It’s life Jim; but not as we know it! … (#disability #Chronicillness and #Autoimmune)

My hubby and grew up loving and watching the original series of Star Trek. Which means we are morning the passing of Mr Leonard Nimoy (Spock) and one of his famous lines he would say to William Shattner when they landed on an alien planet. He would turn to his companion and reassure him that although the world was unknown to them, it was indeed life.

Many of our friends fail to understand the difference that AutoImmune diseases have made on my life and that of my marriage. My husband is both my husband and my carer, which evokes many different responses from people. I know that the instant that they see him pushing me in a wheelchair they are thinking about the quality of life it must be and how they might not want that in their own relationships. Could their own relationships survive such a change?

All I can say is that although I do NOT wish these diseases on anyone, including myself, it has made my marriage one of the most meaningful, strong, loving, caring partnerships that I have ever known in my life. I realized when I first ‘got sick’ I didn’t really know my husband. I hadn’t taken the time during my busy career to really get to know the person I shared a life with! As I lay bedridden I pictured the years unfolding and descending into misery and begged him to leave! I told him not to stay with me out of pity and go on with his life! He didn’t leave or pity me and that has been the most pivotal moments in my journey.

Today our lives look very different from when we first met. Today has doctors appointments, MRI’s, specialists, endless blood tests, constant medications and side effects, relapses, tears, pains and wheelchairs. But it also has laughing, smiling, hugs, lots of talking, lots of hope, lots of starting overs, lots of sharing thoughts and reading, lots of self reflection and meaningful interactions. In short. All the things I had hoped for in a marriage.

We don’t look like the regular couple on the street walking hand in hand or totting several children or rushing to drop off children and then off to work. Our nights are long, no two days are ever the same, our life is unpredictable and we struggle to plan events and outings with anything close to certainty; but we are never bored, never bitter, never lonely, never sick of the sight of each other and have nothing but complete respect for what each other goes through day in and day out.

I contrast this to the many relationships that have been shattered by these diseases and I am extremely glad that he and I took this journey together and our commitment and devotion only deepened. We also feel stronger in the knowledge that having survived the effects of these diseases, we can face anything together. He is the type of person that, if I wasn’t already married to him, I would want to know as a friend. I think that is important for both of us.

Although sometimes it feels like we share this marriage with a third party, I call her my sick twin, and we have to include and plan things around her, we don’t look at her as something that will defeat us or threaten us but in the same way as we would have treated a disabled or sick child (had we had one).

Even though illnesses entered our lives in the most profound way, we never stopped seeing the person we fell in love with. That person that made us smile, made us laugh, made us hope, made us dream, made us love. We were always still there and we never forgot it. I correct people who tell me that I am “lucky that my husband stood by me…” and remind them that luck has nothing to do with it. Marriage is work and commitment and going to places that you didn’t know you could go and dealing with the unimaginable for one reason and one reason only; love.

Hard times can either bring a couple together or tear them apart. Ironically these illnesses cemented us together, forever, in sickness and in health, ’til death do us part.

– to my darling husband and Trekky.

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