Real talk w/mom

It can be really challenging to know how to explain (or ask) about recovery. Whatever someone might be recovering from, they will live with their "like it or not" event in some form for years after (if not the duration of their life.)

This has certainly been the case for Emily and our family. "Progress" changes and it gets tricky to explain what the ups and downs of life for Emily look like. Our amazing mom, the one who is most consistently on the front lines for Ems, wrote about all of this recently. We shared it with friends and family who've followed her recovery, and realized it speaks to so much of what LION is about too.

The video below was made entirely by Emily. :-)

An update on Emily is long overdue. The excuse of busy lives is easy to use; admitting that these updates are emotionally challenging to write lies closer to the truth. Each word is weighed with the choice of: how vulnerable do we want to be? What crosses the line of exposing Emily’s privacy? Is it whinny? Too clinical? Also, we realize others have their own “like it or not”** story -- cancer that was in remission has returned, broken relationships still shattered, the sudden death of a loved one, the deep grief of a parent lost to alzheimer's. Add yours to the list. So, how do we have the audacity to post an update?

Well, it’s Emily’s story, her life. Many of you joined us and continue to pray for Emily. We want to respond to the frequent question “How is Emily doing?” Though unless you live in our house it’s challenging to adequately answer. There isn’t a way to be honest about her current life struggles without touching her deep losses. I long to give updates of measurable improvement. But these past few months have been flat, imperfect and heart-wrenching.

Surgery in April to repair the labral tears in Emily’s right hip was quite beneficial, but at the cost of weeks of recovery requiring 24/7 wheelchair use with gradual mobility. Gratefully by summer Emily was walking. Through the summer she enjoyed and chose to engage with extended and immediate family activities. Travel and social events come with a great cost of extreme fatigue. Her body and mind were “done” after days of family interaction, and she required copious amounts of sleep, quiet and rest. She is keenly aware of the limitations of play and fun; and, sees the difference of how she lives now compared to her pre-stroke life. This summer has been a time to grieve those losses.

We’ve explored government assistance to search for possible part-time work for Emily. The agency shared info about their programs with the disclaimer that the process is S L O W. Which in truth is fine because we’re not really sure how much energy Emily has to expend on any employment. We were just hoping for tangible information or a speck of clarity to that future dream of independent work and adult living.

Two new technologies entered Emily’s life. Her speech therapist introduced her to an app designed to rebuild skills lost to aphasia. “Constant Therapy” challenges her with tasks of remembering sequences of random numbers, rebuilding basic math skills, reading comprehension, completing verbal tasks in a specified order, spelling, etc. She’s gratified with the feedback of the app to see improvement and thrives on the challenge.

In June Emily tested an upgraded version of the Bioness (remember the “bionic leg” device?) that she has been wearing for the past year. Immediately she saw the advantage of the enhanced technology that specifically targeted her impediments to walking, and began using the newer Bioness model in July. The device wraps around her knee and sends a firehose of electrodes to the specific nerves that stimulate the muscles that lift her toes and activate the muscles to stabilize the ankle (i.e. keep her from falling). Those muscles have not been engaged since her stroke. The foot/ankle had been stabilized by an AFO (like a brace). With every aspect of new technology comes a learning curve and adaptation. Overall, she’s extremely grateful for access to these advancements in technology that assist in her living in a post-stroke adult life.

When asked “how is Emily doing?” it is so hard to answer. Does the inquirer really want to know? Is a one-word answer best at this time? If I share the details and truth of her struggles -- that her aphasia is like a prison sentence with her deep thoughts and identity locked away that may never be fully expressed -- will the inquirer counter with comments that endeavor to wrap up her life in a neat little bow of continued progress? How do I put into words what it is like to see Emily gather courage to try activities that prestroke effortlessly brought her joy and were an expression of her identity; but now are so altered because of a brain affected from a hemorrhagic stroke.

One prestroke expression of Emily’s identity was to think up creative sewing projects and create them without a pattern. She made Yoda hats for baby niece Evie and an interactive cloth Star Wars book that George Lucas would’ve ordered for his own children. Even with the offer of family to literally “lend a hand” how does Emily wordlessly transfer the creative idea in her mind so that the helper even knows where to apply the assistance? Compromises are made. Patterns are found and creative plans are restrained to match the accessible abilities.

The above is a snapshot of Emily’s life 2 ½ years poststroke. It also includes deep gratitude. Emily’s personality sparkles in her short sentences and comments. Her courage rushes forth as she plunges herself into experiences where success or fulfillment are greatly at risk. Her sense of humor is still quite clever (and still a bit snarky). Her relationship with her niece is tender and precious. We are surrounded by numerous friends and family who generously give support, prayers, love, and even have the courage to ask about how she is doing. God is providing hope, and we cling to it.

Emily plans to be back in all three therapies (speech, physical, occupational) this fall. Courage for Emily is to face the day with gratitude, a persistent determination, and a LION attitude. We are so grateful she forges onward and appreciate your continued prayers.

#LION #braininjury #disability #recovery #survival #persister #aphasia #strokesurvivor

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