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This topic has 10 replies, 5 voices, and was last updated 2 years, 5 months ago by Kevin Schaefer.

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    • #14236
      Kevin Schaefer
      Keymaster

      I couldn’t help but get all the feels from Brianna Albers’ column this week: https://smanewstoday.com/2018/09/24/sma-adulthood-tampering-invite-bridesmaid-existential-crisis/?amp. My siblings and cousins are all either married or in serious relationships, and it’s hard not to compare yourself when you’re the lone single person in your family. Many of my friends are getting engaged and married as well, and that lingering thought of “why am I still single” can be gut-wrenching.

      Dating with a disability is hard, and there are so many barriers we have to break past that others don’t. I’m not afraid to admit that I’ve had times when I’ve doubted myself and longed for love, and that many of these sessions have ended in binge-watching “How I Met Your Mother” and “New Girl” and stress-eating. It’s ok to admit those things.

      It’s hard, but I’ve learned that comparing yourself to where others are in life is the worst thing you can do. The idea of a “normal” trajectory for your life is really stupid, and I’m glad I’ve learned that now. Whenever I’m down about being single, I think about all of the areas in my life that are great: my career, family, friends, writing, etc.

      Still, it’s ok to feel down about this stuff sometimes and vent. It is harder for us to navigate dating and relationships, and our frustrations are valid.

      What do you all think? Could you relate to Brianna?

    • #14271
      Adnan Hafizovic
      Participant

      it would be nice that some people with sma who get married,to write us about their experience in marriage.

    • #14284
      Ryan Berhar
      Keymaster

      I can definitely relate. I used to feel just crushed by what I didn’t have. Whether it’s a wife, kids, my own home or whatever else. Not to get overly deep, but what I ultimately learned is that none of those things will bring me lasting contentment. If I get those things, I’ll just start focusing on something else I don’t have. So if I’m ever discouraged by what I don’t have, I just remind myself that I don’t need that to be content. Changing my mindset has helped immensely.

      • #14287
        Kevin Schaefer
        Keymaster

        I agree that it’s good not to put all your hopes into something that may or may not happen. At the same time, it’s important to have confidence in ourselves and remind ourselves that we are capable of romantic relationships.

    • #14291
      Angel
      Participant

      I am not twenty-something, I am in my late 30’s. People say I never look my age, which might be a good thing when you have a child’s disease. When I was diagnosed with SMA type I, it was something you died of, not lived with (pardon the dangling participle). So I put off ideas and relationships until my twenties because honestly I had more important things to accomplish. I have had a few relationships now and I wish I could say something to Brianna or maybe my younger self. It is not that I know everything about intimate relationships, I have never been married and none of mine have lasted more than 6 months. But at 16, 18, and even 21 years old, knowing that those relationships were even a possibility might have helped me to be more confident. Because that is a huge part of dating and relationships, being confident! Believe that you have something to offer someone that is just as valuable as what they can offer you. No, we cannot offer the same things that most people bring to the table. However, we can offer something different. SMA comes with an IQ boost, (at least that is what they tell me after they give me my IQ score) as well as hypersensitivity. Both of those things can be incredible attributes in relationships. The brain is the sexiest organ. Imagine it! Most of us have been through a great deal. So using that empathy to understand others and their struggles can be very helpful. There is no Mr or Mrs. Right. We have issues, yes. 90 percent of them are probably physical. So we have to realize that anyone that is going to be able to understand us enough to get close enough to matter is probably going to have issues too. Maybe those issues will be physical (that might actually make things more complicated) but maybe they will not be. Maybe they will be emotional, mental, spiritual… but pain is pain! And pain is probably something that we can understand more than most, so use it. Also, find something for which you share a common passion. Passion can lead to passion. Common interest are what you have with friends. Common passions are what bring people together! I was lucky, I found out that curiosity was my passion. I wanted to learn anything someone could teach me. Music, art, comics, physics, human anatomy… I found people who had a passion for these things and their passion became mine. I had exactly the same romantic ideal as Brianna, someone to look past my physical limitations. But found myself not looking past anyone else’s problems. I am not saying scraped the bottom of the barrel, have standards and have reasonable expectations. Numerically, having a wheelchair, alone, drops us down to a 3 (a drunken equation I hashed out with a few buddies) but intellect, imagination, openness, and confidence (and maybe breasts, sorry guys) can easily get someone to a 5 or 6, depending on how much they have of them. So when looking for a partner, aim accordingly. Again, who am I to tell you about dating or relationships. I am just saying what I would have said to 15-year-old self. Maybe it would have helped. Maybe it would not have changed a thing. So after a very long 1st post, I apologize and accept your gratitude (see confidence). Maybe this will help you, maybe it wont, or maybe you are thinking that I am full of it. Let me know!

      • #14292
        Ryan Berhar
        Keymaster

        Well said!

      • #14302
        Kevin Schaefer
        Keymaster

        Hey Angel, thanks for commenting! You make some great points here, and I appreciate your honesty.

        I agree that shared passions can go a long way, and also that those of us with SMA often have a unique perspective and abilities that others don’t. Our brains can definitely be attractive!

        Thanks again for sharing, and feel free to tell us more about your story in the welcome forum.

    • #14294
      Adnan Hafizovic
      Participant

      it has one song”Love hurts”,yes love can hurt,specially us with sma,i think we are so full of passion and love.Someone will say that love and marriage isn t so important,if isn t important why most people get married.In love we must be brave and take some risk.I must admit if I was braver in younger years and had so thinking like now I have ,probaly my life would be different.

    • #14301
      Michael Morale
      Keymaster

      Hi Angel – I think you’re well spoken and have a great idea as to who you are. Everyone is different, but the feelings you spoke about are feelings we have as SMA patients. Relationships are tough, especially if you have SMA. I myself am still single. I’m not actively looking, but if and when the right person comes along, fantastic.

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