Hello and welcome! Glad you stopped by! When one sets out to climb a mountain, the goal is to ascend to the top, take in the view and then start the descent back to the bottom on safer ground. What happens when you are stuck living in the ascending state and you never reach the summit? It’s not from lack of trying, but rather from big objects standing in the way. Sometimes in the form of a disability.
What if you stop and take a look around in the middle of the ascent? There is beauty there too. Not only at the top of the mountain, but in the journey there too. You have to try so hard to see it clearly. Maybe you’ve even reached the summit mentally only to be reminded your physical body isn’t getting there anytime soon no matter what you do. That’s a maddening thing when the two don’t match up.
Maybe you start the negative and self-blaming talk. You think, hmmmm maybe if I just ignore this it won’t hold me back? Incorrect. Maybe if I work harder I can get there? Incorrect. Maybe if I wore a different shoe, or brace or had been more diligent about my PT exercises all these years? Incorrect. Maybe if I eat a certain food or take just the right combination of supplements? Nope.
Sometimes, there is just nothing you can do to reach the summit. It’s time to regroup and you likely will have to regroup over and over again because living with a disease that has no cure or end in sight is grueling on the mind and the body.
Growing up, I didn’t have to think about the word progressive because I didn’t know that my disease was progressive in nature. I didn’t have a diagnosis for so long, and I was dealing with the other difficult mind game of the unknown. I guess looking back it is easy to see that it was progressive, as I lost my ability to do certain things I once could do along the way. Now that I’ve been diagnosed, and I know for sure that my disease is slowly progressive in nature, that has changed my focus. Now I’m fighting a beast with a name and that feels very personal. To be battling against yourself is in many ways is a strange thing. We are told to love ourselves and be confident in who we are. Ok, I’m sorta there. More than I’ve ever been, but also I despise this disease that’s taking precious life qualities from me. So, do I hate a part of myself? I guess so. Ouch. But, as I’ve written before, there have been beautiful things that have come from Muscular Dystrophy. So, I guess it’s a love/hate relationship.
Most recently. I’ve been dealing with some “new” concerning symptoms. Up until now, I’ve been fortunate that the progression is slow. I mean, when you hear progressive disease it’s not like you are told that, and then there is a timeline for exactly what that looks like. You’re left to dwell in the mystery of what’s going to happen next. I didn’t really think I’d wake up and my left leg would feel like it had lost 50% of the little power it has to begin with, but I did. There’s no time to mourn the loss of these things either because you are immediately thrust into a panicked state of trying to figure out how to do life in this “new” way. Maybe it’s temporary, who knows? So far, it’s still with me. It sucks. It’s frightening and makes me very sad. Feels lonely again. Like I mentioned above, I guess it’s time to regroup so I can catch a view of the beauty in the new place. Recently, I was back in the ER for several hours with the conclusion being that I’m an “interesting” patient. That stung. I don’t want to be back there. I thought I had made progress by getting a diagnosis.
There is also the possibility that this is something completely new my neurologist told me when I followed up with him. I thought, no my brain can’t handle that! That would just be unfair. Ha, sometimes I laugh at my gullible self. Life isn’t fair I remembered. We all know that to be true.
A few days ago, I received my first manual custom wheelchair. My emotions were like a tornado in my brain. Since I was a young girl, I’ve wondered when/if this day came, what it would look like? I have my scooter for outdoor use mostly, but I needed something for indoors that I can use and get close to counters etc. Plus, I want to use my arms and keep the strength up as much as possible. This feels different. It’s made just for me. There were lots of tears. There was loneliness. There was also the awe of the silver lining in the delivery of this when my leg is giving me so many issues. I need to preserve my energy and keep myself safe, my friend gently reminded me. This is my answer. I ordered this 4 months ago. I had a nudge that I needed to do this. The fact that the timing hit this way doesn’t seem coincidental to me. The fact that my son was home from college to be with me as this was delivered was so comforting. He kept it light and positive. As I took a seat for the first time in my new wheelchair, it felt comforting. Like a hug. 49 years I’ve been blessed with my two weakened legs holding me up. A lot of times they still do, and I’m so grateful. This is me, humbly courageously, accepting help. This is me accepting the new challenge of learning how to do life in a different way at times. I do love a good challenge. 💚
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