Dear Legs,
You’re failing me. I have tried to reconcile with you on many occasions, telling myself everything was OK. Searching for the sunshine in a storm. Making excuses every time I have to dial back on life a little because I cannot do what I want to do. This just isn’t working out and it is time that we part ways. Except that YOU ARE ATTACHED TO MY BODY.
Moments ago I was lying on an ice cold garage floor. My weather app said it was 29 degrees outside, the floor felt like zero degrees. The only thing I was thankful for in that moment was that the ice cold floor was a good substitute for an ice pack for my fingers. Which, also thankfully, weren’t bleeding although they felt like they had been ripped from my hand. I lay there, my legs tangled in my daughter’s bicycle, one of my knees stinging from the impact of hitting the floor and my arms stretched beyond belief after an attempt at grasping whatever was supportive enough to hold my weight from going down. They apparently didn’t find such an object. So there I was, completely laid out on an ice cold concrete and dirty floor. Legs, what happened here? I needed you and you failed me. Again. At least I was able to nurse my poor fingers. At least.
My knees have been bruised so many times from falling that I don’t think they even technically bruise anymore. The rainbows of purples and greens and yellows are now reserved for parts of my body that come to meet toys, or corners of furniture or other odds and ends that are the victims of my body crashing down on them. My doctors, my family and maybe some of my friends (totally out of concern, caring and love) wonder why I let myself fall. “There are things to help you” they say. Things. Canes, walkers, handles or railings, a wheelchair. Inanimate things. I still need to move around and moving around is a risk. Sad, but true. “They will make your life easier” they say. Easier. Maybe, but it is not always practical. I still need to move around. I still need my independence. And that is what this is really all about. Staying independent.
I am super independent, which is super impossible with an illness like MS. I have had to accept help and I have had to be more patient. I am actually proud of my level of patience. Expressing patience doesn’t mean I do not get frustrated. Isn’t frustration what you’re sensing here? I do get very frustrated at times and I do throw tantrums. And many times I just want to scream and cry for long periods of time but honestly, it won’t change the situation. It won’t change the falling. These emotional fits just become an outlet to get the frustration out so I do not wallow in self-pity.
Accepting help and being patient I don’t mind so much. My legs acting like the toddler or puppy that will never grow up and mature, they are the uncooperative things that dictate what I can and cannot do. I DO NOT LIKE IT.
We moved out of state recently and naturally, have met several new folks around town. I find myself being self-conscious about my disability, which is completely ridiculous (but also natural). So because of this temporary self-doubt I find myself “explaining” my disability. “I haven’t always been like this”, “I used to be a runner”, “I used to wear high heels”, “I loved hiking and adventures”. What am I doing! What do any of those things matter? Because I want to still be that person? Because I am attached to those things? Of course, but the truth is, those things are in the past, that person is in the past. Long gone. Just like a great vacation or a bad relationship. The disability may have taken those things from me because I labeled it that way, but without the disability I wouldn’t have discovered many other awesome things and new adventures that have brought joy into my life. And I am still (technically-ish, sort of I guess) independent with a little help from my inanimate things and albeit the occasional fall.
The real truth is, I am a strong person. I was “then” and I am now. Sometimes we are dealt things in life that we didn’t ask for. Kind of like a real card game. You get some good cards and you get some bad ones. Some you can discard, some you are stuck with. This article was written with love, with frustration, and also with compassion. I like to think that when someone tells you about their troubles it is not to highlight what they can’t do. Thank yourself everyday, thank your body and mind for all the good things it does to keep pushing you forward. We all struggle. On the inside, on the outside, we all struggle. And as much as I want to break up with my legs, I know the real answer is continuing to find ways to work together. One of my favorite quotes is by Dr. Wayne Dyer, “Peace is living life as it is and not as you think it should be.” Drop mic.
What I am going to dump is this lousy attitude and self-doubt. They are the ones that have to go. And with that, I have put on my big girl pants and I am ready to re-embrace life. I tried to tell myself it was OK to be pissed off. And for about 5 minutes, that felt good and I thought, YEAH!, this is the way to go. But then loathing set in and I didn’t do well with that so I decided to stick with my mantra: focus on what you can do instead of what you can’t. This, my friends, will lead to happiness.
So Legs, I forgive you (for now). Turns out it wasn’t you, it was me.
And Friends, I promise to get back to recipes and all good things nutrition & health & finance & fun. I am sitting here devouring a bowl of homemade butternut squash soup I have been dying to share. Happy new year!
This, and you, are awesome.
You continue to amaze me and so many others. Fantastic article. Incredible perspective. Your family is SO blessed to have you xoK
Hi Jodi, you certainly have your priorities in order over this extremely difficult disease. I am in awe of your attitude. Miss you, Ann
I sat at a table with you at Beckie Cox Miles bridal shower. I didn’t know you had ms. Just that you were a very pretty, thoughtful and sweet person It wasn’t until you got up and walked away using a cane that I realized.
I love your blog. You’re an inspiration
I just found this blog after reading your story about your scooter Bumblebee (I love the name) in the winter Momentum. 😊
I was diagnosed with MS in 2006 and have been struggling with my walking. I am currently using a walker and still struggle with it. I find myself explaining to people too about how active I was and all the things I used to do. I never quite understood why I did this. I hate that I do it but I still do it. My husband keeps on telling me to not live in the past. But I’m thinking that even though it’s been 13 years and I’ve tried to accept how my life has changed, I haven’t. I still fight it. When I go out I will sometimes use my cane instead of my walker because I’m self-conscious. I hate feeling that way too. It’s all lead me to being very down on myself instead of giving myself credit for what I can do. I guess I’m just saying that I appreciate finding your blog and reading someone actually feels the same way I do.
I’m hoping in this coming year I can accept myself as I am now and think more positively. I think I’m just so afraid of the what if‘s and what can happen that I live in fear all the time and that’s no way to live. So thank you, I will continue to follow your blog. You are very inspirational and I appreciate your honesty.
Stay well…. Linda
Hi Jodi,
I’m in the market for a scooter and I read your article in Momentum. Could you please tell me the name of the scooters you have purchased, both the 3 wheel and 4 wheel. I want to used it mainly outside at fairs,art sales,farmers markets,ect., and was wondering which type seemed more stable. Also, I’m 5feet 10inches, and I’m not sure I would fit on the one that is shown. Any information would be appreciated. Also, I don’t think medicare pays anything unless I would need it in the home, is that correct?
Thanks, Sue Kreibich
You are an inspiration
I have MS and you explain how I am feeling to a tee!!!
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