Cautiously Returning

I was raised to be superstitious. My Mom instilled this in us from a young age, not to talk about things till they were done, not to wear certain things again if bad things happened in them, to wear certain socks if we needed superpowers, to knock on wood and bite our tongues. I live similarly now, never wanting to jinx anything or be the reason something does or doesn't happen.

If I am being fully honest, I haven't written in so long because I started to feel like anytime I did write, someone got sick after. It sounds crazy typing but after publishing my blog post in September 2024, “YES! YES! YES!” - my external "pep talk" about saying yes and living in the moment only to test positive for my second bout of Covid the next day felt like the ultimate jinx from the universe. 

So I have somehow associated my writing a blog post with causing illness to arrive at my home. For those that know me illness is probably one of the largest sources of my anxiety currently because anytime I do get sick I take so many steps backwards. 

That said,  I am quite sure (or maybe just mostly sure) that this blog post won't cause me to get Covid the next day. If I do by some chance get it however, while I rationally know that would have happened regardless, it may just be the end of blogging!

I started this current post in July. I looked at it again in September and here we are almost in December. But it finally feels time. So I am taking a deep breath, and letting myself write ever optimistic I am not causing a curse on my week.

My last post was in early February and I was still in the early days of Flu recovery. The last 9 months have truly been filled with so many ups and downs. There have been scary weeks of feeling worse than I did at my lowest and being reminded of how quickly I can lose everything and also weeks of major wins. I have worked with my medical teams and listened to my body and have been going slowly to let my body heal. With every step forward there are two steps back but that is expected. I am trying to not just stabilize my body but heal my nervous system in hopes if we fix the root of the problem a more permanent recovery is possible. Some days it feels like I will never recover fully and others I can see all the possibilities of a healthier future.

I have a new baseline. It's not what it was a year ago but I am now able to spend an evening at a Broadway show or at the movies with friends. Short flights and two night get-aways are my sweet spot so we still try to take adventures. Cross country flying has not made the list again yet but I hope to be there in the next 6 months. It’s hard to describe feeling some freedom from my body but also feeling fully trapped by it again. I know the healing I am doing now is helping and I am hoping in time I will feel more in control.

Mostly the last nine months have reminded me of how much of a gift the good days are. I had perhaps naively thought that because I had finally found some stability that this would mean I would not ever go as far backwards again. I assumed my body could withstand anything and still quickly recover but I know now that is not a guarantee. This is the challenge of a chronic disease- you live with these for a lifetime. Even though I have come to terms with this many years ago, saying this out lout still makes me shudder- a lifetime— I will never be free of my diseases. They will always be a part of me and will impact all parts of my life. Yes, sometimes that will mean minimal impact and other times it will be like the last year I lived -ever present in nearly every hour of my day.

Thankfully though, my good days are once again starting to outnumber the harder ones and I appreciate the simple moments most. I am grateful for every dinner I am able to eat without a reaction and every morning I wake up without feeling lightheaded. I am mindful of all the moments of joy I share with family and friends- being able to walk myself to the Flag Football field and cheer on my son’s team on Saturday’s or dance and be silly in my kitchen on a normal Monday night with my family. None of this healing would be possible without the support of my family and friends. From driving me places when it was not safe to go alone, to coming over to be with me while I add a new supplement just in case I react, to making sure their homes are safe so I can be included in a group meal and regular text check ins from so many. It is not lost on me how lucky I am to have such a strong support system that has helped carry me through the harder days.

So on this eve of Thanksgiving week, I am present and so grateful for the good and simple joys in my life, for the healing that I have had these last nine months ensuring the healthier tomorrows I know that await me, and for the love and support I feel from so many.

“She held her life up to the light and it struck her how beautiful it was even with the threads of dark woven through it and if she cried easily after that it was only because she understood at last this is what she is making with the life she has.” ~ Flying Edna/Brian Andreas