by Lori Brant
There were two ways to walk with my walker down the hallway to my condo. The first way kind of went like this:
“Man, I am tired. It has been such a long day.” I hate having to concentrate on each and every step. I can’t stand making sure I’m taking my time, lifting my foot placing it securely in front of me and regaining my balance each time while I fiercely grip the handles of my walker.
My stressful thoughts are jumping in, between each next step.
In my mind, I imagine people looking, wondering what is wrong with me and how grateful they are that they are not me.
These thoughts keep jamming their way into my head.
I want to be the woman that walks.
I want you, to feel comfortable when you meet me, to see ME and not the walker.
I want to be a powerful mother, the vivacious, outgoing friend.
I want everything to change. My body, this disease, my stress, my relationships, other people.
Or, the second way I could walk with my walker down the hallway to my condo could go like this:
I notice my body, how it feels. I’m so grateful for all that it did today, and I will sit down when I get home so it can rest.
This walker is amazing. It supports my movement forward, helps me balance, carries my purse and rolls along so easily on the carpet.
Mmmm. I smell Italian. Somebody must be cookin’ up a storm behind one of these numbered doors.
The crystal wall scones cast the gentlest light, leading me home.
I notice the warmth from my winter coat. What a great coat.
My thoughts are flowing in and out. How marvelous to be this woman, walking, supported down the hallway, warm and walking.
And then it happens.
My toe catches the rug, creating enough resistance for me to lose my balance and fall forward, my upper body hovering over the top of the walker and my hands desperately holding on, sandwiched between the handles of the walker and the weight of body pressing down on them.
I don’t have the strength to straighten myself up.
Here I thought I was going to walk down the hallway and enter my condo like I usually do but instead, this. Wow. Who knew? What an adventure.
There were two ways to walk down the hallway, but now, there is a third! This third way was to only walk part way.
Right now, I’m this. A woman bent over, hugging a walker in a hallway with no one around.
Now what?
I make a fruitless attempt to straighten. That’s not happening.
I consider my options. I glance ahead at my condo door five feet ahead. Even if I shimmy over there, I won’t be able to release the grip on the walker to turn the door knob. That won’t work.
I could fall to the ground and try to open the door that way, but I’m afraid I won’t be able to reach up to the knob.
I can’t believe this is happening to me. This is so embarrassing.
I hear the faint dinging of my neighbor’s dog tag. Maybe, if I can get close enough, I can knock the top of my head on his door and see if he can help me straighten up.
I don’t want this.
I want to be the woman who walks, the woman I was, the woman you knew, the woman you hoped I’d be. Anything but the woman bent over, hugging a walker in a hallway with no one around.
I’ve now managed to get close enough to my neighbor’s unit and I rock slightly so that the top of my head gently taps his door. Their dog barks, and I’m relieved, he heard me.
But no one comes.
I suddenly realize that they probably did come, but looked out the peep hole and didn’t see anyone because I was bent over out of view. I can’t help but chuckle.
Is this really happening?
So, I gently tap my head against the door again. The dog barks.
This time my neighbor answers, while I’m staring at slippered feet imagining his shocked and confused expression as he takes in what’s before him. A woman bent over, hugging a walker in the hallway.
“Can you help me straighten up?” I asked. And he did.
That’s it. I’m done. This is not working for me. I need to do something different.
I’m getting a wheelchair.
I don’t care that you think I should keep walking, that I don’t meet your projections of who you think I am or what I should be doing. I don’t care that my brain is yelling at me to not do it, what will people think, your life will be over…..
I am going to let go of the woman who walks, the woman I was, the woman you knew, the woman you hoped I’d be, the woman I hoped I’d be, and embrace and love this woman, just as she is, right here, right now . I’m going to love her all over, all of her, just as she is and choose to do whatever it takes to nurture and support her.
I got a wheelchair. (Mind blown hand action and sound) OMG. My whole world opened up. I could do what I wanted to do, go where I wanted to go. I no longer had to worry about falling, tripping, or getting tired.
All this mental space opened up. Instead of processing all these thoughts up here in my head, I could now tune into what was happening out here, around me and in me. I became intimately engaged with life.
What I had projected to be the worst possible thing that could happen, being bent over a walker, banging the top of my head-on neighbor’s door, turned out to be the best possible thing that could happen. Because, just like my neighbor looking out the peep hole at a narrow view of all that was outside his door, I too had a narrow view of what was possible for me if I couldn’t walk like everyone else.
It made me realize I had a choice. I could move through life, holding on for dear life, fearful of every step, bracing for impact OR, I could consider how what was happening, should be happening. That it’s FOR me. An opportunity to grow and expand so I could be the powerful, vivacious, outgoing, free spirited woman I was meant to be.
I recalibrated my future of what was possible, by opening up to alternate possibilities of how to take my next step.
I considered that my life was going to be so amazing, so magnificent, so out of this world, beyond anything I could ever dream possible…that, in order for me take it all in and get ready for it…the Universe was saying, “Girlfriend, you better sit down for this.”
Phyllis Hastings says
Hello I have Limb girdle Muscluar dystrophy left side weak and I am deaf 62 I use walk long stick cane when I fell I can’t get up it hard for me called for help most time txt phone with me but sometime forget left house I do very careful myself !! Sometime my mind think fell back or bend over !
Linda Flower says
Thank you for sharing your story Lori. I have FSHD which is now impacting me in the way you described.
I’m a single 62 old women and was diagnosed in 2013. My husband left me in 2016 after 38 years of marriage when my symptoms progressed. He didn’t want to be stuck as a carer. He “still had plenty of things HE wanted to do”. Thank goodness for my wonderful boys and family.
Walking with a walker is a chore once you have deteriorated to a certain point. Both mentally and physically. Most people are unaware of this or can’t comprehend why it is so draining.
I’m finding I’m withdrawing more and more as it all goes in the too hard basket, not only by me but friends too.
I realise that in the not too distant future I will have to consider a wheelchair and thought it would hamper me even more. Reading your experience has given me a new outlook for which I’m very grateful.
Thank you.
Lindy
Leroy says
Thanks Lori, I think the natural urge is to fight on, no matter how difficult the challenge.
I’m glad that you gained a new freedom and a new way of viewing yourself.
It really doesn’t matter what that imaginary stranger thinks when they see you, we are but a moment in time on a speck of dirt floating in infinite nothingness… what a stranger thinks of us doesn’t amount to much.
We can only do the best we can with what we have. Keep on rolling!
Amy B says
What an amazing testimony to your indomitable spirit. I will cherish this piece. Thank you for sharing.
Roxy says
It’s like you read my diary! What a great, positive way to live, Lori. Thank you so much for sharing this. I felt the same when I got my wheelchair but now I have to figure out how to deal with moms yanking their kids out of the way when I’m 10 feet away from them, or just the stares and idiotic “Wanna race?” comments. 🙂
I’m keep this story in my pocket.
Allen Carney says
What a beautiful piece of writing Lori! Thank you! It has given me a new perspective on my own future. As my legs weaken I can see a wheelchair in my future and your insight gives me a new (and better) perspective on what’s to come. Thanks again.
Mireille Greveling says
Hi Lori
I was so inspired by your article and thank you for sharing your difficulties and overcoming the obstacles that you face on a daily basis, in the best way possible. It certainly is an ongoing process of embracing what we have been given and to swallow our pride with dignity and acceptance. Enjoy your new-found mobility:)