a gift in the hard.

On the outside, my life looks hard. And it is. Really hard. But it is also bursting at the seams with God's gifts. One of those unexpected gifts has been a friendship because of the hard. 

A couple of years ago a high school friend emailed me through facebook. He is a PhD oncology researcher and living with a stage IV diagnosis of colon cancer. He followed my clinical trials with FA closely and became a huge encourager in my life. 

Throughout our friendship and his amazing spirit, I hooked him up with a few of my friends who were also walking the path with cancer. (Facebook can really be a good thing)

Last summer, he took time off from his treatments and spent a few weeks meeting his virtual friends around the country. I was fortune it enough to join this group for dinner one night.

Truth be known, I felt a little odd. They were all part of a club that bonded them together. We even joked about it. I commented that I was on Holy ground. I thanked them for making feel welcomed in the hard.

the "club" after dinner last summer

This hard is now my reality. I am living with a stage IV diagnosis of breast cancer. God knew I needed a Tom in my life. 

It's surreal that I am part of this club now. But I am so thankful to be standing on Holy Ground in the hard. And I am so very grateful for His gift of Tom.

hope in the hurt.

When I was 18 I said good-bye to life in the states and spent my first semester in college living in Singapore. I was confident and excited as to what was ahead. The unknown didn't scare me but rather motivated me to be the person God created me to be.
26 years later, I am still living in a foreign land and want more than anything to live in His will.

As a 44 year old, I'd be lying if I didn't say the question of the future weighs heavy on my heart.
It's no secret that my life has been hard. I carry disappointments around like it's going out of style. I confront suffering like an old friend. And welcome the unanswerable with silence. I've been challenged to trust the hurting. This journey of stage IV cancer is no different.
But these past couple of days I've been struggling to articulate the tension I am feeling. The space between living and dying. I was there before- we all are. We live to die, right? I have to admit, that part is exciting. If everything I believe about heaven is true, I  will be more than fine.
But it's not knowing what God wants from me that is tripping me up. I admit that I wish the cancer didn't metastasize. I'd fight like hell to win the war with breast cancer. But this stupid disease is invading an already beat up body.
So there's the unrest. The disappointment. The suffering. The unanswerable.  The silence. The hurt.

The last round of chemo hit me hard. I'm scared to start the third round on Wednesday. I meet with my oncologist before it to hopefully approach the regimen of treatment differently. I need to live to die a better way.

And I still need to hope in the hurt.

one foot in front of the other...

It's been three months since I have been diagnosed with stage IV breast cancer. A journey I never thought I would be on but here I am. Searching, longing, desiring that "new" normal. I received a card in the mail last week that defined HOPE. "It's that beautiful place between the way things were and the way things are yet to be." Way to go, Hallmark. You put words to the way I feel each day. I'm in the middle. We all are. The dash in between the day we were born and the day we die. The battle. The time that we prepare, we trust, we stumble, we love, we cry, we laugh, we doubt, we live. The middle. One of my favorite musicians, Ellie Holcomb, sang about it so well in her song, Find You Here.
July 28, 2016 was my last day of work at a church that was my place of employment for 20 years. I sensed it was time for something new. I dreamed of starting a non-profit and use my story for others as they battle through their own story. I wanted to speak and write. I had no idea what that would look like, I still don't, but I knew I had to put one foot in front of the other and take the first step. The very first day of "retirement" , I sat on my deck and googled, "How Do I Start A Non-Profit." I spent the next few months applying for disability (a full time job in itself), meeting with friends who were wise with 501C3's start ups and listening to God. A lot. I had been approved for disability and enrolled in medicaid, as I waited and trusted until my first source of income came five months later. I was amazed how the whole process was relatively painless and so thrilled that my ministry did not have to support me financially. It Takes Hope (www.ittakeshope.org) was born.

sneak peek with the team at It Takes Hope
 (photo credit: studio 6.23)

God is so faithful even when it feels like you are just treading water.
I joke that I didn't realize I quit work for a full time job in cancer. But God knew. The timing of it all has been amazing. Don't get me wrong, I hate that I have cancer. It makes me so disappointed that my future is unknown. But it was with FA. What's critical is what I do in the middle. How I fight this battle. Oddly, that's the fun part.
"It's that beautiful place between the way things were and the way things are yet to be."
HOPE.
We all need it.
One step at a time.

#battleready

I have a brain scan tomorrow. Those are five words I never thought would come out of my mouth. And yet, here I am. This is really happening. I have cancer. So bizarre for me to say. Difficult to wrap my mind around. I have a masters in counseling and don't think I am in denial. I'm not mad. I'm not numb. I'm not sad. I'm just me. I'm here. Those days of anger, shock and self pity may come. I might face them a hour from now, tomorrow or in a month.  I'm okay with that. I really am.
Because today the sun is pouring in my window and the sky is blue. Today. It really is blue!

FA has taught me to live in the moment. Just be. I know by now to dive into the wave of emotions rather than ignore them.
Fortunately or unfortunately, life has prepared for me for this. #battleready I call it. We are all in one. A battle. It just looks different for each person. Mine just happens to be a compromised digestive system, a diagnosis of Friedreich's Ataxia and now stage IV breast cancer.  A new challenge, for sure but it doesn't change my direction or my outlook on life. God is still God. And He is still good. So good.
This journey started the first week in January. After the initial appointment when it was believed to be cancer, I left my doctors office and turned to my mom and said, "Well, buckle up."

And not only has my family buckled up, they are holding me up. Literally. Every stinking appointment they have been there. My friends. Incredible. The Lord. Amazing.

This story, His story, is not over. I may not understand it or like it but that doesn't give me reason to not be faithful in it.

So today, I will choose to rest in Him. That's all I can do. Really, that's all I want to do. And lots of laughing. Don't forget the laughter.

Even if the brain scan doesn't turn out the way I want it to, I'll make a choice to laugh. Maybe through tears but I'll still choose joy.

You heard it here, folks. You can hold me accountable.
I'm #battleready.

game on!

It Takes Hope

'Twas the night before my oncology appointment,
when all through the house Barkley was snoring,
not at all like a mouse;
the unknown of this cancer hovering in the air,
 in hopes of the right medical team that'll be full of care.

These past three weeks have been a major blur,
trusting on treatments, the docs will concur.

 While my faith is tested and the outcome unclear;
 I have absolutely no doubt that God is so near.

My dog is always cuddling, the fire is lit, my focus on Him; His love won't quit.

Friends are encouraging, I'm doing okay. I trust in His mercies, they're new everyday.

Many are hurting; it's hard to understand, but I know God's got this, He has a plan.

People seem to question; it seems so unfair. But not for a second do I say He doesn't care.

This guy is a trooper.

My life is hard yet so full of hope. I'm battle ready. He'll help me cope.

Tomorrow is the day I long to know more. My family's been awesome. They love me to my core.

Thank YOU so much for joining this fight. Your support is amazing. Carrying the load and making it light.

The time has come to "get-er-done!" I'm confident in God. I say that -He's already won!

getting my port placed

wanting and waiting.

This past weekend I witnessed my nephew say, "I do" to his girlfriend of three years. The following day I hugged my niece good-bye for her second semester of her freshman year of college. It wasn't until the hotel door shut that I bawled. And I mean bawled.
Time has flown by and The Cousin Sleepovers are a thing of the past. Life continues and new memories are made.
Not being a mom is one of things in my life that stings. And not being married, hurts. It's the one area that makes me feel less than, patronized and lonely. Even writing those words makes me cringe. I fear the responses of people who mean well but only magnify how my life seems misunderstood.
But what I can't do is misunderstand how big God is. He is confusing but not discouraging. I can't view him through a distorted lens. I need to accept He is God.  And thank God,  I'm not.
Indeed, I would write my story differently. I'd be married, live somewhere warm, be a special education teacher and be a mom to twins. A boy and girl.
That's not my story.
So I live in this tension of wanting and waiting. Which turns into trusting. Believing the journey I am on is the exact story He's writing.
The life of less than, patron ism and loneliness is a lie. I can't live in that.
I choose to live in the moment. That moment may look like the ugly cry as my niece gets on a plane to college. Or it may mean watching my nephew drive away in a car marked JUST MARRIED. But it's His story, I just need to be faithful.
Don't misunderstand me, that doesn't mean I have to like it.

I do like this guy, though.
all gussied up for my nephews wedding. :)

quote of the year.

I was texting a friend the day after Christmas.

Me: We did it.
Friend: It wasn't pretty but we made it.
Me: Proud of you.
       This season is brutal.
       We can do it.

The conversation continued as we shared our melt downs. We reminded each other to breathe. We exchanged our love for one another. And in that moment, we weren't defined by our hurt. We weren't alone in the pain. The disappointment in our lives was acknowledged but not dwelt on. We are making the choice to move forward. Whatever that looks like.

For me, it's diving into the reality that my life is not how I thought it would be. It's crying, or screaming, when doing something that should be super simple is exhaustingly difficult or even impossible. It's accepting that I am facing another loss. My life is full of losses. But I am not losing. I'm not.

It feels good to write that. I read those words and the things I have gained in my life because of my journey, flash through my mind. It's a choice. I don't always make the right one. But I know I have a choice.

This holiday season is hard. It seems to magnify everything. Family, money, time, friendships, future...most of the things that are out of my control. But the very things that I can choose better.

FA is not pretty. But I can make it. It won't be without loneliness, fear or tears. I know that. But just as I cry hard, I laugh hard. Life is hard. With or without FA.

After I finished texting my friend, I listened to a podcast with Craig Groeschel. I'm not one to pick a word for the year. This will be my quote for the year. No, not just for 2017 but my life.

"You don't have to understand the plan to trust God has a purpose."

Happy Holidays.
We can do this.

you can't have one without the other.

This past week I had the privilege of speaking to the men and women's golf team at Hope College. I was asked not because I am a golfer (obviously) or an alumni of Hope College (which I am) but because I have a story. I know, we all do. Trust me, my self doubt and insecurities did not let me forget that. But my story is not one to keep to myself. It is filled with His promises. His patience. And His presence.

I am beginning to piece this all together. The doubt, the fear, the anger; they were a huge part of my story. I painfully admit, they still play a role. Thankfully, they aren't the lead characters anymore. God is.

As I worked through my story, I realized the two can co-exist. For so long, I thought I shouldn't hurt if I really had hope. I know that sounds silly.  Even writing it, I can't believe I was believing that lie.

I face timed one of my sisters to go over what I had prepared to share at Hope. I have three older sisters. She and I have been pegged as the emotional ones in the family. I like to think she is more sappy then me but if I'm honest, we both can hold our own in the "wear our emotions on our sleeve department" pretty evenly.

I thought I had practiced enough on my own. I felt prepared for the parts of the talk that would hurt and cause me to be a bit more emotional. What I didn't plan for was the two of us getting hit with raw feelings.  Man, did we cry. I can't speak for her but I was surprised with the part of my story that hurt so bad. It really hurt. The difference for me this time is I believe beyond a shadow of a doubt, I still have hope.

Yes, a hope of a cure, for sure. But finally I have a hope of His promises. A hope of His patience. And a hope of His presence. It's so freeing to say that. It's even more liberating to believe it. Finally, the freedom to trust in Him.

Don't be disillusioned in thinking I have arrived. That couldn't be further from the truth. But those college kids made me realize that hurt and hope can co-exist. Actually, there has to be both to search for the purpose to the pain.

Thanks, Hope College men and women golf teams, for challenging me in my journey and allowing me to share my story. I believe we were all made for something more.

It Takes Hope

Two words. Look beyond. 

I've been repeating them. Over and over. It took me a long time to be able to really do this. Those two words freaked. me. out.The thought of my future was scary, overwhelming and unknown. It still can be. But I no longer want to vomit when I hear those words. I don't know or even want to know what's ahead. When I was first aware that my body was becoming my enemy, I tried desperately to hang on to my faith. I had no idea what that looked like but it sure sounded good. In the back of my mind I remember wanting so badly to have the faith of a giant but truly feeling the size of a Nat when it came to expectations of my future. I needed to look beyond.

I often tell my clients that the head and the heart are only 12 inches away. But my heart is  miles and miles away from what I know to be true. Facts verses feelings. FAITH. Besides being a lot of "F" words, I desired to be filled with hope and not fear.

Years ago, the acronym of FA-ITH  (It Takes Hope) began and I didn't even know it. All these years, my heart was catching up with my head.

This entry doesn't mean I have arrived. Far from it. But it does mean that on my good days I am able to look beyond. And thankfully, I am in a chapter in my story that the good days are outweighing the bad ones. I'm looking beyond with expectations.

In order for me to hope for the future, I scroll through my photos and remember where I've been. And this one reminds me that it will be worth it. If not today, the end of my story.

About a year ago, a friend of mine created a logo that I had printed on t-shirts and hoodies. It was my intention to raise awareness for this rare disease and in the process donate the money earned to FARA. (Friedreich's Ataxia Research Alliance)  The first campaign was embraced by my close friends and family. Mostly because I begged them to buy a hoodie. The second campaign I promoted it through a promise. If I sold 150 FA-ith t-shirts and hoodies, I would tattoo the logo on my body. Honestly, I set this goal thinking it was unattainable. But on March 11, I had to fulfill my promise and get inked. I gathered some friends and we made the trek over to Chicago so I would permanently be reminded to look beyond as I have the FA-ITH to believe that It Takes Hope. 

the finished tattoo

 I told my friends that I was going to kiss the first stranger that asked me about my tattoo. Well, last week  the sales lady at the Outpost in downtown Holland was the first person to ask me about it. And poor thing,  I gave her an earful. She was so kind to listen and even knew my story a little as we have a mutual friend.. :) Although I spared her from a kiss, I gave her a hug and thanked her for asking.

I am continually wrestling with the tension of knowing that I need to look beyond my circumstances. But I am constantly  tripped up in the present. The losses are great. And constant. But it's in the middle of the pain, that's real. That's raw. That's life. Mine is a life with FA, unfortunately. But when I look beyond, I see having FA as fortunate.

Easier said than done.

The other day I heard someone quote A.W. Tozer and I can't get it out of my mind. Honestly, it's driving me nuts.  These few words are propelling me to look at my life through a different lens.

 “It is doubtful whether God can bless a man greatly until He has hurt him deeply.” ― A.W. Tozer

Most days, I struggle to say or even believe that FA is a blessing. This disability has drastically changed the course of my life forever. The majority of the time, I hate living with FA. Often times, I am trapped in a body that won't work and that spirals into my mind filled with negative thoughts. But what I can try to communicate and even trust is that God is real. And because of FA, I am able to notice the blessings. I am wounded deeply but I want to be used greatly.

That scares the daylights out of me. I have no clue what that even looks like. But those simple words can have a profound effect on the way I do life. I just need to let them take root. Easier sad than done, I know. Believe me, I know.

I can't even count how many times I have said to friends 'I don't get it.' in the past two weeks. There are people in my life that are enduring a hurt so deep that makes absolutely no sense. I texted one of these friends over the holiday weekend, knowing it would be a tough time for her. She responded honestly in her text, "It's hard. I'm not a fan of holidays." As I inhaled, I exhaled these words in my response, "Yeah, holidays are hard when you're hurting. I guess I've been hurting for a long time."

I have been in pain for awhile. And I'm not referring to the physical struggle.  It's the emotional pain that's tripping me up. The ongoing disappointments that clog my thoughts with darkness. And major doubt. Along with an all consuming fear. I need to see the road of FA as a destination and not a detour. Easier said than done, I know. Trust me, I know.

That's my problem. I can't believe or even trust my feelings. My feelings are my downfall. It's my faith that I should focus on. I need to believe Him and trust that He doesn't waste a second of this pain. He loves me. He hates FA. Just like He loves you and hates whatever is causing you to hurt.

As I get older, I'm okay with saying I don't get it. I may never understand it. And that's okay. As long as I'm loving the one who does.
Thy Will Be Done. (click on the link and you'll hear the song I can't stop playing) Or read the words from St. Theresa's prayer hanging over Barkley's bed. And just breathe.

Easier said than done.

Unfortunately, I know.

an acronym

I am listening to fear. Not only listening but being motivated by it. Hearing this fear is a scary place to be. A few years ago a group of my friends and I met in my home every other week for a Bible study. The leader used an acronym of the word fear. Yes, I rolled my eyes with the use of an acronym but it stuck. FEAR. False Evidence Appearing Real. That is what's happening to me right now. Not only has the acronym of fear gripped me, my fear is strangling me.
Earlier this month a friend of mine prayed that I would dig down to the root of my fear. And immediately I cringed. I began telling myself that it would be too scary to expose my vulnerability. I allowed myself to believe that it would be easier to skim the surface of my life than tear down the walls that I have built that I think are protecting me. That, my friends, is what is false.
So, I begin to dig. To start blogging again. And to stop believing the lies. I need to recognize that my doubt does not equal unbelief.   I want to breathe again.
I have created FA to be this ugly, monstrous, all-consuming thing in my life. Somewhere along the way it has robbed me of pure joy. It's held me hostage in my own body and I have given in to the tears that fall on my pillow almost every night. FA convinced me that it would be easier to do life alone. I've become accustom to isolation.
I hate FA. I really do. But I hate even more that it's fostered this FEAR in my life. It's reality that my body is deteriorating. A lot of things are much harder to do. The fact is that this disgusting disease in my body can not be avoided. The losses are insurmountable and continual. I hate FA.

Yet somehow FA and joy can (and will) co-exist.
The other day I took advantage of the nicer weather and walked home. I was in my own little world as I played out different aspects in my life that were causing fear. I wasn't in a good space in my head. But unfortunately this was a common place for me. FEAR was winning.
That is until a bright, yellow Ford focus pulled over onto the curb in front of the sidewalk I was on. A young girl in her 20's with cute yoga pants and blond, wispy hair  pulled back in a pony tail poignantly walked over to me.
"I know you!" I seriously had no clue who she was. She proceeded to state things about me that led me to believe she did know who I was. I still didn't know who she was but for some reason that didn't make me critical of the things she said next;
"When I drove by you I had this overwhelming sense of joy come over me, I knew I had to turn around and tell you that."
I hate to admit it but usually at this point I am rolling my eyes like when an acronym is used. I typically become critical and would blow off her comments.
For some odd reason, I embraced this strange encounter. I even teared up and thanked her for the courage it took to approach me.
We prayed together, right there on the corner of 29th & Ottawa.
"I have no idea what you're going through but you need to know all I see is joy."
I listened to that. In fact, I'm choosing to be motivated by that. Fear has no place here.
Just as my friend prayed, I'm digging deep.

time to dream.

I had a conversation with a friend today that made me stop in my tracks. She told me she is learning it is okay to dream. Not the go to sleep and let your mind create a story kind of dream. But rather the kind of dreaming that you ask yourself who you are and what you want your future to be.
Somewhere along my journey, I stopped doing that. I have let the unknown grow bigger and stronger than who I want to be or even SHOULD be. Ouch. The honest truth is that I'm scared to dream because in the back of my mind I think, 'it's not going to come true anyway'. I don't want to set myself up for more disappointment. I have enough grief in my life.
In late October, I began my fourth clinical study at USF in Tampa, Florida. My home away from home. Every study has brought its own set of challenges but for some reason this one has been extremely difficult. Both physically and emotionally.  I've allowed the fear of "what ifs" get in the way. And more importantly, the "what ifs" in my life are immediately negative instead of viewing them as possibilities.
I returned Saturday after a week long of intense testing. So many blood draws, walking 25 feet, blood draws, attempting to ride a stationary bike, blood draws, breathing, blood draws, finger to  nose,  blood draws, EKG's and did I mention a lot of blood draws?

And to top it all off, I fell flat on my face that required a CT scan, a x-ray and a visit to a doctor not related to the study for medical clearance as I fractured my nose in the fall.

Two weeks before my visit I began a low polyunsaturated fat diet. PUFA. Who even knew that was a thing?? This low PUFA stuff is going to be the death of me. I have to journal everything I eat and the amount I consume. Extremely laborious.

Fortunately, this study is over the middle of December. I am pretty sure I will become the 400 lb. girl with FA when it's all said and done. I think the days of being gluten-free will be no longer. This girl needs to eat!!!
And I need to dream. And believe that He can make my dry bones come alive! 

I need to have hope and the confidence that this will be worth it in the end.

In the meantime, I will trust and focus on his gifts.

I leave again Sunday with the courage to dream. So tonight I will lay my head on my pillow as the tears fall and begin to rest in the dream that one day this world will be free from FA. That has to happen. It will happen.

a sacred journey of FA.

Dr. Z and me

It's not often that you hear someone say they miss being in the hospital but I kinda do. Well, probably not being IN the hospital but rather the things I thought about the ten days I spent at Tampa General Hospital.

Like passing dark hospital rooms that were filled with people whose life had stopped. The sounds of machines cascading down the hallways. The strange noise became a familiar one and even welcomed as it notified the nursing staff of an upcoming seizure a patient was about to experience. Conversations with family members on the elevator about how their 28 year old son was hit on a bike.  They had been there three weeks already. And no mention of discharge. They were just happy he was alive.  Connecting with a mom of a 21 year old son who had a heart transplant just two weeks before. It was the first time she felt fresh air since the surgery. She asked me all about Barkley. She wants her son to live for a dog like him.  It grew into a sacred time of laughter and tears reflecting on the journey we are all on. Sacred. That's it. Being in the hospital was a sacred time for me. Somehow I feel as if I attempt to describe it, the words will seem empty. I fear that my stories will rob the experience of the joy I felt. I had joy in the suffering. A peace that made it worth it. So that's what I miss about being in hospital...I was on holy ground. And I don't want to forget that gift.

My research nurse, Tara

It was a gift. In so many ways. From the flexibility of a place of work that supports me going; a friend by my side that sacrificed the demands of her life for ten days; my service dog that was phenomenal and a nursing staff that was delightful; new friends that gave in so many ways; the beautiful view we took in everyday by the water; gorgeous weather that warmed our cold bones; the constant breeze that refreshed us in the healing sun; a doctor whom I love that makes me feel like her only patient; my nurse for the research that became someone I want to hang out with outside of the study; texts from people in my corner, reminding me of their prayers; a balloon bouquet from back home that brightened the room and a Unit Tech that brought a smile to my face. But I can't forget to mention the biggest present of all, the hope of finding a cure for FA! It's all so overwhelming. This gift of FA. It's sacred. And I don't want to miss any of the lessons I am learning on this journey. This sacred adventure called life.

So yea, I miss you 9A at TGH. You'll always be a part of me. And hopefully sooner than later, my time there will help lead us to that cure. A cure for FA!

some of 9A at TGH

A different kind of Mothers Day.

I should know better than check Facebook on Mothers Day. It's an in my face "book" reminder of the life I thought I would have. A comparison between the world and myself. It makes me feel like everything I wished for has not come true. The reality of what is and what I want is so obvious. My newsfeed is full of people and their children. It is as if a sign hangs over my head that reads in neon letters, I AM DIFFERENT.
Honestly, a few years ago this day would have made me so mad. Anger would have reared its ugly head and cynicism would have taken root. I am not sure why but I am not feeling that way anymore. I am human so there is a sting of pain as I scroll through the photos. I feel sad as I reflect on what could have been if FA had not come into my world.
But this Mothers Day, I was able to experience a sense of freedom. If I haven't been faced with this life altering disease, I would have missed out on a lot. I would not have met some of the amazing people I met this past weekend. It is sad to think that I wouldn't have felt the extraordinary peace I experienced at USF during my neurology tests. I wouldn't have the gift of Wings of Mercy flying me and a friend to the appointments. My book is full of chapters of God's faithfulness in the little things. The weather was incredible. My friend, Sandy, who joined me on this trip, was so selfless.
 My story would be vastly different if all my wants came to fruition. Yes, I am sad that I am not a mom. At one time, I was convinced that I would be a wife and a mother of twins.  I hate that I didn't get the life I thought I should have. But I finally can say I am thankful for the one He is writing. So, so thankful. I can genuinely say I am grateful for that neon sign that hangs over my head. I AM DIFFERENT.
That difference has confined me to a wheelchair. It makes me uncertain of the future. I do have days that I want to stop fighting. My life can be overwhelming and frustrating. But I have gained so much more than I have lost. It forces me to trust. It makes me relax. It helps me to lean into the unknown. It encourages me to hope. It enables me to breathe God in and breathe him out. FA makes me want to be brave.
I am not a mom. I am different.
I have stopped wasting energy on what should have been and fight for what may be.
This past weekend was my final screening for a new clinical study at Tampa General Hospital. Next week I will spend 10 days in the hospital as I participate in a study that hopefully will further advance a cure for FA.
I was able to look through the photos of other moms and be okay with the story He has for me. I was even able to smirk at the different lives we all live. We all have a story. It's what we do with it that counts.

Outside the plane that took us to Tampa this weekend.

It's such a privilege being this dudes "mom".

FA or not.

The other day a friend asked me what was the hardest part of having FA. I had no idea how to answer her. Typically, I am not at a loss for words. I think I mumbled something about how this disease has been such a slow progression. I explained that I don't focus on one thing that is hard. Everything is hard. I don't have a choice. I just live life as it comes. This answer seemed to work for both of us. We moved on in the conversation. I was touched by her sincerity. At the same time, I was unnerved by my uncertainty how to answer. Honestly, I was haunted by this question. Or deeper, I felt embarrassed by the real answer. In reality, I am ashamed of the truth. Ouch.
I was talking this out with a wise friend a few days later. "I am scared that the hardest part of FA is doing it all alone." She replied gently, "Isn't that we're all afraid of, FA or not?"
So, so true. Her question engulfed my thoughts for days. Maybe forever. For now, her question has been my filter as I respond to things. Like the other day, I was with a group of friends hanging out in their living room. Barkley was restless and had difficulty relaxing. Because of this, I got out of my wheelchair to sit on the floor with him. When the night was ending and people were saying their good-byes to one another, I commanded Barkley to stand. I needed to reposition my body so I would be able to hoist myself back in the wheelchair. A friend who was sitting next to me saw what I was doing and said, "Now I know you want to do this by yourself but can I help you?" I quickly made some kind of joke as I pulled myself up. I was so relieved that I didn't fall as I declined his offer to help. I couldn't stop thinking about his disclaimer, 'I know you want to do this by yourself...' Ouch. Rewind back to the question my friend innocently asked a few days earlier, "What is the hardest part of having FA?"
This was it. I was answering it. Right there it struck me that I fight so hard that I don't need anybody. I got this. I'm fine. But the truth is, I'm scared out of my mind. I'm sad of what was and petrified of what will be. But it's in the now, the present, that I am afraid of doing life alone. And yes, for me that is a life with this dreadful disease. But it is the life I have to live. And my challenge today and tomorrow and the day after is to remember God provides people in my life at the right time. I don't need to live this life alone.
FA or not.
(click on the above sentence to listen to the song that was playing as I finished this post. Gulp.)

doing hard together.

If you know me at all, you know one of my passions is the theatre. (I hope you said that in your best Shakespearean accent) I was bit by the acting bug when I was in elementary school. My parents enrolled me and my best friend in an acting class offered through our city's rec department. I still haven't talked with my mom about why they did this. Perhaps she needed to get the number four child out of the house for a few hours a week. But it worked. I fell in love with all things theater. The opportunity to channel my energy to something that was outside of the normal felt good. It wasn't until my sophomore year of high school when my English teacher, who happened to be a family friend as well, dared me to audition for the musical play that year. Yes, I said musical. I was sixteen and invincible. It wasn't as if my life revolved around acting now that I had a couple of elementary plays under my belt. But for some odd reason, I took on the dare. I decided that day to show up for auditions. No preparation. No change of outfit. No monologue to perform or song to sing. I just showed up. In a maroon Harvard sweatshirt that was my sisters; ripped Coca Cola faded jeans. And really big hair. I think I did a cold reading of something because the director felt obligated as he knew Mrs. Feenstra sent me to the audition without a prepared monologue. I am sure he rolled his eyes as he asked me to sing my song that I had. "I don't have a song but I could sing The Star Spangled Banner!" Oh my. I am old enough now to know that this song is hard to sing with accompaniment but A cappella?!? I was up for a challenge and way too confident. I bellowed that song as my voice bounced off the walls of the empty theater. I stood on that stage and felt right at home. I was bit by the acting bug. There was no turning back. That dare turned into the lead of a musical, "No, No, A Million Times No." Not only did the role in the play that year land me a solo but it introduced me to relationships that would last a life time.

me as "Birdie Seed"

Jen as "Emmaline" (center stage)

One of those friendships was with Jennifer. She was a year older than me. We cheered together. We acted together. She, too, had a role in the play as my daughter, Emmaline. We were Catholic together. And we laughed together. A lot. I loved hanging out with Jennifer.
Unfortunately, we lost track of each other. She graduated and went off to college. I had another year of high school to complete and we didn't stay connected.
About six years ago, I was having lunch with a friend at a local restaurant and Jennifer came over to my table. It was great to see her but I was in a wheelchair and had a service dog now. I felt odd. Did she know my story? We exchanged pleasantries, laughed away the awkwardness and she left. I thought it would be rare to ever see her again. Then, the week before Christmas this year, Jen messaged me on Facebook and told me she has been diagnosed with a brain tumor and would like to get together. Gulp.
Now we're doing hard together.
We made plans for this Saturday. When we met up, it was as if we were going to cheer and have rehearsal for the play. Twenty three years have passed. Life has been lived. A lot of it. There were stories to tell. A lot of them. And this brain tumor.

In a Jen kind of way, she entered  my story about FA with such grace. Total acceptance. And major love. I can only hope that I can be in her corner while she fights this tumor, as she is in mine as I fight FA.  We decided to grab something to eat downtown at Crane's. Neither one of us had ever been there for lunch. Our conversation continued as we ate our soup and salad. A hour had quickly passed and out of the corner of my eye I could see two college aged girls walking toward our table. I immediately became annoyed as I thought they were going to ask about my service dog, Barkley. I wasn't in the mood to be interrupted.  Couldn't they see we were in a deep conversation?! I continued to focus on Jen, secretly hoping that would will their curiosity away. Jen made eye contact with them. I took a deep breath and resolved myself to the politeness that needed to follow after they asked me about Barkley.
"Excuse me", one of the girls said to Jen,"we're from Hope College and we were wondering if there is something you are facing that we can pray about?"
WHAT???!!
I looked up from my salad and looked at Jen. I need to be honest and tell you my cynicism kicked in. This is weird, I thought to myself but I'll play along. Not knowing if Jen would want to share, I looked at her and said, "Are you okay with telling them?" "Absolutely!" She proceeded to introduce us and told them we were good friends in high school but we haven't gotten together in over 20 years. She said she has been recently diagnosed with a brain tumor. "Holly has a diagnosis of Freidriech's Ataxia and I wanted to get together with her. So here we are!"
"Why us?" I asked. One of the girls pulled out a piece of paper and showed us what she had written on it.  "We were at the school asking God who He wanted us to pray for and encourage. For some reason, I wrote the name Jenny. Do people call you Jenny?" she looked up at Jen.
Jen laughed, nodded and said, "Yea! So why did you come here?"
The other girl sheepishly got her paper out and said she kept sensing the word 'pie'. "The only thing we could think was that He wanted us to go to Crane's."
This was bizarre but my heart was softening and my eyes growing a bit misty. "Can we get our friends who came with us and pray for you?" one of the smiley, soft- spoken girl asked.
Jen welcomed them over and we made introductions again. One of the girls shared our story to the other two friends and the guy who joined us quietly said, "He just showed me a blond girl so that's why we came over here." Jen invited him to sit at our table and he did so with his piece of paper.
By this time, I had full blown tears. Those four college students surrounded us with such love as they prayed words of God's grace and healing over our lives. I thanked them for their courage and asked them if they were nervous to approach us. "You have no idea!" one of the girls replied.
And she's spot-on. I have no idea.
Twenty four years ago "Birdie Seed" and "Emmaline" had no idea what "they" were going to face. But He did. And He chose to remind us that He knows what Jen and I are facing. He does. He was with us back then, He is with us now and He will be with us in the future.

May I never forget that.

A selfie with our new friends

And may I never forget this.

one day...

I don't get it. This life is a mess. I don't fit in. I don't want to waste my energy to try to figure it out. I want to be okay with the grey, the ugly. Life can't fit into a box. There is no correct way from A to Z. My path is not straight. It never will  be nor do I want it to be neat. I don't want to fit into this life. It hurts. It's ugly. It's confusing. It's lonely. This life. The one I have been given to live with Friedreich's Ataxia.
Ataxia.  A disease that I am not very thankful for. A  disability that robs me of so much. A diagnosis that has changed the course of my life. It's so messy. And FA makes me feel all of those things and much more that only God and my dog knows.
But tonight I am so grateful Ataxia became a part of me. Because of this dreadful disease, I met the Veldink family. And if you are blessed to know them like me, you know what a gift you have been given. Two of their three girls have been diagnosed with AT, another form of ataxia. Today, Olivia, entered the arms of Jesus.
Every fiber of my being is screaming NOOOOOOOOOOOOOOOOOOOOOOOO! It's not fair. Livi can't be gone from this life. She was only in seventh grade. My heart aches for her older sisters, Abby and Kate. I weep for her parents Dave and Mary.
But I trust  that Livi is okay. She is more than okay. She is experiencing beauty for the first time.  Beauty so crisp and  vibrant and clean. It's no longer grey for Liv. It's bright. I believe it all makes sense to her.
So tonight I cry. Tears stream down my cheek because I am still in this life. But I am thankful for Ataxia. That sounds weird, I know. Almost fake. Trite. But nothing about AT or FA is false. Olivia, Kate and myself know that firsthand. Along with Veldinks and countless others, we are fighting like mad to eliminate this awful thing called Ataxia.
And one day, we will join Liv and tell her thank you for really living in this messy, ugly, unfair world. Your sweet smile and priceless giggle will keep us going. You will never be forgotten Olivia.

left to right: Olivia, me and Kate

And hopefully one day, Ataxia will be...I'll see you soon, Liv.
Meet the Veldink's: click here.

writing why I don't write.

I was out with a friend the other day and she told me I needed to write. She followed up her instruction with my next blog entry,"You need to write why you aren't writing."
 "Okay." I replied sheepishly. I even proceeded to get out my phone. I pretended I was putting it in my notes app to save as a reminder. I totally didn't. Honestly, I blew the idea off. In a second I decided that I don't write because I have nothing to say. Duh. However, as quickly as I formed this answer in my mind she blurted out, "Holly, you have something to say." Gulp. I didn't ask her if she was a mind reader. I just gave her a half smile and shrugged my shoulders.
Since our conversation, I had some of these excuses run through my head, 'It's not that I say anything that hasn't been said before., I am not some profound writer with a fan club who hangs on my every word., Writing is hard... BUT she is right. I do have something to say. Not because of me. Because of Him. God. This story is not mine to keep. He is the one working in me to give me the grace to live. It's hard. Very overwhelming. Completely lonely. Somewhat confusing. Absolutely exacerbating. I'm desperate. For Him. And that's right where he wants me.
I owe it to Him to put my raw feelings on paper. It isn't my story. Yes, I'm living it. My body is the one afflicted with FA. My butt is the one stuck in this wheelchair. It's my decision to rely on a service dog to help me get around. I am the one that falls if I don't concentrate or even if I concentrate. BUT it's my soul that longs to be at peace with Him. And I mean, really at peace. Content. And all of this is only temporary.
I don't write because the majority of time I don't feel that way. I don't. This momentary life feels like it will last forever. I listen to my negative voice a lot. I fake a smile quite a bit. My laughter sometimes is used as a way of redirecting the moment of truth.
At the core of who I am, I love God. That's weird, I know. I am motivated by the one who could heal me in a second. Yep, I am.
And so I don't write because I put down on paper words like that. I am fearful of being misunderstood. I am scared of being patronized. And these words make me accountable to be real in my faith.
I love what Bob Goff tweeted this morning. "We keep asking for more proof; God keeps saying our lives are more proof."   And I adore Goff's response when a follower asked him if he was speaking of existential or empirical proof? And here was Bob Goff's reply, "Oh my, I don't even know what that means...just enjoying God this morning. Hope you have a terrific weekend."
Absolutely hilarious. And so profound. I just need to enjoy God. I think for me, that means I need to write. Not just when it's easy or convenient. In the mess, too.
Life is messy. And beautiful.
Yes, even with FA.

There, Jo, I said it.
Therefore, I wrote it.

Posting this photo may teach Jo to think twice before she speaks into my life again. :) 

 

Love you, Jo!

it's in the exhale.

I have writer's block. Or I'm stuck. Maybe a tad apathetic. Feeling indifferent. It's easy to lean into my anger. I'm angry. That means I'm afraid. I'm fearful. I am.
The future scares me. The present overwhelms me. And the past makes me sad.
Whoa. That was a mouthful. A bit depressing but honest, raw, sincere. I want to be all those things. Even in the midst of the hurt. I tell myself it is okay to be sad. Disappointed. In my world, I can be all of those things and still belong.
Belong.
 I can't say that word without inhaling deeply.
 It's in the exhale that I learn. Slowly and often painfully but I grow. My heart molds into something different. The shape of it comes out sharp or rounded, brittle or soft, big or small, bruised or shiny. But my soul emerges with something. That something is not always welcomed. Occasionally it's not defined. And mostly not understood.
This something is suffering.
It's part of life. That doesn't mean I like it. I certainly don't get it. And I'm not going to pretend I understand it.
 Suffering stinks. It's so hard. Confusing. Lonely. Scary.
It's not hard to imagine that I can't just blend into the wall. Sneaking into a place is impossible for me. Forget being late and not making a grand entrance. I have gotten use to this. To ease my anxiety or discomfort of being stared at, I tell myself people are looking at the dog. He's a stud.

"Keep repeating that, Holly.  You're fine. You're not different. You belong."
Inhale. Deeply.
It's the exhale I'm working on.
I'm still struggling to breathe from a comment made by a parent to their child last week.
"Why does that lady have that dog, Momma!?"
Honestly, I added the "Momma" part to make this lady more enduring than she really was/is.
Keep in mind that this child and her "momma" are only inches to the right side of me. In fact, I could have spit in her face, we were that close. :)
"That dog helps people like her."
People. Like. Her.
It was as if those three words came over the sound system on 8th street. Echoing.
People. Like. Her.
 It felt as if the hundreds of people that lined the street, watching the street performers stopped and stared at me as those three words were shouted over the loud speaker.
A person like me.
I'm still in the process of figuring this statement out while I'm exhaling. The shape of my heart is still being molded. But I'm learning.Growing in the hurt.
I long to be someone who doesn't see a difference in another person.
I want to treat them as if they belong.
Inhale.
Because they do.
Exhale...

We all do.

still treading with me

 We all need a Dave and Dina. Maybe not this Dave and Dina- although I know many of you are their peeps- but everyone needs A Dave and Dina. If you google "how to be a friend", I am pretty sure their photo would pop up. If I were half the friend to people like they have been to me, my life would be rich indeed. And I'm not talking monetary rich but the rich that really means something.
Longevity. A word that describes our friendship. They came into my life when I was 17. I was literally dying from ulcerative colitis at the University of Michigan. They visited me in that hospital room as a stranger and left with a tight grip on my heart. They let me be me. They loved me as I was. Of course, I had this Christianity thing all figured out. Or so I thought. Then life took a hard turn. Not only was I faced with an unrelated illness, I was hit head on with this bizarre diagnosis of ataxia. I was drowning in uncharted waters. Dave and Dina were treading water with me.

And they are to this day.
They are missionaries in Vienna now. But that doesn't mean they love me any less. They were back in the states for some meetings and family time. In their craziness, they took the time to connect with me.
Our visit was exactly what I needed. It reminded me that I am not alone. There are days that I feel like I can't swim anymore. I get weary of choking on this vast ocean of water. The waves seem too big. Just when I think I can't do this much longer, I am loved on by Dave and Dina.
My hope is that you may have A Dave and Dina, too.

“When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the LORD your God, the Holy One of Israel, your Savior” (Isaiah 43:2–3a, ESV).