Why do you need a guide? You don't really but sometimes its nice to have some clarity on how to handle certain situations and reduce the number of douchebag moments.
I don't look like a Sickler. What does that mean? People assume that because one is a Sickler one must look sick......all the damned time!! In the book that traumatized me - for a refresher read this, it indicated that Sicklers had the following physical characteristics
1. Yellow skin and yellow eyes
2. Buck teeth
3. Predominate foreheads
4. Inflamed joints. The list was endless.
I like many others don't have these physical characteristics, so friends & family tend to forget.
Its a double edge sword. While Sicklers don't want to be reminded of what they are, they need for their friends & family to remember. Why? Because in a bid to be 'normal' some Sicklers take risks to be in-with-the-crowd. Everyone goes through this........ its part of growing up. The only difference is for Sicklers or anyone with a pre-existing condition the repercussions tend to be predictable and more severe. In my previous posts I've talked about the short term effects of sickle cell pain. There are long term implications each time a Sickler has a crisis, one of which is Bone Sclerosis.
Bone Sclerosis otherwise known as the bruising of the bone. Research has shown that there is a positive correlation between bone sclerosis and crisis episodes. In essence, just because you don't see anything on the outside, believe that there is some damage going on on the inside. Side effects of bone sclerosis can range from the 'bowing' of the vertebrae and the slow corrosion of the head of the Femur. When you are a young spritely young buck you don't think of these things. When you get older...... TRUST the fear of growing shorter or getting your hips replaced is no joke!
Back to friends & family. In my experience one of two situations can occur;
Its a double edge sword. While Sicklers don't want to be reminded of what they are, they need for their friends & family to remember. Why? Because in a bid to be 'normal' some Sicklers take risks to be in-with-the-crowd. Everyone goes through this........ its part of growing up. The only difference is for Sicklers or anyone with a pre-existing condition the repercussions tend to be predictable and more severe. In my previous posts I've talked about the short term effects of sickle cell pain. There are long term implications each time a Sickler has a crisis, one of which is Bone Sclerosis.
Bone Sclerosis otherwise known as the bruising of the bone. Research has shown that there is a positive correlation between bone sclerosis and crisis episodes. In essence, just because you don't see anything on the outside, believe that there is some damage going on on the inside. Side effects of bone sclerosis can range from the 'bowing' of the vertebrae and the slow corrosion of the head of the Femur. When you are a young spritely young buck you don't think of these things. When you get older...... TRUST the fear of growing shorter or getting your hips replaced is no joke!
Back to friends & family. In my experience one of two situations can occur;
- Friends/family tend to wrap Sicklers in cotton wool. While this comes from a good place it does get fucking annoying!
- Friends/family forget and push Sicklers (unwittingly) into compromising situations.
I am the first to admit that in the latter situation the Sickler should take on the responsibility of just saying no, but it does get wary when one has to say NO all the time. And this leads perfectly into where being a young, stupid whippersnapper comes into play:
So what is a Sicklers Kryptonite? The concept of being 'normal' - to have cold showers, drink only when thirsty, get cheap travel insurance, run on a treadmill for more than 20 mins, survive on less than 6 hours sleep, drink their fellow drinking buddies under the table, step outside in the cold without a sweater/coat, go 6 months without having to see a hematologist, ophthalmologist or an orthopedic doctor..... The worse thing you could do to a Sickler is to make them feel like they are not normal...... but the reality is they aren't.
Over the years I have perfected the art of my 'play by ear' system when it comes to social commitments, much to the annoyance of friends and family. The reality is no two days are the same, one day I could wake up full of energy, and in a split second a crisis could start. So I cancel on my friends last minute and am hesitant to commit, this usually leads to frustrating conversations where I come off as a mean-spirited stubborn cow. Those conversations irritate the fuck out of me. The easiest thing for me to do would be for me to state the reason why I can't come out is because of the Grinch.......... but that would mean that I'm not normal. So as a family/friend, if I say, I can't come out....... accept and respect it.
So what do you do when you happen to be with a Sickler during a Crisis?
Its funny..... I don't like having friends and family around me when I'm in 'full flow'. Why? Apart from it not being a fun time, I find myself comforting and re-assuring my friends/family. It is exhausting. I have been know to 'disappear' - what do I mean? There was a incident where I was staying over at a friend's house in Stratford. The Grinch decided to make a house call and rather than alert my friends, I snuck out of the house, and drove.....in pain to Lewisham hospital. That is roughly a 10 mile drive. Needless to say, my friend and her now husband were very upset with me.
So what do you do? Just be supportive. We've (Sicklers) have a lifetime's experience with this. So don't panic, be strong, and LISTEN. Tosin Coker states this eloquently, so have a gander.................
Toodles!!
