syrinx

In trying to find ways to help others understand the kind of migraine that is being discussed here, I suggest it be classified as an invisible disability. It is considered a disability if you have chronic pain that is in your life for more than 3 months, so the fact that my situation has existed for more than 30 years qualifies as a disability. Speaking for others that live with this type of situation, they need to identify their condition as such to ensure their quality of life does not suffer too much. We have limitations. And we need to bring those to the surface so that we don't just appear strange... or antisocial.

Driving is something that I was advised against, even though at one time I did drive. It's true that looking back it was the best advice overall, but initially I was not happy with this. With aura I have loss of peripheral vision – something vital to safe driving – and since I have no idea when that is going to happen, the risk would be foolish beyond description. There is no pre-aura. Aura is the warning of the migraine. Prior to the Botox therapy I received I used to have "Ice Pick" attacks in the left temple. I am sort of cured of this now, (yes, I said sort of cured: I have not "felt the pain" of these since the injections, though the migraines still occur) but there was a time when these were among my most dreaded. Lasting only two, maybe three minutes, they are excruciating and stop you in your tracks. You are frozen until it passes. You cannot move, think, or do anything at all. They are horrible. They have no warning, as they are far too swift. You can fall down in some cases, or appear to be transfixed. Thanks to Botox deadening the nerves in that area, I don't feel them anymore (which does not mean I don't have them, just that I do not experience the pain). To drive a car with the risk of the Ice Pick attacks was far too dangerous and so this option was out of my life. This is one of the factors that starts to show you are different. You are not abled, you are disabled when you can not function in the same way as other people. Driving a car is considered a normal part of life. I am not part of that.

Some of us in the high pain frequency category experience waves of fatigue that come on like an attack and disappear just as suddenly. Very similar to what MS patients describe (some theories suggest MS is a close cousin to migraine), where the feeling is beyond your ability to push through it, you usually have to wait it out too. Sometimes they are 5 minutes in duration, sometimes half an hour, but they are always very frustrating. It's as if someone is turning off a switch. Your power is gone, and you have to wait for it to come back on. I tend not to share that detail with most people, but it is our reality. We wear down in very strange ways. Not to mention if you are on Topamax – as I am – it adds a layer of fatigue to our struggle. It's a good idea to be open about this one, because you do have stop working, studying, or socializing at some point and recharge your strength. You have a legitimate reason why you can't do it all at super human speed.

All the while the world is continuing with or without you. So it's very important that you let everyone know that you are different. For years I used to try to hide these symptoms and really fought the idea of an invisible disability. I didn't want that word to describe me or my life. But I started to realize that I was wrong in doing this. I was doing a huge disservice to others as well as myself. It is actually exceptional to achieve anything in this life, but when you have obstacles – real ones, not the made up ones like you see on talk shows – it's important to let people know you have these issues so that you don't make your situation worse. And if on top of all that you do achieve things, well, isn't that worth something? In some cases you might even be better than average people. I have seen this happen. And, just between you and me, I think it bugs them.

What I realized however was that I was not helping the other people around me who also have this condition by being quiet.

My father is the person I think of most often because he was living in a time when there was no real medication for migraine. The pressure on men to be providers and examples of strong stable beings with no emotion was at its height. He hid his emotions from the world but not from his family. He would often come home with tears streaming down his face because he was so burned out and in pain that he could no longer maintain the facade. The medications he did take inflicted a lot of damage to other parts of his body and that started a downward spiral of constant health and pain problems that locked him into a nightmarish situation that has more to do with society and its ideas of masculinity in the 60s than anything else.

His own father had a disability in that he was completely visually handicapped by the time he was 50 (I never met either set of my grandparents; they died in Scotland long before I made my way over there). On a strange note, and totally unheard of, his seeing eye dog was a Scotty dog! With the image of his father's very real and accepted disability, my father struggled with his own problems. He was, as I've said before, a loving and gentle man and wonderful father, despite these difficulties.

My father suffered in silence for the most part, not due to cowardice or weakness, but due to the time in which he was living. It is so sad to me that he had that burden. And I am guilty of some of that too, but I have started to change that in the last 10 to 15 years in becoming more vocal and declaring this affliction as real, treatable, and in need of proper designation.

My father died when he was 45. He was robbed of the chance to try Topamax and Botox treatments and find out if the PFO treatment applied to him (he maintained his British citizenship all his life, so he would have qualified for the surgery).

While I don't advocate complaining or wasting time feeling sorry for yourself, I do think you have to be honest about your situation. You won't get the treatment you need if you don't. Being stoic has served me well – and I have to thank my Dad for teaching me how to not crumble like the guests on Oprah – but it's a different kind of stoic. Stoic with a twist. Yes, I can do lots of great things, but sometimes I have to stop. And when I do I will have a good reason... not an excuse, but a valid and good reason. Because what we live with is real and we need to pat ourselves on the back sometimes at the things we achieve.