This year’s holiday was great for me. I saw my entire family through a week’s time.
There are no words to express how much I love my family and how seeing them is far more important than any destination vacation or expensive gift. But, there is always a drawback, a problem or a fear. I am not talking about family squabbles over the white meat on the turkey or hurt feelings about that ugly (inappropriate or meaningless, you insert the word) gift you get. I am referring to those times when the games are too loud or everyone else is drinking, going geocaching or to the movies and you suddenly feel the weight of your condition bearing down on you.
If you are anything like I am, the first instinct is to push back out of anger. I used to be able to hang in with the loudest game, eat what I wanted, drink vodka and enjoy it and smoke a cigarette outside in the cold air with other family members. The louder the Christmas, the more family members and dogs, the better I liked it. Those holidays made me really feel connected and happy. The confusion was part of it, just like the liqueur, food and games.
Now, none of this is available to me. The fifteen tins of fudge, buckeyes and sugar cookies are off limits because I developed Celiac Disease as a result of the epilepsy. The noise from the family games echoes through my brain in a very unpleasant way. Just smelling vodka causes pain to shoot through my head. And as for smoking, that is a sure-fire trigger for a bad seizure. In other words, the things that used to provide fun, happiness and a sense of connection are now responsible for physical pain and suffering. I won’t even go into sleep deprivation and holiday shopping under fluorescent lights.
So, how do we (and I am assuming that I am not the only one of us) deal with the substitution of pain for pleasure? I am not sure I know the answer. What I do know is that if you spend the entire holidays feeling sorry for yourself or angry about the change in your body, you will miss some of your life’s most important moments.
I didn’t smoke a cigarette outside with my brother, but I did go for a walk with my husband in the cold night air and watch the stars come out. I didn’t get to drink vodka, but I found I really didn’t need it to appreciate the joy of the moment. And while I did miss out on some of the activities, I found my family was pretty generous about trying to go the extra mile to make me feel included.
I would like to think that at some point I won’t be angry or afraid of what I will miss, how I will appear to others by not participating, or left with a feeling of being left out. The condition is an adjustment in our lives that requires thought, planning and self compassion. It allows us to develop grace in the face of difficulty, embarrassment and just sadness.
This New Year’s resolution will be to live my life with a complete lack of regret or feelings of deprivation. And who knows, perhaps in doing this I will be able to discover more moments, more joys than ever before.