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  • #350876
    Lewis
    Participant

    Hello everyone! This is my first post and I have a lot to share and context is important, so I will format it in a way that avoids a huge wall of text.

    1. My Background – I won’t give my whole life story here, but there are things that I feel are relevant. I’m a 35 year old man (I still look like i’m in my twenties, woo!) and until the start of 2019, I have done nothing with my life. I go into a relationship at the age of 20 with a girl with whom I lost my virginity. At the age of 21 I was a father to a son. 2 years later I fathered another son with the same girl. To cut this very short, I was addicted to smoking weed very heavily, I had no aspirations and I naively believed that ‘everything would be alright’, the world would hand everything to me on a plate. The relationship was bad, I was even violent on a couple of occasions. Everything that happened in that relationship broke me, I was broken for a long time. After another toxic relationship, in which I was constantly lied to and cheated on, I moved away from that area, got a job and a tiny apartment (or as we say here in England, a flat). I was still smoking weed everyday. I stole from where I worked to support my habit. I forgot to mention that this whole time I had been on anti depressants for chronic depression. The depression affected my motivation, as did my habit, and I had to leave the job. So after that, for years I just sat in this tiny apartment, jobless, aspiration-less, getting high, playing computer games and smoking my life away, I was filled with regret and self hatred for things that had happened, and the time I had wasted and that I was wasting. I had only a couple of friends (not including people I talked to online on the xbox) and I rarely saw or spoke to them, but two of them I still regularly keep in touch with now and they fantastic human beings and I’m very fortunate to have them as friends.

    2. 2019 – I think it was on the 6th of January 2019, that I was feeling morbid after having spent another new year on my own, smoking weed to hide and numb the pain, when I was on my xbox playing a game called sea of thieves. I was browsing the looking for group page, and I saw an avatar of a girl who was looking for people to play with. I joined her game and we got talking, she is from Spain, and we quickly got on very well together, within a couple of weeks we had made a mutual friend from Australia who we would often play with. We were very honest about ourselves and we learned a lot about each other in a short space of time, we became extremely close and started also talking on whatsapp, calling each other and messaging etc. As we were sharing our interests and beliefs together, I found out that she has a motor neuron disease, diagnosed as ALS but with different symptoms than you would usually see with that, which she had at that point for 8 years. She plays the piano, is an artist, photographer and has visited many amazing parts of the world, from Russia to China, Italy, Vietnam, you name it. I was fascinated by her and the strength she had with her illness. She inspired me and I started to learn Spanish, because it’s a beautiful language and I have always been good at understanding languages in terms of the structure etc. I also respected her for how she told me one day that she had been the victim of an attempted rape and sexual assault 2 years before we had met. She is very wise, sweet, affectionate and we became so close…

    …I like to write poetry, I’m not that great at expressing myself vocally, and in March 2019 she was ending her career in teaching fine arts at a university with a project about her illness and the people in her life that it also affects, I wrote a poem to be part of the exhibition for the project and she loved it. Around that time I was developing really strong feelings for her, and in April, I wrote a letter, which I emailed, about how I felt. I was scared of the reaction it could have on our friendship, but she spoke to me after reading it and said she felt like a teenager again (I was 34 and she was 38 then) and she wanted to come and see me. So about a week later she got a plane and flew to England. She was going to stay for a week. My mother picked me up on the day she was arriving and we collected her from the airport , before going back to my place we all went to a pub, the sun was out and we sat at a table outside, my mother offered to get us some drinks and she went inside. We were sat opposite each other and she is so beautiful, I looked into her eyes and I put my hand on hers, she held my hand tight and I told her how beautiful her eyes are. There was a real spark in that moment. So after a couple of drinks we went back to my place, my mother was flying to Cyprus the day after so said goodbye etc and the week began.

    There were some magical moments in that week, she instigated intimacy with me, at first I said I would sleep on the floor and she could have my bed, its a queen size bed but I wanted her to be comfortable and to not create awkwardness, she said it didnt matter and from there the intimacy began. She wanted to have sex with me and we tried a couple of times, but I was having issues and I had to get some viagra, and this was the first time in about 8 or 9 years I had been this close to a woman. The sex wasn’t very good, but it didn’t bother her and it didn’t bother me after a while, I would love to just run my fingers down her back while she feel asleep next to me and hold her in my arms, for me that was enough, on day day 3 I told her that I love her. I also had my first experience with her illness, the attacks she has, called dystonia, where she went into spasms and her back was paralyzed, I’d use all my strength to keep her from falling off the bed and hurting herself even more than the horrific pain she was experiencing. She even stopped breathing for 30 seconds on one occasion. On day 4, she said that originally she was going to be spending that weekend (she had arrived on a Monday) with some friends, and she was going to fly back home tomorrow. I really didn’t want her to go, I have so much to love to give, and we had such a real connection that I wanted to hold onto it, and to her, and never let go. But she left and flew back to Spain the day after, I experienced emotions of sorrow and joy, I cried a lot and I smiled a lot.

    I didn’t speak to her until the Monday, and the first few days we were talking as we always did but with a greater connection, until, she told me that she didn’t feel the same way as me. It hurt a lot, I told her that I don’t just sleep with anyone, intimacy to me means something, and if it doesn’t mean something then I won’t engage with it. She said those words hurt her but she also told me that she thought it would be better if we remained as close as we were but as friends, we were best friends at that point, and she said that she didn’t want to lose me or break my heart. The thing is, I’m a really sensitive guy, and I’m an all or nothing person and this did break my heart, but it wouldn’t be the first time.

    After she left I made changes to my life, I started going to the gym, I stopped smoking and in the months after that I would change my diet, I wanted to be a better person.

    4 weeks after she had left England, I flew to Spain and I spent a week with her, I hadn’t been out of England since I was 16 or 17, ironically, the last place I had visited was La Manga, in Spain. I stayed at her place for the first night and the last night, the days in between she had booked us into a really small but nice hotel, right on the beach of Las Islas Menores, right next to La Manga. I also found out from her that she had actually worked at the hotel I had stayed in back when I had first been to Spain all those years ago. I loved every second of the time I spent there. We had sex again one night, and again it didn’t go very well. The day that I was leaving we were talking about our situation, and I was saying to her, ‘why can’t you take a chance with us?’, ‘why are you kissing me, holding me, sleeping with me if you don’t want something more?’.

    After that she said outright that it’s better for us to stay friends and be as close as we have been, our friendship is special and she doesn’t want to lose me. I told her that I accepted that, but I didn’t agree with it. I think I was lying to myself as much as I was to her. The few weeks after she went into a bad depression, it happens a lot with her illness and it’s understandable. I REALLY wanted to see her again, so I went back to Spain in July. We shared a bed, we we would hug, she would let me hold her at night but she wouldn’t let me kiss her. There was a lot that happened on that vacation, but I realise I have written a lot and there’s still more, so….one night we had both woken up in the early hours of the morning, lying in bed we talked about random things for a few minutes, and there was a few minutes of silence, she asked me ‘don’t you have anything to say?’, I  said ‘I have a lot to say, but you don’t want to hear it’, to which she replied ‘about the same subject?’ (the subject obviously being me and her being together in a relationship). I answered ‘yes’, and we had an argument, I was really upset and my depression kicked in, I felt suicidal. I asked myself, how could someone treat me this way, tell me that I’m beautiful, that I’m a good person, share intimacy and then they pull the rug from under me leaving me flat on my back and then feeling like the rug itself?

    We sorted it out, for months we talked , sometimes for the whole day over the phone or online, I would write poems for her and about the way I felt. We would watch movies together, play games with our mutual friend from Australia, we shared everything, how we were feeling day to day, literally everything. In those months, I realised that soon I will be 35 and I have nothing to show for my life. I don’t want to exist I want to LIVE! I still look young, I still feel young, there’s so much I want to experience and do. With her help, I realised that I could teach english as a foreign language, I had never finished my degree in english language and literature, I abandoned it to get high and become a father with a woman who has to this day never matured and is a disgrace of a mother and a human being (foolish, I know). So, I did a TEFL course online. After completing it and passing with a merit, I understood that the course hadn’t provided me with anything but the theory. So I looked into doing a CELTA course (Cambridge English Language Teaching Adults).

    I had the vision in my head, I would move to Spain, I would learn Spanish, teach English and I would be close to the woman who I was head over heels for. Even if we weren’t together, I could be close to her and maybe she would change her mind. People often asked me, ‘are you doing this for her, or for yourself?’, I wasn’t honest at first, I said it was for myself. It wasn’t then, but it certainly is now.

    The whole time throughout these processes she was there for me, encouraging me, supporting me and she was proud and envious of the changes I have been making in my life over the last 14 months. And I too supported her, I always listen, if someone needs to talk I will always listen. We kept each company in our good and bad moments. I often found it hard to express the importance of this, even in my poetry.

    3. 2020 – So in January this year, mi Angelita, the woman from Spain (I realised I haven’t used her name yet, but I always call her that, it means ‘my little angel’), began a new experimental treatment for her ALS. She was scared and nervous because it would mean travelling 50km to the treatment and then back Monday to Friday each week until September this year. I supported her as best as I could from so far away, in the way we always had done for each other. I’d had an operation myself in October 2019 and without her being there on the phone with me at 4-5am every morning through recovery, it would have been a lot harder.

    In February I started using dating apps. I arranged a date with a woman and when I was telling mi Angelita about this, I could tell she was jealous. She told me ‘I don’t want you to fall in love, because then you won’t come to Spain’, I said to her ‘ I already have, and you know this’.  I didn’t end up going on that date, I spent the evening with her on the phone instead, talking about her treatment and keeping her company. About 2 weeks later I arranged another date with a different woman this time. Before I went on the date, I was telling mi Angelita about it, and said these exact words ‘I don’t want you to fall in love with anyone else because I don’t want to lose what we have’.

    These words confused me a lot, she told me so many times that she doesn’t want to try and have a relationship with me, but yet she doesn’t want me to fall in love with someone else because of what we have (???????). I interpreted this as though maybe she is waiting, she is waiting for me to move to Spain and then maybe we could try. I interpreted it as that she does have strong feelings for me, I was very confused.

    On the 9th of March this year, she had to spend  weeks in hospital for a clinical detox, due to the crazy amount of medication that she had been taking or so long , which was also changing all the time, it was part of her experimental treatment and she couldn’t use her phone or have many visitors because that part of that hospital was also for drug addicts etc, and it could mentally affects patients there who are required to go through these treatments. March the 13th, a Friday, was her birthday and also the first day of me beginning the CELTA course! I was nervous, excited and also sad that I couldn’t speak to her throughout this, as it was a month long intensive course that would give me the teach training I need to begin a career (finally). So I began the course, and even though it was daunting at first (because intensive is a HUGE understatement) I began to finally believe in myself, I can do this, with the right training I can really do this and I can start to have the life I want. I don’t care about money, I care about love, beauty in all it’s manifestations, learning, passion, music, art, people. Everyday I would send her a message asking how she was, telling her that I was thinking about her all the time, and with the COVID-19 situation in Spain, how worried I was about her. Unfortunately the school where I was training had to close just a week into the course, and I won’t be able to resume it now until perhaps September. But I’m still motivated, I’m out of my comfort zone and I’m loving it.

    Now, it turns out mi Angelita had to come home from the hospital early because of the COVID-19 situation, she had been home for 3 days until she finally got in touch with me. And I don’t know what it was but she seemed…distant, she was very abrupt with me, and one night she went mad at me saying things like ‘All of your messages were about YOU when I was in hospital, do you ever think about what I’m going through?’, I was like ‘Yes! Of course, in every message I was asking you to let me know how you were doing, what was happening, every free second I had in that week I was thinking about you!!’. There was more but I’ve written so much already…..Anyway, the day after I sent her a message saying that she was really unfair and recently she has become very selfish and kind of controlling, I didn’t want it anymore and I wished her luck with everything and said goodbye. I didn’t want to, but I felt I had to. That day she sent me a message saying ‘you can’t leave it like this, I can’t stop crying please talk to me’. So I did, and we sorted it out, she told me again that she didn’t want to lose me and that she needed me. A few days later, on the 29th of March, she was rally harsh with me again, and the morning of the 30th, she sent me a message saying that she was sorry for the tone she used, she was feeling really bad about herself and we have to fix this…

    …On the 30th of March, it all came back, we argued, we cried, she suggested we needed a couple of days to ourselves to reflect on things, I brought up my feelings for her and the whole time I just wanted her to love me like I love her. I was feeling suicidal. I told her this, and she made me promise not to do anything stupid. A couple of hours later I was still crying and I felt destroyed, in these arguments it felt like she had thrown back everything I had done for her right into my face and it meant nothing. I sent her a message saying ‘I broke the promise, it’s the first but it will be the last’. I have had Type 1 diabetes since I was 2 years old, and I injected myself with an overdose because I just wanted to die. I didn’t want to keep feeling such strong love for someone who seemed to be telling me confusing things about the subject all the time, she is my best friend and I want more, but she tells me that many times over these 14 months she has felt more for me but hasn’t told me because it isn’t right. It messed with my head, I was overwhelmed and I wanted it to end, I would rather die having such strong love for someone, than to live and keep going through these up and downs, which were always to the extreme……

    ….She called my mother and told her what I did, the paramedics and police were involved, they sorted out my blood sugars and left me alone for a while. I called her, and we spoke for about an hour, half way through she said she didn’t need this in her life and she doesn’t want to speak to me anymore. That absolutely destroyed me. Everything we shared, means so much to me. But I understand, with her illness and her own mental problems she doesn’t need anymore stress. I had been strong for so long but then I broke, I was broken.

    I haven’t spoken to her since then. Our friend in Australia suggested a solution, we need boundaries. He suggested we write to each other, ‘keep it simple’ he said, ‘start by writing down what you expect from a friendship, then go from there’. Last week on the 15th of April I did just that, and I also wrote another poem for her. I had no response until she sent me a voice message yesterday morning, she said that she read through the letter quickly and didn’t agree with some of the things I had written, and right now she needs to stay in bed for a week due to her treatment etc. She said that she will read it again and that we should talk about in-depth.

    A few days before I wrote the email I began meditating, I realised that even though I had made many positive changes in my life I was still a low vibration person. So for almost 2 weeks now I have been meditating, and trying to raise my vibration slowly but surely (under the lockdown circumstances it’s difficult but doable).

    And finally…to the question, where do I go from here? She really is my best friend, I trust her with everything, she knows all my strengths and weaknesses/insecurities etc. I genuinely don’t want to lose her either. She means more to me than I can put into words, if I hadn’t met her, I would most likely still be smoking weed everyday, doing nothing with my life, but she gave me the inspiration because she saw the good in me, ‘there are no words to express how much you mean to me’ is something she once told me. And I feel the same for her. I thought we could be soulmates. In a way think we still can be, but perhaps not in the way that I want. The idea, the vision, the dream I was chasing. It still eludes me. How can I rebuild this friendship? Will it ever be the same? Will it ever be more? Will I find what I deeply desire and have done since my teens, true love?

    Where do I go from here?

    #350928
    Anonymous
    Guest

    Dear Lewis:

    mi Angelita suffers from Amyotrophic lateral sclerosis (ALS). Wikipedia reads that 90% of all cases begin after the age of 45, and 1% begin before age 25 (juvenile ALS). People who develop young-onset ALS are more likely to have a slower progression of the disease.

    Individuals affected may ultimately lose the ability to initiate and control all voluntary movement, although bladder and bowel function and the muscles responsible for eye movement  are usually spared until the final stages of the disease. Although the initial symptoms and rate of progression vary from person to person, the disease eventually spreads to unaffected regions and the affected regions become more affected. Most people eventually are not able to walk or use their hands and arms, lose the ability to speak and swallow food and their own saliva, and begin to lose the ability to cough and to breathe on their own. Difficulties with chewing and swallowing make eating very difficult and increase the risk of choking or of aspirating food into the lungs.

    Most people with ALS die between two and four years after the diagnosis.. and about 20% of people with ALS live between five and 10 years after symptoms begin. (Cosmologist Stephen Hawking lived for 55 more years following his diagnosis, but he is considered an unusual case).

    “Cognitive or behavioral dysfunction is present in 30-50% of individuals with ALS… Repeating phrases or gestures, apathy, and loss of inhibition are frequently reported behavioral features of ALS…  About half the people who have ALS experience emotional lability (exaggerated changes in mood or affect.. Sometimes the emotions expressed outwardly are very different from how the person feels on the inside.. The person experiencing emotional lability usually feels like they do not have control over the emotions).”

    Her disease is very, very serious, and the prognosis is poor.

    You asked: “How can I rebuild this friendship? Will it ever be the same? Will it ever be more? Will I find what I deeply desire and have done since my teens, true love? Where do I go from here?”

    I will be glad to communicate with you further so that you will be able to answer these questions yourself. For that purpose, I ask: do you know the onset age of her disease; are you aware of how serious her disease is, that no one with this disease gets better over time, and that she is highly likely to need hospice care within months or a few years from now?

    anita

    • This reply was modified 4 years, 8 months ago by .
    #350938
    Lewis
    Participant

    Hi Anita, thank you for responding, yes I am fully aware of how serious her disease is, I have seen how it affects her, when she came to stay with me we went to the cinema one day, and 15 minutes into the movie I virtually had to carry her out of the cinema because one of her legs became paralyzed. She was first diagnosed at the age of 30, she is now 39, ALS might not be the correct diagnosis but it’s the closest thing the doctors where able to label it as. She has had many problems with her limbs, she used crutches for a long time until she started the experimental treated, which helped with that, as well as paralysis in her arms, eyes and tongue.

    Over the past 3 months one of her lungs has stopped working 4 times, and recently she has had very bad difficulty breathing in that time. In one of the recent arguments, we had to stop because she was struggling to breath whilst we were talking on the phone. It really hurts me that she has to live like that. I know it will kill her, she has been getting worse since I met her, but it doesn’t stop me from loving her the way I do, I can’t save her, nobody can. She accepted that a long time ago, and I do too. It does make her suicidal sometimes. I fully acknowledge and take responsibility for my actions on the 30th March, I massively overreacted and I let my emotions take over. It was selfish and irresponsible, and I let myself and her down, especially considering the progress I have made with my own personal development.

    #350950
    Anonymous
    Guest

    Dear Lewis:

    “Where do I go from here?”

    1. Continue your personal development.

    2. Get involved/ improve your involvement in your children’s lives, so that you are a better father to them. If their mother is neglectful or abusive to them, legally and practically protect them. Otherwise,  do your best to get along with her for the purpose of participating in your children’s lives in a way that will benefit them.

    3. In regard to mi Angelita:

    “How can I rebuilt this friendship:

    1. Resolve to do her no harm. She has enough of a struggle in her life, she can’t handle any more struggle. No matter what she says or doesn’t say to you, do not react angrily while in her presence (online, on the phone, or in person).

    You have the right now and in the future to limit or end contact with her, but if you choose to have contact with her, and for as long as you do, see to it that none of it includes angry talk or action on your part, expressions of suicidal ideation, or anything that will cause her anxiety on top of what she is already experiencing.

    2. Expect this friendship to be time limited as her symptoms worsen to a point where she will not be able to engage in a friendship, or any kind of a relationship with you.

    3. Demand nothing of her and be willing to give her more than you receive.

    “Will it ever be the same? Will it ever be more?”- if it will be the same or more, take it as a gift, a time limited gift, and treasure this gift, for as long as it lasts.

    “Will I find what I deeply desire.. since my teens, true love?”- you already found this in her, this is why you started your personal development, inspired by her true love for you.

    Take in her true love for you, absorb it, let it sink in and let it encourage you as you proceed to make better and better choices, making your life meaningful, as a man and a father.

    In the future, you may get involved with another decent woman who will love you and who will be healthy enough physically and emotionally to carry on a love relationship with you.

    For as long as you are in mi Angelita’s life, be good to her.

    anita

    • This reply was modified 4 years, 8 months ago by .
    #351032
    Lewis
    Participant

    anita

     

    Thank you for your concise wisdom, an objective opinion is exactly what I need, I think both me and Angelita are/were very much emotionally invested in each other. She even told me many times ‘we rely on each other too much’, and I accept that she needs time to process everything and will respond to me when she is ready.

    I really appreciate you taking the time to read through such a long post, and I’m grateful that I have access to this forum. I will post here again if/when I am able to talk to Angelita again.

    Peace and love.

    #351104
    Anonymous
    Guest

    Dear Lewis:

    You are welcome and I am looking forward to reading from you again. I read more about the disease, ALS, being curious about it, and I thought that you are likely to share my interest, I thought it won’t hurt if I share the following with you. You are welcome to not read the following, of course.

    wikipedia: 90% of ALS is sporadic, which means that there are no family members with the disease. The defining feature of ALS is neuron cells dying, both in the brain and in the spinal cord. This death of neurons start in a single location and spread from there, which means more and more neurons die over time, and as a result, more and more muscles no longer operate.

    There are other diseases that are caused by neural deaths aka neurodegeneration, all are incurable and involve a progressive degeneration: Parkinson’s disease, Alzheimer disease, fatal familial insomnia, and Huntington’s disease. These diseases are similar on a sub-cellular level, meaning the neurons are damaged and die in similar ways.

    * I personally wonder if severe anxiety in early life contributes to the onset of these diseases at an early age, such as in the case of Angelita. But what is certain is that neurodegeneration causes anxiety. ALS News Today: “Many ALS patients also experience anxiety and depression.. As in any serious illness, ALS has a huge impact of a person’s life as well as the lives of their family members and caregivers… Treatment is built on a combination of approaches, which include therapeutic counseling, and antidepressant medication… For the short-term treatment of anxiety, patients might be prescribed benzodiazepines in addition to cognitive behavioral therapy (CBT). CBT involves learning different ways of thinking, behaving, and reacting to anxiety- causing situations.”

    The Mayo Clinic website on ALS: “As the disease progresses, ALS causes complications, such as: breathing problems: over time, ALS paralyzes the muscles you use to breathe. You might need a device to help you breathe at night.. The most common cause of death for people with ALS is respiratory failure. On average, death occurs within three to five years after symptoms begin. However, some people with ALS live 10 or more years. Speaking problems: Most people with ALS develop trouble speaking. This usually starts as occasional, mild slurring of words, but becomes more severe.. Eating problems: People with ALS can develop malnutrition and dehydration from damage to muscles that control swallowing. They are also at higher risk of getting food, liquids or saliva into the lungs, which can cause pneumonia. A feeding tube can reduce these risks and ensure proper hydration and nutrition. Dementia: Some people with ALS have problems with memory and decision-making.

    I then read about perhaps the most famous ALS patient Stephen Hawking (1942-2018) in Wikipedia: in 1963, at the age of 21 he was diagnosed with ALS. He died at the age of 76, after living with the disease for more than 50 years. At 20, a year before his diagnosis, he met his future wife Jane, and the two got engaged to be married two years later, a year after his diagnosis. Hawking later said that the engagement gave him ‘something to live for'”. They married a year later and had three children born when Hawking was 25, 27, and 37.

    When Hawking was in his late twenties he began using crutches and first used a wheelchair in his late thirties; at that time his speech deteriorated significantly. At 43 he required a nurse 24/7 and nursing care was split across 3 shifts daily. At 48, he told his wife that he was leaving her for one of his nurses, and moved out of the family home. He divorced his wife five years later and married Mason, his nurse, declaring: “It’s wonderful- I have married the woman I love”. There were allegations of Mason physically abusing and bullying Hawking. 11 years later he and Mason divorced, and Hawking resumed closer relationships with Jane, his children, and his grandchildren.

    By his early 50s he was unable to use his hands to operate a wheelchair and by the age of 62 he wasn’t able to use his hand to control his communication device, so he used his cheek muscles with a rate of one word per minute. Near the end of his life, he experienced increased breathing difficulties, often resulting in is requiring the usage of a ventilator, and being regularly hospitalized.

    anita

    • This reply was modified 4 years, 8 months ago by .
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