It’s just another rainy night in Seattle as I sit here on the bed with my headphones and iPad wrapped in some of my favorite blankets. The music has my legs bouncing up and down, while my partner lays beside me sleeping soundly.
In many regards it’s just another day in my life. My seemingly dull suburban roller coaster of a life.
Like most nights my brain is racing. How did I get here? What’s the meaning of all this? Should we get a service dog? A million questions to be analyzed, diagnosed and sorted. I am both scatter brained and extremely thorough, a lethal combination of OCD and neuro-diversity makes me a skilled researcher and collector of largely useless facts.
I say useless, knowing that I have turned my quirkiness into a career as an engineer and bubble buster. Yes, I am the nerd sending the lengthy emails that no one reads.
I spend a lot of time thinking about life. It’s unpredictability. It’s ups and it’s downs.
I have always maintained that we are all just winging it and that no one really knows what they are doing. In the last few days I have also come to the conclusion that life doesn’t really ever get any easier. I think we just become numb to certain things as we develop coping mechanisms for the more challenging aspects of life.
I haven’t writing much about my chronic illness. It’s something that’s ever present in my life. Days where I am not in some way reminded of the fact that I have Multiple Sclerosis are far and few between.
It’s been difficult trying to find my groove since my last major flare and subsequent diagnosis. My body simply isn’t what it was and it changed seemingly over night. It will never be what it once was. The damage I’ve acquired is permanent. While I fully believe that I can have a full life with this disease and it is objectively true that I can “do” far more things than I can not, I still have days where I am not much more than a defeated puddle on the ground trying to figure out how to keep moving forward.
I am still young. In my early 40’s. Retirement is a long ways off still and if I give up there is no real safety net to catch me. At least not in this country. So I gather myself up and somehow find what little energy I can gather to keep keepin’ on.
Fortunately, I have far more good days than bad days. But that isn’t to say that those bad days ever really get any easier. Those fears and financial pressures that exasperate them are very much real and completely reasonable.
It is okay to acknowledge them, but it is not okay for me to be consumed by them. If I have learned anything the past 5-10 years or so is that nothing is set in stone. Our stories are yet to be determined.
I try to plan for the worst and allow myself to analyze those fears and how they might affect our lives should they come to fruition. But I also set time aside to acknowledge the tremendous privilege and fortune I enjoy.
I have a loving partner and family who support and love me against all odds. We have a beautiful home in a wonderful place, are surrounded by great friends and have an adorable pup who fills our lives with silliness and puppy snuggles.
Or as my parters daughter would say: “cute house, cute dog, Whole Foods – you are living the lesbian dream”.
After I was diagnosed I really struggled with the idea of anyone being willing to love me given all of the baggage I bring to the table. My partner has smashed those fears without batting an eye. I can’t tell you how thankful I am to have such an amazing person by my side and how much I appreciate everything she does for me.
Life really is a rollercoaster with countless twists, turns, ups, and downs. The idea of control might be an illusion, but the bonds we build with the people we love are not. Life my not get any easier, but to be surrounded with love certainly makes it a whole lot more enjoyable.
I don’t really know where I am going with all this, so I’ll just end it here. Perhaps I should start a philosophy blog to map my thoughts on happiness, life, and the like – haha. 🤔
Title Photo by Eberhard Grossgasteiger