Myoclonus – This one’s for Mama n’ Pa

Myoclonus isn’t fun, and it isn’t a panic disorder.

Does this look fun to you?

It doesn’t go away on it’s own. The muscle contractions are extremely painful and the stigma and embarrassment almost took my life.

I’ve never met someone else personally who suffers from my condition, but there are a few extremely brave souls on the social media who are speaking out. Connecting with these people, if only through their videos keeps me going right now, keeps me sane. Thank you to the brave women (they’ve all been women…) who’ve posted their stories.

Here are just a couple of those videos:

Living with Myoclonic Dystonia
Link redirects to a brave makeup artist talking about how her condition effects her daily life


 


Young woman with Juvenile Myoclonic Epilepsy who, like me, wasn’t believed for several years.
She was lucky enough to be diagnosed as a teenager.


A Cry for Help — Open Letter to my Folks

Hi Mom n’ Dad,

It’s been a long, slow weekend.  The total count for seizures Fri-Sun now is about 5 or 6. No matter how hard I try I can’t really remember much of yesterday. I’ve been sleeping a lot, which I suppose is good for me. On Friday I collapsed 3 times, and once this evening. I honestly don’t remember much of yesterday.

The collapsing is becoming a real issue, and a huge anxiety factor. Before I broke up with my partner, I could usually count on her to catch me. She knew my behavior enough to know when I was going to fall. I don’t typically have them during the day – they’re more common before 8 in the morning and around 8 – 10 at night. But, like the day I was discriminated against in Vicki Fowler’s office, stress can cause them to come on suddenly. Usually when I fall, I start losing muscle control quickly but am able to simply lay on the floor – or the stairs, or whatever. But when I’m outside, or on cement, I tend to fall much harder than I intended to. I remember hitting the cement pretty hard outside Fowler’s office, then crumpling forward but my partner was already there waiting. My head would have smashed into the cement if it weren’t for her.

I know I’m not safe alone any longer. I probably need someone to take care of me, but I can’t imagine who would want to do that. My good friend has offered several times to get an apartment together in town, but there’s hardly any listings and nobody’s taking me seriously because I have absolutely no source of income.

I’m obviously worried about falling and hurting myself. I can always trust my dog to guard me while I’m passed out, but she was forcefully separated from me in the fake Dr.’s office and I can’t afford the cost of getting her registered even as a therapy dog so she can’t go on the city bus. I don’t feel safe going anywhere without her.

I’ve wracked my brain for other options. Dad offered to get me back to the homestead somehow, but I don’t understand how that would help my situation. He said you would try to find an apartment for me to live in alone, but I don’t see how that helps with my falling-while-I’m-alone issue. I guess it’s just a danger I have to face alone from now on.

I’m still waiting on the neurologists to call and make an appointment. All my friends including my buddy whose girlfriend died from my condition, and my house-mate who is a nurse at St. Joseph’s hospital say that Humboldt county is grossly understaffed medically and that’s why it’s almost impossible to get appointments around here. The under-privileged minorities simply aren’t accepted. Fowler started acting stand-offish when I told her my girlfriend was waiting outside (discrimination). I thought it would make her feel more accountable but instead it made her angry, and I was thrown out. It’s been suggested that I move to a bigger city to look for medical help. I’d gladly pick up and move, but how? I can’t drive, and once I got to Santa Rosa or San Francisco I’d be starting from scratch with no money to speak of. I can’t even afford a bus ticket South any more. I spent my last bit of cash today on some food to get me through this week. I don’t think trying to move by bus to a city I’ve never been to in order to wander alone into more medical facilities looking for help is a good idea.

This isn’t something that’s just going to go away if we ignore it. I may have better days and worse days but epilepsy is for life. I’ve stretched my strength, my pain tolerance, and my money as far as it could go. I stayed employed as long as possible and found a place to stay for the month while I figure things out. What I really need now is some support from my family. Friends have offered to lend me money if I run out of food, and more friends have offered to drive me places sometimes, but I don’t think my friends should have to take the role of my parents. If I was having some sort of mental health crisis right now, I think you guys would be jumping to try and help me make a plan to get better. But for some reason this actual physical illness is sortof passing under the radar. Dismissing me with phrases like, “That sounds really rough,” and “we really hope you feel better soon,” and “I’m sure somehow it will work out,” is grossly disrespectful to my condition, my suffering, and the reality of what I’m going through.

I can’t fix this or make it go away. And I’m doing everything right as far as signing up for benefits. I think I may be able to get signed up for food stamps as early as this week, but state disability takes months to go through. I’m sure it won’t pass through by the end of the month. So when September rolls around, I suppose I’ll be homeless. I’ll try to drive my truck somewhere inconspicuous and camp out of it, but the cops are very harsh on people who sleep in their cars, and the discomfort and stress may cause my condition to get dangerously severe.

Should I keep going down this path of signing up for Humboldt County based benefits? Do you really think that living alone in an apartment in your town, which is even more remotely located than mine, is a good idea? You once spent $30,000 on my ‘mental health’ thinking it would fix my brain – but now there’s actually something wrong with my brain and your nonchalance is painful. Why can’t we talk about some kind of plan for my health? What ideas have you had? Have you discussed it at all, or is this another one of those things “we just don’t talk about?” (Quoted from my brother – ‘It’s just not our family’s ‘way’ ‘)

I’m curious to see how soon I’ll get my EEG. Right now it’s the most important thing for me to get, and the best tool they use today to diagnose epilepsy. If they call me soon and my appointment is soon, then it’s probably best for me to stay here long enough to get diagnosed. But if they put me on a waiting list because there’s not enough doctors per patient in this county, I think I should probably try to get somewhere where I can actually get help. I can’t go on living off a can of beans and a spoonful of yogurt a day, collapsing randomly and answering ad after ad on craigslist saying, “I need a place to live – I’m sure some money is coming to me soon.”

It’s a bad situation, and one I think I’ve dealt with pretty maturely on my own so far. I know you guys have been on vacation and that this is all hitting you pretty fast, but honestly I’ve been having seizures since this past winter. I think I’ve waited long enough for you guys to come around and believe that this is serious. Let’s please talk. Please help me figure something out. I’m not being immature in asking my parents to be somewhat supportive of me as I come to terms with having a long-term and life-threatening condition.

love you,
VC
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