It seems as soon as the first snowflake falls until the sound of the birds chirping outside my bedroom window, I force myself to breath. The task of inhaling oxygen and exhaling the toxins in my body is daunting. Painful. A reminder that I have been diagnosed with this thing called ataxia. A rare neurological disorder that is debilitating. A disease that will shorten my life. The "is" and "will" of FA. The present and future. The now and then. The intent to breath and the necessity to keep breathing. Therein lies the tension. The intent vs. the will.
It's so tough when I don't feel I have the two. Or even one, for that matter.
The smallest thing happens, like last night, when I am struggling to take Delsie's harness off for the evening and we bump heads. Well, more like the top of her head rams into my nose. That's all it took for me to stop breathing. As I wiped the blood dripping out of my nose, I screamed through my empty house, "I hate my life."
I forgot the intent. My will of selfishness dominated. It was embarrassing, really.
After I stuffed my nose with Kleenex, I turned on my kettle for some hot water for tea. I pout as I pour the hot water all over the counter. The spill burns my hand. My intent to fill my mug with decaf tea instead creates a mess for me to clean and makes it difficult to breath. "Are you kidding me?!"
My pouting turns into wailing. My house is empty with the exception of Delsie and Phoebe staring at me wondering why I am not breathing.
Snow falling. Christmas lights. The most important day of the year. But I can't breathe. My intent and will to live with FA gets blurred with every cute Christmas card of my friends adorable families that comes in the mail. I can't breathe.
Ingrid Michelson is my buddy these days. I play her song over and over. She reminds me to Keep Breathing.
The birds will chirp again outside my bedroom window. I just need to be intentional to wait it out through the snowflakes. So, Delsie, Phoebe and I will wait. Intentional to be faithful in the winter.
Although I miss my monthly visits to FL, I am hopeful that something, something, something is around the corner...all I can do is keep breathing...and wait for spring...
I didn't know that I wasn't really breathing. Until yesterday when Delsie's vet called with the result from a biopsy. "Holly, it's great news. The growth was benign oil glands." I literally felt my body release all the tension as I exhaled. Who knew a pimple could provide such joy.
Last Monday, Delsie had an "emergency" surgery to remove a growth that developed rapidly by her mouth. She did fine. And Dr. Bader takes such good care of her. Me? I was a wreck. It has been over nine years since Delsie has been by my side. Nine of the fifteen years that I have been living with this dreaded disability.
Anxiously waiting for me to see her after the surgey confirmed the fact that she makes life do-able for me. She helps me breath. Everyday. With FA. I can breath even though I have FA. Thanks to Delsie.
Going out to train with her for three weeks in PA, was one of the hardest things I have done. But by far, one the most rewarding things in my life.
It is true that as she gets older, the gas she omits underneath my desk at work can actually burn my nose hairs. What a minor thing to compared to her "job" that helps me face the challenges of FA.
Every night Delsie jumps on her toddler bed next to my bed. We prepare to sleep for the night as I massage her and sing, "You are my sunshine, my only sunshine, you make me happy, when skies are grey, you'll never know, Dels, how much I love you, thanks for helping me live, one more day."
I love you D-dog.
and thanks FA, because of you, I have her, my pretty girl.
I love this photo. To me, it portrays so much more than Delsie being her cute self in the coffee shop at my place of employment. I was laughing when I snapped this shot and I snicker every time I look at it. See, Delsie knows exactly what she is doing. She ain't no dummy. She loves ice. I mean LOVES it. Frozen water speaks to her in ways that produce the wagging of the tail and smile on her face. Just the mere sound of the shaking of ice in a glass, causes her stop dead in tracks and hone in on the location in case one is "spilled". ICE translates into another three letter word for Delsie: JOY. So on this particular day after I filled my cup cappuccino and started to head up to my office for the day, I realized Delsie was not by my side. This was her pose. A solid statue planted next to the ice machine. Waiting expectantly and hopeful for a passer-by to notice her and "drop" a few cubes her way.
This morning I read, "Our human tendency is to feel trapped by visual situations. But circumstantial evidence is not the truth of a matter. It is deceptive. God's assessment is always the truth of every situation. And it doesn't include our being trapped by superficial appearances."
These past few weeks, I felt trapped. I didn't ground myself in the truth. My eyes were fixated on the current circumstance. This deception led me to believe the lies. And my body got the best of me. I admit that I wasn't patient in my waiting for the ICE or more importantly the JOY. It's all around us.
Coffee shops or friends visits, emails or phone calls.
Similar to Delsie, I will wait expectantly and HOPE for a cure for FA.
Until then, a lot of tail wagging will happen. With D and me.
A friend of mine invited me over for dinner the other night. They have five kids so it was noisy. And I relished in every scream, cry and laughter. I welcomed the chaos. I soaked in the opportunity to help with their homework. I even confessed that I had no clue how to solve the algebra problem of a sixth grader. Yikes. A bit embarrassing but none the less, very true. It confirmed the fact that numbers are a foreign language to me. I simply don't understand it. Similar to life. I don't get it. As soon as their homework was complete, we all moved to the family room. This time it was their seventh grader that stumped me. I don't remember exactly what we were talking about but whatever it was, it prompted him to tease his mom by saying, "I know, life isn't fair." He went on to say, "But God is fair. Right?" I was thankful he was looking at his mom while waiting for a response. I waited too. I had no idea how I would have answered him. I still don't. I am sure theologians or devout Christians are squirming in their seat reading this. But more times than not, I am like the people of Israel in Exodus 16. I grumble. I doubt. I question whether or not God provides everything I think I need. I want more. Similar to the people of Israel who weren't completely sure God would provide the amount of manna (food) that they thought they needed. If I am honest, I would answer Trent by replying with a bit of arrogance, "No. God is not fair. Look at my life. It's not suppose to be like this." I. Want. More. But it's times like these that I need to savor those moments that God reminds me He is there. FA and all. On Friday my friend from out of town and I went to our favorite restaurant. After we were seated and Delsie resumed her position under the table our waitress came and sat at our table. "I have never had this happen before but a man came up to me and handed me forty dollars. He told me that he wanted to pay for the table with the dog." A tear streamed down my face as I realized although I may not understand algebra or this life with FA, God is there in those moments. Even in my grumbling.
A few years ago the hype was all about the movie, "Bucket List". Honestly, I don't remember the details of the movie. However, like most who saw it, I was prompted to dream about the things I wanted to accomplish before I die. Last year, my oldest sister and brother in law, Cherie and Rob made it possible for me to check off one of things on my bucket list. A motorcycle ride in a side car with Delsie. It was a moment I would never forget. Delsie loved it. A few times I choked up from emotions that were overwhelming. A memory to cling to when times got tough. Mission accomplished. Check mark on my list. This year, our kind, new friends called again to see if Delsie and I would be interested in another ride. Cherie didn't have to ask me twice.
Today, Delsie and I traversed through the beauty of the fall colors in the 70 degrees October day. It was breathtaking. Simply amazing. I loved it. I think Delsie did, too.
As much as I dread having ataxia, it's moments like these that I am thankful. Having FA forces me to make a "Bucket List" and having it, blesses me with people like Richard and Karen with motorcycle rides in a side car.
I anticipate the day I can make a huge check mark next to the words on my list "A cure".
Dear FA, I am not a huge fan of you. Not in the least. I am tired. Extremely tired. I hate that my sister told me that I looked tired. "I can not stop yawning." I replied. "Yea, those black bags under your eyes are telling", she said. FA, you are responsible for those unwanted bags. I am pointing the finger at you for the fall at two in the morning on my bathroom floor. Jokes on you as I didn't injure anything. But you threw it right back at me when I realized the challenge I had to get back in my wheelchair. Totally your fault, FA and I am not at all happy about it. And FA, you're to blame for making everything so exhausting to accomplish. A trip to the grocery store to pick up some decaf coffee and cat food is greeted by a stranger, a stranger gawking as I exit out my van with Delsie. The first thing that comes out of her mouth are the words, "You're still getting around?" You did this to me, FA. It's your fault that I am made to feel different. You are behind the dumb comments but are rooted in the desire of people to ignore you. But you make it impossible for me or anyone else, for that matter, to ignore. I want to scream mean things at you. I would love to throw my kitchen chair at you. And the whole time laugh in your face as you remain defenseless. That's what I feel like your doing to me. I hate you, FA. I really do. And I think that's okay. It's this angst in my life that causes this tension. A discontent to force me to fight. A reality of carrying the bags under my eyes with a sense of pride. It is because of you that I respond to ill timed comments from strangers with grace. FA, I loathe you. But you are not me. You are this unwanted thing in my life. I can't ignore you but I can stand firm in my faith that one day, your diagnosis will be a thing of the past. And maybe, just maybe, Lady GaGa won't feel the need to kiss me because you are with me. The day will come that that "it" will kiss me for my good looks... sooner than later, I hope. These bags are getting heavy. Your #1 enemy, Holly
I was in a meeting this week in which the person sitting next to me pulled out a sticky piece of paper and wrote on it while I was talking. For a split second, I was distracted wondering what he wrote. As the meeting wrapped up, I forgot that he wrote something. He grabbed the sticky and said, "Before we end, I need to tell you what I wrote down while you were talking." My heart sunk as I thought back in ways I may have offended him during our brief time together. I gazed over the hand written note that read, "Be around courageous people." He proceeded to explain that he was drained emotionally and physically until he spent this time with me. Tears filled my eyes and I wanted to throw up in hearing this daunting compliment. I simply uttered the words "thank you". Me? Courageous? Immediately I reflected back to the heart wrenching movie, Shindler's List, where the character Oskar Shindler agonized that he could have done more to rescue the Jews out of the concentration camps. Ironically, today marks International Ataxia Awareness Day and I feel like I am doing nothing. I am still in my pj's at 4:30 in the afternoon and will only change out of them to put on a clean pair. I remember 7 years ago being in the Mayors office and having him acknowledge this day as Ataxia Awareness Day. I went with Al who was afflicted with cerebellum ataxia and his wife, Julie. They knew his death was looming. Two years later, I was attending his funeral. Listening to his grand kids remember him and being acutely aware of ataxia and how it robbed yet another innocent victim. Four people in my ataxia support group have died from ataxia. I only ran the group for two years. I could have done more. So when I read that note, I felt like I was going to rip it to shreds. I am not feeling so courageous. I am off the "high" of the symposium and ball for FA. I even forgot the excitement of a possible cure in 2 years. Instead, I am recognizing the struggle of FA and how it makes me different in this world. I know I can do more. Happy International Ataxia Awareness Day. and cheers to a cure.
I left home at the age of 18 to live in Singapore for 4 months through my college's international program. There were 10 of us Americans from all over the US preparing to embark on an opportunity of a life time. And it was. Our first week together was spent in the states as our university prepared us for the experiences ahead. With an eagerness, our new "family" listened daily as Dr. Rousealow -or pronounced as Wousalow because she couldn't pronounce the "r" sound-lectured about culture shock and what it would be like returning home. I know now that those words "wouds" didn't do justice for what we would live the next 4 months or even prepare us for our attempts to integrate back to the states. We had to experience it for ourselves. Til this day, words aren't adequate to describe what we faced. Although it's a memory, it's a part of me. It molded me. The good and the bad. It's become me. FA has also become a part of my life. This past weekend was The FA Energy Ball. I knew I had to go. I was invited by Dr. Z and her team to present on the patient panel. From there, an invitation to a Ball. Although, getting all dolled up is not my gig, I was honored to be asked.
The plans to travel down to Tampa was a challenge. In my mind it wasn't an option not to go. I had to be there. Just like my time in Singapore and the impact it had on my life, my words can't do justice the impact this past weekend has had on my life. Finding words to verbally communicate what it was like to my family and friends is nearly impossible. I know it's shaped me. I know it was powerful. It was simply amazing. The passion and dedication of the team of people to find a cure for FA is astounding and quite frankly contagious. The fund raising ball had 850 people in attendance and they even had to turn people away. Two years. Two years, is the time line given when they speak of a cure for FA. 2 years!! That is crazy but so is the God I serve. He totally can do it.
So, thanks Dr. Z. Thanks, Kelly. Thanks, FARA. Thanks, mom and dad. Thanks, Cherie, Christy and Lauri. Thanks, friends. 2 years, a cure. Did you hear that FA? A cure. Although I don't have Dr. Wousealow's notes to aid in the "culture shock" I am feeling this week, I lean into the hope I have in trusting that future generations won't hear the diagnosis of Freidriech's Ataxia as I did over 10 years ago... and yea,I'll admit, it was a blast getting all dolled up with my mom in Tampa, FL for the FARA Energy Ball.
I have adorned the nick name Cinderella these past few days with trepidation as well as pride. I am making plans to attend the FA energy ball. (Link is on the side) The trepidation is the lack of transportation down to Tampa. Plans are up in the air and I leave in two days. A bit intimidating, to say the least. On the flip side, there is extreme pride when I think of being involved in this fight to win the war of finding a treatment or cure for FA. So I guess I come by the name Cinderella honestly. I imagine she felt a bit overwhelmed as her step sisters made it nearly impossible to attend the ball. She didn't give up and nor will I. Although her dress was waved by a wand and she rode in on horse and buggy, I will wear my Goodwill gown and wheel in my chair eager as she was, for a prince. And for me, a prince would be nice but a cure would be the best...before the clock strikes midnight, here I come USF.
We were complete strangers. That is, until this weird, invasive and all encompassing thing called Ataxia entered our lives. Which certainly was not invited. We all wanted this "guest" to know that although it had invaded our lives, it was not going to control us. It is strange how something so awful, so obtrusive can be the very thing that "ties the bind". Ataxia is a common thread in our lives but it is not who we are. Ironically, without the diagnosis, I would never have loved Becky and Deb like I do now. A six hour road trip to see each other wouldn't become a memory. We wouldn't talk for hours over decaf coffee or order KFC and eat at the beach, laugh at our failed attempts at love or cry together knowing this intruder of Ataxia robbed the life of someone we loved.
All of us were strangers.
Or what about the stranger who saw me stuck in my driveway during one of the many blizzards this winter when I attempted to roll my trash can out to the curb? He must have spotted me and turned his truck around, only to push my 300 lb. wheelchair in the garage. I hardly uttered the words "thank-you" when he hopped back in the cab of his truck and drove off.
He was a stranger to me.
I attended a funeral of an older man, Fred, who died of cancer. Fred touched my life. He loved Jesus and everyone who knew him, knew that. We shared many conversations on the phone, some that lasted more than an hour, before he died. I grew from Fred's wisdom and admired his faith. I miss our talks. I sat in the back pew in the chapel for his funeral. I sat next to a lady I had never met before. Fred's songs he chose to be sung at his funeral hit me hard. I wept. I couldn't control it. The lady next to me gently placed her hand on top of mine and squeezed some love into me, reminding me it was going to be okay.
She was a stranger.
I flew out to California to visit my friend. And my flight out there was delayed. This made my layover in the Minnesota airport a total of 5 minutes. No small feat for a girl on a scooter that has speed of a tortoise, with a service dog that poops in the carpeted terminal and has to go the distance from gate A to gate Z. Fortunately, the plane waited for us. The ENTIRE 757. I discovered that my seat was GA- the middle of the aircraft. It was at that point when a man seated in the aisle seat of first class tapped me on the shoulder and said, "have my seat, I'll take yours." He wouldn't take no for an answer and proceeded down the airplane. Miles down to seat GA. So there I sat in first class and treated like a queen.
A gift from a stranger.
Maybe my life is filled with unique situations but I am not convinced, as I once was, that we are surrounded by strangers. These people tell me otherwise, in those divine moments, they became my friends.
So as much as I hate you, Ataxia, I embrace you. And the moments I shared this weekend with Becky and Deb will forever be etched in my mind. Although FA has taken away a lot from me, it has given me so much more. And for that, I am thankful.
Lately, I seem to be fixated on getting older. And I confess that this thought process embodies a huge amount of fear. It certainly didn't help matters this week when I was with a good friend and her daughter at Walgreen's and was asked by the cashier if I was her mom. And she wasn't referring to my friend's 2 yr old daughter either...she was pointing to my 30 year old friend. That, according to my calculations, would mean I gave birth to my friend at age 7. Depressing. To say the least. I have reached that point that I am no longer looked upon as a sister with my younger friends or mistaken for being in college. Most of my friends have children who are turning double digits. Seriously. Depressing. I am Aunt Holly who looks at my oldest nephew, Alex, with tears in my eyes reflecting on the memory of teaching him to crank his arm in the air while bellowing "whoot, whoot" when he was only 1. He's going to drive next year. Majorly depressing. On the way home from the bank this morning, I saw an elderly lady walk out of her home. I almost slammed on my brakes to offer her assistance but quickly realized there wasn't anything I could do. So instead, I selfishly thought about my own life. And the following came out of my mouth as my eyes were fixated on this lady completely hunched over and walking with a cane, "Oh God, I can't live like this for that long". Fear immediately set in and I thought what life must be like for Doreen. (no idea if that is her name but it fits) "Please. Please. Don't let me live as long as Doreen". It is clear that she can't lift her head when she walks. Her body is in a L-shape. But the thing is, Doreen may be perfectly happy. Totally content. Completely at peace. And thoroughly enjoying her life. And that is what I am striving for. It is true, I may not always live in that moment. But the thing about being a grandma is the fact that I have lived enough life that I can appreciate it. Having FA is hard. But so is life. And we all live it. It's what I do with it, is what is most important. I have been asked by my favorite peeps down at USF if I would speak during the symposium in Tampa, FL on August 26 at the energy ball for FA. The doctors who are doing the cutting edge research for FA will be there. And Wings of Mercy has once again, offered to fly me down to Florida. So all these things that feel depressing are being molded into something that is amazing. Just like Doreen, I will keep plugging along...
I played hooky from work last week. That is what 90 degrees and 99% humidity in Holland, Michigan, will cause. That and a phone call from a friend with a boat. “Do you have to work this afternoon, Holly? We are taking the boat out and would love for you to come.” That’s all she needed to ask. Before I even hung up I was composing an email to the business office inquiring about the number of vacation hours I had left. It wasn’t a hard choice. Spending a sunny afternoon in a small, dark office with no windows or, enjoying the sound of water hitting the bough of the boat as we motor across Lake Michigan with a summer breeze in my hair? Hmmmm…let me think. I did the math and subtracted the four hours from the time I have accumulated for vacation. For such a time as this. Life is short. And I am diving in.
Growing up, I always heard the “older” people in my life tell me that when I get “older” time will go fast. They weren’t kidding. I am “older” now, and it’s flying by. I don’t want to miss it. I refuse to watch it pass me by from the sidelines. I don’t want to be just a spectator. I want to live like Donald Miller’s friend in his book, “A Million Miles In A Thousand Years”, I want to be IN the parade of life and not just watch it from the curb. I am the main character in my story and God is the author, I just need to surrender my will and be obedient to His will.
Although spending a day on the lake is high on my list of favorite things to do, it's not that easy. Without her knowing, she paid me a huge compliment just by her invitation. She told me that she debated whether or not to even ask me. She didn't know how I would be able to get on the boat but then she told me, “You’re Holly, for Pete’s sake!” I have no idea who Pete is but she is right. I am Holly, who uses a wheelchair and a service dog named Delsie, to get around. But a phrase I often repeat is, “If there is a will, there is a way”!
My will to get out of the office was going to make a way for me to get this 107 lb. frame of a body that has no sense of balance or any kind of coordination, off the dock and hoisted over the wall of a 24 foot power boat. Not to mention coercing my 89 lb black lab service dog who despises swimming, mind you, into the watercraft. What black lab doesn’t like water, anyway?
Needless to say, we did it. I was seated on the back bench as we made our way through the channel with hopes of encouraging Delsie to cool off in the water. I could have been in a commercial for the saying, “Life Is Good”. At that moment life was good.
Meanwhile, my friend’s athletic teenage daughter wanted to go wakeboarding. I was thrilled. I had never seen this sport in person. Water skiing, yes, but never witnessed a person securing both feet tightly into boots that were locked into a single board. My ankles hurt just thinking about it. This was going to be impressive. She popped right up on that board and we took off. For 20 minutes she breezed in and out of the wake and all the while maintained balance. She would even get “air” each time she hit the wake. Those jumps were followed by whoops, hollers and applause from her mom and me. She even tried a new trick that required moving the board horizontal to the boat as it pulled her. I am sure there is a name for it. In my book, it's called, amazing. Her athletic ability was stellar. She made this wakeboard thing look simple and for a brief moment after watching her, I thought perhaps I could give it a whirl; it looked easy enough.
I was enthralled watching this teenage girl live life so effortlessly. She was having a blast! I totally wanted to put on a life jacket and dive in the water to slide across the waves on a wakeboard, just like her. As I snapped back into reality, I remembered that walking by myself is not even an option. Seriously, Holly, snap out of it. But this time it was different for me. What normally would have fostered anger and jealousy in my mind became a moment in time of pure delight for me.
She was all smiles as she gracefully pulled herself back in the boat. “Did I get high in those jumps?” “Yea, you looked awesome!” We were both beaming from ear to ear with excitement. I offered her a high five, “Thanks for doing that. It was so fun to see.” And the honest thing is, I meant it. Although I wasn't the one doing tricks on the water on a board behind a boat, I dove in. I enjoyed the moment. I was happy that I was inhaling fumes from the motor of a boat rather than hearing the beep of another email alert on my computer at work. I was free. I was making a story.
The following day, I realized I might have gotten into my character a bit too much. In the morning when I attempted to turn on the light switch in the rest room, an intense pain shot through my upper arm. I actually thought, “I'm sore today from wakeboarding.” What the ?!?! I can't even walk, how the hobs did I wake board?! It wasn't until later that day while at work, I reached for something across my desk and felt once again, the tightness in my arms. This time I smirked and shook my head. I may not be able to wake board or walk, for that matter, ever again. But I certainly can be IN the moment. I can feel the waves. I can smell the air. I can touch the water. I can even sensationalize the aftermath of wakeboarding. Some may call these symptoms of a hypochondriac. Or label it Munchausen by Proxy Syndrome-maybe even people think I am a bit wacky. But I am choosing to be IN the parade. I don't want to let it pass me by.
In hopes of playing “hooky” again, I am entering this contest to help me write a better story for my life. For such a time as this. I don't want to be just the girl with big hair, in a wheelchair and a service dog. I know there is more to my story than being in a 2 X 2 office with no windows. Who better to help me figure that out than one of my favorite authors, Donald Miller?! Life is short and I am diving in. And maybe visiting Portland, Oregon along the way..no swimming, Delsie, I promise.
But me, I'm not giving up. I'm sticking around to see what God will do. I'm waiting for God to make things right. I'm counting on God to listen to me. Micah 7:7
Five years ago one of my sisters made me a sign when I moved into a new home that says, "never ever, ever, give up!" She hung it above my kitchen sink. And three years ago I moved it to my new home and placed it above the kitchen sink again.
For five years I see this sign. I read the words. And I carry on with my daily routine. Nothing changes in the way I do things because I read this saying. Or so I think.
I go through seasons in my life. Some really good and some really bad. And that sign still hangs above my sink. "Never, ever, ever, give up!"
I am traveling through a season in my life in which I love to read. I think I have four books open right now. I become so engrossed with what I am reading, I confuse the story with reality. I love the warmth of summer, my deck, a beverage and a good book. Pure delight.
In one of the books I am reading, the author quotes a passage from Micah 7:7. And I think of the sign above my kitchen sink. "Never, ever, ever give up!"
Believe me, there are days that I want to. Like the other day when I slipped trying to get a shirt that was hung on the top of my closet and while going down, caught the pocket of my pants on the joystick to my wheelchair which projected it forward wedging me further in the bottom of my closet floor.
"Never, ever, ever give up!"
That doesn't mean I didn't scream and cry. Okay, I wailed. I allowed the tears to fall and my frustration to run its course. I took a deep breath and hoisted myself off the ground.
"Never, ever, ever give up!"
Nothing is really happening. I'm not involved in a new treatment. I'm not flying in a private plane each month. I'm not doing anything.
Or am I?
I'm not giving up. Not ever.
I guess that's something.
Thanks for the sign, Christy. ..."I'm sticking around to see what God will do"...
*disclaimer: this photo has nothing to do with this post. I just like it. Two guys kissing me? Hello! But seriously, Brad and Brian and their wives are huge cheerleaders in my life. They make me feel as if they are in my corner and they won't let me give up. Never, ever, ever.
As each day passes, I am so keenly aware of how my life seems to be all about the wait. And then I'll see.
The wait and see.
You think I'd be a pro at this game. But a game is usually fun. Unless you're like my dad and despise board games. At times, FA can be fun. Almost feels like a game. And although I don't consider myself a competitive person, I want to win this game.
You're going down FA!
I want to play this card. The symposium of FA. http://www.curefa.org/EnergyBall/ Thursday, August 26 USF Tampa, FL.
I desire to sit amongst the smart people who are "rolling the dice" as they find a cure for FA. I hope to thank the people who own Park Place and Boardwalk as they sacrifice fiscally for the advancement in research of FA. I am willing to risk the humidity and travel for the sake of getting the "out of jail" card.
Because at times, FA makes me feel like a prisoner in my own body.
I'm still able to walk. It's been two months off of Chantix. And thanks to my photographer friend, Becky, she was able to capture this "miracle" through her lens. Truth be known, I didn't know how it would go. The whole walking thing. The photo shoot was a blast. (www.beetreephotography.blogspot.com) "Becky, don't freak if I fall. I'm use to it." I didn't! I'm sure Becky was relieved, as was I...and quite happy. The fact that I am still able to walk with Delsie causes me to ask some questions? Which admittedly, leads to worry and before long I am taking a ride on the slippery slope. I was awake at three in the morning with tears dripping down my cheeks. And eventually sweat seeping out of my pores...at three in the morning. Did something switch over in my brain during the study? Did the Chantix re-wire things? Will it last? Will it get better? Will it get worse? Is this it? My life- this- is this it? FA. Will they find a cure? Am I doing enough? Panic starts to set in. So I attempt to take a deep breath and realize this is nothing I can control. I must embrace the journey. Seek the hope. There is always hope in the journey. And these photos remind me of that. Thanks, Becky. For that gift. I am drinking it in...and hoping for a full night of sleep tonight. I have been on the supplement for two weeks. I am feeling like talking is easier again. I am not thinking about forming my words. And just maybe the vitamin is protecting my heart, too. But the supplement is not the only thing that is protecting me with this FA...God totally has my back. Every. Single. Day. 3 AM or 3 PM.
I was in a busy mall with one of my brother-in-laws the other day. It is not often that we hang out. It was eye opening to him. "I totally feel famous walking with you, Holly." "Believe me, Robert, they are staring at Delsie not me."
I am okay with this. The stares and comments are not directed at me. Delsie is beautiful. She's intriguing. And certainly something to be in awe of. She takes the pressure off of me emotionally and physically. We have been a team now for nine years. I have been in a wheelchair four of those nine years. I know the questions and comments and can even predict the passer-by who is going to gawk. It is typical for kids to stop and watch and say, "COOL, DOG!"
That is, until this morning. A boy about 9 yrs old was getting off the elevator as I was waiting to get on. Once he stepped out into the hallway and I moved forward, I could feel him staring. "Here we go," I thought, preparing for the typical questions. As Delsie and I turned to push the button of the floor we needed, the boy was stopped and staring wide-eyed at us. I tried to brake his stare with a "Hi." His stare broke as we made eye-contact. His eyes were wide and his mouth hung open as he exclaimed,"COOL, WHEELCHAIR!!"
This observation warmed my heart and made me laugh. The elevator door shut and I looked down to see if Delsie felt jilted this time. I think she's okay with it.
I'm dying. I know, we all are, sooner or later but today, I am feeling the urgency of the "sooner." That's the part of Friedreich's Ataxia that I don't think about. Or simply put, I don't allow myself to think about. But the reality is, this diagnosis is suppose to shorten my life. Research states that my heart may give out or I'll develop diabetes that will eventually wear me out. The studies of FA have shown that my vision and my hearing will deteriorate. I'm dying. Plain and simple. And I feel the urgency of this dumb disease that has progressed thus far in my life. I have FA and I'm dying. Perhaps this thought process was triggered by the Hearst parked in the parking lot of my place of employment this morning. The back end was open and curiosity got the best of me. I quickly perused the parking lot to see if anyone would notice me making my way to sneak a better peak. It was empty. But my mind immediately transported me to thoughts of my own coffin being hoisted into the open "station wagon." I think it was all down hill from there. By the time I reached my office and turned on the computer, my funeral was planned and I envisioned the songs that would be sung and friends who would attend. Morbid, I know. But true. Reality is I have FA and I'm dying. It has been studied and approved that a specific supplement would be highly effective in treating the symptoms that come with FA. I have known this for several months but was instructed not to take it until the study with Chantix was over. I have left no stone unturned as I made attempts to find the cheapest way to afford this supplement. A med that will not only protect my heart but has proved to improve speech and coordination of those with FA. FA that is killing me. My efforts feel in vain as the urgency of this disease seeped into every fiber of my being today. I bit the bullet and ordered 6 bottles of this supplement that will only last me 6 weeks for $200. As I clicked the mouse to submit the order for a vitamin that may help me talk better or aid my ticker to tick, I realized how irritating FA really is. I didn't have the option to buy designer jeans with that money. A choice that has been taken from me yet again. I have no control over FA. But what I can control is what I am going to do to fight against the death grip it may have on me and so many others with this diagnosis. It's not going to suffocate me. I won't let it. I know it's big. So much bigger than me but so is God. FA is nothing to Him. I have to believe that. It helps the urgency of days like today. Knowing full well that I am dying. We all are. FA or not. Last night, a friend helped me finish hanging photos on my "laugh" wall. As I type this, the faces of friends and family are reminding me it's going to be okay. Death is a reality and a treatment or cure for FA will soon be one, too. And I'll spend time making a point to laugh along the way. Enjoying my life in death.
Another clinical study. Another whirlwind experience. Thursday, my friend and I embarked on a road trip to Ohio State University in Columbus, Ohio. A six hour trip that turned into eleven hours as the Goodwills on the way screamed our names. I knew what was going to be involved in the test. I was uncertain how I would react. Simply said, I am glad that I have a year to forget about it. OSU was impressive and those involved on this particular study were great. This is a clinical study that examine the heart of those effected with Freidriech's Ataxia. And that would be me. Ignorance is sometimes bliss. And that statement applies in this situation. A team of researchers/nurses/doctors and technicians "worked" on me for 3 hours. I began the test by adorning the infamous hospital gown, performed the studies neurological tests, met the cardiologists and poked for two IV's that came out of the same arm. I was wheeled back to the MRI room and another team introduced themselves and quickly became captivated with Delsie. After I was completely strapped down on a narrow stretcher, I panicked as my nose started to itch. The table slowly moved me in a tube up to my ankles. If I just lifted my head from the table, my nose problem would be solved as it would be squished. I then panicked feeling that I had to sneeze. And then my shoulder started to itch. Another hour in this MRI- I thought I would have to squeeze the emergency ball they placed in my hand to pull me out. The contraption across my chest didn't help along with the instructions to hold my breath and then relax. RELAX?! It was at that point that I started envisioning myself laying in an open meadow. This was a mental challenge more than anything else. A nurse came out to holler down the tube that medicine was going to flow to make my heart race. For four minutes. In a tight tube. I started to pray for my friend who is waiting for a heart transplant. This was a cinch compared to what he is going through. I couldn't have been more relieved when I heard the nurse tell me they were done. Once again, Delsie was a trooper. And more Goodwills on the way home. So, this visit is done for this year. I will endure the same thing once a year for the next five years. Over that time, my heart will be studied and compared to other FA patients. And I wait. And hope. That some day there will be a cure.
Before this journey becomes a thing of the past, I scroll through the photos and remember. Or laugh. And in this video, I am doing just that. The plane is very "bumpy" because we are preparing for the flight home from FL to MI for my last visit to USF last month. I need to remind you that this is one of my sisters who is petrified of flying in a small plane. When we were on the tarmac anticipating the take off, there was a flapping sound on the exterior of the plane that freaked her out. FREAKED OUT. She wanted me to tap the pilot and draw his attention to the noise. (that is what she is saying, "get Matt"! Followed by her pointing.) I was laughing so hard, I almost wet my pants. Her eyes and labor breathing say it all. And watching this video, makes me laugh. Here's to memories. Last week was my last official phone call with USF. In the conversation, I reported that I felt like I was still doing well. I was thrilled to say that I haven't fallen since being on Chantix. Jokingly, I said that since I said that, I would fall. And I did. The next morning getting out of bed. Nice. My focus now is getting on a supplement that will protect my heart. And I continue to be hopeful that this fight to find a cure for FA is not over. There is always hope. Even with a flapping noise on a tarmac.
I'm still here. I'm not giving up. It's not done. This fight. This stupid FA. I know I have this thing. These past two weeks don't let me forget it, either. What would be a minor "hiccup" for someone becomes something major for a person with FA. And unfortunately, that's me. I have had Delsie (my service dog) for 9 years and she has never been treated to an ambulance ride. That all changed two weeks ago, Monday. Without boring you with the unnecessary details; we were in and out of the hospital a couple of times as they discovered a cyst on my ovary that apparently became twisted. People. I pride myself on my high tolerance to pain but this was like no other. Delsie was incredible, as usual, and impressed the paramedics and hospital staff with her professionalism. I, on the other hand, was a miserable patient. This photo was snapped without my knowledge from my mother after I was completely comatose from the pain meds...nice. And she becomes my "mother" instead of the enduring name of "mom" in a time such as this- causing a slight chuckle when I become aware of a flash in the ER room. Thanks to a "mom", who never left my side, I have returned to society. Although my trips to FL and USF are over for now. I am hopeful that this journey to find a treatment or cure for FA is only just beginning. If you have been following, you may remember I have agreed to a study for FA patients on their heart at Ohio State University. That test is next week. Time flies and life continues and so does the hope for finding a cure for FA. I am completely off Chantix for two months now. I am having more trouble talking again. And I cried me a river yesterday. Oh wait, can't blame that on the Chantix just my pity party that happens every now and then...
In a time like this, it seems better to ask for forgiveness rather than permission. This is a video I shot on our landing in Tampa. Brecken asked if landing was scary. Listen close to my sister's comforting reply, "yea." This traveling thing is not my sister's gig. She often jokes that she doesn't leave Zeeland. And it's not a joke. She doesn't. So, I commend them for doing it. They were scared beyond belief. You will notice Christy's barf bag in position. If only we were so lucky about 10 minutes prior to this video. Although Brecken enjoyed the treats we packed for the trip, her nerves did not. And the treat bag quickly became the barf bag along with Delsie's back. And all I could do was laugh and gag a little...poor Breck.
My last visit for this clinical study was last Monday. My sister, Christy and her daughter, Brecken conquered their fear and joined me on this trip. So many memories were made and A LOT of laughter. But the question remains: now what? I am confident that this is only the beginning. A hope to find a treatment or cure has just begun. I have a peace about it. I trust Dr. Z and her team completely. I don't have the answer to what happens next because I don't know. And I am okay with that. I really am. But not knowing doesn't not equate apathy for me. I hate FA. Hate it. Especially these past couple of weeks of going backward physically. A blatant reminder that Chantix was aiding me in this fight with FA. I am aware now of how much this dumb disease has taken from me. I know I am different. We all are. But I am learning what it means to embrace the journey. In a bizarre way noticing that this difference can be a blessing. Not that I would ask for this but that I will use it. For Him and for others diagnosed with FA, for Dr. Z and the other researchers who are dedicating their time to find a treatment or cure for FA. So, yeah, I could ask for a prescription for Chantix and be done with it. But it is far from over. This is so much bigger than me. I look forward to making more memories and laughing A LOT more. I am sure there will be tears, anger, doubt and certainly questions but it's just the beginning.
September I embarked on a journey. A journey that was full of unknowns. Like the journey I have been on with FA. Full of unknowns. I have learned to embrace these. Sometimes with complete fear and at other times, with confidence. Strength that only comes from Him. So, being a part of this clinical study has been incredible. I have been off Chantix for the past month. This morning was the first time I noticed the struggle of FA. I freaked a little bit as I almost fell. Sunday I travel down to FL for my final visit. I am praying that I don't feel the finality. Hopeful that this is only the beginning. But it's unknown. The next step. The only thing I do know is that I'm not giving it up. Looking forward to my visit to USF and seeing Dr. Z and somewhat anxious for what's ahead. Probably not as anxious as my sister who is joining me on this trip. When I asked each of my sisters to join me on a trip she replied, "I don't know if I can do it, Howard. I almost barfed when I saw your photos of the plane." She can do it. God is always there in the unknowns. In FA and small planes.
My mood has totally changed. I don't think it was the Chantix that made me depressed. It is the lack of sun in West Michigan. I am a therapist and have taken the liberty of diagnosing myself with SAD. Seasonal Affective Disorder. I am completely enjoying the sun. My curtains are wide open. The sounds of birds chirping wake me up. The piles of snow melting. I think we made it!! Spring is almost here! I can not wait for the day that this season of finding a treatment or cure for FA is over. I have been in the winter season of FA far too long. I can remember when the journey began and I was in my sisters house walking with a glass of ice water. The family was all there. I walked from the kitchen to the family room and stumbled a little; the water went flying and the tears began. I think I screamed that time. I was scared of what was ahead. We all were. My mom just held me and my sister, Christy, cried while Lo filled my cup with water. Cherie, stood there with a hand to offer me up off the ground. The awful season. But it's a new day and the sun is shining. Spring is almost here. And just like this sunrise on my deck a few years ago, the treatment for FA or even a cure is in the horizon! And in the meantime, God has blessed me with an amazing family and awesome friends to travel through the seasons.
This is an "after the action" shot. As I was waiting for my blood to be drawn at the lab last visit, I had to wait outside of the waiting room. It was packed as only two of the technicians decided to show up to work that day. I wasn't annoyed by that. I actually felt bad for them- totally out of their control. What irritated me was this man who stopped an inch away from me and Delsie and proceeded to talk to D. The whole waiting room was quiet and people were bored as they were waiting for their name to be called. So when this man started a rather loud one-sided conversation with Delsie, I knew I had to take advantage of this "teachable" moment...I had a captive crowd. As this man made an advance toward petting Delsie, I tightened her leash toward me and said, "I'm sorry, sir, please just ignore her. She is working and can not be distracted." The entire waiting room heard me. I wasn't bashful in my response. And he wasn't bashful in his response either. He bent down to pet Delsie as he probably thought her wagging tail was an invitation. His back was to the on lookers and I noticed some were shaking their head in disbelief. I felt pressure now that I had to follow through with my original lesson. "Sir, please don't." I tugged Delsie toward me and commanded her to look at me. He stopped only because he finished telling me about how he used to have a black lab that lived to be 15 years old. By this point, I was bothered and felt bad for Delsie. My friend was in the waiting room chuckling as she tried to get the exchange on camera. Thus, the after shot. I am very similar to this man. Although I am not distracting faithful service dogs, I must be annoying God with my ignorance to His faithfulness. I have one last clinic next Monday. No plans of a flight down there as of yet. I'm starting to panic and forget that He is faithful if I just be still and listen. Something this man wasn't very good at and something I am struggling with as well. I am not letting God do His work. Instead, I am distracting my thoughts with the negative ones and wanting my plan. You think I would have understood this by now. I have lived with FA half of my life. ( my stomach just dropped when I wrote that) I can just picture those in heavens waiting room, shaking their heads and thinking, "she doesn't get it". And I don't. Not at all. The lump in my throat is a good indication that I am sick of it. All of it. But I must wait. Just like that day in the lab waiting room. I just hope I don't fall asleep and miss it.
If you fly with me, you will see me strike this pose often. Anything to get my ears unplugged. After I land, I tend to adapt to one ear open and the other totally clogged. I forget about this nuisance until a couple of days being on land and I yawn. Suddenly the plugged ear opens and I hear life on the loud decibel. It has been about week off the drug and I am very aware of how nauseous I was while taking it. The bizarre dreams have stopped as well. I adjusted during the time I took the drug and now being off, I notice. I spoke at a women's conference yesterday and did not have to struggle to get the words out. I don't think I slurred. It felt good. Little things that I lived with and now I am aware of...slight improvements. So I can completely handle looking like a freak flying and almost puking cuz it's for a good cause.
We were well into the leg of our journey on our trip home from Florida last week when my friend began pointing at my neck. "You have something in your hair, Holly." Immediately I regressed back to my high school days and remembered the times that my "so called" friends would sit behind me in class and see how many #2 pencils they could hide in my afro. It wouldn't be until I laid my head on my pillow for the night did I discover them. I would laugh and shake my head, knowing this game was providing entertainment for a rather boring Civic class. Quite frankly, I was happy to be of service. This kit kat wrapper had wedged itself into a lock of curl on my head and as I attempted to dislodge it from the bomb of frizz (no small task, especially with FA!) I thought back to when I ate the candy bar 3 hours earlier! It was there that long. Yesterday was my last day to stop the drug Chantix. I have to admit I am rather leary of what that will mean. Although it is nice to not endure the nausea and bizarre dreams, I am scared for the future of finding a treatment or cure for FA. I am fighting internally with my thoughts of finality. But just like back in high school, I need to trust that He has some #2 pencils tucked away. And just like the wrapper from my favorite candy bar, His plan of a treatment or cure of FA is adhering itself to the right people and both will be displayed at the right time! The ride may be long and the "game" may not be quite so entertaining like 6th hour Civic class but we will get there with His grace. I believe it. I have to. and so thankful I can be of service...
My pastor always ends his sermons by quoting Ephesians 3:20-21 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at within us, to him be glory in the church in Christ Jesus throughout all generation, for ever and ever! Amen!" Gulp. Reading these words and thinking about these past seven months, I would never imagined my life at this point. But that's just it- I can't imagine, God totally can. As this study is nearing the end, I was fretting over the completion and panicking that this would be all in vain. I feared that my passion in finding a treatment or cure for this stupid disease would wain and my life would go back to "ho-hum". But God is the one to make it happen, I am along for the ride. For three days, I was letting Him know my concern and basically questioning his plan. No answer. That is until the phone rang from Ohio University. They are doing a 5 year clinical study on the heart and FA patients and asked me if I would be willing to be a part of it! Listening to the details, I was a bit speechless but agreed to be a participant. My first visit will be in April. The words MRI, IV contrast and 4 minute racing of the heart were thrown around. In my mind, all I could think of was "wow, God, you do more than I ask..." Admittedly, I have been freaked out with the news about my heart as I discovered from Dr. Z the urgency in protecting it from the damage in the progression of FA. But according to His power He gets it. Why can't I and trust His plan is amazing and far greater than I could ask for?. Mom and dad, if you're not keeping up with my blog, a stranger in cyberspace may know this before you, I realize that. I've been trying to process it all and attempt to keep up with God! It's always better when I do. I'll just sit back and soak up the "son".
This is the view from my family room window. Delsie and I are going nuts. Honestly, Delsie seems content, it's me- I'm trying to be patient. For what? The hope of waking up to the sound of birds chirping and the smell of fresh cut grass. I can't wait. Fresh air. Neighbors. Beams of sun. Reading a book outside. Breathing. Feeling my toes again. Taking a shower to cool off. Sprinklers. Flowers. Bare feet. This, too, shall pass. My mantra. Patience. Am I peaceful in the waiting? I am scheduled to speak at a women's conference entitled, "In the Spirit of Peace" at the end of this month. Pressures on and time is ticking away. My prayers begin with a plea for God's direction and then end with ways He could provide hope for me. Me, me, me....wahhhhhh. Wow- selfish. But He is so patient. Just waiting for me to get it. I have a LONG ways to go but I do know having FA has forced me to be patient in areas I know I would have taken for granted in the past. I live life in slow-mo compared to the "norm" and yet, this way of doing life is normal for me. I am not sure where this study will bring me or the hope of finding a treatment or cure for FA. The fight is not over. In some ways, it has just begun. There are days that life seems to be in slow-mo. Freezing. Grey. Numb. Drab. Boring. Winter. But there is hope. Spring is around the corner. A treatment or cure for FA is rounding the bend too. I can't give up. So I prepare for my next visit to FL this weekend. After that, I taper off the drug. I am dreading it but I must be patient. He always is. and He will help me find the peace in PAtiEnCE.
People come and go in our lives. For some, that is okay. And others, we miss. These three people entered my life and more importantly, have a place in my heart. Every month I look forward to seeing them. I enjoy hearing about their lives. Each time I learn something new about them as people. I like them.They are passionate about their job. Committed to find a cure for this Ataxia thing. I am still working through my disappointment that they didn't include me in the memo about wearing black and white last month. This is a photo of my team at USF for the clinical study during my fifth visit. (from left to right) Kelly, Dr. Z and Laurie. I can call them friends now. Another "blessing" during this dreadful disease. A little nugget of gratitude that God gave me in this journey. Gifts, like friendships, are all around. I just have to choose to look at them. At times, it seems so much easier to go down the slippery slope and focus on the bad. But in the end, that causes more harm than good. On my last visit, Dr. Z ran into the room where I was being tested and gave me a big 'ole hug. She has an ability to make me feel cool that I have FA when she goes though the neurological tests and we chatted like I was her only patient. After Dr. Z left, I said to Laurie, "Wow. She spent a lot of time just talking to me!" Without hesitation, she replied, "Well, she likes you a lot." The feeling is mutual. She's not just my doc, she's my friend. Despite the fact I wasn't included in the memo.
USF. I never knew this place existed seven months ago and now it's a part of me. A big part of me. A huge chapter in my story. Kind of like Freidriech's Ataxia. I had no idea this disease existed until my diagnosis at age 20. And now, I wouldn't know life with out it. Mind boggling. Having a disability has taught me to live in the moment. I haven't always succeeded at it. Especially these past couple of weeks as I am anticipating "the end." The end of this study. The end of private planes. The end of memories made with family and friends. The end of improving physically. Worse yet, the end of the hope of finding a cure or a treatment for FA?! "Thanks for participating in the study, Holly. Good luck in the future." Then USF, Dr. Z and this clinical study escapes my life as quickly as it invaded it? Chapter done. Book closed. The thought sends chills down my spine and my heart drops to the floor with disappointment. I am scared this book will just sit on the shelf and collect dust. This month is my 2nd to the last visit to USF. I am in a rhythm of taking Chantix that is common ground. So common that I can even forget to take the pill. I am losing sight of the big picture. Collecting dust. I need to regroup and "keep my eye on the prize", as they say. I have no idea what that looks like. But that is when I need to remember that I had no idea what this study would look like and now it feels like home. God is writing my next chapter. The book isn't closed. I just have to be obedient and turn the page. There was hope...there is hope. And it feels like home.
I am surrounded by things that don't make sense. Life hurts. Many, many things that I can't wrap my mind around. Tears that fall and no one to catch them. Questions that are asked and shoulders are shrugged. Prayers that are made and just silence is heard. That's life. And in a bizarre way, I think that's what makes it so bittersweet. I have been told a lot that I am going to have a lot to talk to God about when I see Jesus face to face. I just shake my head and smile, "I don't think it will matter." I won't feel the bitter. It will be sweet. But now I live with the bittersweet of Friedreich's Ataxia. And this visit I heard some sweet news. I hope D. Z doesn't read this blog. This neurological thing is beyond me so I will attempt to describe how I understand it. FA is a progressive disease. It moves from the spine into then into the cerebellum. Although I detest the progression, I am thankful for the timing of it all. Through this study, it has been determined that Chantix is proving to be beneficial for those in a certain window. If I would have been "new" with FA, I probably wouldn't have noticed a change while taking the drug. If I had progressed with the FA, I more than likely would have been too late to feel any benefits. I am in the window! I am responding to Chantix. This study is way beyond my intelligence to wrap my mind around but my tears are caught and the prayers are heard. A reminder that it's all in His timing. The window. How sweet it is.
It always takes me awhile to process the trip. It's a whirlwind. Hard to believe I actually can say I've been to Florida this week. When we landed in Tampa flight attendants and workers at the car rental would communicate politeness as they stated, "Have a great vacation." Little did they know they would see us the next day. And they did and recognized me- I'm just a tad bit noticeable.
As the study is coming to an end, Dr. Z is thinking about the future. My efforts to encourage her to say that I had to relocate to FL didn't happen. Bummer. She did say that she wants to flush the medication out of my system again at the end of March. Bummer. At this time she will begin a medication to protect my heart. I was disappointed thinking of how awful I felt when that happened before. It took me a minute to actually hear the words, "protect my heart." She was mixing me up with someone else. I pride myself that my heart has not been effected from this dumb disability. Pride. Gets me every time. It is inevitable that my heart will be effected by FA. Bummer.
Once again, I am so grateful that I am part of this study. Without Dr. Z, I wouldn't know to take the necessary steps to protect my heart. Yea, there are bummers along the way. But God has my back and He is protecting me. All of me.
On days like these that appear so bleak-grey, dark and cold, I have to remind myself that there is green grass under that white stuff.Or brown grass if it's my backyard. The winter blues have set in. It's official. I would love to transform into a bear and hibernate under my electric blanket for the winter. Wake me up when these drab, winter months are over. Everything is more of a challenge with my disability during the winter. So tomorrow, not only am I looking forward to blue skies and a little vitamin D, I am anxious to connect with Dr. Z. On my visits, I am encouraged. I don't feel like a fish out of water. This clinical study has provided me with purpose. I feel like I matter. I must persevere. Not just for me but for others who hopefully won't have to deal with the effects of FA. A friend from high school sent me an email today. His words wouldn't escape my mind. He said it so well: ..."I realize too that so much of life is our reactions to the unpredictable - because almost all of life is exactly that - unpredictable." Unpredictable. FA is certainly that. That is why I am making my 5th visit to the clinic tomorrow. It's where I belong. And we all want to belong. In the white stuff, green or brown grass. And did I mention the sun?
It has been 6 months since this journey began. I visited the clinic 4 times and have 3 more to make. In the beginning, everything was new and the support was overwhelming. I had no idea where this was going to take me. I still don't. And I think that's okay. I am committed. This disability has taught me to persevere. To wait. For clear skies. I am continually challenged with my patience. Being faithful in trusting that the wait will be worth it. In this life AND eternity. This month was no different as I prepare for my 5th clinic. After many emails back and forth with Wings of Mercy, a secured flight is not available. My oldest sister, Cherie, has done her magic again and found a commercial flight leaving out of Chicago next week. It will be a whirlwind doing the airport thing but I am committed. Just as much as the 1st visit. I have been asking everyone if my speech sounds clearer. It is a riot seeing and hearing people's reaction. Talking is much easier for me. That's a bonus. And this past week I should have fallen at least four times. I didn't. I was able to catch myself. Major bonus. So I keep lookin' up. For the clear skies and even the storms.
It's kicking in! This past week I noticed improvements. I forgot what it was to WANT to walk. The past couple of days, when I walked (with D on one arm and a friend on the other) I had the ability to carry on a conversation. Something that was impossible to do before this drug. Every ounce of effort and energy I had was directed toward concentration for my next step. If any of you have assisted me with walking, you are well aware of how unpredictable my gait was. If you were brave enough to help me, I pulled and yanked while creating a challenge for the "abled" bodied person to maintain balance. As I was leaving a gathering last night with a friend that has known me from kindergarten, we both marveled at my stability and the ability to talk while we walked! Cool stuff! Slight improvements! Probably not even noticeable to a stranger but gains none the less! Now if I can call the plans to fly down for my January visit a success, I'd breathe a bit easier. Still haven't heard anything from Wings of Mercy. The window for me to be at clinic is the 14th, 19th or 21st. Trusting He sees the bigger picture and the knows exact details needed to make that happen...waiting. Not only for the Florida sun but the big 'ole hug I am going to give to Dr. Z.
It's not often that I look back on life and think of what could have been. As soon as I do that I am on what I call the slippery slope. The "what if's" consume me. I believe the lies. And I ask "why me?' The slippery slope. It's ugly. So dark, so depressing, so hopeless. This journey has been just that. A journey. Full of questions, tears, anger. The losses were overwhelming. When I was diagnosed with this weird thing called ataxia, I would never imagined that I would be disabled. I didn't think that my life would be done in a wheelchair. I didn't see myself as single in my 30's and no children to call my own. I certainly did not have high hopes to drive a mini van. My dreams were a bit different. I am suppose to be living in Tennessee with my adoring husband. And after a career in teaching, I would stay home with our loving twins. A boy and a girl: Jade and Jake. My vehicle would be a JEEP to transport the kids. I'd be active in our church . Life was going to be good. But life IS good. No, it certainly isn't what I thought it would be. But I am finally at a place when I can say that is okay. It hurts at times. Shoot, it really stings sometimes. But those are the times that I take a little ride on the slippery slope and focus on MY desires, not His. Today the slippery slope is tempting. I am choosing to ride the tide of prayer. And acknowledge His grace, His provision, His plan. In my plan, I never dreamt that I would obtain my masters in counseling. That was His plan. And he provided Delsie just in the right time to walk across that stage and receive my diploma. I need little reminders, like these, that He will take care of me. Yesterday I found out that the pilot originally scheduled for my trip in January is not able to fly me to clinic. The "window" for my study at clinic is the 14th, 19th or 21st. So, I pray, trust and wait...for His plan, not mine.
