Love is an incredible feeling that some dedicate their entire lives to seeking. Love is a mysterious, undeniable force that at times can be confused for infatuation. Sometimes love and infatuation go hand in hand. When life’s trials and tribulations expose true love because of its unconditional nature, there’s no doubt in one’s mind that you are in love.
Finding your one true love is a mission most of us spend our life seeking. For me it happened in college. Everyone saw her as perfect, and so did I…even after learning that the person I had fallen in love with has a debilitating rare condition.
From the outside, you wouldn’t suspect she lives in chronic agony. She smiles through regular headaches, muscle spasms, neuropathic pain, mild and then sudden nausea; and that’s just the tip of the iceberg. I don’t know half of what she experiences, what she suffers through because she doesn’t tell me. I only know what I observe. She doesn’t tell me because she claims she doesn’t want to be any more of a burden to me, than she already believes she is.
All relationships take work, which is quite an understatement when your spouse has a rare condition. Like every other relationship, there are ups and downs, good times and bad times. I am not going to sugar coat the fact that being in love with my wife is made more difficult by her chronic, progressive rare disease. I am not going to lie and say that I don’t think of leaving my marriage for the freedom that would come from no longer being a caregiver. There is no point in lying and sugar coating the challenges of being a caregiver to my wife. The truth opens the doors to understanding; and understanding eliminates judgements and potentially regrettable actions.
The truth of the matter is that being in love with someone with a rare condition is even more challenging than being in love with someone who is healthy. My wife, the love of my life, is in constant, unrelenting pain every day. Even with today’s modern medicine, she has yet to receive relief from the pain her condition causes her. Her body is ‘wired’ differently than most. Late at night, under the covers of darkness, she allows her tears to flow with teeth clenched doing her best to not wake me. I do my best to make her think she is successful in that effort of consideration for the fact that I need to wake up early to go to work in the morning.
I battle with the feeling of helplessness often. There’s nothing in my power that I can do to cure her…to make her better. While she’s alone when it comes to fighting the relentless symptoms of her condition; she isn’t alone when it comes to the mounting bills that stack on our dining room table. She isn’t alone when it comes to surviving this world. I will be here to massage her muscles as they spasm uncontrollably. I will be here to provide her warm pads as she does her best to work through the pain. I will be here to do the food shopping, to go to work and earn the money we need in order to pay our living expenses, her medical expenses, save up for a vacation every other year. I will be here to bring as much normalcy, hope and joy into her life possible.
I look forward to the days when her pain doesn’t leave her bedridden. On those days we do our best to enjoy the things that ‘normal’ couples take for granted like exploring a new section of a local park together, getting some ice cream, catching a movie, impromptu BBQs, etc.
I wasn’t thrown into the rare disease world. I don’t have a rare condition myself. I don’t have any children born with rare conditions, nor did my wife not know of her condition before we met. I signed up to become a member of the the rare disease community because I fell in love with an amazing woman that taught me how precious life’s moments are with our loved ones. All I want to do is enjoy the life my wife and I have built together for as long as her body will allow.