Tag: Multiple System Atrophy

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Invisible

Hannah

In recent years thanks to lots of advocating by people with various handicap challenges as well as rules set by the ADA there has been a shift in many communities regarding the inclusion of people who can’t quite do things like everyone else. I both appreciate and applaud these efforts, because as a wheelchair user I can appreciate the many ways that I am able to participate because of the ways things have changed in recent years. What about when it’s not about the curbs and ramps though; what happens when it’s the people surrounding you that are the stumbling blocks to feeling welcomed and included?

For the better part of the past 5 years I have had to use a wheelchair when venturing outside of my home. While I can get away with a cane or “furniture surfing” around my house, the weakness, spasticity, and shortness of breath that kicks in after a very short distance is just not feasible to going out places away from home. So we’ve just packed me and my wheels into our van and gone about life as normally as we can. Recently though I’ve noticed the closed doors aren’t just the ones without a handicapped button.

A few weeks ago I was volunteering; wearing my badge and my shirt setting me apart as someone who could help, while sitting in my wheelchair. Two others were helping with me, and I noticed that regardless of how I engaged or smiled or said hello to people, if they needed help with something they went to one of the other two volunteers 100% of the time. I couldn’t figure it out; not seeing me there wasn’t a plausible explanation. Did they see me and just assume I was incapable because of my limitations? Did they just want to avoid a situation that felt awkward to them?

Fast forward a few weeks to when I attended a social event with several other people I knew. While two people said a brief comment or question to me, there was no one else in the entire group of people who spoke to me that day; not even a hello. I found myself frequently looking at the clock anticipating the time I could get out of there because it felt so incredibly awkward.

Perhaps someday I’ll be brave enough to ask people what it is that prevents them from engaging with me. I feel like even as an introverted extrovert this would help give me some perspective on how to help people see the real me. For now though it stings a bit. I find myself anxious about attending events and gatherings. I catch myself questioning what value I offer people, and that’s not somewhere I want to stay.

Fortunately I know who I am to God, and I’m confident he accepts and wants me regardless of my shortcomings, and despite my bumpy hard story. I know He is not afraid to meet me in my mess, and so I cling to Him there while I ask for the courage to show others who I am and what I can be besides my illness. God tells me I’m worth knowing, and His opinion is the one I hold closest when the reactions of the world around me sting.

Have you been in situations where you feel like you’re not noticed or wanted? How do you handle those closed doors that don’t seem to have a way in? Do you know your worth, other than what the world has to say about it?

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Not My Will

Hannah

After 2+ weeks in the hospital, this past week was my week to get back on track. I caught up on late orders from my Etsy store, did as much housework as I could tolerate, and soaked up time with my people. Life started to almost feel like our normal again. Then Friday came in like a wrecking ball.

I found myself sitting alone in the emergency room with a serious complication of my feeding tube that would require a painful procedure. All went well and I was home and tucked in by bedtime with the assumption that I would wake with this small speed bump behind me. Then came Saturday.

Saturday we had lofty plans. With the temperatures trying to point to autumn, the kids had been bitten by the pumpkin patch bug, anxious to take our annual family trek out to select the perfect pumpkin and sip apple cider on hay bales. Then we had penciled in a night at the rodeo, having already laid out our flannels and boots in eager anticipation. That is until I woke up.

The pain from the day before was tolerable, but every time I tried to stand I broke out in a sweat, my body shaking as nauseating waves of weakness forced me back down. Trying to be optimistic we eventually cancelled the first activity with the thought that if I rested most of the day I would be refreshed enough to still clamor out as a family to the rodeo.

It was not to be. I continued to struggle through the day, and at one point voiced my frustration to a friend. She was quick to remind me of a truth that reigns thickly throughout my days. It’s not just me that lives not knowing what I’m going to be able to do tomorrow; none of us are guaranteed the tomorrows of our best-laid plans.

So how do we reconcile with that? The only answer is that each day has to be an opening of our hands, prying our fingers off of our own wants and desires, and instead asking, “Lord, how can I best give you glory and honor today? This can only be done by keeping our eyes and hearts on Him. We may see our days don’t look like we imagined, but the gift of that is the joy we find when we are in full surrender to God’s will for us.

My weekend didn’t include the pumpkin patch or the rodeo, or any of the house projects I wanted to work on. What it was laced with was grace for each moment— the ability to cozy up in a comfy chair and watch a movie at the drive-in with my people. The strength to show up to church to help serve and then soak in the worship and the message that clearly spoke to the things I’m walking through right now. The weekend allowed me the time and awareness to walk through some difficult circumstances and conversations with some of my littles. It didn’t look at all like I had planned it, but it looked like exactly where God wanted me to be, and I was there for it.

Surrendering our days takes intention, and sometimes it might feel like disappointment, but when the end result is us doing what God most wants us to do, it brings an immense amount of joy and satisfaction as He blesses our coming and our going for the ways it honors Him.

endurance

Heavy

Hannah

The past few weeks have felt HEAVY. One of my dear friends was diagnosed with lymphoma. Chemo has started, and with it the constant fight against weakness, sickness, feeling worse than the actual cancer makes you feel. It doesn’t seem fair.

Another of my friends was also diagnosed with lymphoma, and we are in the waiting of what treatment is going to look like. A period of time suspended, feeling strangely well despite the cancer that has invaded many corners.

My sweet friend with ALS had a bad fall and ended up with a broken shoulder. A long road ahead of healing and rehab and wondering if strength will come back enough to return to her home, or if a new, harder season is beginning.

Friends with children who are trudging through broken places, with exhausted parents who aren’t sure where to turn next, who just want to shoulder these trials so their children don’t have to.

My kids are struggling with some painful battles, and I have to stand back in silent prayer and watch them fight through it, knowing there is nothing I can do to take the pain from them; it’s a road they have to walk.

My husband is on several weeks of travel, which always feels lonely and scary and takes a cumulative toll on my strength. And of course it is always when he is away that Murphy shows up in all the ways like car trouble and kid injuries and leaks under the kitchen cabinet.

It all feels so heavy; suffocating at times. Multiple times this week I have found myself in tears, overwhelmed by the sheer weight of it all. Sometimes I have forgotten my /first/ defense is to reach for my Heavenly Father. I finally remembered that in a simple prayer yesterday; “please send help.” I’m sure you know even before the end of this sentence that of course God has shown up in the ways I knew I needed, and even the ways I had no idea I did.

He has given me the energy to go visit my friend between chemo treatments, the simple presence of each other’s company being enough to reassure me of God’s presence in this story. And a smile that even in his weakened state he cut the grass and welcomed me with my own parking spot. Daily graces.

My friend with ALS does not have much of a circle, and she has spent many long days and nights sitting alone in her hospital room. God gave me the strength and the creativity to go spend some time with her and to decorate her room with color and love, as my own friends have done for me.

He has given me wisdom, discernment, and patience to assess the needs of my hurting littles, and provide the best support I can at the right times. He has given me the privilege of coming before the throne in prayer for all of these things.

And all of a sudden, with praise music playing in the background, and friends who are willing to show up both in person and in prayer, the anxieties of my heart melt into deep gratitude for all the ways I am held and carried, and the ways I can hold and carry my own people.

As I cracked the book of my quiet morning devotion today, the words specifically chosen for this date wash over me like the healing balm that they are: “Come to me, all of you who are tired and have heavy loads, and I will give you rest.” Matthew 11:28.

Another daily grace, God whispering my name, saying “I see you. Let me carry your heavy loads.”

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Buckets

Hannah

As I’ve considered the things I’d really like to do before my illness progresses enough to eliminate possibilities, I’ve kept kind of a bucket list of sorts in my mind of things I hope to get to do. At the top of the list was going to the beach with my family again. As time has slipped away though that has seemed out of reach, so when I discovered we essentially have a beach and sand dunes just a few hours from us by Lake Michigan, I jumped all over making it happen.

For months I saved up the earnings from my Etsy store so I could pay for us to rent a campsite and a comfortable RV that could power all the medical equipment that has to trail along behind me. I managed to snatch one of the last groups of days left for the popular camp spots at Indiana Dunes State Park, and started harping on my family to black out the days and make sure their bosses knew they wouldn’t be working. When one of my kids got pushback from their boss about taking the days off I even composed a carefully written letter about how important this was to our family, and praise Jesus he consented to approving the vacation days.

We planned for months… meal planning, gathering up our boogie boards, kites, and buckets for the beach, and rounding up sleds we could use to fly down the nearby sand dunes. Lists of medicine and machines I needed to have with me. I found an amazing RV nearby for us to rent, and got everything settled. I was so excited and looking forward to this time for all of us to escape our busyness and make memories together.

I don’t know if it’s sad humor or irony or what, but a few days before our trip I landed in the hospital as the result of a mistake made by the healthcare professionals. It was serious, and my hopes for a quick prescription and release were dashed as I was admitted and prepped for surgery the same night. Buckets of tears later I had begged and pleaded with each doctor, explaining the significance of the trip, urging them to let me go. It was not to be.

Father’s Day morning (and also my son’s birthday) was the day we were set to leave. The rest of my clan packed up the RV and came to the hospital to have a makeshift celebration with me before they hit the road for our vacation. There were to be no refunds for what we had paid, and by then there were no other days available to rent camp spots, so it made the most sense for them to go ahead without me.

The disappointment mixed with excitement in my hospital room that morning was palpable, and I felt genuinely joyful they were still getting to go, while at the same time deeply disappointed I would have to stay behind. There was a flurry of hugs and kisses as I sent them on their way, demanding many photos.

In the stillness of a familiar hospital room my frustration burned hot rivers down my cheeks. All the things I have lost to this disease, Lord, why did this trip have to be one of them too? The whole point was for it to possibly be one of my “lasts.”

In the painful silence of a room that overlooked a brick wall, I remembered the story of Nehemiah. A man who had worked so hard for something, and then had seen it come crumbling down. He says he sat down on the ground and cried. He mourned for several days and refused to eat. Then he got up and dusted himself off. He thanked God for keeping His promises, and he prayed for restoration. This is the heart posture I desire to have.

Charles Stanley said, “Taking time to lament what we have lost can be an act of worship. Nehemiah allowed his distress to lead him into deeper communion with God. Offer your tears as devotion to Him.”

I pray that through the many disappointments and missing outs of this disease that I will learn more and more to press into Jesus through my frustration and discouragement. I know He sees far beyond what I am able to, and I trust that He knows how to write more good into my story.

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The Gift of Suffering

Hannah

Last night in my Growth Group we came across a verse in 2nd Timothy 4 that gave a charge to “endure suffering.” It was such a simple statement, tucked in among a small list of things we are called to do as believers in Jesus. I found irony in how matter-of-fact the command was.

Suffering has barged in on our most important dreams and deepest desires. We try to avoid it at all costs- dodging this way and that to ensure our happiness, comfort, and contentment. Enduring suffering is probably not at the top of our to-do list every morning. What if Christians believed what we preach though; that God is enough?

Psalm 146:5 says, “But joyful are those who have the God of Israel as their helper, whose hope is in the Lord their God.” He is enough to bring us joy, to make us happy, regardless of our circumstances, but we need to lean into Him.

Leaning into Him is something I have to practice hard at daily. I am sloppy in my suffering. However, I realize the gift that it is to me, because suffering easily strips away the things that become substitutes for my happiness, and it opens me up to the indestructible happiness found in God. When my hope is in Him I find I can more freely enjoy the good things He gives me, because I am not dependent on those things to make me happy.

When our lives are spinning along without the interruption of pain or sadness it’s easy not to feel a need to seek God’s help; He often doesn’t hear from us until we are weary and crying out for mercy. When suffering comes along we realize He is our only hope, which sends us running to Him. This is why I can be grateful for the suffering He has called me to; it keeps me dependent on Him.

What about you? When the burdens you carry have made you weary and sad, are you able to find happiness and contentment by letting God fill up your empty places? It can be hard, but it’s also liberating. Let’s do it together today. Wherever you are in your suffering, lean into Him. Give Him the chance to show you that He is enough.

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If Pain Could Kill

Hannah

Daily I live with a certain amount of lasting, chronic pain. My doctors have worked long and hard to try to manage it enough that I can function as much as possible. This week has brought difficult new challenges though. Regardless of what I do in a day, sometime around 4 or 5pm I’ve started having the most unbearable pain. My medications don’t touch it, neither do the handful of topical rubs I apply, or the essential oils I take by the capsule full. Obviously sleep evades me during this time, as I can do little to get comfortable with my muscles and bones screaming at me that something is very wrong.

There are a lot of effects of this disease that I can push through. I can go from puking to putting on a smile and showing up at church on a Sunday morning. I can be super short of breath and hook up to my vent and still make it to my babies’ concerts and ball games. I can go from fainting to re-orienting myself and carrying on with the responsibilities of my day. But this pain. Sometimes I don’t know how to push through.

After working in healthcare for so many years I’ve always tried to be really realistic when asked to rate my pain. I have the best chart ever, and often I refer to it to make sure the number I’m blurting out is on par with how I’m really feeling.

Most of time I’m sitting around a 6 or a 7. Nighttime lately is an 8-9. I find myself anxiety-ridden and begging for mercy. There are times I feel like I can push through anything but this pain, and I think to myself that if pain alone could kill, I would surely die.

I beg God that if He can take one thing away it would be my pain, because I feel like it’s the thing that makes my world stop turning. It’s the thing that prevents me from meeting my people.

Then I remember that pain is the thing that most brings me to my Father’s arms. It is what ushers me into the sacred places of other’s suffering, allowing me to be a channel of Christ’s compassion, comfort, and love. This season has been long and intense and piercing— but all of these tears and pain and desperate prayers have been not only for my own good, but for the good of other individuals entrenched in suffering. It is 2 Corinthians 1:3 in action:

“He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.”

Even living in the cruel agony of a terminal illness God is continually showing me how He turns my pain into lasting and eternal gifts. And so I find a way to cling to the shreds of hope and the miracles He works on behalf of His suffering children, and I can trust that He will hold me together and work these wonders together for the good of my soul.
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Making Lemonade

Hannah

Ever the entrepreneur, my boy is an experienced lemonade slinger. His delicious recipe and adorable smile keep people stopping , and most days he turns an impressive profit for a 11 year old.

As he started gearing up for the first sales of the season he said, “hey mom, you know how I was going to save up my lemonade money and buy a motor bike? Is it possible for me to save up all my money and use it for a cure for your sickness? Utterly humbled by his compassion and thoughtfulness, I did my best to explain that there is no cure; it’s just doing things to try to make my body as comfortable as it can be.

Flash forward to today- he was setting up his lemonade stand, and he paused to come talk to me. “You know how you said there is no cure for your sickness? Is it ok if I use my lemonade money to pay for the next few medicines you need?

There are few things in life that prepare your heart to be absolutely melted and shattered and hugged and twisted all at once like that. I’m so thankful for the empathy and gentleness that my boy is learning, even in the midst of such heartache.