Today would have been my brother’s birthday. He was my only biological sibling, two years younger than I. At the age of 9, he was diagnosed with an incurable neurologically deteriorating illness. At the time of the diagnosis, there were only 100 possible known cases throughout the United States. Schilder’s disease became the word of terror, as we watched the unthinkable take over our lives. This uninvited guest of demise turned our world upside down.
We didn’t know too much about Schilder’s disease back then. There was no internet — medical books with the thickness equivalent to the step stools in our home held what little information from which we could glean our limited understanding. Apparently, this dreaded illness is in the family of multiple sclerosis, cerebral palsy and Lou Gehrig’s disease. It launches a vicious attack on the nervous system which affects the motor skills and bodily functions. There is no cure. All that is available is a plethora of drugs to keep the patient ‘comfortable’ as they go through their one-way journey.
I remember when his third grade teacher sent home a note that told my parents she had noticed how he had been tripping over his own feet in the school yard. When my mother questioned my brother about this, he blamed the “tiny rocks” in his shoes that caused him to walk unevenly. Of course, this was not the case. Then I saw him unable to navigate his bike as we rode down the street — and the frustration that poured over him. Eventually his hearing was affected and he had to wear a hearing aid (which he detested and would often turn it off to avoid hearing conversations).
When the time came that he could no longer attend school, it seemed as though the drapes were slowly closing and the light in the house had grown dim. The laughter that used to fill the rooms were silenced and we all were dismayed at this terrible uninvited guest. There was little consolation as there were no experts to whom we could seek for guidance or to seek information about what to anticipate in the days ahead.
Our family life became one of home health and hospice — before those were actual known services and professions in the medical industry. Performing the duties of physical therapist, nurse and chaplain, we went into action to keep him comfortable for as long as he was with us. As my brother eventually lost the ability to walk, talk, feed himself and lift his own body out of bed, he remained in that hospital bed in the living room. Only separated by a simple folding room divider, he remained in that bed for several years. It required at least two of us to lift him out of bed and into his wheelchair so that he could experience some sense of family and inclusion. There were the occasional seizures and the weekly changing of the feeding tube that seemed the most grueling if you happen to be on shift during those times. The marked moment came when he had been admitted into the hospital for testing and suffered a very high fever followed by convulsions. The doctors had given us no hope that night and placed him on a ventilator. Their only advice was to prepare for the worse and call in any family members to say their goodbyes.
Watching my dad pour over his son in agony was heart breaking. My grandfather paced the hospital floor to deal with his anxiety. Then came the moment we all dreaded. My dad made the decision to take my brother off the ventilator. I remember his words so clearly, “We cannot keep him on a machine forever.”
Tears streaming down his face, my dad conveyed his decision to the medical team. In that dark hospital room, we all said our goodbyes that heavy night.
Early the next morning, I was awakened by the news that my brother had survived the night without the ventilator. In fact, he went on to live the next 10 years.
I wish I could say that there were happy memories that followed after that grueling night of uncertainty. But I don’t have those kind of memories to look back upon. The decade of unpredictability and emotional tidal waves were all but pleasant. At a time in history when it was more embarrassing to divulge family trials over incurable health issues, I learned to conceal my experiences as a protective shield against the judging eyes of those lacking empathy.
In the middle of all that, I accepted Jesus as my Lord and Savior. To onlookers, it was my solo attempt to deal with the sorrow of grieving — some folks referred to it as ‘getting religion’ in light of facing mortality. But seeing Jesus in the midst of pain when no one understands or hears the groans of your heart — that’s not getting religion; that’s gaining relationship.
From the ends of the earth I cry to you for help when my heart is overwhelmed. Lead me to the towering rock of safety, Psalm 61:2 NLT
The Lord became the only hearer of my cry-through-the-night seasons. Only He was audience to the pain-filled moments of ‘take me instead of him.’ And while it took a long time before I allowed Him to pry my fingers off my determination to fix the brokenness in our family, I still walked with a wonky stride.
When my own children would come home from elementary school, I would unlace their shoes and empty a pile of wood chips that mysteriously found their way inside those shoes. Inquiring minds want to know so I would routinely ask them if they were playing with their shoes off. Repeatedly the answers were always ‘no.‘ I asked them, “Don’t you feel these wood chips in your shoes?” Let’s face it, it’s got to hurt, right? But time and again, they would reassure me that they were fine and no discomfort was ever noticeable.
Sometimes we can go through life ignoring the discomfort to avoid saying what is on our hearts and minds — for fear that we would be looked upon as weak or unable to cope with life and its out-of-nowhere curve balls. Speaking from personal experience, it’s so easy to grab the next best thing in front of you to busy yourself — work, projects, sports, academics or hobbies — to avoid feeling the growing discomfort ‘in our shoes.’ A sort of anesthetizing of the soul. There are those cry-yourself-to-sleep seasons when we try to hide pain and hurt because we feel no one wants to help carry the burden with us, much less hear of it. So we stuff it into that mental basement and keep walking with wood chips in our shoes — ignoring the call to reach out.
Jesus taught me that relationships — community — will help me empty out some of those wood chips stuck in my shoes. In fact, there have been loving friends that emptied their own pile next to mine. These faithful few are a constant reminder that while life is not flawless, and often involves a lot of pain and unexplainable events, this side of Paradise I have those who are willing to walk this journey with me. They rejoice with me when there’s celebration, but are also willing to lovingly speak truth into my space. If they notice something is slightly off, they are unashamed to ask me what’s stirring. They give me ‘permission’ to unveil the hidden uneasiness and love on me as I cry through the pain of unlacing my shoes. They are there to help me untie the knots in my laces and empty my shoes of the wood chips I’ve collected so that we can keep walking. They’re not willing to watch me walk gimpy ignoring the sharp pokes of things that need to be attended. Somehow they know to bring a tissue box because all that bending down to remove shoes can cause the tear ducts to release tension. Funny how it’s all wired and connected that way. True friends just seem to know that.
Friends love through all kinds of weather, and families stick together in all kinds of trouble. Proverbs 17:17 The Message
I choose to bend down to help you empty your shoes of the wood chips you have picked up along the way.
Is there someone within reach who could benefit from your kindness and compassion today?
Friend, I encourage you to pray that GOD would reveal to you that one whose heart aches for companionship and understanding. Their shoes may be filled with years of accumulated wood chips. And you may be the one chosen to be blessed with the privilege to help them empty their pile next to yours.
If you are the one in need of some help to remove your own shoes and the pile of wood chips that are nagging at the tender spots of your ‘sole,’ I pray that you’ll reach for that trusted friend or that GOD will send one your way.
I love you to Heaven and Back, Girlfriend ~~
LindaRJohnson, TitusTwo Visionary
Wow Linda…that was so powerful and touching! Thank you for sharing your heart, your pain and your life. So grateful to be there for each other to wipe away the tears and help with each other’s wood chips! ❤️
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Sharon: The lil’ pokey things in our midst can make us uncomfortable enough to stop in our tracks. I agree, having a community of true Friends helps us to walk with a smoother stride and a smile on our face. I’m glad you’re there with me. (((HUGS)))
Such a heartfelt post. I can only imagine how painful it was to go through that. I have taken care of such children, and once had a young patient with a similar disease. It’s like MS for children. He was the youngest brother, had 2 older sisters. Started to lose his ability to walk and talk around age 10.
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lilarebecca: You are gifted to be able to care for those with such challenging needs. Blessings on you, Friend, for being someone who others can look to in times of need.