Coming out of the chronically ill closet

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After barely beginning to experiment with sharing a little about my life through this format in 2015, everything came to a screeching halt for me. Last I checked, nearly three years ago, I was describing myself as a mother of three teenagers and sharing some of their more riveting high school antics. Fast forward to present day, and life looks very different for me. Now two are juniors in college 1300 miles away from home, and the youngest is a freshman at a much closer, in-state university. Everything is what one might expect with them in those stages of life, but for me, not so much.

The very summer after my two oldest, twins, graduated from high school and began their college adventures, I simply and without much notice, fell apart. One might expect a mom to grieve and have lifestyle changes when the kids fly the coop, but this was more than that. While I will not go into a list of symptoms at this time, I will say that the following years turned into a progressively downhill rat race of hospital stays, tests, doctor visits, tears, disappointments, falls, broken bones, prayers, physical therapy, more bruises, and trying things I would have never dreamt of trying, all in hopes of feeling better and reclaiming my normal.

Because my family has relocated four times since my marriage in 1994, it is very easy to “see” the different stages of life as they’ve progressed and divide life into boxes.

  • Newlyweds, husband medical school, no kids, me working
  • Residency, long work hours, first home, babies, very tired
  • Husband’s first job, preschool/young elementary kids, fluctuating weight, trying to figure out what happened to pre-kid fun, looks, and youth
  • More settled in career, getting our social groove back, late elementary-middle school kids, fitness revitalized
  • New job for husband, middle to high school kids, soccer, ballet, volunteer work, BUSY and expensive
  • Empty nesters, hard-working husband, health decline for me, faith challenged, college kids, even more expenses

I could not be happier for my kids and husband and their knack for doing life well. I do consider it a true blessing and am very grateful for the many years and many words–lots of words–talking, advising, instructing, disciplining, training.

It would be an understatement to say I took my job of parenting extremely seriously!

I do see the timing allowed me the many years of good health, time, energy, and resources to devote to the children in hopes they would become responsible, kind, and compassionate, independent thinkers.

I can also see the timing is such that I can focus on myself, how to best navigate my newly acquired disabilities, and adapting to my new normal.

As I grouped the phases of my life into different categories, I have also had the honor of knowing different groups of people at each phase, many with whom I am now reacquainted because of that great invention of social media.

It is human nature to put one’s best foot forward on social media. Of course it is great to think friends of days gone by believe life is great and successful, youthfulness abounds, and graying hair, wrinkles and illness are nonexistent. I confess  I struggle with these issues of vanity, and especially since being dealt the cards of a degenerative neurological disease. 

I have also decided now is the time to come out of the chronically ill closet, and not be afraid of showing that I use a wheelchair and a walker all. the. time. because I cannot stand or move without falling over.  I can no longer, without great effort, put on makeup, fix my hair,do household chores, fix meals, shop in stores, speak without slurring, or write on paper. I can still attempt to do some version of all of those things, if I pace myself, rest, and have much lower expectations compared to years past. 

Knowledge is freedom, so here is me, now, in all my glory and brokenness. My wish is that my world can grow to be just a little bit bigger, and I can obtain a new level of authenticity. So, let us all carry on now and do our best one step at a time.

6 thoughts on “Coming out of the chronically ill closet

  1. You have always been so “real” which is one of the things I have always like about you Melanie. Thank you for your transparency and giving others, myself included, encouragement to be real. 😘🙏🏻

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  2. Mel I love you!! You are so strong; an amazing mother, wife and friend. You’re beautiful with or without makeup. Your soul, your inner beauty is so pure and admirable. You are an exceptional human and it shows in your kids as well. 💞😊😘 much love!! Please know I’m here to help with anything.

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  3. Melanie, what a witness to your Christian walk, although nobody that knows you or your family would ever wish pain, frustration or a feeling of helplessness on you! Thank you for sharing your story right here at Easter! Prayers for you and your family! You all are missed in Ozark!!!!

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