I Never Thought I Would a Write This

**Sorry for the typos – I wrote my post on the WordPress app, using the hunt and peck method, mostly, on my ipad, to fix Siri typos**

I am not writing for sympathy as much as for awareness. I know I lost “followers,” with my last post. This could offend others. But, I write for awareness. If you don’t want to be aware, I understand. Life is more comfortable when you can say something nice here or there and then live a full life. Checking in on your family may be all you can do, so you know about this and don’t want to read about it. I get it. I wish I didn’t 🙂

If you blog, you know Facebook doesn’t share a lot anymore. This was too long for Twitter, but I did want to share it. I once read (I would link if I could find it) that illnesses without a definite endpoint makes people uncomfortable. Things that don’t have a cure make them really anxious to be near.

Hell, I have them and they make me uncomfortable. Not just physically, either, but emotionally. I would rather have something that would end. People don’t bring dinner to people with an indefinite illness. Even families have to move on with their lives and ask you to take Uber or a Taxi, if you aren’t feeling well enough to drive. I understand because people shouldn’t put their lives on hold for something that will never end or could be years before a resolution takes shape.

However, while I wait on another final (and by final diagnosis, I mean even that first appointment since I’m still waiting. I thought it was the obvious thing – an injury, but I  am deteriorating faster than I can be treated. I am in pain that doesn’t match the “obvious.” I am frustrated, but healthcare is trial and error sometimes. Now that my doctors realize that something is not right, I get to wait. And wait some more. Fights of screaming in agony apparently didn’t tip them off.

Today was my first full day using a walker outside of my home. The first time I left the house with it and used it in the store, while my husband really did the shopping. I just needed to leave my prison… I mean house. We needed to pick up something for me to work on my own extra Physical Therapy.

It is already uncomfortable enough to have to use a walker (or wheelchair for some) when you’re young, so when the wife of a minister I respected saw me with my spouse, and she recognized me, did a double take while she was on her phone (so it’s not like I would have even waved hi to embarrass her) and hauled it back to the side of the store she came from it hurts. I am honestly not sure how I stopped my tears from flowing.

Every fear I had about using it came true. Will I ever attend a service again? People who know me could see me and be uncomfortable. Do I want to be the source of that? I try to discuss the lives of the people around me. I try to remember what they like, so I can tell them about a new movie I saw that will be coming out that will fit their interests or if their favorite author is releasing a book. I ask about their race times. Since my husband will be at work, I’ll sit alone. A walker isn’t a friend. I wish it were.

In a culture where health, wealth, beauty, athleticism, and things that are not conveyed by a walker, it makes me hesitant to use it. Yes, it can provide relief to certain body parts. But the emotional toll is huge. I can hurt physically or emotionally. Which is worse? I can’t change anyone’s perceptions. So, do I stay at home?

If I was older, it wouldn’t be so horrifying. It would be an accepted part of getting older. Instead, I’m a social pariah, despite my best attempts. I don’t want special treatment. I just want normal treatment. It’s hard to ignore walking aids, but it’s easy not to run away.

Faith and illness can be fragile, so don’t take any chances. Don’t be unnecessarily hurtful.

People who are horrified by my mere existence as a 27 year old using a walker probably don’t even remember for more than a few minute, but I’ll have to work really hard to forget it along with all of the other pain. I will work on on it, because it is part of getting well. However, I hope that I’ve never done most of the things that leave me crying, although I am sure I have. No one is perfect, but happy Public Service Announcement!

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  • Oh Sarah this makes me sad and I already have tears for you. I’m so sorry! I’m not even sure what to say except that I’m sorry and I’ll be praying for you my sweet friend.

    • Thanks, Ashley. That is really the kindest and best thing. That is what I need. I need wise doctors and a strong heart to deal with this.

  • it is really sad that people act like that even if they are uncomfortable. i’m sorry that you had to go through this & all of the other things that you’ve had to go through. it’s not right!

    • Thank you Robyn! I have always kind of fallen under “invisible” illness, where maybe you can see the pain on my face, but it’s never been like LOOK AT THIS. I wasn’t sure what to expect. It’s almost easier with strangers. Not that I get out a lot, but I’m terrified of accepting any invitation to anything, even though my house is essentially a prison with an undetermined end date. If someone who vaguely recognized me ran away instead of risking a nod, what will people who have been in my Bible studies do to me? It just seems horrible.

  • I’m so sorry you had to experience this situation! It hurts when people are unwilling to look past the walker, wheelchair, hearing aids, etc. and make assumptions. Stay strong!

    • Thanks, Kelly! I got the walker the first day I was told to try one, but then I wouldn’t leave the house. Then, I just had to leave the house. Some people have been extremely kind. I was joking with my husband across the parking lot (he went ahead to turn on the air) that I had tried to hurry across the main street area for cars, but then my knees yelled back that I wasn’t allowed. Several women were like “Take your time, those cars can wait,” or told me their stories about having to use a wheelchair and a walker after surgery. So, I will take some good with the bad. I just hope they figure out how to make me more mobile soon because that thing is SLOW. I can’t run away from anyone haha.

      • ​Haha! Hopefully they’ll be able to get you motoring faster soon so that you can outrun anyone and everyone. Lol! Happy Tuesday chica!

  • Omg! That is a horrible situation. I am so sorry that you had to endure that. I can’t even to begin to know how you feel. I love the line unnecessarily hurtful, and it makes you really think about all the times that I have been hurtful but it wasn’t necessary at all.

    • Yeah. Like, I am sure I’ve inadvertently said things to people, thinking I’m funny, witty, or smarter than them, only to hurt them. But, when I get hurt, I do lash back like that. But, when the pain goes that deep, I just cry. Like my first reaction to hurt is mad, but reallllllllllllllllly hurt is the kind of pain that doesn’t go into words.

  • That is just wretched. There are so many things that make people uncomfortable because they aren’t talked of enough, they aren’t normalized. An old friend of mine was recently diagnosed with Multiple Sclerosis and she recently posted to FB about using one of those scooters in the store and got so many side eyes. Because she is young and looks perfectly healthy. People just assume things, and don’t even realize how much it can hurt.

    • That breaks my heart. MS is one of those things that can be utterly painful and no one can see the pain. I have a neurological problem with my neck already that is “invisible,” so I stay home or take a lot of medication if I want quality of life (I don’t have to use a scooter, but I do have to rely on someone else to grocery shop, etc).
      Reading things like people making eyes at a young person using a scooter makes me wonder how intelligent the rest of the world is because I’m sure she’d be running around and enjoying the ability to take care of herself without it, if she could. I know it doesn’t help to get mad, and it’s almost impossible to change the other people until they suffer or have to take care of someone who does, but it is still frustrating. A young person does not chose that!

  • oh my gosh. i’m SO SORRY. i’m going to be honest and say that this is something that would make ME uncomfortable as the person who might see you, but isn’t caring about something all about doing brave things to show them you love them and care for them? it breaks my heart for you. i pray that along the way you encounter so many people who want to help more than hurt and who want to help you heal from the emotional wounds that stick around for awhile because of people’s inability to confront uncomfortable things.

    you are precious, you are inspiring, you are so loved.

    • Thanks, Stephanie! I think that I’ve made more friendly acquaintances and gotten more tips than I could have imagined since I used it, but to have the wife of a pastor run away from me… I just thought that calmly walking by and acting like she didn’t recognize me would have been easier. I don’t expect her to know me because, well, pastors wives meet lots and lots of people.
      I don’t want special treatment. I move out of the way. I try to be aware of when I’m blocking things or going slowly. I just don’t want to be treated less than human. And it doesn’t take a walker to be treated less than human. Plenty of doctors profile chronically ill patients (including me). Like, I come in with something unrelated to my chronic condition, but it seems like a free pass to undertreat me or worse.
      I have tried to share my pain with people who matter and who say they care, but they literally look away.
      I really need a temporary handicapped parking pass in order to maintain some independence (my mom asked if I could call Uber to pick me up/take me to PT on Tuesday) and of all the places I have to go, that one has the “best” parking. I won’t see a doctor till Wednesday to ask about it. It shouldn’t be a problem. I probably wouldn’t use it except in circumstances like where parking is limited and I have to go a long way (have you tried to carry anything with a walker?! Even a purse!), but the horror stories are almost enough to make me cry.
      The physical pain is horrific and if I want to enjoy life at all, I need a few adjustments (oh and some medical treatment), but sometimes I feel like I have lost the right to enjoy life when I lost my health. I know it is right, but I receive that message from the outside a lot 🙁

  • Oh Sarah, I don’t even know what to say. I can’t imagine how that felt and how it continues to feel. I hope and pray the doctors will figure things out.

  • I cannot believe she ran away from you. What a horrible person. I’m not going to pretend i know what you’re going through, I don’t. I wish I had something helpful or constructive to say. There are plenty of things that make people uncomfortable, that doesn’t make them any less real – you know? ignoring it doesn’t help or make it go away. People shouldn’t judge so quickly.

  • My heart hurts for you Sarah. I’m so sorry you’re going through so much physical and emotional pain. And I’m sorry you were treated that way by your pastor’s wife. I’m sure you’ve tried to think of all the possible reasons she turned and walked away. But I’m sure it hurts so much. Thank you for bringing awareness. This is definitely making me think about how I treat people in public! And even my friends who have different struggles.

  • How sad is it that if we were 30 years older or even 20 years older people would understand us so much more. It’s just not fair anymore. While I am not wheelchair bound or walker bound people still don’t understand. they judge so freely and expect us not to hurt. It’s just not fair. I said it.

  • this is terribly sad. i mean, terribly sad. not for you though, for her. because you know what? she’s missing out. she’s missing out on a rich, beautiful soul that knows hurt and healing far better than any of this. and so, her own awkwardness or embarrassment robbed her of your goodness.

    i know that doesn’t make it better. but true things aren’t always a salve for our soul in their early moments.

    i owe you an email. a big long one. so. tomorrow. plan on it sweet sarah girl.

  • Your story makes me so sad that you’re suffering so terribly- both physically and emotionally. I’m sorry that people have become an additional pain to you- that’s not right. I wish I could do more for you than pray, but I hope you know that your words have been heard and you are changing people and making future experiences better for others that are hurting and feeling social pressure. Keep writing and pressing on, and surround yourself with love and kindness as best you can.

  • This posts fills me with so many different emotions. I’m sad and hurt for you and angry at her. Illness can strike any of us at any time and I believe that some people run from it because of their own fear and discomfort regarding the matter. I am proud of you for the strength it took to get out of the house (emotionally and physically).