How do I tell my bumble date I can’t go to an EDM concert with him?

I feel like what I’m about to say might resonate more with men…only because ladies are STILL denying that they take shits….but have you ever had that like indescribable and totally unbearable pain when you’re sitting on the toilet and your toes are like all clenched, you’re sweating profusely and your head is in your hands while you’re audibly screaming, “please G*d make it stop!”

So if you have NO idea what I’m talking about (well you’re probably a fucking liar) but also this is now extremely embarrassing and I am going to pretend I learned that very vivid bowel movement scene from Bridesmaids or the laxative scene from Dumb and Dumber…not from personal experience.

Okay- so that whole little bit on taking a shit, was a beautiful way to transition into my topic of choice. That was all one big metaphor. Allow me to explain. I know I often discuss my neurological condition (I know, I know-iit gets old), but today is the WORST it’s been in a while. I don’t ever know how to explain it to people when they ask “what are your symptoms,” but because they have been so incredibly persistent today, I’ve been able to jot down some of the prominent feelings.

So here’s a small example: I attempted to go on a walk. And for a little while I was okay. Until I got to the crosswalk. I had to look left to right and that’s when my hands went numb and began to tingle and I became disoriented. I had to close my eyes, count to three, and then focus on the direction I was headed in. When I walk now, I have to clench my fists as tightly as possible in attempt to “ground”myself and if there is something I can hold onto nearby, I might grab on to that too as I walk. It’s not vertigo, I’m not dehydrated, I’m not severely anemic, and I eat more than you do. What once was extremely manageable, is now becoming debilitating. Physically AND mentally. Because the physical symptoms are so relentless, I have this irrational fear of leaving my apartment. Hell, I don’t even want to leave my bed. This is where I tie the metaphorical piece back in…I sat in bed with my head in my hands today, sweet little tears streaming down my face, asking “G*d why me? Why me?” Do you know how guilty that made me feel??? How SELFISH?

Last night, I went to get a tattoo. It says, resilience. It’s something that I would often talk to my patients about when I was a substance abuse recovery counselor. I’d ask them what the two crucial things of recovery are. Resilience and gratitude. Without that, we aren’t even HUMAN. Without that, we have nothing to assist us in finding peace. I told myself after I got out of the hospital this most recent time, I would get this damn tattoo as a reminder to keep moving forward. I won’t give up…I don’t have the ABILITY to give up. If I’m not taking my meds religiously, eating properly, getting my routinely blood tests, and practicing all of the safety precautions necessary for this condition, things wouldn’t be looking too hot for me. Last seizure, I landed on a slab of CEMENT. ALONE…during my last grand mal. I came out of the hospital with a black eye and a bruised knee. That was the first time in a long time I recited my gratitude to G*d throughout the entirety of the day. Month. Year! And once my seizures started becoming controlled…that’s when the guilt kicked in.

“It could be so much worse.” Who has heard that one before? I forget if I’ve already talked about that in the past…but it has become my LEAST favorite phrase. Hell yes it could be worse! I have a roof over my head and family/friends who would do anything for me. I am eternally grateful for them. But that doesn’t mean that what I’m going through isn’t any less valid. It doesn’t mean that what I endure daily should be ignored because in the eyes of many-this is melodrama. “Isn’t a migraine just a bad headache?” “If you don’t go unconscious anymore think of yourself as LUCKY.” And again, if we are keeping things in perspective, I am LUCKY. But there are a lot of days, where I don’t feel so lucky. Some days I just want to forget that I have this condition and I pray to live a normal life. Other days, it is a constant and lingering reminder.

Some examples:

  • A guy I was talking to for a bit had a passion for cars and hitting up the racetrack. I absolutely LOVE driving. I love opening my sunroof, blasting my favorite sing-alongs, and speeding down the highway. It is so incredibly liberating…but I haven’t been approved to drive a car in two years…how do I explain that one to him?
  • When people ask why I left Iowa City’s graduate program when I had been so excited to be apart of it, what do I say? I just wanted to transfer? In the middle of the year? And still pay rent for an apartment I didn’t live in? Makes TOTAL sense.
  • Or…Why is your bag of pills bigger than the selection at the pharmacy?!

I don’t find it to be particularly sexy to people that I’ve foamed at the mouth a couple of times lol ew…and that my hands shake, or how I twitch spastically in my sleep, and sometimes the symptoms can be so debilitating, I won’t leave my house for days. Wife me up, right?

I know. It could be worse. I am not in a wheelchair. I still have full function of my body parts. I can live as an independent adult (for the most part), and again, my support system is incredible. But I’m still scared. I live every fucking day in fear. “It’s going to happen here. I’m going to fall here and no one will find me.” or since I live alone… “I am going to have a seizure in my sleep and what if I don’t wake up?” I know so many of these fears are irrational but they are still saddening and they gnaw at me every single day. These are the times where I ask, “why me? I’ll do anything to make this stop.” It haunts me in my sleep.

But, I’ve learned that, in a sense, I have “survivor’s guilt.” All of these children battling brain tumors, and these families trying to cater to the needs of their child with Cerebral Palsy. I survived when maybe another individual was killed at the wheel during a seizure while driving. This is the reality of it all.Why was I lucky enough to continue?

My point here…there are varying levels of severity when it comes to any condition. It isn’t a competition. We stand together. Please don’t pity me. Don’t feel sorry for me. Don’t remind me of my strength. I’m only showing you want I want you to see. I have no doubt that any one of my friends or family members can endure this just as well…if not better.

At the end of the day, the importance of this entry is to remind you that no matter where you are at in life, don’t feel GUILTY for a certain pain you’re experiencing. Don’t invalidate your feelings. DON’T become someone you’re not. Admit your weaknesses. Rely on others when need be. And hey…maybe we can all say a prayer next time we’re sitting in the stalls of a hospital bathroom together, crying out, “Oh G*d, why me?!”

Over and Out

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