Sometimes we can forget how important it is to be part of something; a sense of belonging to a group. With COVID being so in the forefront of everyone’s lives, a sense of community when we are forced to be isolated for self-preservation, has become more important than ever and ever harder to find.
Suffering (oh if you only knew how much I loathe that word) with a rare disease has left me feeling so isolated even when I am completely surrounded by my family and friends. It is a feeling like no other. To know that I stand in a group with so few people in the world (that I know of) that you can use all your fingers on one hand to count us all and still have 1 or 2 leftover is unfathomable. This is not the way I wanted to be one in a million!!
People ask me how I am doing from time to time. And I am never quite sure how to answer them. I know they mean well and are asking from the good place in their hearts. But can I tell them the truth? Or even should I tell them? How are they going to react if they knew exactly how I feel? Are they going to judge me for the things I can tell them?
So I answer them with the most generic phrases like “I am hanging in there” or something witty like “Doin’ the best I can!” (insert hand smacking my own forehead).
And then one day, I find myself scrolling through FB and see a fellow MD friend heading to a neurologist out of state and I curiously, yet sincerely, ask what makes the neurologist so special? I have yet to meet a neurologist who knew more about my condition than I did and who was honestly interested in helping me.
Side note - Now, don’t get me wrong, I see a local neurologist who I like. He helps with what he can and refers me to the correct specialists when need be. But like I said before, having a rare disease means that most medical professionals don’t know enough about me or my disease to help do more than manage my everyday symptoms. And I am grateful for his willingness to help in whatever way he can to make me be me for as long as I can.
Most of the specialists I have met did not give me the genuine feeling they were interested. And deep down I believe that they care, but they realized they really weren’t going to change my life and that there are other avenues more worthy of their time that can affect the most change. And even someone in my predicament in life can appreciate wanting to affect change on a grander scale, even if it stings a bit.
Now that that is out of the way, back to the FB story...
So, as the comments from the FB post continue, another MD friend comments saying that she and I need to chat. I agree and we set a time to talk. She lives in Pennsylvania and I, obviously, (insert another head smack) live in Georgia. One thing leads to another and we are not able to connect as she is feeling under the weather.
Squirrel!! That is something that I think most able-bodied people take for granted. Your energy levels are boundless. My disease wipes me out after going food shopping to the point of spending an hour or two on the couch to recover enough energy to cook dinner. And back on track… I hope…
We end up on the phone tonight, talking about things that I would never admit to saying out loud, outside of a small group of friends. I find myself laughing and feeling some tension rolling off me while I find an emotional connection to someone who understands; someone who just “gets it”. I don’t feel like I need to add the “just kidding” to the end of the sentence, because deep down, I am really not kidding. And she completely understands and there is zero judgement.
It’s like we speak a different language than they do. And yet despite the best translator apps our smart phones have, we just can’t seem to understand what the other is saying. But then, after what feels like an eternity, someone comes over and invites me into this room where everyone understands what I am saying!! No interpretation required!
I guess I didn’t realize how lonely I was feeling until she and I were on the phone. I didn’t know how much I needed to feel not alone. And I forgot how much a simple phone call with someone whom you have only met once, mind you, can make me feel so much better than I realized I needed.
We decided we should make this a monthly thing, maybe a video chat and a glass of wine, because life is heavy enough. And sometimes it’s just what the doctor ordered…