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How I'm Expressing Love as My Illness Progresses

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As anyone who has a chronic disease knows, it takes a huge toll on our body. And though the disease itself may not be considered deadly, many of the effects of each individual disease are. Consider how many autoimmune diseases affect the kidneys, heart, or lungs. Most of the time, those of us diagnosed don’t think of this too often, in my opinion. We know about it, we just don’t think about it.

But recently, a situation came up in one of my support groups that made me not only think about the major effects of my disease, but also the ways in which I might possibly handle these in the future.

You see, someone in that group is waiting to die. I do not know this person personally, but their posts have provided comfort and serenity in their gentle nature and wisdom through the years. Now, this person has no treatment options left and the end could come at any time. But yet again, it is the wisdom and grace of this person and their response to their own situation has taught me much about love and dying in the world of chronic illness.

The news came yesterday in a post on our group chat. They outlined the basics of the disease progression and the steps that have already been taken to try to help including clinical trials. But then, the tone changed. This person began to talk about their family and how they felt they were holding their family back and wished for them to go. To move on. In the face of being told there were no life saving options left, they loved their family so much that they were more concerned about their family moving on.

I cried reading that. I honestly don’t know if I would have that same strength in me. I think I would want my husband and my children with me at the end. And I’m not sure I could tell them that it was OK to go and move on, to give them permission to start rebuilding their lives knowing mine was done. Yet I know that I love them, but I do not know if I have the love or the courage that that takes – to face the inevitable alone so your loved ones are shielded from that pain.

Do not get this wrong, this is not a story of giving up. It is a story of acceptance and facing the end with dignity. It is about knowing where you are in life, where you have been and being at peace with both. And isn’t that a great gift to yourself?

We as chronically ill people sometimes forget to live in the moment. We live appointment to appointment, test to test, and flare-up to flare-up. It’s hard sometimes to just be. I totally understand that to just sit and be in the moment opens us up to feel our pain acutely, but just maybe it opens us up to see our priorities. Maybe we will see our lives in a different way and be less focused on the disease and its effects, and more focused on something in our lives that brings us joy, even if we never realized it before.

And it just may be in those moments we can find little bits of peace and the insight needed to move forward. Whatever that may mean for us.

For me, that means deepening my bonds with my husband and kids. I have let my pain and my disease get in the way of those relationships. I can see that. Especially now that I am older and one of my kids has moved out to start his own chapters in life.

It also means I have to invest more in being me. Not that I am being fake or hiding who I am. I just need to find opportunities to express who I am instead of waiting around for the opportunity to do so. So I decluttered the house, got our kitchen utensils updated, and created a kitten rescue room. Now, I don’t feel guilty about resting – things are very neat now with less stuff, I can cook (which I love to do), and be more a part of the volunteering I love with less physicality.

But the biggest effect of the decluttering of 2018 is the fact that it lessened everyone’s stress and has given my family more time to spend together. And being chronically ill, and knowing I have progressed recently, that matters. I may not be strong enough to tell them to go. To tell them I hold them back and they need to move forward. But I am also not at the end of my treatment options. Where I am is in the middle and sick enough to see the reality of my limitations and possible future of needing more assistance than should be expected of them. So I fixed it while I was still able. That is my expression of love.

To my unnamed inspiration: May your upcoming journey be swift and as full of light and compassion as you are. May your family continue to know the love and courage you have shown us all. You will be missed.

Getty Image by dim4ik-69

Originally published: July 11, 2018
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