I’ve posted a lot about being independent and living life to the fullest, but in reality, we can not ignore the fact that SMA is a progressive, muscle wasting disease. Recently, members of my chosen family realized that I am prone to progression. Some of them truly didn’t understand that with SMA, you just keep getting weaker. You lose the ability to move a certain way or a certain body part and there is nothing you can do to stop that.

Some of them were very angry, at SMA, at fate, at my luck and couldn’t imagine how I was so calm about all of it – how I wasn’t flipping out, demanding a cure, or that I didn’t even agree with cure mentality – that I was just out living my life, and I am okay with the person I am, as I am. The truth is, I already had those moments, and I’ve moved on to greener pastures.

swimming clown fish

Just Keep Swimming!
What a lot of people do not realize is that I’ve had years to get used to my disability. I’m not sitting idly and waiting to die. Sadly, I’ve seen people with SMA, Duchenne or other NMDS (neuromuscular diseases) who are doing just that. I am out living my life. I live life with the idea that every single person on this planet can die tomorrow.I’m not alone in that, so I’m not going to live life like I am dying (we’re all living to die, right now). I’m going to live life like I’m living!

All we can do is take it one day at a time. We may live to be old men or old women, or we may die young. There is NO SET STANDARD for when someone with SMA dies, so why live like it is going to happen tomorrow? Keep dreaming of that future and never give up! We all need something to look forward to and I find having realistic dreams and goals keeps my healthier than if I obsess about my health and well being. The power of positive thinking is real. I just know that when it is our time to go, whether with SMA or not, we will pass on into whatever existence or lack thereof in which you believe.

woman with tissue box, crying

It’s Okay to Get Angry
Anger is a normal, healthy part of life, so long as it does not overtake your life. What I mean is that it is okay to be mad, angry, frustrated, and sad, because the world sometimes sucks. We live in a highly inaccessible world, for people with disabilities. It can get exhausting fighting for change and for justice. It’s okay to be frustrated, but we cannot let these feelings overtake our lives. If we do, we become bitter. We hate ourselves. We hate our disability. We sometimes even think suicide sounds pretty good because life is no longer worth living. Nobody needs to go through that. Yes, lack of access sucks, but life can be beautiful. We CAN adapt, and we can LIVE productive lives, no matter how long they are!

I know some parents who have kids with SMA, who are so obsessed with finding a cure, they do not realize that damaging message they are sending their children. This really does affect these kids’ self esteem. It’s okay to want to find treatments to help them with functionality and even strength and independence, but telling them they need a cure implies they are broken and need fixing. Your child is functional in their OWN way! With the right assistive technology, they can flourish! Yes, treatments would be GREAT, but these kids have often started acting out. They have anger about their disability. Some of them hate themselves and their wheelchairs. They look to their parents to hear everything is okay and instead all they hear is “we need to fix you!”

We have no idea when treatments will be available. So why build up their hope? Jerry Lewis built up generations of kids on the hope of a “cure”. We were promised a cure, but it never came. We had to move on and live our lives. We cannot live our lives waiting for a cure, and your child should not have to do that, either. Their wheelchair should be seen as a tool to independence, not a feared or hated device. I live my life with the idea a treatment would be great, but if that never happens I will be okay. I will get through it. Your child can get through it, too!

Death is a natural part of living. We just cannot live to die, but we must be realistic. Some people with SMA will die, but assistive technology and access to resources will help us live longer more successful lives, no matter if we have any treatment in our lifetime or not. So, live each day to the fullest, and your live will be rich and full of purpose, SMA or not. Oh, and fight for more access to assistive technology, because it’s bringing more quality to our lives no matter our level of disability.

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