So many people I know suffer. It’s true. And it’s terrible.

Before you quit reading thinking, well that’s depressing, think again. It could happen to anyone. It could affect someone you love. That’s not depressing that’s reality. Ignoring it doesn’t make it go away.

Positivity is where I spend most of my time. Negativity I try to avoid. But reality and realism is where truth lies. Sometimes the truth is not happy and it is not easy but it’s still the truth.

I was often told not to dwell on hard things. To stay positive. I agree that being positive helps most situations but toxic-positivity where there is no ability to be honest about suffering, is almost as bad as toxic-negativity. Surely there is middle-ground-balance.

For a long, long time I have fought an illness that has not defined me but has tried to. I’m not alone in that. I see suffering every single day. Try as people might, they cannot always will it away, or cure it with good intentions. The illness caused me to narrow my life smaller and smaller until I hardly recognized myself and I absolutely could not rely upon myself or do what I love the most; be there for others.

I didn’t know I had lost hope. But I had.

When an illness returns time and again, worse and worse, it’s really easy to say ‘just be positive’ and really hard to actually maintain that day-in-day-out. You have to live with 3am vomiting and an inability to eat. You have to live with the despair that creeps slowly into your world and takes it over. Not being able to stomach a bite and watching yourself fading literally away. Ageing daily rather than yearly, losing control, losing safety, being UNsafe.

Today I did a thing. A big thing for me. I admitted I needed far more help than I had received. I admitted I couldn’t cope or do this anymore. I saw a broken system and me falling through the cracks. Just as I have seen friends over the years do exactly the same. There is no guarantee of wellness. There is no guarantee that you will be okay. It can be very scary when you are not and you don’t know what to do anymore and you have to somehow keep going because nobody is going to save you.

I called The Mayo Clinic.

I don’t have the money. I can’t fly. I can’t even have a conversation at 8am because I’m too nauseated. I can’t work right now at all. I can’t earn my own way in life that I have been doing my ENTIRE life. I don’t qualify for disability. I am living on borrowed time. I am watching myself fall apart.

I called the Arizona branch as that’s nearest to me. They turned me down. They denied me. They were very nice about it but it was a shut door. They said it was unlikely any of the Mayo’s (there are 3) would see me.

I fell to the floor. I wept and howled and thoughts of how I could drive my truck off a bridge flashed through my mind because I can’t live like this every day I actually can’t.

A strange calmness came over me, probably the kind of calmness that happens when you have nothing to lose and have given up. It felt weird. I was exhausted and it was only 9am. I picked up the phone and I called the Florida branch. Again I went through the long process, explaining, explaining, explaining. Trying not to sound desperate or to beg. They turned me down. They have a 3 year wait list that is closed in the GI department. They have lost half their staff post-Covid. They were very nice but they denied me.

I sat on the tile with my cheek against it and I felt my life flash before me, like a pack of cards. I saw where I was young and did not know what it was like to suffer physically like this. I remembered feeling hope. I remembered feeling whole. I picked up the phone and I called the LAST Mayo Clinic, the original in Minnesota.

I spoke to them and after about 1 hour where a voice in the back of my head kept saying ‘the others said they were all the same they were all going to say no, this is your last chance, it’s not going to ….’ the woman on the other end of the phone said: I am going to schedule you.

I have never ever been so glad in all my life as I was to hear those words.

They may not ‘cure’ me. It is possible a cure is too much to hope for. At this juncture I am realistic. I want to be functional and as well as possible. I cannot live unable to eat and throwing up or violent nausea 24/7 from 3am onwards every-single-day until I lose my mind. I have already decided I cannot live with that long-term as there is absolutely no quality of life and I am unable to do anything and it’s basically too horrific. If that makes me a wuss I’m okay with that because I KNOW MY LIMITS. I would never have been able to imagine this type of illness before I had it. Like most people I have experienced morning sickness, food poisoning, stomach issues, throwing up, but this was a fresh hell I didn’t know even existed. Again, I am not saying I have the corner on suffering; far from it. FAR from it. But for me this is the point where I can’t. And knowing that and hearing that they will see me, and TRY TO HELP was everything. It was a literal life-saver.

I have learned so much from this experience. I have learned that most people who say they care and are your friends, drop off when you get sick even if you were there for them. Same with family. That financially, illness ruins you. That mentally, illness ruins you. That safety is something we think we have until we haven’t and we live with terror.

August 14. Either I get driven up there or go by train as I can’t fly. I can’t even imagine. But I will go even if I have to sleep in the street or on a bus or sell everything I own. And I will pray that somehow this sentence that has returned, can be wrestled into something that doesn’t continue to steal away my life and my hope.

I didn’t know how much hope changes everything; this is such an example. Maybe all of us one day will run out of hope and know we are to die. It’s part of the human condition and is something we all dread to varying degrees. Hopefully some of us will just die and not have to face dying. But I have had too many friends who have faced dying to believe that’s always the case. In the case of facing dying I have no wise words at all. I’m as scared as the next person. But I’m not there yet and until I am, I want to fight but I had nothing left to fight with because I had seen every so-called expert here and done my best and it wasn’t enough.

I can’t afford to do this. I can’t afford not to do this. It is a profound moment for me of clarity and humbleness and fear and yes .. hope.

I hope you can make me well. I hope you can take away my suffering.

I feel like the child holding her bear in the darkness and hoping for all sorts of things that mostly did not come true but also not yet knowing all the horrors the world has in store. My singular goal in this life has been to love and help because it’s all I’m good at. Asking for help, asking for love, asking for miracles, I’m not good at that at all.

But I choose to hope. Partly because I can’t afford not to and I can’t think of the alternative and partly because the third call I made, they said yes; you can come and we will try to help you.

Simple? Obvious? Cliched? And yet, when you experience it, it’s like you’ve never ever felt it before. Because you haven’t. Because to lose hope and then reach out and get even an inch of it back, that’s something that doesn’t always happen and you can’t be prepared for the feelings you experience when it does.

Gratitude. So much gratitude.

If we ever think movie stars and sports stars and influencers are something to admire, let us never forget who really, really, really make the difference in this fragile life.

It is those who are able to give us hope. They are the heroes. They are the life savers. Because even if they can’t save us, they reach out and they try.

19 Replies to “Let me tell you, there is nothing cliched about the power of hope”

  1. I am SO happy for you. So very happy. I hope they can help you. You have a terrible illness and I cannot imagine what you have been through and go through every single day. I think you have been incredibly brave and strong. Thinking positive often comes from those who are not going through what you are. It’s so easy for people to say the wrong thing. I hope you find the help you need. Hope is a funny thing. Right now you have it…so hold on and count down the days.

  2. Once, at least one time in particular, my father’s lack of concern for what “experts” might say about whether a story was “age appropriate” brought to our bedtime reading a story that comes to mind now (often, actually). It was “The Old Man And The Sea” by Ernest Hemingway, not exactly the usual thing for a six or seven year old. It is a harrowing tale with it’s details of working the fish in that long battle with the marlin as big as that small boat, and the exhausted journey home with the sharks and barracudas having eaten all but the head. But he did make it home with the proof, not he prize catch he he had hoped for and financially needed, but with the honor of the warrior against impossible odds, and not to be called a liar. Near the same age, I encountered “Eldorado” by Edgar Allan Poe, and those two characters, the fisherman and the questing knight have been linked ever since through that final stanza; “Over the mountains of the moon/and down the valley of the shadow/ ride boldly ride/ the shade replied/ if you seek for Eldorado.” Sometimes, especially when hope itself seems foolish, even mad, to just keep boldly riding, or to just keep fighting that fish, is the thing to do.

    I find myself wishing I had a big comfy RV and the other means to take it on a road trip up and down the middle of the country. I haven’t been to either Texas or Minnesota in long time. Failing that, I don’t know how I can help, but please, let us know your needs. You have creative friends. <3

  3. Aug. 14 is now on my calendar and I’ve been researching rail/bus routes since of course Amtrak alone doesn’t make it easy. We will get you there, by hook or by crook. I have hope in abundance that this will make a difference. 💜

  4. THIS!!!

    “August 14. Either I get driven up there or go by train as I can’t fly. I can’t even imagine. But I will go even if I have to sleep in the street or on a bus or sell everything I own.”

    You will get there. You didn’t come this far, land an actual Mayo Clinic that’ll see you, to not be able to make it there.

    We will be in touch several times before you go. And I’ll be in prayer for everything to fall in line as it needs to; as it should. 🙏🏾💙

  5. I hope you can be and will be helped! Sending you healthy vibes!

  6. I really appreciate your support thank you very much I believe the Mayo is my best shot at getting a chance to feel well again. I feel awful begging but I also know I have to try to get there. Thank you for your kind words.

  7. Your faith in me and the ability for me to heal is sometimes the candle in the night for me Tre – thank you isn’t ever going to be enough but it’s what I have, and my life-long friendship – thank you for caring it means so much

  8. It would be incredible to see you of course – I know one day I will but I would prefer it to be when I’m not green like Kermit xbut maybe I can send you a hug because I will be nearer when I’m up there

  9. Andrew and thank you for donating to the GoFundMe that means so much to mea nd I’m so grateful as I really can’t afford it because of being so sick and not able to work or get temp disability so your help was so blessed thank you so much

  10. Gosh I think you would thrive if you did that – and I love that story – it makes me think of that film with Francis McDormand about people who live in RV’s when they are older because of the expense of life – did you ever see it? She won awards for it. It was harrowing but real.

  11. YOUR friendship is what I need and am lucky to have – that is my best blessing always.

  12. Thank you so very much, it was hard to do the GoFundMe but it’s the only way I’m getting there and I finally swallowed my pride and did it. In part thanks to friends like you who are so supportive, thank you SO much for that. For YOU.

  13. Thank you SO much Ogden. It was hard doing the GoFundMe but it’s the only way I’m getting there so it’s part of learning to let go of shame for asking for help.

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