One of the side effects of a neurological and chronic condition is fear. And there are so many different ways and things to fear that it is hard to know where to start.
First is the “This wasn’t the way it is supposed to go!” fear. This one is a repeater and seems to have a few variations but basically it is that you had a pretty clear idea of what life was ‘going to be like’ and then you start to notice that things are quite the way they are supposed to be. And you go to the doctor and instead of telling you that everything is okay and yes you will go back to ‘normal’ he tells you that you have (insert condition here) and that no, things will never be “better.” Or if you are particularly unlucky and/or female your doctor will tell you it is depression or in your mind and this cycle of you noticing things aren’t quite what they should be and going to the doctor and (let us assume HIM) the doc sending you off again, usually with an antidepressant. But eventually you have a name for all those ‘things’ and a wave of fear hits you because you don’t really know what that name means, not really. I mean you might have heard of a school friend who had it but what does that mean?
Well, life moves on and you find that yes, life has changed but it still goes on and so do you. And that yeah; you’ve got a chronic condition/neurological/degenerative condition but hey, it is sunny out and you aren’t going to die/be bedridden/be debilitated TODAY. Only by now you are in a support group or seeing a GP who knows of your condition and someone mentions a particular effect/condition that ‘some’ people get and you think, “Christ, don’t let that be me.” But in the end you have your own particular bag of collected symptoms and limitations and a bunch of people have already told you, “Gee, I couldn’t live like that.” Because that is the Able Bodied world equivalent of saying something useful (along with “Have you tried…..”).
But then some day, you’ll be doing something, some part of your new routine, and you’ll just stop and think, “Is this it? Is this as good as it is ever going to get?” You’ll remember your life before diagnosis and all the medical things you didn’t think about which now consume your life. And while you know that these conditions just happen, that it isn’t your fault, that there wasn’t something you did, you have to wonder why it happened? And you look ahead, and you can see the future you had planned before diagnosis and the new future your GP told you about and they don’t line up very well. And a fear takes hold of you; that you will lose even more. And the thought of losing more is almost too much to bear. But then, what would your able bodied self say to you if they sat next to you on a bus now? This fear is about the future and now and wanting to go back and being that person who never worried about medical issues and how once touched by the hand of random and destructive chance, we don’t want to feel it again.
There are, of course, the immediate fears, which the longer you have a condition, the fewer they become. The first time you can do X. The first time you are too fatigued to lift a limb, or call for help. That realization and fear that you might have to wait for someone to find you. The first few brain fogs; the times you have said enough wrong words that you have to admit that this can’t be a coincidence. The fear then that you, the very essence you have trusted your whole life, may not be perfectly trustworthy anymore. The first major seizure, or incredibly painful muscle spasm, or incredible pain which stops you from sleeping and the thought that ‘this could be what it is like…every day.” Or heart erratic or falling down or having enough energy to get somewhere and then not have enough to get back. That first fear because “Shit! What is happening to me!” But then, whether it is needing oxygen, or cold packs, or an PA to come and prop you up and turn on the TV, the first incident becomes the second time until it becomes the 100th and while OTHER people freak out, you are getting kind of bored. Well, until a NEW thing happens and it is the first time for THAT particular new symptom (and you get that jolt of fear – and maybe a trip to the hospital – all over again).
There are the people fears; first that your partner and friends will leave you, will forget you. And as that starts to happen, as groups you were part of stop including you, you wonder how alone you will become. Not a pleasant feeling. But after a few months, those who are going have usually left and you have met a few new people and the fear recedes. But then all these PEOPLE, people you know nothing about are entering your life and are in charge of your home care, or whether you get disability rights or whether you get medical or assistive equipment. There seems to be no limit to these people, as well as the people you have to go through to get to these people and some of them, to be honest, you aren’t really sure up to the job. And as time goes by you realize that the days of being treated like a consumer are gone. That these people may screw up and if you get mad and write a letter or express your displeasure, then instead of like writing Tesco or Safeway, you don’t get a super apology; instead you are sent back to the SAME person, who now processes your paperwork even slower. You get a handidart driver whom keeps talking about “You cripples are dragging down the whole system.” But you DON’T call in a complaint because you did last time and nothing happened and for all you know, this is the SAME driver you will get in two days for your next pick-up. And you realize that there are now many, many people who can abuse you from slight to direct ways and there is very little you can do. That by simply never returning your calls, you can be delayed treatment and no one will care. And you realize that people, that society doesn’t see you the same way anymore, and THAT scares you. But you do get over it, and cope one way or another. Until you meet ANOTHER person who has power over you and hope inside that THEY at least will be competent at their job.
There is also the fear and frustration of helplessness over every law or legislation or paperwork that stands between you and your decision to make a stable life. There are times, when looking at the deadlines and layers of paperwork you wonder if this isn’t some sadistic survival of the fittest toward people with disabilities. I mean, when you don’t know what day it is and this has to be filled out, signed and submitted within two weeks of application at a particular office on Wednesday between 12:30-2:30, well, is this designed for people with neuro and chronic conditions? I am still waiting for a form to be filled out by my GP from 2006. Seriously. Oh yeah, and what about those “assessments” you MUST attend at time X or ‘you may lose benefits.’ Nothing like going to a room where someone will decide in ten minutes whether your life is going to be put through the wringer or not. Nope, no fear there. Personally I think if every 8th or 10th person going in just took a board and WACK, hit the assessor on the head, then THEY might fear the assessments as much as we do. Oops, did I say that out loud.
But maybe these fears fade as you get years into your condition. I hope so. My final fear is what I call “The Big Picture” as, unless your condition stabilizes, or every time it does, you start doing the math, and start projecting what your life might be like in, say, six months, or a year or two years or five years. This only happens when I have a run of bad; and I try to think what life is like at this rate in a year. Probably because when I get a few decent days I try to forget that I have a chonic condition. Except there are always those reminders that you aren’t the person you used to be and you never will be again.
As for me, I am terrified of my own body. Because you learn the new rules, the limits you have to keep within, and the drinks and food and rests you need to take to be optimal. If you had this kind of discipline before when AB you could have stayed on any diet program you wanted. But now, the cost is too high to push the edges anymore. Only sometimes, you do everything right and your condition fucks with you anyway. And just when you NEEDED it to be strong, you were doing everything right for three days so you go out tonight; but you can’t, you can’t get out of bed. No matter what you do, you can’t control it all the time; and no matter how much you want to go with the flow, there are some times when you wish so bad you COULD control it. You cry because what you had been planning for two weeks you won’t be able to do.
Why am I terrified of my body? Because there are too many things that go wrong. Right now the left hand I am typing with is a beet red and my right hand is yellow, the same color as baked dumplings. That isn’t something you get used to easily. Some days I look in the mirror and smile and only half of the face moves. I wasn’t very mirror obsessed as a teen but STILL I am pretty sure the smile goes on BOTH sides of mouth. I have heart erratics every day, for at least an hour. Even my doctor, doing a three-minute blood pressure test heard and saw the erratics shake my body. At least once a week I feel so bad that I would call 911 if I could reach a phone but I can’t.
As for me, the doctors are treating at least six months behind my symptoms. Normally that wouldn’t matter; with most conditions you will notice a problem, have time to talk about it for a few months and then take action. My progression in three to five months seems to be about 10 years of most other conditions. Unless something changes soon, it is a matter of weeks to maybe a couple of months before I start spending the majority of my time bedridden. The morning, which was the time I felt strongest, isn’t enough some days to enable me to shower using the bench. What used to take 18 minutes able bodied and 90 minutes seven months ago and 150 minutes three months ago now takes me up to 210 minutes: to shower, to dress, to groom myself, to take my morning pills and to have some form of sustenance. My speech, which used to have problems only when I exerted myself all day is now distorted on a daily basis. There is nothing I can do to stop or slow it. My doctors are still debating about tests they decided to do a couple months ago to determine that I have orthostatic hypotension: something which has only been determined five times so far.
Linda has said that being here, seeing me this week has helped her understand that I am not the same as a couple months ago when she was last at home for an extended time. She gets scared when I am too weak to move, and she has to move me, not knowing what damage she might be doing to my body so I can breath for now. She thanks the hospital bed, that it gives me what she calls "a chance" at breathing. And this is one of my better weeks.
She says she thinks of how much I have declined, how much more fatigued I am, how weak, when she is planning the trip to Japan. She says, "And we don't even know what you will be like in April." That makes me start crying. Because it is true. We don't know, but I want to try because even if I can only go outside for two hours a day, I will see 14 two hour snapshots of Japan. But somehow it is harder to hear your fears spoken out loud, and by someone you love and who loves you.
The fear comes and goes. Sometimes it hurts to look ahead. Sometimes it hurts to look back. You have a find a balance in the now, I think.
Fear doesn't define you; your condition doesn't define you. But that doesn't mean both aren't still there.
20 hours ago