"What lies behind us and what lies before us are small matters, compared with what lies within us." -Ralph Waldo Emerson
I think my iPod is sending me subliminal messages.
Today I heard a song that took me back to being a kid. It was a song that my childhood friend and I would play on the jukebox at the local pizzeria. I don’t know how often exactly but it feels like we would walk there once a week with our mothers, get a slice, and then get to play a song each. The rule was we couldn’t leave until we each heard our song. If someone was already playing one, we had to wait which felt like an eternity back then at four or five years old. If I close my eyes now I can still see what the floor looked like, what it smelled like in there, even our favorite table. I imagine myself wearing pig tails in my hair with those enormous plastic bubble rubber bands tied tightly. I remember calm, happy, easier times. It brings a sense of joy remembering those days. Thinking of those little girls we were and all the things we did together always brings a smile to my face.
Our jukebox songs were always the same. I would always play Madonna’s “Material Girl” and my childhood best friend would always play Huey Lewis and the News’s “The Power of Love.”
As we grew older, my friend moved away and although we kept in touch life changes you and gets in the way. It is not intentional but it happens even with the best of intentions.
Since I have turned thirty this past December, I have found myself on an incredible journey. I would have normally thought and hoped it would be traveling some place exotic but instead it has been on a path towards healing and wellness. I have been suffering for many years with chronic migraines and since November I have been in my own personal hell.
I have been hospitalized, drugged within an inch of my life, and even on some very low days prayed that it was an aneurysm that would just burst so I could be out of pain already. I have gotten very sick on vacations I took last year to the point I had become afraid to travel, even with family, and that was my breaking point. Travel and photography are what I live for and if I can’t do that, even when I push myself to my limits, I just didn’t see the point.
But my story has a happy ending. Well it is not an ending exactly. It is more like an intermission. Act I is over, I hope.
I have really amazing friends. They understand when I can’t pick up phone, when I don’t answer emails, and that plans aren’t official until they see me in front of their face. They support me, distract me, and love me unconditionally. I can vent and complain. They know when I have a doctor’s appointment and are at the ready to hear how my medication has changed. I look up to and turn to them as my life lines. They deal with my triggers and what I have to do to avoid them. They know that when they are with me they will be freezing with the air conditioning on no matter the temperature outside and likely be in the dark to avoid bright lights.
But the biggest surprise and gift from a friend was the reemergence of the aforementioned childhood buddy. It all started with a beautiful, really beautiful birthday email. It was so lovely and touching I had to photograph it and put it in the book I am making myself to commemorate this year. Then we starting writing back and forth. That’s when the real surprises came. The letters would come and say the things I needed to hear. I couldn’t figure out how she knew how to help me. But she did. It is amazing how an email from out of the blue can lift your spirits, change your mood, and brighten your day. I believe that “Johanna’s daughter” is largely responsible for getting me out of the depression that came with all that pain. She always told me how proud she was of me for having the courage to forge ahead and take on whatever I needed to get well. It was like whenever I read her emails I felt stronger and less alone. I believed what she said because of the obvious love and sincerity in her words. She has shown me the real power of love.
It has been a wonderful journey as this year of being thirty I am doing a complete three hundred and sixty degree turn and returning to the people and things I loved as a child. I guess that was the purest time of my life. It is true if you love something and set it free and it returns it was meant to be.
I also have a strong family support system. Right now I have three cousins particularly in mind. The first two I am thinking of are my first cousins and are really more like sisters. They are my “Jerrys” and will know what I mean. They are constant cheerleaders checking in, sending cards, text messages, anything to lend a hand or show some love.
But the next cousin I am thinking of (yes I am Italian and it is like that movie “My Big Fat Greek Wedding”, I have one hundred first cousins) did something last weekend that deserves an honorable mention. This cousin is the mother of my godsister and always checks in to see how I am, how my doctor appointments go, and in general makes me smile. However last weekend she did something remarkable and I am not sure she is even aware of it. Last Saturday I got an email from her, very casual and loving, but at the end she said “hope you have a migraine free weekend.” It reduced me to tears. It still does. I don’t think she could ever appreciate what those seven words meant to me. For someone who is not in my everyday life, and doesn’t spend her time reading migraine literature on the internet, those words came from her heart. They were the words a migraine sufferer dreams of hearing because it is what we are always silently praying for. It is what we work day in and day out on. Those words encouraged me, breathed new life into me, and gave me the perfect way to start to my day. It was more than I could ask for. And it deserves acknowledgement.
In order to avoid a migraine there is much work to be done. The progress that I have made is in no short way just luck. It is in large part due to the work done by my brilliant doctor at Montefiore Medical Center in the Bronx, New York and by myself. It is a full time job and I wish I got paid for it. I take no less than fifteen pills on an average day just to attempt to prevent a migraine. I take more when I get one and attempt to avoid going to the hospital from pain that I can’t break. That is the worst case scenario because that puts me at risk for a stroke among other things. I also have to adhere to a strict diet and haven’t had a sip of alcohol in almost two years. I have to do my best to avoid the things that I know trigger my migraines which for me are humidity, rain, cigarette smoke, the smell of alcohol and chemicals, cinnamon, spices, not eating, not sleeping, sleeping too much, reading too much, etc. These change on a regular basis and to keep up I keep a detailed log for my doctor to go through. It is a process and although I have made progress I am nowhere near done and have to accept I may never be. But I am one of the lucky ones.
On a recent doctor’s appointment I expressed that I have finally been able to read at my leisure for the first time in nine months. I have been able to drive somewhat, although I try never to do it alone because of the medication I am on. I am writing again. These may be things you take for granted but they reduced my doctors to tears because now the life was back in my eyes. Because, now I had more of a life than I have had in quite a while. Even though I am thirty I have to accept that my head rules the roost and when it is done and tired I have to say no. No I can’t do happy hour, no I can’t go out both Saturday and Sunday, no I can’t get home that late. It is a sacrifice but it is what I have to do to survive. It is not a choice. I think people who do not understand the situation forget. They forget because they don’t see it. You’re aren’t bleeding or limping. Unless I am crying (which only happens once I have had it and panic) you look fine, you don’t look sick. The pain isn’t obvious and that’s when you don’t get the sympathy or support you need. But that is what is most important for migraine patients. Sometimes encouragement and love is all we have to get us through. This is why I read somewhere that for migraine sufferers the suicide rate in one in four people. Pain is real. But so is love. And it’s amazing how little it takes to feel that and how it changes your outlook on everything.
This is the reason I decided to take this moment to share these feelings and hopefully teach someone else how to lend a hand to someone they know who is in pain. It is migraine awareness month and an appropriate time.
So, Huey to answer your question yes I do know the power of love and it is a magical thing.
As usual I'm speechless. As a mom I think I'm there for you. But some days I feel helpless, especially on those bad pain days. I pray that one day my girl will feel like she use to and that I have the strength you need to get you thru it. So on those days when you think I might not be there for you, always know that I am and always will be. xoxoReplyDelete