My problem is trust.
I can no longer be transferred from wheelchair to bed and bed to wheelchair in my usual way. With progressive motorneuron disease, adaptations are always occurring, every year bringing a decrease in strength and abilities, as well as changes in how tasks of daily living are performed. This year, however, the change in transferring is due, not to my increasing weakness, but rather to the weakening strength of my main caregivers: my parents.
My loving and amazing parents are in their mid-seventies. In my logical opinion, this is too old for anyone to be taking care of a severely disabled person. My mother would certainly not be able to do it alone, as she has her own debilitating conditions and has long ago stopped being able to give me chest percussion therapy, something that I need daily (best twice-daily) to keep my lungs clear and breathing. Several years ago, she also became too weak to pick me up in her arms for transferring me in and out of my wheelchair. Thankfully, my father was retired by this time and became the only person to freely transfer me. He did the heavy lifting, in other words. But now, his shoulders just can’t bear it — bear my weight — anymore.
Thankfully (again), we had a ceiling track lift installed in my bedroom in 2010. At first, we only used it to carry me from the bed to my raised bathtub, but when my mother lost lifting strength, sometime after 2015, she began using it to lie me down — but only when my father wasn’t around and she absolutely had to, because it was rough on both of us. Since February of this year, both of my parents have been using the lift for all transfers. Sitting me up is especially challenging, difficult for the caregiver and tiring for me.
But we do what we have to do.
Although I feel like I have gone from driving five minutes to work in a car to having to take a horse and buggy, I know that this transition, like all of my transitions in my life, will get easier with time and practice. Well, it might not actually getting easier, we may simply just get used to it.
There are many things that I have learned to just get used to in my life of progressive, disabling disease.
This whole process has brought into sharp reality, however, my utter dependence upon others. Especially my utter dependence upon my aging parents, because home healthcare is not reliable. I don’t see how my parents can keep up with my care for another year or more. They are aging, and there are too many weaknesses and illnesses that can happen.
I’ve written about this before, my worry about what the future holds for me, what my care will look like when I can no longer have my beautiful and generous parents as my caregivers. It’s a genuine and very realistic concern.
And it’s a downright fear.
The Power of Prayer
This Lent, as I ponder prayer, I am taking this fear, this sorrow, this struggle — this cross of mine — to God, prayerfully. Yes, I pray that my parents will remain healthy and as strong as possible, and I pray that good people may be sent to us through our home healthcare agencies to truly take the burden off of my mother and father. (I’ve even prayed that, if it’s God’s will, I won’t outlive my parents — not a normal prayer for a 47-year-old, I know, but I’m not a normal 47-year-old.) And yes, I need to trust in God’s goodness to believe that He will graciously answer my prayers … but I don’t honestly know what the best answer to my prayers would be. I’m not God.
So … (gulp) …
I need to trust.
I don’t know what the future holds. None of us do. Sometimes, thoughts of tomorrow are frightening, even while the struggles of today are difficult. In all of this, we need to remember — I need to remember — that we live, move, and have our being in God, Who is Love.
Prayer is not the way that we access a divine vending machine. Prayer is opening. Prayer is awareness. Prayer is communion. Through prayer, I give my attention, my whole mind and heart to God, and I receive His Spirit, divine grace and peace. Prayer is more than a way for me to get what I want — is what I want at this moment really what is ultimately best for me and those I love, anyway? I don’t know. That’s the point of this reflection: I don’t know. So I need to trust. I need to remind myself and tell myself that prayer is for conversation with God, a giving and receiving — not of words or bargains — but of spirit and life.
Are You Listening, Christina?
Remember? Prayer is communion with the Source of All Life, the Source of All Goodness, the Source of All Joy. Place your heart, Christina, into His Sacred Heart, and let your sorrows and fears melt in the warmth of His incarnate love, His ever-present presence, His unerring truth and ceaseless ability to always work toward the good. Trust in God’s love and let your suffering drip from your mind, flow through you, saturate your heart and rouse the freedom of letting God love you through everything. This is true goodness.
May my prayer life simply be my life lived in awareness of God’s presence. May I let the dormant seeds of hope and courage be awakened by the light and heat of His love, watered by my tears through His grace, so that I may blossom forth into joy, true joy. This will happen, not through anything that I say or do, but simply by being, by giving myself over to union with God’s ever-present presence in prayer.
Eternal perspective is given through deep prayer: the peaceful knowledge and confident expectation that Christ is in all.
© 2022 Christina Chase
Although crippled by disease, I'm fully alive in love. I write about the terrible beauty and sacred wonder of life, while living with physical disability and severe dependency. A revert to the Catholic faith through atheism, I'm not afraid to ask life's big questions. I explore what it means to be fully human through my weekly blog and have written a book: It's Good to Be Here, published by Sophia Institute Press.