This year is one of the hard ones. I can’t do anything but acknowledge it and cope with it like any other fighter.
Probably just as hard as the disease is to bare, it is also the emotional burden that is just as hard, if not heavier to bare. I have watched as my husband has fed me, rubbed me, dressed me, bathed me, carried me and comforted me. At the same time as I am grateful for his love and nursing, I do miss being his wife and not just his patient. I miss how we would hold each other with passion and not with care and trepidation.
The past weeks have given me a break from the usual minute by minute pain and struggle and so I said to my husband, I want to feel like your wife again and not your patient. He smiled and knew exactly what I meant. We both remember what it was like to be a couple, doing what couples do and feeling like couples feel.
So for the past few days he has helped me put on some ‘nice’ clothes, he helped me do my hair and put some make up on. He helped me into the car with pillows, heat packs, TENS machines, sick bags and meds. It felt good just to be out in the world, no matter how scary and painful it was. He told me I was so beautiful and I smiled. I felt as beautiful as I have ever felt these long nine years. I felt as beautiful as I will ever be, but more than this I felt like a couple again. We stopped for coffee. And then something else happened… Something that I thought I would never do again, and I still wonder if it was worth it; but at the time it felt like it. My husband took me to a lingerie store!
Years ago I loved lingerie and spent way too much money on it. That stopped when I couldn’t put lovely lingerie on, let alone wear it. I stopped feeling desirable and I stopped wearing lingerie. End of story. Or I thought it was. Today while picking up some things we needed we passed a lingerie store and we decided to go in. I braced myself for the usual stares that come from being in a chair and looking like I shouldn’t be interested in buying lingerie, but it didn’t come. Instead a young lady by the name of Kate came over with a big smile and a beautiful attitude. She smiled, openly. She didn’t judge, and unexpectedly I didn’t feel out of place. I didn’t feel anything other than a wife. Kate lay out some lovely pieces in front me and she smiled at how brave I was to be there together with my husband and carer. I told her about how I blog about my journey and that she will never know what a huge hurdle it is just to be here. She smiled. I said, “if more people where like her and made EVERYONE feel welcome and accepted, no matter how sick, disabled, disfigured, injured, crippled or in pain they were, that it would be easier to feel less alone and unwanted.
You see a big part of how we feel about ourselves is a reflection of how the world sees us. When the world pushes us away, turns away, pretends we aren’t worthy of kindness and consideration many of us mirror these actions on ourselves.
I know I don’t NEED lingerie to feel special and like a wife. I have learnt we don’t NEED a lot of things in this world as much as we need dignity, love and acceptance and those things can’t be bought. Today I might need my husbands help to put on pretty things and wear beautiful lingerie or go out in the world but it is in these little ways that he makes me feel the most loved and the most desired woman in the world!
To my darling husband,
With endless love and thanks,