Tiny Salutations

Tiny Salutations


Monday, January 9, 2017


I have been silent for far too long- over two months. This silence has been due to depression, stress, and exhaustion. Depression is the main culprit, although all of those factors feed into each other. My depression made it difficult to translate how I felt into words, and as time passed, it became more and more difficult to do so. But this silence has gone on for far too long, and now is the time to end that silence. Before I can share updates and catch up for lost time and share dreams and plans.... I need to address that silence, that depression.

I have been under monumental amounts of stress these past few months. I feel like my entire life is balanced on a series of pillars, and it is my job, and mine alone, to make sure that those pillars stay upright. During calm times, it is easier to manage, because only one pillar will threaten to fall at a time. But lately, it's as if all of those pillars threaten to collapse at once, and I simply don't have enough hands to pick them all back up at the same time. I have to fight just to provide my family with the basics to survive. I am literally fighting for our lives, for life-saving medical necessities. And I have to fight hard. I have to fight for medications and equipment and services and programs. Then, add on top of that family drama (I am a very sensitive person and don't do all that well with conflict), feeling unwelcome, and feeling insecure in our future. 

Dealing with long-term illness has made me feel some things for the first time. It has made me feel out of control of my own life. I am not in charge. My son's and my illnesses shape our lives. Illness has made me feel stagnant and yet somehow also moving downward. It is difficult to make any plans, because inevitably, some aspect of being disabled works its way in as a roadblock. Chronic illness has entirely consumed our life in a way that would be difficult for anyone else to understand. The most common roadblocks are..... poverty (which comes from being unable to work, but also from the necessity of poverty in order to keep health insurance), time (we have appointments, usually, every weekday), sensory overload (which means avoidance of so many things to help my son with autism to be able to stay calm rather than aggressive and non-communicative), weak respiratory systems (which means avoidance of anyone with a potential virus and places where people are most likely to still go with a 'cold'), and inaccessibility (the inability to go anywhere that a wheelchair cannot travel). These are the most common for examples, but there are, of course, many more. I have always been someone who is excited to make plans and goals and challenge myself. Adventure is at the very heart of who I am. But these roadblocks, having come up over and over, have over time made making goals and plans feel futile. Without being able to change many aspects of our life, being 'stuck' in areas that I am not satisfied with, and being unable to make goals has created this feeling of being stagnant, of never moving forward, never being able to be in control of moving our lives in the direction we would like. Hopelessness has been a prevalent feeling in our lives for some time now. I have been trying hard to give the control over to God and to try to listen more closely and hear what He has in store for me and to try to listen, to make that effort. But it is so hard for someone like me, who has always been in control, or at least felt in control.

Another feeling that has surprised me lately is…. anger. I have always hated anger. Nothing good ever seems to come of it. But lately I have been feeling a fiery anger for some individuals who seem to be so incapable of putting themselves in my shoes. These people seem so far removed from my reality that nothing I say or do is going to make that connection. Even more hurtful is when these people are not just unable, but unwilling to put themselves in my shoes. This has been a painful part of my journey lately.

BUT…. Just as I have felt fiery anger, I have felt bright and shining love. If I had never gotten sick, I may not have known how much some people truly love me. I have two best friends who I know now would do just about anything for me. They are both beautiful shiny people in my life, and I consider myself very lucky. I have other friends that have recently checked on me, not hearing anything from me for some time. I have an amazing husband that is my love, my best friend, my care taker. I have a son that, while he can frustrate the heck out of me, truly loves me. So it has really surprised me both how intensely I have felt angry lately, but also how deeply I have felt love. I never felt before that love was truly unconditional.

I have been thinking a lot about what I want to do with the coming year. I want to listen closely to God's plans for me and make them my own. I hope that this year will be one of which I can feel proud, of action and of hope, rather than hopelessness. I have many plans and ideas, some fully formed and others whispers. Many of these plans I would like to share with you! The first of which is a photo series which I will post the first of very soon!