Adnan, as I was reading this thread, I remembered that you had asked me about my husband, how we met, etc. I totally forgot until I saw this! I am so sorry.
I think it’s very important for these type of documentaries to be made so that regular people can understand that most everyone has sexual/emotional needs for intimate relationships. Having a disability of any kind doesn’t stop those needs from happening! We all need human contact, touch, & intimacy, and we have to be willing, as a segment of society, to talk about these issues openly. People don’t know what to expect or how we see our own lives progressing unless we bring them out for discussion. Should we have to teach everyone about our desires & dreams? No, in a perfect world, we wouldn’t have to do that. But we don’t live in a perfect world, and it’s necessary to educate people if we want them to understand.
I met my husband online back in the formative years of the Internet. We were in the same chat room on AOL (yes, but it was 1 of the only games in town at the time) and began instant messaging with each other. I lived in Atlanta, and he lived in a suburb of Cincinnati. We began speaking on the phone that same night, and by the end of the week, he came down to Atlanta to see me for the weekend. It was basically love the 1st time we spoke on the phone! I feel like, at that time, it was not as dangerous to meet someone online, and we got to know each other very fast by talking about everything. I told him on the 2nd day of conversation that I was in a wheelchair, explaining all about my SMA. I like to think that he was so head-over-heels that it didn’t even matter, but I know he definitely thought about it. However, he was totally comfortable with me from the beginning of our in-person dating, and he even asked questions if there was something he wasn’t sure about. He even offered to help me go to the bathroom that 1st night when we stayed out very late!
As for how I felt about dating before I met him, basically it sucked! I was 32 when he and I started talking, and I had definitely gone thru my spells of depression over not having anyone to share my life with up until that point. Oh yes, I went out a few times with some guys in college (we went to parties & such – I went away to school and lived in a dorm), but they didn’t really want to have anything to do with me once I said I didn’t want to have sex. I had thought about it a lot but wasn’t sure how it would really work for me, and since I was only 18-22, I wasn’t very comfortable with my own body image. My insecurity over the physicality of sex caused me to shy away from any kind of exploration until I was older, really until I met my husband. I constantly debated in my head if I should attempt to let 1 of the guys I knew deal with it but never really trusted any of them enough to make myself that physically vulnerable. It would’ve been a huge step for me, and I just wasn’t ready for it at that age. Personally, I don’t think the guys were ready for it either at their ages. You know, most guys in college are looking for that perfect girl with blonde hair, blue eyes, & an excellent body. My crippley SMA body wasn’t on their list of “types.” Looking back, I’m glad I ended up waiting for Mr. Right.
We’ve been married 22 years this August (been together 24). We moved in together about 10 months after we met online with me transferring my job to Cincinnati. He couldn’t leave Ohio because he had 2 young daughters from a previous marriage living in Cleveland. So, I became instant stepmom as well. For the most part, it has all played out to be very good. We helped raise the kids, and now have grandchildren. Jack (that’s his name) & I have had a typical marriage with ups & downs, but we both are extremely committed and love each other very much. He’s been here for the progression of my SMA as I went thru pneumonias, muscle-flap surgery for a pressure sore, multiple bandaging of other pressure sores, installing (that’s what I call it) of a mic-key feeding tube & suprapubic catheter, chest percussion, various meds, pain management, & numerous random hospitalizations. He is always by my side, taking care of me better than even my parents did. I would be totally lost emotionally & physically without him.
And, that brings me to the next phase of my life where I have to start thinking about what I would do if something happened to him – whether it be something that made him incapacitated or (God forbid) something to take him to Heaven before I went. It’s not pleasant thinking, and I can only do hypotheticals, but I think it’s important to at least mull over before I’m actually in the situation. I think about who in my repertoire of friends or family that would be willing and able to help me. I think about which nursing homes in the area I would want to go to. And, I think about how I would live my life in 1 of those facilities. We are currently living in a suburb of Houston, but we are seriously contemplating moving to St. Augustine Florida to live out our retirement years. We don’t have any friends or family there at the moment, but I know I can meet people without any problem and hopefully get some really good new friends. It’s risky, but I’ve pretty much lived my life taking risks, so why stop now. I pray every day that God takes me 1st, but I also know that He has His own plans for us, so I’ll have to trust and be patient. It’s actually my faith that has gotten me thru lots of hard times in my life, and I know that Jesus will tell me what I need to do when or if the time comes. I guess you could say that I really don’t have risks since I believe in Him to guide me.
That’s about all I can think to say without really boring you. Adnan, or anyone else, if you have other questions, please don’t hesitate to ask. I try to be an open book when it comes to what I feel & think about things.