Being my wife's biggest fan doesn't seem like enough
My wife has Scleroderma. Never heard of it? That's OK, spell check hasn't either. So what is it? Scleroderma is an autoimmune disease that involves the hardening and tightening of the skin and connective tissues. There are two main branches of Scleroderma, neatly packaged for you in this chart that can also be found on the Scleroderma Foundation website.
In the short of it, localized Scleroderma generally affects areas of the skin and muscle while systemic scleroderma not only affects areas of the skins and muscle but also internal organs and the esophagus and can lead to sclerosis, or hardening, of the internal organs.
My wife has localized scleroderma and of the two major branches of localized she has both morphea and linear, as well as en coup de sabre which forms a crease or line on her face. She was diagnosed when she was six years old and was the first child officially recognized with the disease. She became the Scleroderma Foundation's poster child, went around the country speaking on talk shows, spoke on capitol hill to ask for funding for research of the disease, as well as attended the yearly conferences as the face of the foundation.
As a teenager she was the foundation's first teen ambassador and presented workshops and seminars at the conference for kids and teens experiencing what she has gone through growing up with a rare incurable disease. She was also awarded the Point of Light Award by Charlie Crist - then republican governor of FL - for exemplary volunteerism.
My wife is an amazing individual who always fights for the underdog and displays an intelligence and wisdom I aspire to. I am her biggest fan and she inspires me to be a better person beyond myself and my own ideals. She continually pushes for equality and fights for the underdog and with pride I follow her lead and join her.
She has had her fair share of battles as well. Besides the numerous surgeries and medications she has been on, she's battled depression, body image issues, an eating disorder, and confidence issues in accepting who she is as a person. She also battled poverty, a broken home, dysfunctional family, an absentee father, and ignorant comments from adults who should know better - those comments still come in to this day.
All of this has made her the strongest person I know, capable of withstanding gale force winds of a Category 5 hurricane status, mentally speaking.
So where does that leave me?
While most folks see her in her most battle tested armor, I get to see her in her most vulnerable and weakest moments. While this is my time to shine I don't always do well. I'm not interested in pacifying her or simply glossing over her hardship. As of late I've felt like I've been struggling to be the best husband I can be.
By now the majority of American society knows that the ice bucket challenge is helping to raise support and awareness for ALS. If you don't I will kindly tell you to withdraw from under your rock and look it up on the internet. There you can find what the challenge is, what ALS is, and the varying opinions as to why or not, and what the ice bucket challenge says about society today and/or my millennial generation.
The struggle for my wife is not that society as a whole all of a sudden cares about those suffering from the horrors of living with ALS. ALS is a terrible disease and worth raising money for. Her struggle is watching all of the people she considers friends - who don't know anyone with ALS do the ice bucket challenge and donate to the ALS Association - not seem to care about the incurable disease that will inevitably contribute to her death, a disease they know someone has, her.
How can I fight that feeling of abandonment? How can I, the antithesis of all that made her who she is, a healthy adult male from an upper middle class family, whose parents are still together, and who has zero disease, how can I help her? How do I counteract the feelings brought about by her friends, some of whom are mine also, not donating money to support the research and study of her disease?
I don't have answers to those questions, at least not satisfactory ones for me. I hope that writing this will help me and it probably will but I know I'm not alone in this. This latest social media trend has made me realize something I knew but never recognized before.
I am the spouse of someone with an incurable disease. That sentence doesn't sound complex but it is. This disease affects every area of our lives from how easy it is for my wife to get sick or hurt, to how often she gets sick, to would it kill her if we had children and if so would we be ready to make a choice that could result in the death of her, our child, or both, all the way to how early could she die and if we did have kids how will I raise them without her.
While these things are scary to consider I wouldn't have married anyone else. My wife is the greatest person I know. She has faced some of the toughest circumstances life in America has thrown at her and while she'll read this and say that it wasn't that bad the truth is that it wasn't easy to get where she is but she got there and it's my job to keep there.