooling anyone by saying modeling is hard work. I worked with some amazing people, was afforded entrée into an exiting lifestyle, made some great memories, and loved it all. Somewhere in the back of my mind I knew it couldn't last forever, but never did I think it would be because another genetic marker would rob me of the ability, and more.

I've found myself calling my body, “ugly”, “weird”, “sad”  and so many other derogatory things of late as those lines and curves begin to twist and get bumpy. One of the very frustrating things with MD is that it doesn't matter how hard you work your muscles anymore, if the disease wants that muscle, it will have it. You are a spectator in a losing match played between your body and the disease. No longer able to run to the gym to work off a few pounds, everything must be handled through will power. You just can't eat what you want anymore. The ability to burn it off, or trust that white hot metabolism to melt it off is gone. Forever.

In fact, I tried to go back to the gym, thinking I knew better than my doctor. I was going to SHOW him that I was going to restore the weakening muscle fiber and pushed myself every few days for months, ignoring his warnings that I would be aiding in the progression of the deterioration. My weight stubbornly maintained its hold, losing only a tremendous amount of function in my body, especially legs. The joke was on me.

I do know that having less weight on my frame will help me move with greater ease, will make it a healthier life for me, and yes, will make me feel better about how I look. I need to cut out the sugar again, and fall in love again with fresh veggies and lean meat. This is such a risky thing to do, to make a commitment out loud, to all my friends and family, regarding what I put in my mouth, but I need accountability….and I really need to lose some weight. Not that it will lead to my being more valuable, but just so my life can find more value, in allowing the ability to do more, go further, fight harder. And in a life where so many options have been taken from me, this is one thing I CAN control! 

I have the greatest support system, and the worlds greatest cheerleaders in my life, so thank you in advance for allowing me to count on your encouragement in one more area of my life that MD has affected. Perhaps some of my shape will be lost to this disease, but my weight doesn't have to be.

So, I'll do my best to fill up on nutrition, skip dessert, and begin to love what's left of this body, no matter what it looks like. It has carried two beautiful children, it has fought back from the brink of death, and it houses a working, teachable brain…a brain that needs to begin to see things differently.

Let me know if you'd like to join me on this quest! No rush, no pressure, no judgement, just a switch to health, mental, physical, emotional. Let's embrace the things we can control, and stop wasting time lamenting the things we can't.

Ciao for now, Heather❤️

[in-heaven-i-will-run]

Out and about today, beautiful day in NYC!! My WHILL performed like a champion, smooth, responsive, and I was stopped several times as people are always taken with this beautiful device. Makes this transition so much easier...

[in-heaven-i-will-run]

Sleepless nights...

I'm overwhelmed with the amazing encouragement I've received on this first day of this new adventure into blog land...wow, I am so blessed. I've had many requests to see this new chair in photos and video, and I promise those are forthcoming. My daughter and I are headed out in the morning to have a stroll to the river and a pier nearby, and I'm so excited I can't sleep! I made that trip on foot last year and it was so difficult, I had to stop many times to rest. It really took the joy from the beautiful view. Now I can go, with Olivia, with our silly dog Moses, and I'm so giddy I'm up thinking about it! I will have some photos to share. Goodnight all, thank you so much for coming along on this journey. Blessings, Heather❤

[in-heaven-i-will-run]

My WHILL to live...

Today is the day. A day that, if asked about 30 years ago, I would have guessed wouldn’t come for another 20 years at least. Today I get a wheelchair. But…not just any wheelchair. No, I'm not old. Perhaps if you ask the young college students I sit beside every day they would disagree, but no, I’m not in an old, frail body. Instead, I’m in an afflicted body that needs help. At 41 I was diagnosed with Muscular Dystrophy. I was stunned. Isn’t that the disease that cruelly robs little ones of the ability to run and play, and eventually their lives? Jerry’s kids? I suddenly have flashes of the telethon, firemen with their boots held out at I stop at a traffic light, cashiers at the local grocery asking every year, “would you like to donate a dollar for research…” MD. I just couldn’t wrap my head around it. I take a quick walk down memory lane and watch myself run and play in the long Montana summer days, leading the cheers for my high school team, striking a pose for the camera as I modeled the latest fashions….how could this be? Wasn’t this an affliction that struck the very young? I’ve come to learn that, yes, it is that…but it’s also one that lies dormant, hiding, waiting for it’s cue, an unwelcome guest that shows up with all of it’s belongings, informing you that it is moving in, never to leave, and I am helpless to evict it. Here it is , and while I will never welcome it, I’d better learn to live with it. For years I’ve done what I can do as it slowly robs me of more and more function. I am lucky I guess…many people that have the form I have, have literally been robbed of their very smile. What kind of horrible illness robs you of the one thing that shows the world that you’re happy??? Even in the face of this tormentor, if you can find happiness, it won’t allow them to show it! Cruel. I still have my smile for now, but my legs have become weaker with each day. It has come to the-point that, when tired, each step is a miracle, and a terrifying potential fall. Falling. I don’t remember being a toddler, wobbly making my way around my small world on legs that are learning their function, but I’m guessing I'm slowly returning to that state. Each step deliberate, thought out, hopeful. One wrong move…a slight tip off my center of gravity, a loose pebble, a stubbed toe, and down I go. When I was a chubby baby learning my steps, falling wasn’t’ that far down. As a woman, I have a long way to fall, and injury is a constant threat. Approximately 5 months ago I made the very bold decision to walk to walk to school. A beautiful Saturday morning, I had plenty of time, I felt my legs were feeling up to it. I had my trusty cane complete with bling, and I was feeling optimistic. I was doing well. It had just rained and as I walked, I inhaled the beautiful “post downpour” air. I was within a block of my destination, and I was crossing a street, midway through an enormous puddle, when I felt that horrifying inkling that my day was about to take an ominous turn…one of my knees began to buckle, I tried to save it with the other, weaker leg, which threw my balance off, and as if in slow motion, I began to watch the water of the puddle get closer, closer, closer. And I was down. With a hard thud and a sickening splash, I was down. I tried to regain my composure, gathering my things, trying to save my assignments from drowning, getting my feet under me to get back up, and…nothing. My legs just refused to cooperate. Straining as hard as I could, they just would not push me back to a standing position. What horror! And suddenly, they were there. A man, who had used his car to create a shield in front of me, protecting me from getting hit by anyone else, ran to my aid, as another come from my right side, construction hat and vest in plain view. They came, they reached out and pulled me to my feet, wet, embarrassed, shaken. Angels, They truly were. Concerned, they walked me back to the corner from which I’d come, and made sure I was ok to get back home. Although I was trembling with the surge of adrenaline that had been pumped into my system, I made it back home safely. I skipped classes that day. Although I knew at some point I would need something to help on those days when my body would be taxed, it’s never easy to say, ok, this is the day. But that day I said, “ok.this is the day.” I began the process to acquire a “mobility device”, today's politically correct term for a wheelchair. No matter how you say it, it’s still just as depressing, but I’ve begun to look at this new stage of life a little differently. Ive been assessing all that I’ve lost over the last few years as my body has weakened. I avoid long walks, I avoid things that make me afraid that I might tire and fall. I have noticed that my world has begun to get smaller, and for anyone that knows me, that ‘s almost a death sentence. I love to have opportunities to explore, be spontaneous. Having limited mobility robs a person of that, but with help, I’ll be able to regain much of that. And there’s the word we've come to despise. Help. Ugh. Why does that sound weak and needy? Who wants to be WEAK AND NEEDY?? Nobody. And that is what I associated with a wheelchair. Especially the ones out there that I had to choose from. Black, stainless steel, mechanical, heavy, a rolling hospital…I hated the thought. I always thought the average wheelchair makes one look old and sick, and I am neither. I began to look around, getting lost on the internet looking at all the new, creative ways people are reinventing these devices, and that is when I saw it. The WHILL. Created by a couple of ingenious men who wanted to provide something different for a friend who felt EXACTLY as I did, this new rolling, state of the art device is something ANYONE would want to sit on! It’s sleek, pretty (not a word usually associated with wheelchairs) and high tech. Then I found out through a friend, who has exactly the same affliction I have, that these very men were looking for individuals who would like to represent their product as an “Ambassador” for a certain length of time, using the device and writing/sharing about it. I immediately knew, that should be me. Absolutely. I wrote an impassioned letter selling myself to them, almost begging to be considered. At 54 I am a graduate student, I’m in New York City, I need wheels, and I love their device! I waited for weeks, almost believing that they had selected someone else, when I got the news: I HAD BEEN CHOSEN! I was so incredibly thrilled, out of my mind, honored, flattered, EXCITED. It's been about a month now, we have gotten to know one another, these wonderful creators and me. I have been measured, informed, contracted, and it’s finally come. Today I receive my WHILL. I can’t begin to tell Jeff and the guys at WHILL how honored I am to be selected to represent them for this time, and I give them my word I will do my best to show the world how my life has improved with the usage of their wonderful chair. I so look forward to bringing you all along on this new, exciting journey! My life is about to open back up, as I realized all I needed was: A WHILL to live!! Stay tuned! Heather