Sometimes things happen that are beyond your control. Bad things. You can face them, try to deal with them, or you can hide in denial.
My wife, Anne, has a number of illnesses and has been finding things increasingly difficult since the end of last year. We haven’t been out socially since New Year. In fact the only times she has left our home since then have been medical appointments.
She has always been strong-willed: that is what has gotten her through this far. Through traumatic events, through heart attacks, through cancer treatment. Through all of that she has kept going. When she suffered necrotizing fasciitis in her spine resulting in major surgery and it was not certain if she would ever walk again she never gave up, pushed herself and regained her mobility.
But there are limits. She saw her doctor earlier this week, and he was in tears as he told her that, basically, there was nothing that could be done beyond adjustments to her medications. She has emphysema and cancer, either of which can be fatal. But it is her heart that is the weakest link. It is most unlikely that she will see me complete my gender transition to fully become the person I am inside.
She who has always handled fear face-on, fighting with all her strength, has little strength left. She is truly afraid, not of dying, but of losing what independence she has. She copes with her pain very well, rarely becoming angry or upset. She hates to be an object of pity and hates to think that she will have to rely on others, primarily me, to care for her when she is unable to care for herself.
She has become afraid at the thought of going out socially. Afraid that people will show pity or treat her differently. That they will see that she looks ill.
These past few days since she saw her doctor she has been trying to face the fact that her illnesses are getting the better of her. Her years of denial have come crashing down and she is finding it so hard to accept the stark reality of her situation. To face the overwhelming probability that she will never feel better, that she will deteriorate over time. To face the fact that she is mortal, that the clock is ticking, and that her best days are all behind her.
She draws strength from her faith — she is Catholic — and that is a great comfort to her. She also finds comfort in my presence. I can’t make her better. I can’t take away the pain or ease her suffering. I can only be here so that she is not alone.
My Autistic Dance 
She is lucky to have you. I am so sorry that both of you are enduring this pain. I don’t know Anne, so while I wish the best for her as one human being hopes any other human being will not suffer, I am thinking of you Alex and thanking you for sharing yourself so honestly with your wife, yourself, and our community. I hope that when you need support in this you can both be there for Anne and also seek support from those of us who are always here to listen and love.
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(((Nattily))) This means such a lot to me. Thank you for your compassionate kindness.
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I’m so sorry for her pain and for you having to see her in pain but I greatly admire the strength you both have. I have so much respect for anyone able to remain strong in situations like that. You are both amazing people.
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Thank you very much. I’m not sure we’d describe ourselves as amazing, but our relationship is very strong (after some difficult times over the years) and that helps immensely: we support each other.
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I am so sorry. You are both very brave. xo
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(((Bunny))) Many thanks. 🙂
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I knew you were off work but didn’t know why. I think I agree with the previous poster that called you both amazing. We all have our troubles and sometimes think we are doing well to cope but I am often brought up short by reading other people’s stories about how they are coping in much more demanding circumstances than mine and I feel humbled, do I salute you both for your strength.
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Thank you Ian, much appreciated by us both.
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Sending love and compassion and wishing I had better words…
Please know that you are both in my thoughts… and you have a strong community of people who care.
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(((Leah))) Your words are more than adequate, and it is a comfort to know that we have support.
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So sorry to hear this, Alex. Wishing you and your wife the best in coping with this, and please know that I’m always here if you need to talk.
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Many thanks. You have been and continue to be a wonderful friend. xxx
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I’m sorry this is happening. I hope the medication adjustments help her be more comfortable. Like autisticook, I’m willing to be a sympathetic ear if you need one.
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Your kindness is a comfort to us. Thank you. x
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All my love, there is nothing worse than watching someone fade away before you. I hope it all goes well for you both.
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Thank you very much, (((Steffi))).
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To say this sucks majorly is quite an understatement. I am so sorry to hear this. I hope there’s medication that can help her be relatively comfortable and that her faith continues to give her strength.
This is going to be really tough for the both of you, and I’m glad you have developed a better bond recently. I wish both of you a lot of strength. I also hope that you’ll manage to do some things that are not illness-related, to relieve some of the stress, like a holiday. But I can imagine her not wanting anyone to see her, I´d feel that way too.
Remember you´ll always have this community to fall back on!
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Thank you very much (((Petra))). The bond we have is stronger than ever and together with the support from you and others in this community we feel we have backup. We do enjoy our time together as much as possible; there is more laughter than tears.
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Anne wants to add that she loves your message. You really understand it.
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Alex and Anne, you really do have my love and empathy here. If prayers from a Jewish boy would be appreciated, I’m more than happy to start including you both in mine.
My more practical side wants to suggest you get in touch with Adult Social Care if you haven’t already. They are a great help to me and they *do* help people who don’t live alone. I’ll be writing a blog post about them soon but please feel free to contact me via the contact page on my blog if you want to talk about it.
Much love,
Liam
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((Liam)) that is so kind of you. We would be honored to be included in your prayers. Love to you.
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I’m so sorry for your troubles.
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Thank you for your compassion. 🙂
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I wonder what comfort you each may have in reading? While thinking of you both, I remembered escaping in that way myself.
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Thank you Bob. We take comfort in each other’s company, sharing time together.
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I am so sorry to hear of this. I send my love to you and your wife. I will be thinking of you both.
Lori
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(((Lori))) Many thanks. Love to you. x
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Oh, Alex, I’m so sorry. Sending thoughts of strength and love for both of you.
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(((Cynthia))) Thank you very much. Love to you.
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Alex, I’m terribly sorry to hear of this additional storm for the two of you to weather, particularly knowing the untimely and unpleasant end that awaits. Based on what I know of you and Anne through reading your beautiful posts, you will both be the best supports available for each other. As the seasons turn, I wish you both much love, as little pain as possible, and at least a few more wonderful times together. You both are (and will continue to be) in our thoughts and prayers. In peace… kent
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