It seems like one of the more regular conversations within chronic illness, disability, and mental health communities is the idea of isolation.
We talk about how we’re often confined to where we live. We talk about the various social events that aren’t accessible. We talk about how most places, even doctors offices aren’t accessible.
Conversations about how lonely we are and how we are thankful for the online communities we discover for helping to fill that void are commonplace.
But there’s something missing.
No one ever seems to talk about the actual situations that continue the isolation. And we aren’t given space to talk about those that we lose over time. We’re given one or two conversations before the topic becomes a dead horse that doesn’t deserve anymore attention.
People are so quick to tell us that we need to just move on. We must embrace that we have lost a connection that once meant so much, and simply let it go.
Maybe people don’t realize that as our circles continue to get smaller and smaller we don’t have anyone else we can talk to about it. And you’ve shut the conversations off.
I can’t heal and move on without talking about it.
So, I have to talk about it.
Moving back home away from friends I made in school and at work, away from friends I’d finally reconnected with after almost 10 years, and people I’d hoped to build relationships with was really fucking hard.
I’ve moved before, I’ve moved a whole lot in my life, but there’s something pretty certain with being so far away. Those relationships fade.
You miss proposals. You miss weddings. Babies. New jobs. Housewarming parties.
What was weekly phone calls and conversations that lasted late into the night, become sparse and sometimes completely disappear.
It doesn’t come at anyone’s fault, but rather a side effect of distance.
Even the people who you’ve had long distance relationships with for almost a decade, don’t always last.
There isn’t anything quite like the betrayal and complete loss of a person who was your best friend since you were 11.
It’s something full of anger. Regret. Disbelief. It’s irreparable damage to a part of your soul.
It’s realizing that the half-hearted joke made when we were 15 all walking home for one of the last times before I headed across the country, about how you’d just have to find a new short blonde girl to take my place, was maybe a little more serious than you intended.
It’s realizing that both of our lives kept moving forward and sometimes I just existed in your life as a place holder. A reminder of some friendship that had long been over.
Because by the time everything collapsed, you had seven other petite blonde women who shared the same experience, existing as mere place holders in your life. People who would give you the attention you needed.
You think for the longest time that maybe it isn’t the case, but if you could let me go so easily whatever friendship had been there was never real.
No one talks about that isolation.
The isolation of suddenly not having your best friend to go to. The person who knows the ins and outs of so much of your life. The person who has been there. Someone who knew you before. Before your first heartbreak. Before illness took over.
And you’re just supposed to let it go, to accept their absence. Because it was an absence I chose. But that doesn’t make it any easier.
Maybe losing friends is the hardest.
But maybe losing family, and having the rest of family think it’s someone a reflection of that person and that eventually I’ll have to be open to forgiveness is miserable too.
I haven’t touched on this in the way I needed to.
My brother Kris crossed a line so painful that I almost killed myself in September.
I haven’t been able to write in the way that I want. I haven’t wanted to be open or vulnerable. I have a deeper sense of absolute hate within me than I’ve ever had.
And – this may be hard to read – but many have made me feel like I’m not allowed to express my discontent. Many expressed that I shouldn’t express it to begin with. Frankly, fuck that.
The person in my family who I was closest with, the sibling that put in a relentless effort to always be present in my life. The person who always strove to make birthdays memorable. A brother who moved across the country to be there when I needed him. The person who shared my love of football who I spent endless game days with. The person who dug into the craziest, most confusing research with ways that could eventually lead to hope for new migraine treatments.
That person. Decided I was too much.
I don’t like my birthday to begin with. Now I watch sports alone. I rely on myself when I need a safe place to go. No one I know actively shares that they’ve watching research developments.
I guess you didn’t quite grasp how often I can’t even leave my bed. How painful it was to come visit even just for a minute, especially when young children were involved.
You missed how incredibly special it was for my new little niece to look up at me and ask if she could call me Auntie-Alex.
Somewhere along the line, you decided I was entitled. Not qualified. Spoiled.
Maybe you never asked about the scholarships that allowed me to go to such nice schools. You missed when I worked full time and paid my loans while still being in school and sacrificed a boatload of “experiences” to not have large debt. But then again, your loans aren’t even your responsibility. So maybe you shouldn’t speak on it.
Maybe you missed the way I’ve been absolutely honored and humbled every time I’ve had a piece published. Every time I’ve been interviewed. Every time someone takes a moment out of their day to read something I’ve written. 54 countries. All of it came because I just needed a place to talk, like I’m talking now. So you’re right, maybe I’m not qualified to ever speak on it again – you made that clear and maybe you’ve succeeded because I really haven’t had much to say.
I’m sorry you shop at Walmart and gauk at me for ordering a FREE box of Hello Fresh. I’m sorry you’ve never had to experience collapsing in the back corner of a Target because you thought you’d be okay enough to grab some toilet paper and blueberries and suddenly couldn’t see. I wouldn’t want you to have that experience.
I’m sorry last Christmas you had to celebrate a little later and that I forced myself to come while being violently ill. This year I’m being more selfish, and I no longer celebrate the holidays. So no more pretending to be okay enough for people who think I’m just so entitled.
All it took for you to break was me sharing about a trip to Philly that would inevitably be canceled. I was hoping for “gifts” you’re right. That wasn’t the point of the post. Hell, the gift part was almost fully for you because you were the only one who year after year would ask about little things you could get for me and since this trip was a month early and would be my “birthday” celebration, I guess I didn’t feel out of line hoping for a $5 museum pass.
But you told me to just get a job and pay for my vacation like an adult. I didn’t ask you to pay for my vacation that was already paid for. You know, a vacation that would have cost a whopping $300.
And then you ragged on my parents for being so giving and helping their disabled child move home and how they’ve just given me everything.
You must think I’m awfully ungrateful.
I just think you’re awful.
How could you be angry that parents would do everything in their power to help out their kid when they need it? I mean they put you through college and you don’t even use that damn degree.
I’m sorry I’m related to you. Frankly, I wish I never knew you. I wish I never had to hear your name again.
You broke my heart. You broke my spirit. And forgiveness will never be extended your way. You can’t put someone in such a dark place and expect anything from them. And no one should ever tell me I’m wrong for this, you didn’t live through what I did.
It doesn’t matter what was going on in your life. It doesn’t matter that the reaction may not have even been meant to be directed at me. You chose to direct that anger and disrespect towards me. Your circumstance doesn’t excuse your behavior.
I’m sorry your kids won’t know their aunt, it’s a damn shame. I am pretty great.
And if this ever finds you, I hope you’ve found peace. I hope you’re happy. And I hope you’ll leave me and my peace undisturbed.
No one ever tells you about the isolation that comes from the continual loss of people who mean the most to you. No one tells you that people who are still around don’t want to really be that shoulder for you to lean on to express how you’re feeling.
We have to allow ourselves to let go of people who aren’t serving us.
And they weren’t serving me. They made me miserable. But this immense sense of loss, isn’t serving me either.
Let me talk about it. Let me scream it from a fucking rooftop. It’s my dead horse to beat.