Now before you get all heated over the title, just wait. I wrote it to emphasize what a lady more or less told me.
I got a phone call from a lady who worked for a breast cancer foundation and asked me to make a donation. Before I could get a word in she went on to glorify all the work they do and how they are trying to keep their organization going. I simply told her I already donate to Cystic Fibrosis. She then proceeded to say that although she doesn’t want to take away from any other foundation, something as simple as 20 dollars would help her. So then I asked her if she had even heard of CF and if she would try this hard to get awareness and donations for CF. I wasn’t prepared for what she was about to say. She had the audacity to say, “Well these women are fighting for their lives and they are struggling to make ends meet.” I lost all, for lack of a better word, respect for her. I snapped back, “I have Cystic Fibrosis and I fight for my life everyday! I struggle to make ends meet because all of my medications, doctors appointments, and hospital stays are not cheap! No illness is more worthy than others! If you can’t acknowledge CF, then I can’t acknowledge your foundation.” Of course she hung up on me. This is what makes me so mad. People think CF is nothing. They think it can just be swept under the rug. Because I don’t have cancer I’m not sick? Ok. Right.
I just want to say how perfect my boyfriend is. He is the first boy I’ve ever been comfortable around enough to let him watch me do all my treatments. He’s so supportive of me and my CF. When I tell most guys they freak out and run away, but he just holds my hand and tells me that my battles are now his battles and makes sure I know I’m not alone.
Shortly after this picture was taken he let me cuddle him while I was shaking on my vest and blowing nebulizer smoke in his face, all awhile he was holding my hand or had his arm around me and kept giving me forehead and cheek kisses. I’ve never been able to picture myself doing treatments in front of a boyfriend without feeling embarrassed or awkward, but with Jude it all seemed normal and perfect.
I just recently did a shoot for my finals of my friend. I had each picture showing a characteristic of Cystic Fibrosis (in which both her and I have). This one was my favorite. The rest can be seen on my Flickr or Blogspot.
What You Need to Know When Loving Someone With a Chronic Illness
I am completely and utterly in love.
The man who holds my heart is kind and generous, loving and honest, strong and brave. He is the best part of my morning, as I wake up to his innocent slumber, and the most secure part of my night, as I fall safely asleep in his embrace.
He believes in me. He pushes me. He catches me when I fall.
He is, by far, the greatest person to have ever come into my life.
The man who holds my heart has a chronic illness.
He was born with Cystic Fibrosis, a disease that, due to a an excess of salt production, compromises the digestive system, reproductive abilities, immune system, and lungs.
When we first met, I was not aware of what Cystic Fibrosis was, nor was I aware of its severity. When he told me of his disease, I assumed that it was not pleasant, but I never thought it would be something I couldn’t deal with as his girlfriend.
The beginning of our relationship, he was extremely healthy. There was no reason to believe that Cystic Fibrosis was a true threat to his health. I would sit with him while he did his breathing treatments, which consist of wearing a vest that shakes your lungs and mucus inside of them around, and breathing into a nebulizer for 30 minutes, two times a day. I would make sure I always had extra enzymes in my purse or car, just in case we went out to eat and he forgot them. I would watch him, and all of his strength, everyday and feel secure that Cystic Fibrosis would not take him from me.
Now, his health is wavering. His lungs have progressively gotten worse, and he has developed a new infection that can only be treated through an IV, which means he potentially has to leave our home, our bed, our security, to spend 3 weeks in the hospital. His cough takes over his day, making it hard for anyone, including himself, to get two words in without having to pause to allow him to cough in pain and embarrassment. His stomach hurts more and more, and so often he cannot eat because the pain is just too intense. His exhaustion causes him to spend more time sleeping than with me or his family.
I am by his side every step of the way, just as I was before, but now things are different. Now, Cystic Fibrosis is winning.
I feel powerless. There is nothing that I can do to alleviate his pain, and trust me, if I could, I would in a heartbeat. I cannot do anything for him except hold his hand and mutter ‘I love you’, offer him a warm embrace when he needs.
At least, that’s what I thought. Tears have been shed over what may happen to my boyfriend one day. Tears have been shed as I watch him embrace this unfair pain. Tears have been shed over the children we may not have, because CF is a blockade in that journey. Tears have been shed over my fear, over my stress. Cystic Fibrosis is an ugly monster that I wish I had the power to defeat for him and every other person who suffers. But, I don’t. And neither does he. And, I have learned, that the only real thing that I can do for him, the only real help I can give, is to just hope.
That’s all you really can do when you love someone with a chronic illness. You can be there to hold their hand, give them a shoulder to cry on, offer the brave face when they cannot. You can love them with every ounce of your being, you can cherish them for the amazing human that they are, but at the end of the day, the greatest gift you can give them is hope.
Hope that their pain will pass. Hope that years will pass and they will still be at your side. Hope that the future you dream of spending with them is in fact obtainable.
As any CF patient knows, this is the best friend to have! One not only to come visit you in the hospital, but to wear a mask around with you so you don’t feel different, and running around causing hospital shenanigans with you when you’re feeling up to it.