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It can be hard to “live my truth.” Just because I have had a revelation or realization does not mean I can instantly incorporate it into my lifestyle.
Especially because my hope just got a kick in the teeth. The latest bump in my pump did not work. This means more time on oral baclofen, which, remember, is heavily sedating. Being sedated is different than being fatigued because I can’t fight it. Chemicals overtake my body and my will. They rush through me, making me heavy, blurring my thoughts. I take baclofen four times a day. It knocks me out for two hours. Being unconscious so much hurts my mental health, relationships, writing, and hope.
I say “being unconscious” because being sedated isn’t always the same as sleep. I sometimes wake up fully rested, ready for an hour of activity before it’s time to pass out again. However, sometimes I wake up feeling like I have only been out a second. It’s disorienting to say the least.
Everyone, from caregivers to family, is overjoyed when I am awake, and they all want to see me. I should be flattered and feel loved. Instead, I feel pressured. Imagine if, as soon as you wake up, whoever is near you is full of energy and ready to play. When I wake up, all I want is a few minutes to myself to check my email, catch up with Evan, maybe send a few texts – all the things you do to slowly come back to the world in the morning. Because it is perpetually morning for me. In an ideal world, whoever finds me awake would express their joy, then ask if I need a few minutes. I think that would help reduce the pressure I feel and make me ready to fight through my discomfort like I decided to in my last post in order to be present for the people who love me.
I’m beginning to fear I will always need the baclofen, that the pump will never work. I honestly don’t know how much longer I can handle this. Choosing hope is harder with each failed bump.
But I know I will go on because I have no other choice. I have up to three years before my lungs fail, and even if I live like this, the time I steal with Evan makes any amount of suffering worthwhile.
How I Live Now: Life With ALS 
Rachel, I found your latest post very moving. I want you to know you are not an object of pity even though you are dealing with some pretty tough issues. My late husband Rasjad Lints, passed from ALS in January 2016. He had some of the same issues and pain you are describing and took a lot of medication to control those symptoms. His bottom line for living was being able to communicate. He was willing to deal with all of it as long as he was not locked in. When he could not use the eye gaze and all other avenues exhausted he chose death with dignity to end his life. It was not because of pain though, it was because he was losing his ability to communicate. Communication gives our lives meaning and what you share with all of us makes us stop and think about whats really important in our lives. Your life is relevant and meaningful. Blessings to you and your family
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