I suppose, first of all, I should be divulging on how I believe we should all hold ourselves worthy of being loved, no matter what disability we have or have not. We need one another as we decipher this comedy/tragedy where we ALL are dying and, likewise, we all are living, dancing and being.

Having a relationship with someone who has a disease such as cystic fibrosis is no easy venture, I would imagine. I’ve had a couple of relationships in the past and I’ve learned a lot about human nature through how each has handled situations relating to my sickness. There is no wrong way or right, there’s only the way that works for you.

I dated someone for 4 or 5 years. You lose track sometimes when the ending and beginnings keep happening towards the real ending of a relationship. This was the first relationship I was in, and I was in love. I remember Drew finding out that I had cystic fibrosis and coming into my dorm room while in college in Lake Tahoe. The look in his eye changed when he made the connection between what the disease actually was and what I dealt with day in and day out. He sat with me for a while to take it all in as he asked questions to gain an understanding while I performed my vest therapy in front of him. I witnessed his tough outer shell, which I had loved, melt away slowly. This soft inner soulfulness became something I had learned to love even more. We began dating soon afterwards. My disease was never a problem for him and he always made sure I was comfortable in my surroundings. He never tried to cure me.  He would yell at the doctors, nurses, hospital staff when I couldn’t and didn’t have the strength to. He would come close to getting kicked out of the hospital while defending me, but the good nurses saw through this tough exterior and always let him stay. Charmer. Sometimes, he would yell at me for making unhealthy decisions. However, It would be wrong to not admit, he did participate in some of those unhealthy activities with me on the same note. We were the same in our embracement of this beautiful life. I believe the reason why Drew and I worked was because we were both in love with life and really didn’t have a set direction. He was open to the doors that appeared before him and I was as well. We could be semi-reckless while also in control, or so we would tell ourselves.

We ended up living together and adopting a dog, Roscoe. We grew together, grew apart, fell in and out of love many times, but my disease was never a problem. This is what I remember of him. We eventually grew apart, taking different paths. It’s interesting because I always remembered thinking of our future together and how he would probably outlive me with our kids and dog one day. Drew passed away from an unfortunate accident about a year and a half ago. We had been broken up for a couple years at that point, but always remained in touch and happy to hear of one another successes.

That phone call with the devastating news from his family in California was crippling to say the least. I looked up to half of the sky being a storm and the other amiraculous sunset. The world, was so uplifting in one moment; I was on the roof of my apartment building in Denver and then, instantaneously, I was in a dark yoga class, breathing not one breath for myself in the next moment. Remembering it all, every moment in Tahoe, every fight, every laugh, adopting a dog, living together, breaking up, throwing stuff, lies and deceit, love and passion and comfort and travels. Then, it was time to say goodbye. I had been so close to calling him the night before he passed away while caught in a moment of loneliness that only he could make me feel ok about. He could, in this weird way, make me feel ok to be alone. And now, he is all around me. I am never alone and he is never forgotten. I will always be thankful for everything Drew was and everything Drew shared with me.

I am telling this story because this is life. None of us know when we are going to die because we are all dying. A disease shouldn’t keep anyone from love. It shouldn’t make you more or less worthy of reaching for it, dreaming of it, seeking it. You will find the partners who want to cure you, the partners who are scared, and then you find the partners who will fight with you, for you and you will respectfully fight for them and their wondrous life.

 

Vicki Thompson is a 29 year old with cystic fibrosis living in upstate New York. She explores the arts on the daily, takes care of maintaining her health in every moment and searches for the moon when it is missing from the sky. Follow her journey on Instagram at vicki_lynn27.