All these strands of love

I was writing someone an email, trying to describe and explain how this journey has been, and now I feel the need to share with y'all what I said about you:

The past two (and a bit) years have been the hardest of my life.

I don't believe in a sentient universe, but if I did I would be asking it what the hell I've done to deserve how shitty the last two years have been. My illness, the doctors, tests, hospitals, meds, seizures, feeling shitty ALL the time, exhausted ALL the time, sad ALL the time. and scared.... so afraid.  Never knowing if or when things will get better, if or when I might have a seizure today or in public or at work (again). What it might do to my life over the long term. Not being able to drive. Not being able to work. Not being able to fucking buy groceries. My income dropping off to virtually zero, for months. Getting suicidal (repeatedly). Spending days/weeks in bed, crying. And The Flood, and being displaced, and having to move (twice), and my rent going up right when my income was dropping off and I wasn't working and wasn't driving. More hospital visits, more ambulances, more tests, more meds. I'm the crazy girl crying on public transit and then fixing her make-up in the bathroom at work, trying to hold things together. Then I go from not working to working seven days/week just to get my income back on track, and spinning my wheels because my business is stagnating, and stressing every. fucking. month. about how I'm going to pay my rent. (and this week my car broke down and I can't afford to fix it... so I'm back to transit...)

And in all of that, there are only two things keeping me from going completely off the rails:

- my own inner strength, which is currently at an all time low

- my friends and family. I've lost some in the process. Some of them have blatantly abandoned me. But the rest have been amazing. They have gone with me to the hospital and in the ambulance. They have driven me to the grocery store. They have come when I asked for company. They have had me over for dinner. They have gone with me to the forest. They have comforted me when I'm sad. They've taken me for coffee, and given me business advice. They have helped me financially. They have inspired me. They have followed my blog and given me so much support and walked with me for the past two years and told me that I'm strong and that I can do this. Right now, at this time, it's mostly one-sided. I have nothing to give them right now. I need them to hold me up, and they are doing it, and I'm so incredibly grateful to them. This is all new to me. Before this I was always so independent and strong; I never needed anyone else (I thought). I always took care of myself. I have had to learn how to ask for help, and how to accept it when offered. I've had to learn how to be vulnerable, and my community has wrapped me up and held me together with all of these strands of love. 

Thank you. 

Victim Mode?

Recently I have been dealing with a situation where another professional has been treating one of my clients poorly and she had asked me to talk to him on her behalf. I spoke with him on the phone last week and he treated me just as poorly, to the point of attempting to bully and intimidate me over the phone; when that did not work, he hung up on me.

I went to my regional manager to discuss it with him and get his insight because he knows the person in question. He let me know that the person has been diagnosed with a terminal illness--and while that does not excuse treating people badly, it may explain some of the behaviours.

I let that sink in for a few minutes, and I felt some of my anger soften. And yet I know that we all choose our response to the things that happen to us. I said, "but I have a chronic illness, and so does [another leader in our company] and we don't take it out on everyone else." He responded, "and that's what makes you good people."

Granted, my illness is chronic, not terminal. It's not going to kill me (not statistically, at least... there is something called SUDEP but that's highly unlikely). 

Regarding our responses to what happens to us:

If anything, my illness has made me more empathetic to the plight of others, not less. I didn't get it before. I didn't understand illness before. I had always been healthy. I didn't know what it was like to always feel shitty and sick and exhausted, and yet still have to find a way to function. I didn't know what it was like feel betrayed by your own body. I didn't know what it was like to live with deep depression. Now people ask me "how are you?" and I never know how to answer them; my standard answer is, "It depends on the day."

And so it mystifies me when I see memes on facebook that pit one illness against another, like the one someone posted yesterday, which created an argument where one person's friends started attacking another because in their minds diabetes deserves public funding but addictions don't. And the vitriol that came out of that thread, and the personal attacks that were completely uncalled for, just like the bullying of the man I talked about before--it might be explained by the shitty situation a person is in, but it can't be justified. Going through a bad situation does not justify treating others around us like shit. My experience with one illness doesn't negate the experience of people with other illnesses.

Where's the empathy? I'm so absolutely, incredibly grateful for the care I've received for my epilepsy; why would I want to deny that care for ANY other illness, just because it's different from mine?

And whether I have a terminal illness or a chronic illness or I am perfectly healthy for the rest of my life, why waste ANY of my energy on this earth in victim mode?

I mean sure, I've had my share of "feel sorry for myself" days. But I can't stay there all the time. It is what it is; eventually I have to accept it and move forward. Taking it out on other people doesn't make anything better, only worse. The best thing I can do is focus on making myself better (as much as possible and realistic) and giving the rest away. I wouldn't deny anyone else the opportunity to do the same.