A port in my storm


I have been thinking a lot about the things that people do and say around a person like me, with chronic pain and illness, that help... verses the things they say and do that hurt. Then I started to think about how some of these things and ideas could be applied to any kind of a hard situation someone is facing. Then Hurricane Irma happened last week and my niece and her two kiddos needed a safe place to be and suddenly all of my neat and tidy ideas got jumbled into real life happenings and here I sit today trying to pull it all apart and make sense of my thoughts again.

It's like mental Monkey Bread; that's what I saw in my head just now when I thought of everything being lumped and stuck together and trying to pull it apart. So there's that. Someday we'll talk about how I'm a sugar addict.

I digress.

Throughout these past few months people have said to me more times than I can count, "I wish that I could help." Trust me when I say that whether in reference to my life experiences or your own friend/family member, you help just by being there. The type of pain that I have been in, especially in "The Beginning" (as I've come to refer to it,) back in May was quite frankly crazy-making.

There was a period in early June, before my doctor and I got the Gabapentin to levels that made a significant impact in which everything is a blur and I lost chunks of whole days because my brain dissociated. Pain that intense creates a sort of mental prison that the sufferer can get trapped and lost in. At least that was the case for me.

There were times when I was home alone or at night when I needed to be sleeping and the pain was so intense and sustained such high levels that I would be crying and wishing for escape, thinking, "If this is what life is going to feel like long term, I don't want to live."

I was lucky because I never had to be alone for very long.

I swear just about every time I felt like I was slipping into madness, my phone would buzz or the tiny robot that lives inside of it would beep and boop and the message that lit up the screen would be someone checking in on me.

"How are you holding up?" "How bad is the pain?"

I'd reply and a conversation  would start and that was generally all it took to provide just enough of a distraction to get me through.

My partner, Nathan, seems to have an internal radar for when I am feeling especially desperate or pained. Believe me when I say I have no idea how I would make it through all of this without him.

I do not envy his position; it's difficult to see someone you love in pain and not be able to physically and tangibly do very much to help. Some days I have sobbed from the pain, full on ugly-cry-face sobbed and all he could do was hold me and tell me he was proud of me for working so hard to get better while waiting for me to regain composure.

I'll tell you what the key to all of this is, though: The people who ask me how I am doing actually give a shit.

I know, that seems obvious, but it's not. Some people ask you how you're doing because they feel somehow socially obligated and they expect that you'll say that you're fine or that you're getting much better and when you give them a little bit of the truth it scares them right the Hell off.

I have tried to maintain as positive an attitude as possible throughout all of this but some days I needed to be able to say, out loud, 'this fucking sucks and the pain is real and it is killing me.' If you're not ready to hear that kind of truth from someone you know, don't ask. If they tell you the truth about their pain/illness, respect it.

I know I used the prison analogy earlier in this piece and that maybe one analogy per blog is the maximum allowable by respectable bloggers, but I don't care. I'm going to use another one. Watch me. Ready? Ok.

If what I've been going through is the body's physical and emotional equivalent of a hurricane or tropical storm, then the people who have circled around and cared for me, checked on me, sent me surprises in the mail with notes of encouragement... they're my lighthouse... guiding me back to safety and some semblance of normalcy.

Aside from Nathan and a few close friends and family members, my lighthouse has primarily been constructed and maintained by my business (the tasks associated with running a virtual business,) my teammates, and business partners.

It's crazy to think about because I have teammates in Alaska, Virginia, Illinois, even Canada... my team lead is the only person in Tennessee that I have regular contact with! Yet this group of people scattered across North America (most of whom I've never met in person) has shown more love and support and showered me with more encouragement than nearly everyone I know. That includes the (majority of the) folks I've worked alongside at my day job for nearly two years.

I am not a person who knows how to just sit still. I hate asking for help even when I really need it and it has taken a lot of re-training to be better at this. I saw a meme not long ago that said, "Where is my rest muscle and how do I train it?" I laughed out loud when I read it because that is so perfectly me.

Having a business that I can run from my couch armed only with my cell phone (or my laptop, when I can sit up) has been an absolutely brilliant escape from what's been happening internally. It keeps me connected with the outside world when so much of my daily life is spent lying or sitting on the couch. It also keeps my brain from turning to mush and provides me with an outlet for my creativity.

When people ask me how I've not gone completely mad yet after three months on the couch, I tell them: It's because of my business. Everyone going through something like this will find different ways of coping... this is mine.