LOSING INDEPENDENCE

There is something to be said for teaching our daughters to be strong, fearless and independent women.

But what happens when they grow up and illness steals everything away that made them feel strong, fearless and independent. It’s like an Etch-a-Sketch that’s been shaken vigorously, erasing a masterpiece that took so much time and patience to create.

We are pressured to be and do everything. Be a perfect mom, have a career, keep a nice house, be a member of the PTA, be a good wife, look like you’re 20, forever stay physically fit, always be happy, have perfect kids, be a great community member, solve world problems… OK maybe it’s not that bad but it sure feels like it some days and as women we strive to do it all.

Back when I still thought I could be a perfect Mom.

When reality hits it can feel like the ground opens up and suddenly you’re falling with no end in sight. It’s an overwhelming and devastating reality check. You can’t do it all, who knew?

Suddenly you go from being self-sufficient to depending on someone to help you with everything. You’re never alone out in public. Because you can’t drive or push your own wheelchair.

Let’s look at that list again of what a woman should be~

Strong

  • ~your illness leaves you needing a wheelchair
  • ~you’re exhausted and you rest more hours than you’re active

STRIKE ONE

Fearless

  • ~you’re so friggin scared of everything, not getting better, getting worse, dying, being left alone, hurting your children, losing your spouse
  • ~basically you’re afraid all the time, of everything

STRIKE TWO

Independent-

  • ~you’ve given up so many things you love, working, running, coaching and driving
  • ~you can’t go anywhere on your own
  • ~you can’t be spontaneous because someone else has to be with you

STRIKE THREE

There is so much you lose control over, when you’re sick. Your life is no longer in your hands. Your healthcare is in the hands of a multitude of physicians. You can no longer go to the store you want to or the restaurant of your choice. You go wherever the person who is taking you chooses.

It’s amazing how much more I can do with a motorized chair. I really hope I get my customized chair soon.

The guilt you feel every time you have to ask someone to take you somewhere or help you with things, is all consuming. You keep lists, lots of lists. Because the minute someone says they’re going out, you have to be ready to ask them to run errands or grab stuff for you.

Chronic illness takes so much that able-bodied people can’t even imagine it. Picture a life where you can’t even shower, eat, or potty for that matter, without medical equipment, feeding tubes, pumps, catheters, or medication. Life’s simple basic necessities that everyone takes for granted are huge obstacles for you every day.

The truth is the minute you’re assigned a patient number, you start to lose your identity. Medical professionals no longer see a person with feelings, family or dreams. Your friends start to see you as a liability or a burden. You stop getting invited to things. Family hovers and smothers you with love, out of fear of losing you. You no longer feel like people see you, they only see your illness.

But guess what? Eventually you and your illness will come to an understanding. You will lose your independence. But you can keep some of what you were taught about being an amazing woman. Let’s look at that again.

Strong-

You fight every day through pain and struggles. Just to get as much out of this life for as long as you possibly can.

Fearless-

Fear is the greatest deceiver in this world. It keeps us from doing the things we want or need to do. Not everyone fights. Some people hideaway, they just give up, they lose themselves completely to their disease. The fact that you get up every day and keep going, knowing that it will be as hard or harder than yesterday, is courageous.

Independent-

Yes you lose your independence. But you gain an awareness of who people really are, what you mean to them and what they’re willing to give up to see you happy and in their lives.

I’m ok with being “sort of” strong, fearless & independent. As long as I’m trying, I’m winning.

“You wake up every morning to fight the same demons that left you so tired the night before, and that, my love, is bravery.” ~Unknown

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