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Adjusting to a 'New Normal' Is Not Novel to Me As a Rare Disease Warrior

It’s hard not to start feeling hopeless right now. Summer will arrive soon and we still find ourselves in the midst of the pandemic. It feels like we are waiting for life to return to our normal. However, if we are honest with ourselves, our reality will never be the same — so waiting for its return is becoming particularly frustrating.

As we all watch the world slowly re-open, it feels impossible to know how to move forward in our new reality. So much has changed, but somehow it feels like nothing has at all — we still do not have vaccines or definitive treatment options, but there are now hospital beds and ventilators when people get sick. This makes it hard to feel any level of comfort that we can be truly safe until we have a vaccine. Hundreds still are dying each day. But is this paused life sustainable?

While I know my re-entry may be much further away than others, I know it will be equally scary for us all whenever it may happen. We all still must find a way to balance our safety with finding ways to live life again with others.

I’m used to having chronic rare diseases that daily require me to practice the balancing act of deciding which things will push my mast cells over the edge and what I can get away with. It’s my own constant risk assessment to decide when I need to be safe or if I can just live life.

There is no denying that watching my mom spiral and ultimately die from the fall from her own tight rope forever changed me in many ways, but especially as a rare disease warrior. Already being a somewhat more cautious person, my own fear of similarly falling was overwhelming at first. Of course, how could it not be?

I was in constant battle with myself trying to decide what was safe to do and what was not, and what would make me worse or what could push me towards healing. In time, I slowly found my way. I found practitioners I trusted who could be both my guide and my cheerleaders. They supported me as I took steps that scared me but ultimately propelled me forward. They also caught me in the times I would inevitably fall backwards. But I also learned to trust myself — to know when I can push myself and when I can’t. I’ve ensured I have the tools I need to help me through when small slips happen.

More recently, as I began to be able to do more, I realized there was perhaps a more important balancing act I needed to focus on: that we must balance the harder moments with good moments or risk losing the feeling of living.

For it is in those hardest moments that either the past memories of adventure or the future plans for fun carry us through.

I have only recently accepted that my diseases won’t be leaving me; a cure is unlikely. Yes, I can continue to work to improve, but whatever “normal” I lived years ago will never be achieved. While to some this may seem like an upsetting realization, for me it was truly a relief.

For so many years I was waiting for a cure to more “fully” live my life, but when I accepted I would carry my diseases with me forever, it almost gave me permission to live more freely. Of course, daily, I will still feel symptoms. I can never stop pushing myself forward toward better health, but my goal for 2020 wasn’t to cure myself. It was to live better. It was to live more fully with these diseases and to find my own way to be among the living. Something that is no longer possible in our great pause.

I have been angry all week feeling that all of my progress forward is falling away and that I will never leave my safe bubble. What I have only just realized is that similar to my no longer waiting for a cure — pausing until life is “normal” again to make steps forward and live life — will never happen if our “normal” never returns. This is the challenge we all face: how to move forward and stop waiting for our “normal” to come back. Or for those who still do not realize it is gone, to start accepting a new version of it.

Even if they are small moments, we must find ways to live now, with safety as a top priority. We have to trust that in time, these moments will only get bigger. I know for sure that life is what we make of it. While there will be times in the coming months that will feel scary to us all, we must not give up on trying to balance this fear with finding things to look forward to, new ways to be with each other, and most importantly, to feel alive together. It is these moments that will propel us all forward and will carry us through whatever challenges we may face.