Life… grief, depression and disability

Everyone who has followed this blog or my Twitter in the last year knows that my heart is filled with sadness because of my mom’s passing. I have made no secret about the way losing my mom to cancer has influenced me. But, today’s post is not about the grief I feel, but a different kind of sadness.

Even before we learned that mom was ill, Master T started having problems with his stump. For those who don’t know: his leg has been amputated just before he turned 11 because of a birth defect. That means he has been an amputee for more then 40 years now and in the 16 years I know him, he has never had as many problems as he has now.

The problems with his leg started in September 2016. The prosthetic leg was not good anymore and he needed a new one, but it takes about two to three weeks from doing the cast to fitting the new leg. He got a new one in October 2017, but it wasn’t good. Neither was the stump. It had open wounds and seemed to be a bit infected. We only learned in March of 2017, after the ‘October-leg’ had been adjusted about 25 times, that the reason the leg was not good was because of edema in Master T’s knee and stump. By then he had been seeing a dermatologist for some months and with the treatment, the edema was gone and the ‘October-leg’ didn’t fit anymore. By then, ever since December 2016, Master T couldn’t drive anymore, which means he worked from home and still is. He had panic attacks that influenced him so much that he couldn’t leave the house without me at his side. I did all the driving for him and for my mom, which I did with all the love in my heart, but it wasn’t easy.

Early in 2017 our GP put Master T on anti-depressants, which totally killed his sex drive. He went back to the GP because he wanted to stop the medication, but the doctor only halved the dosage, because he wanted Master T to use it for at least a year. For about two weeks Master T seemed a bit more interested in sex and he fingered me once, but soon we were back to the same: no sex drive at all. Master T slipped into a depression, despite the medication. He was somber, almost sad and sometimes said things that made me wonder where the man I married was. Thankfully he too realized he needed to take action. By then he was seeing a psychologist for the panic attacks, and she noticed his depression too. He had 11 sessions with her and will now continue for another 11, this time for the depression.

It’s been 18 months now, of which almost a year was without sex and it still is. Does this make me sad? Not really. Yes, I miss it. A lot. But, I am a patient woman (I discovered) and I have the deep belief that Master T will heal, whatever that may mean.

You see, we don’t know IF he will heal fully. He’s a incredibly rational man… until it comes to his own disability. It took him about 3 months to use the walking stick I bought for him when he just started having problems with his leg. When we talked about coming to Eroticon I told him that I wouldn’t mind walking behind a wheelchair but he absolutely doesn’t want to sit in a wheelchair. He can get a pass for a parking spot for the disabled, but he is putting that off and might never get it. Why not? And why not sit in a wheelchair?

Because he’s afraid to get more and more disabled. To lose his independence. To lose his mobility. It’s a psychological process I can understand, but not feel. To me as a fully-abled person, I cannot feel what he feels. Sitting in a wheelchair will be no issue to me, but it is an issue to him. I am sad for him. Sad that he has to go through this. For once, my husband is not as rational as he always is. Oh yes, he can reason about this the same I can, that a wheelchair is only temporary and a pass for a parking spot can be quite handy, but the fear of being ‘more disabled’ is so intense that he literally panics about it.

That’s what I think has triggered the panic attacks he’s still having. The panic attacks might only stop once he has gone through the process of acceptance that some things might never be like it was 18 months ago.

My sadness doesn’t come only from mom’s passing. That’s a huge part, but Master T’s difficulties are a huge part of it too. And yes, there’s also a bit of sadness in me for myself. Life is not easy at the moment, but our love conquers all.

PS: I wrote this post on the Thursday night during our Eroticon weekend. I had so hoped being in a hotel would spark some of Master T’s sex drive but it didn’t. To my biggest surprise on Friday night, his interest was sparked indeed, and for the first time in maybe more than a year, he penetrated me. I am trying not to get my hopes up, but this light at the end of the tunnel is not that of the approaching train!

© Rebel’s Notes

Wicked Wednesday

24 thoughts on “Life… grief, depression and disability

  1. I missed this post, but wanted to come by to comment now. I thank you for your honesty here. My mother had some increased disability over the years. She resisted using scooters to get around the grocery store initially even though she struggled to make it around. It took many times struggling to get her shopping done before she realized she needed help.

  2. All the hugs and love to you! You are such an amazingly strong and resilient woman, and your love for others shines brighter than anything else.

    You are definitely my friend, and I’m honored to know you.

  3. I feel blessed to have met you both. I’ve met two amazing people. I knew about your mom, but had no idea of your sadness about Mister T. Back home I talked about it to my hubby and had to admit that I didn’t know what was going on. And that I didn’t have the nerve to ask. This post also makes me a bit humble. Because I realize that I was very open about the death of my daughter and all the affects that has have on my relationships and sexlife. At least this is one thing my hubby and I can work with and on. You have so much more to deal with in this present. At least we have no physical disabilities. I just have to get rid of the idea that my daughter is sitting on this cloud above and see all I do in the bedroom. Screaming: oh gosh no, mom! Gross!
    That’s disturbing, but with some rational thinking to overcome.
    I feel you and your love of your live. This charismatic man whom I learned to admire by his appearance, charm, politeness, even a kind of sexiness. And I say a kind of sexiness, because normally I only think there is one man sexy for me and that is my hubby.
    After reading this, I am positive that we can overcome our sadness and grief and the affect on our sexlife by that. Just because we are not depressed anymore, just afraid to be watched by a dead person and that she thinks we forgot about her.
    That, of course, need time.
    I wish you both all the love and strength. And know that I am only a few miles away.
    I really hope to see you again soon. And then I promise not to be selfish again about my loss, but have a great time with my hubby and you guys. Again: I’m sorry, but I just didn’t know. So you see that every amazing person has his/her own burden to bare.
    Love you dearly. XOXO

    1. No need to say sorry at all. I didn’t find it appropriate to talk about my mom or my sadness about Master T when you talked about your daughter. You needed to talk about her and that’s good. That’s the way we work through the bad things.
      I also know what you mean about thinking she can see you, knows what you do. I have the same with my mom, even though I know she cannot see it, but if she could, I believe she will approve. I’m sure your daughter will too as she wants you to be happy.
      We will see each other soon!

  4. It is clear what an amazing bond you have and that must aid your strength. I was in a wheelchair for a short time and then crutches for several months when I had an accident and badly damaged my knee. I was scared it wouldn’t heal – this is obviously nothing like as extreme as what Master T may feel regarding disability but for a moment I could relate as I was truly worried I would not be able-bodied again.
    It was so lovely to hug you and do see a light shining with regards to your Friday night interaction – good wishes to you both x

  5. Oh Rebel I feel for you and Mr T so much! I’m pleased that you had some pleasure over/at Eroticon, and hope it continues. Sending you lots of love and support.

  6. Marie, Meeting you and Master T was certainly a highlight of my weekend in London.
    Master T is a fabulous man and I truly enjoyed our conversations. Such a thoughtful and well spoken man with such good insights on many things. In one of our conversations he gave me some good thoughts that I will give some consideration to in moving forward with my wood turning. endeavors.

    It can be difficult coming to terms with ones own disabilities. I myself have 4, yes 4 bulging disks in my spine. Over time I have shrunk and in some way shape or form have some level of pain each and every day. Due to my back I had to give up kayaking and fishing which is something I loved greatly.
    Doctors have tried to push me to pain management for many years now and I refuse it as I have seen what it has done to others.

    It seems that Master T is at a point that he realizes he needs to take some steps to correct what is happening which is good. Other then say say I commend you for your patience, it is his journey and one he must come to terms with on his own and it does sounds as if he is getting there.

    Big hugs to you and again it was great to meet you both.

    1. Sorry to hear you are suffering too, John, and in pain. Pain just sucks!
      It was really lovely meeting you and Kayla too and I cannot wait to see you again next year!

      Rebel xox

  7. The patience you have is born of care and understanding, and the things you do – or do without – you do out of love, even when it’s exhausting. And you drive on, no matter how difficult the road, because somehow the motion feels like momentum – and moving, in any way/shape/form – becomes paramount, regardless of whether or not you’re actually getting anywhere.

    Or maybe that’s just me. Because I’m in a similar place on the care path and while my spouse is someone I chose with eyes wide open, and he does as much as possible to alleviate the various difficulties related to his disability, it does not take away the fact that sometimes things are just really.fucking.HARD.

    What is it they say? “Caught between a rock and a hard place”?

    It’s a lucky thing when the person who’s caught in a hard place has someone in their life to be their rock.

    You’re a rock, Marie.

    A rock star.

    I am truly amazed by all you do.


    1. Thank you so much for your words, Feve. I do what I know I have to do. No, that is not right. I do what I want to do because I love him. Because he deserves it. Even if he gets more and more disabled I will always be at his side. Even if it is Really. Fucking. Hard.
      Never forget that you are a rock star too!

      Rebel xox

  8. You’re correct that we can understand another’s pain and fear but never feel what they feel. You have both lived through tremendous loss. Your commitment and love is inspiring. Sending well wishes for you both.

  9. Oh Marie! And Master T.

    We are both travelling the path of increasing disability. Silverdrop is already a wheelchair user. So we can relate to what you two are going through. I am rather like your husband… when I first got a stick – 10 years ago – it stayed propped against the wall in a corner of the room for 6 months.

    Wishing you both well, as ever.

    1. Thank you, SD. I think it would have been a good thing if Master T could have met you this weekend. Maybe next year xox

  10. Oh Marie, I am so sorry you are both going through this experience. You are obviously so lucky to have each other, both thoughtful, patient and understanding. Hopefully the events of the weekend will as you say, mean that there is light at the end of the tunnel. I wish you both well xxx

    1. Thank you, Julie. We are always together and together we always make the best of everything, even bad situations. Our love carries us through xox

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