Dear Paula,
I know we’ve never spoken before, and you may not even know who I am, but I feel compelled to speak to you today. Don’t worry about this letter; I am family and what I have to tell you really won’t be anything that you’ll change immediately, anyway. The things I speak of will more than likely benefit you in the next few years and beyond. I will be handing out advice – something you probably don’t get a lot of – but not criticism (something I know that you DO get a lot of). Don’t worry about how I know this; just know that I care and that you will “get it” eventually.
Ok, here is my list. Feel free to take it or leave it, but please promise me that you’ll at least consider what I have to say here:
ü This is number one (for you and me both, believe me…). Remember those headaches that you get sometimes? Well, they really are migraines, and your mom has them, too (no, her headaches are NOT sinus – they are also migraines). Your great-grandmother – the old lady that your mom said she used to visit in Chicago – also had them, and they are genetic, handed down from her. Now, I know you’ve had some “bad ones” (Remember that one you had after getting off the plane when visiting your uncle Paul? You got so sick that you threw up all over Bonnie & Paul’s yard and sidewalk once you got to their house!! I know, it was gross and embarrassing and it didn’t help when your mom & dad yelled at you, but you must be strong, because plenty of people will do more than yell at you in the future; they won’t believe you… more on this later.), but at this point, I know you aren’t having that many. I don’t want to scare or depress you, but there will be more. I can’t say that they won’t be more painful, but they WILL last longer and your life WILL change. Also, there will be a new medicine, but you will eventually have enough trouble near menopause that this drug won’t do that well, especially if you don’t take it soon enough. This is where the next “please” comes in:
ü Please don’t wait to do anything it is that you want to do. You will have a lot of chances: the chance to go to college (stay with me on this – I know you think that you don’t want to go, but you may change your mind; in fact, you probably will…); the chance to really do something really meaningful and AWESOME – and it’s NOT just getting married!! I know that will be something BIG to you (don’t ask me how I know it, I just do), but please – there’s that word again – please wait for that. Some really good things come out of your marriages (I meant it to be plural – don’t ask!!), but do all the other things first, if you can. Just think about it, ok? As I said earlier, these headaches will throw your life for a real loop, and you’ll manage it, but things – all things – will NOT be easy; this is why it’s vitally important to do what you need to do first. This is where I come in: I can help you know what you need to do, so that some day, you can do what you want to do!!
ü I want to tell you to be careful with everything, but being “safe” seems to be your forte, anyway, so I won’t warn you too much concerning that one. Do find someone to talk to; you can trust what I say, but it will be hard to get in touch with me just any time you want. That’s why I’m asking you to reach out a little harder when it comes to finding people who make you happy; feel good about yourself; and who can give you great advice. Please (I know, another one!) start early in finding a professional to talk to; it will benefit all that’s happened and you’ll be surprised at just how great things can be if you get some of that “other” stuff out of the way. Sorting it out will be one of the best things you’ve ever done, and it will prevent many things I hope you never find out about.
ü Also, I know you love to ride your bike and lay out in the sun; the bike-thing is great, and you’ll probably do a lot more of it; 48 years old is NOT too old to do any physical exercise, so know that, in this regard, you’re right on track. The sunning – not so much. The experts will tell you years from now that frying in the sun is one of the worst things to do – I’m serious! But, do enjoy and remember to stay active; it’s one of those “things” that make you happy in a not-so-happy world!
ü Ok – now to the problem of misunderstanding and stigma: Those sick headaches, the migraines, are actually a neurological disease. They will find this out a few years from now, but many people – especially those who’ve never had one/many of the headaches or other symptoms – will not believe you or anyone else who has the disease. These misguided people (as well as many of the doctors) will misunderstand, disbelieve and trivialize the headaches; they will say, “I’ve had a headache, and I just keep working or take an aspirin – what’s your problem?” The doctors may drop you as a patient; they may refer to another doctor, and that doctor may try a few meds, but then just dismiss your pain as a ‘psychological’ issue. You will feel defeated, ridiculed and hopeless – especially since the dismissals and diagnoses comes from a “professional”; this is all part of the stigma and how society feels about headache, and many of the doctors you’ll see are no different. Also, you will lose jobs; you will be alienated from friends and people you love; and still others will talk behind your back. You must forgive them, or at least try to forgive them – even the “professionals”. These people, who seem so unkind, do not understand; they believe the information that has been propagated for generations: ‘that migraine is just a headache’; that the people who have them just want attention and are “whiners”; and that the whiners just want to get out of having to work or do things they don’t want to do. I know that this doesn’t seem like a problem now – you have so few of the headaches right now – but it will become a problem for you and for so many others. You know how bad the pain is already, but it will come as a shock to you that in the future beliefs about migraine can be so archaic and out-of –date. Well, they can be – and are. A few hundred years ago, migraine was believed to be a ‘hysterical’ disorder, and it many ways, that outlook has not changed. This outdated opinion is so much more than that: it sweeps across our country and world like the plague, and this “plague” will almost halt the research and cure that this disease needs so much. Just do this: Keep Calm and Carry On; know that you may be at the forefront of a movement to change these misconceptions and misunderstandings. Please (there I go again!) just be strong – know that there IS meaning in all of this. Try not to be depressed (it’s another part of these migraines and something I’ll explain to you later, in another letter), and don’t let a moment of your life slip by (even the painful ones, ok?). There is hope, and an image of that hope is in your lifetime! Read on…
ü Lastly, remember that I’ll try to contact you again. I know you need someone to talk to (don’t ask, just know that I know), and I’ll be around – keeping an eye on you. Just take care of yourself; eat and do what you want; and please go to school first, ok?
Your new, but lifelong friend,
P.J.
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