A Quick Trip

Hi, welcome! I’m glad you stopped by! I just wanted to run in to see if I could find a pair of tennis shoes. Just a quick trip in and out and I’d be on my way. This was over 20 years ago when I didn’t have to give as much thought to a quick trip into a store. I didn’t have to worry about if there was a curb to get up onto, or if I may just sporadically lose my balance. Don’t get me wrong, walking was difficult, but not nearly as much so as it is today. It happened quickly after I arrived. Someone left a shoebox on the ground and I didn’t see it. I tripped and fell. Ugh. I managed to pull myself up from the ground using the shelves in the store. I had just barely pulled myself up and started towards the door to get the heck out of there when I heard, “oh my gosh are you ok?” Yes, I assured the gentleman working at the store, “I am fine” followed by a smile which was my go to response when I wanted to be swallowed up by the ground out of embarrassment. He persisted, “you don’t look fine, you look like you got hurt when you fell. You are limping!” (to which I wanted to say, “oh am I, I hadn’t noticed!”) I launched into the saga which is my life story haha, and assured him I was ok. I wasn’t hurt other than my pride. He wasn’t buying it. I had to go back to his office, and give an official statement for the record that I was not hurt after falling in their store. I was 20 some years old. I didn’t know what to do. I just wanted to leave. This interrogation on top of my already humiliated ego was beyond painful.

At the time, I didn’t have the tools to say a simple, “I have a disability called Muscular Dystrophy.” I didn’t have a name for my disability at that time, so I never really quite knew what to say. Whenever I would tell people “I have an unidentified neuromuscular disease they would look at me like I had three heads, so I usually avoided that sentence. 

That experience scarred me. It was traumatic. I talk a lot about my physical scars, but somehow the mental scars feel harder to put into words, and are far more painful to talk about. 

My son Luke and I had gone to Hobby Lobby to pick out some supplies for a school project. It was a busy Saturday afternoon. Luke was in middle school at the time. I was pushing a cart, which is always helpful because it gives me a sense of security that I won’t fall, or at least it used to. Out of nowhere my toe caught on the waxy floor of good old Hobby Lobby (honestly still love that place, and even ventured in this weekend to get more paint for upcoming paintings 😊) I went down HARD on my knee. Luke screamed, “mom!” It shocked him. I was in shock from the searing pain in my knee, one I was all too familiar with after a fall. I could barely breathe it hurt so bad. Instantly, I panicked and I was back in the office of the shoe store being interrogated. I didn’t want a replay of that. I was trying not to throw up from the pain, reassure my son that I was going to be ok, and also trying not be pissed about the people just walking by us not offering to help. Luke was not yet big enough to be able to get me off the ground. I was in a main aisle, so I somehow scooted into a less busy aisle and gathered myself. I had to get out of there. It took everything I had in me to get off that floor. By the grace of God, I did. Somehow, I made it to the car. I tried my very best not to lose it in front of my son once in the car. I wasn’t successful. Again, a traumatic situation. I’m sure this story leaves many wanting to ask why I didn’t do this or that. I don’t have any answers for why I didn’t have Luke go get help or any other logical solutions, other than I was operating from a place of past traumas. 

I could go on and on about stories like that. Not the worst thing that could happen to a person, but it certainly isn't somewhere I go for warm fuzzy memories. In fact, those incidences haunt me. It’s a regular fear that I have to talk myself through. It can be incredibly difficult to regain your confidence after these types of situations.

Each time, before I go into a store alone, I sit in my car giving myself an internal pep talk. Some recurring thoughts that go through my mind before I even get out of the car are…am I going to trip, how many steps before I can get to a cart, what if I lose my balance, what if I fall in the road and someone doesn’t see me in time before they hit me, is there a curb, if so, is there something I can grab onto to get on it, is there a ramp because those are hard for me to walk up too, is someone going to yell at me or give me a dirty look for parking in an accessible spot, because that happens too, is it too windy because if it is it’s not safe for me to go in, is the pavement slick, if it’s raining will I slip once inside the store from a wet spot? In a matter of seconds all of these thoughts go through my mind. I don’t tell this because I want to sound crazy. If you don’t live this life, you probably do think that sounds neurotic and crazy. I can assure you they are all very valid concerns, and I want to illustrate how physical disabilities can be so mentally difficult too.

Each time I successfully complete a trip to the store alone, it gives me confidence. I NEED that confidence to keep walking. It’s essential. If I don’t have it, I don’t walk. I’d be too afraid. It’s SO HARD to walk, and everyday it seems harder. I’m not giving up on it.  I’m so so grateful I can.

Just last week, I met with a new functional medicine doctor. She saw my cane and looked at me and said, “you walked all the way up here?” (For some reason, whoever designed the building thought it would be a good idea to put the neurology department in the furthest possible location from the parking garage. It’s a long hike!) I told her that I had been thinking about that walk for two days, mentally preparing for it. She said, “I bet you have!” She said she also knew how mentally exhausting that was for me to get up there, as well as physical of course. Gosh, it felt so good to feel validated and understood. I could have cried. She then shared with me a secret back elevator, which was a lifesaver in getting back to my car. 😊

Sharing this took more humble courage than I thought I had. These are extremely raw and painful memories for me. My stomach is in knots from writing this blog post. I felt compelled to share because I know there are others going through the same thing. I know my body and the mechanics of it inside and out. I am forced to think about them every step I take. I may come to a place where I no longer feel safe walking, and will have to make decisions at that time. I’m not there yet. If you are, that’s ok. You tried, you did everything you could, and of course these decisions are often out of our control. A new way of adapting may be around the corner. Time will tell. Until then, I will carry on. 💚

P.S. If you haven’t heard, my husband and I are running in the Boston Marathon on Monday! Come back next week to see how it goes!