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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic has 8 replies, 4 voices, and was last updated 9 months ago by Jennifer Lewis.

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      • #16550
        Kevin Schaefer
        Keymaster

        I didn’t know about this documentary until I read this article, but this is pretty cool:

        https://smanewstoday.com/2019/01/14/provocative-film-explores-love-and-sexuality-among-the-disabled/

        I think it’s great that these filmmakers are interested in exploring the topic of love and disability, and I look forward to seeing this film. It’s definitely not a subject that’s explored often in mainstream media. When it is, the able-bodied partner is usually portrayed as a saint for dating someone who has a disability.

        In reading this article, did anything stick out to you? I know for me, I do sometimes feel down because I’m not in a romantic relationship, especially when half of my Facebook friends are getting engaged haha. Still, I believe confidence is key, as well as being content with myself. A good relationship will come at the right time.

        What are your thoughts?

      • #16576
        Adnan Hafizovic
        Participant

        No one comment this topic?Well I start first.These kind of documentary must be more,to show all people how we have need for sex and love,because a lot of health people think that we haven’t sexual desire.It’s not comfortable for me,When I meet a woman, I must say,hi I’m Adnan and I can have an erection.That’s a joke,but also is the truth.Like you say Kevin, all our friends are or got married and we staying alone.It is hard for us to find love partner,it hurt but what can we do,have patience and fight.We can’t force someone to be with us.And yes I forgot,how many we have support from our family and friends to find girl or boyfriend?

        • #16587
          Kevin Schaefer
          Keymaster

          I agree that more films and books on this subject would be great. It’s a topic that isn’t widely discussed outside disability communities, and it really should be.

      • #16595
        Kelly Miller
        Participant

        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.

        • #16618
          Kevin Schaefer
          Keymaster

          Thanks for sharing Kelly! That’s a great story, and really encouraging. I think the anxiety when it comes to sex is true for most of us, myself included. It’s a matter of finding the right person who you’re comfortable with when it comes to that part of the relationship. I’m glad you found that person in your husband.

      • #16628
        Adnan Hafizovic
        Participant

        Thanks Kelly,you really have marriage that i want to have it.Life partner who is our love and caregiver.

      • #16632
        Adnan Hafizovic
        Participant

        And Kelly how your parents reacted when you told them you had a boyfriend and that you would marry?

      • #16642
        Kelly Miller
        Participant

        Adnan, it was very interesting about that. My parents got divorced when I was 25 (after 25 years of marriage😥), and I lived with my mom & my aunt after that. We shared a house that my mom built with her, so the specs were done to be very accessible for me. I didn’t meet Jack until I was 32. When I told my mom he was coming down from Cincinnati to visit for the weekend, I think she was a little skeptical. She was one to not say much about her emotions unless it was anger, so I was kind of left guessing. I didn’t care tho because I wanted to meet him! When he got there, she didn’t seem to have any problem letting me go out with him by myself.😮 I made sure I told her where we were going, but really, he could have been a serial murderer and I would’ve been his easiest target. Fortunately, he wasn’t that.

        When I told her 10 months later that I was moving to Cincinnati, she was not happy at all. That’s really kind of an understatement because she definitely let it be known that she thought I was crazy to pick up and go to a city where I didn’t know anyone to help me. She tried to say things like, what if we break up, what if he hurts me, what if he doesn’t take care of me like I need it. Sometimes you just know in your heart when things are right, and I tried to explain this to her, but those kinds of feelings are very difficult to communicate to someone else if they haven’t felt them before. I was always a rebellious daughter after high school, so her objections only made me want to do it that much more. She was finally won over by him after I lived up there for a few months. I had gotten my job transferred and hired caregivers all on my own. I think seeing me so determined & prepared helped her know that I would be okay.

        My dad was pretty laid back about the whole thing. He knew that he didn’t have much say since it was him that moved out on us. When I told both of them that we were getting married a year and a half after moving to Cincinnati, they were very excited. I think they didn’t mind us living together but still had a little of that old-fashioned mindset that you should be married if you’re going to live together. My mom passed away 12 years ago knowing that Jack was taking very good care of me! My dad is still living. He is 5 states away, but he respects Jack and also is glad to know that I am happy & secure.

      • #17775
        Jennifer Lewis
        Participant

        I watched this the other night and it was pretty good. It did have some slow spots, but I feel everyone should see it. Almost everyone they profiled had upper body strength and had become disabled later in life (which I think would be harder), which is unfortunate. Oh, and it’s available on Amazon Prime for $12.99 as well as iTunes (I assume).

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