“We’re in this together” and “these challenging times” are two phrases that kind of make me cringe. I may sound like an a-hole, but what I want to say is coming from a good place…

Ever since I was diagnosed with FA (10 years ago), life has been challenging. I don’t want to overstep and put words in others mouth that have a disease/disability/life-changing illness, but I bet some of you can relate to this…

I’ve overcome many obstacles and challenges; but with FA, they don’t vanish when you overcome them. You don’t get a gold medal for achieving them. You put in so much work, to just relieve some back pain to get a good nights rest. Then the challenges reset and you have to overcome them AGAIN and it may get harder and harder each time.

It’s challenging ALL THE TIME —with or without Corona.

Having freedom taken away like we all are experiencing right now, isn’t all that new to me. I’ve been stripped of some things before Corona, and will continue to be stripped of them, after. Tweaking things and being creative at home, again, is nothing new to me.

Letting go of your career even though you didn’t want to…yep, been there. Dealing with financial distress—bills, groceries, hobbies, kids…welcome to my life way before this virus. Pulling your hair out dealing with the government, filling out applications, being a needle in the haystack, waiting waiting waiting for financial assistance…I have dealt with this for years every few months and will continue to deal with this…this is unfortunately, my norm. Being told “no” or “you’re not the candidate we’re looking for” or “I’m sorry” are words I always hear, nothing new here. Having to redirect your kid(s) in doing activities with you and staying home….it’s not always easy, trust me, I get it! Because of my limitations of “running” around with Eli, I’ve always taken what I can do with him, hugely into account: drawing together, playing board games, storytelling, reading, watching movies together, being by his side when he plays sports in the backyard, teaching cooking skills, talking about real life shit…

I mean, if I (and others) do this on the regular, like, all of this, then why NOW are “we in this together?” It took a virus for people to say this? Why couldn’t we be in challenges together before? I bet this slogan will not hold after Corona—Why will we not be in this together when the nation [after COVID-19] will still have many cancer sufferers and deaths? Many untreatable diseases and disabilities? Addiction? Diabetes? Heart disease? Suicide? The list can go on…but here’s a small list of huge issues in the world. Healthcare workers and first responders and all those working their tails off to save lives (COVID or another problem) should ALWAYS be appreciated and applauded.

And I don’t mean a donation of money here and there to these organizations, which is always a nice gesture, but I mean the blood, sweat and tears of really being in this together. The support and prayers and love that is being poured during this pandemic, should be continuously poured out after!!

To sum it all up, the world, the people, situations, diseases, deaths are extremely challenging life issues we all face regardless of COVID and I hope people realize to continue to be in it ALL together, ALL the time.